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Oluwa
01-06-2008, 02:36 AM
This year I decided to live in denial and believe I don't have IT. On the first day of this year I said...I did it, I done it..lived a life of Lupus. I am over it. Like it was a resolution that I can achieved. I was going to stop all drugs except the Protonix but my husband pleaded and well, reminded of the last doosie of a flare that lasted for over five months. So, I swallowed a Plaquenil too.

I've stopped the Cymbalta though. I wondered how can a pill, that takes one so long to adapt to..the side effects..can it really be that great for me physically. Emotionally numb, eyes glazed, pupils like saucers, the continuous yawn, mouth feeling like I was gnawing on a deflated balloon. The Gumby effect. At first wired like a Jack Russell who drank espresso...then jazzed, elated about life...then down to a bump on a log a month later when I doubled the dose..comatose. Withdrawals lasted for 5 days...I was fortunate it was only 5 days from what I have read about going cold turkey on Cymbalta. I take my recommendations back...

When I had first begun this thread, eight months ago I was lost, bone dry on hope..as time past and posts filled pages after pages I regained hope. I haven't lost hope...I just quit Lupus. I am tired of it like an old tote bag. Only I can't throw it away. If only we could.

The life of IT. Frankly I am tired of IT. Living in a pretend world for now...like dress-up. I can dream, eh...for awhile.

Happy New Year...looking for great things in oh-eight.
Love,
Oluwa

P.S..it was the milk....

Saysusie
01-06-2008, 02:54 PM
Oluwa;
Oh, how I understand your frustration, your hatred of this disease that seems to permeate every inch of your life, your wanting it to be gone and so wanting to live as if it had gone. I truly understand.
I am not going to make any judgments about your decision at all. I just want you to know that we are here for you. We want to help you, whatever decision you make, and we want you to know that you are never alone. I know the daily pain, aches, sickness, fatigue, and depression of the disease are more than most can cope with. Then, to have to deal with the debilitating side-effects of the medication on top of the symptoms of the disease, it is really too much to bear and to have to look forward to every day! We all know and understand this all too well. And, so, we understand where you are and how you feel.
We are here for you, whenever you need us......always!!

Peace and Blessings
Saysusie

Faith
01-06-2008, 06:27 PM
Hi Oluwa,

Happy New Year!! I have missed your wonderful humor and comments on the board over Christmas. You really help many people on the board; suggestions and more especially with coping mechanisms.

We all know how you feel.

We are always here for your and I hope you have a painless and acheless year in 08. Please drop in to say "hi" once in a while.

Take care & God Bless,

Faith 8)

cheryl_v
01-06-2008, 06:59 PM
Glad your back, you were missed by many including me. Hope your new attitude helps you through the new year. Good luckand bst wishes :D

the_librarian
01-06-2008, 10:14 PM
Ah, Oluwa...I've been MIA myself lately, but still thinking of you all the time. I made a similar resolution (sort of, I mostly don't make resolutions.) I've vowed to focus on other things. I am going to try to start a family in 08, I'm not going to worry so much about not working and focus on those things within my control. I'm going to be honest about my feelings and my experiences and stop letting IT control my life. This is easy for me to say right now because I've been virtually flare free since about a month after stopping work. I'm not out of the woods and never will be, but that is OK.

I've missed you. I miss all of your moods and hearing all about it. I know you've emailed me some and I've emailed back, but in the not working, I'm spending less and less internet time.

I've missed everyone. I too came here in despair about the same time you did and somehow I'm trying to just incorporate IT into my life. I know things have changed, but I'm on an upswing so I'm going with the flow. I know that bad times will come again, but we can do it together. I read the boards when I'm on and I gather so much strength from all of you.

I hope everyone has a wonderful 2008 and many years to come. This is the first board that I've ever felt strongly about. It is so wonderful to know somewhere, out there, others know what this life is like.

I will check back in soon. Until then everyone take care. You are all in my prayers.

the (non-practicing) librarian

cheryl_v
01-07-2008, 05:56 AM
Hello Ashley, wanted to wish you luck for the new year and on starting a new family. It's alot on the body, but so worth it. I agree with the way you feel about this board, I too looked for a long time for a place of understanding and comfort like this. Good Luck to all in the new year, may we all have less pain :D .

Oluwa
01-07-2008, 10:29 AM
A new year. 365 1/4 blank days. All mine, all mine Oolala, as I rub my hands...Fresh start, changes, tune-ups, goals to attain, accomplishments to be achieved. Isn't it funny how one day, one-one-oh-eight can stir up such optimism? Like having a clean crisp sheet of 20 lb paper and a box of Crayolas crayons to color it anyway you want. Imagine anyway you want....ah...

My dream, a little dream...I've created a private cult, trying to brainwash myself believing I am well. I want it so much.

I want to pound my feet for miles on my treadmill and ache from the wrong shoes. I want to plant bulbs, breathing the cool air while the sun warms my face, arms and legs and my pores open to release my sweat. I want my calves to ache from dancing in 4 inch stilettos. I want my nostrils to be obstructed from a cold. I want the rashes to be from poison ivy. I want thinning hair to be from a bad hair dye. I want muddle thoughts and confusion from too much libations. I want a headache to be from a brain freeze. I want to be exhausted from cramming too much stuff in a day, wanting a day to be 36 hours. I want a red lumpy face to be from a reaction to Estee'. I want depression to be from PMS.

I want it all to be for a reason... and not a mystery. Reasons... I can fix those. Mysteries....I cannot. I wonder how long my dream, my wants can last living it? A month, two weeks. Pessimistic? Or reality?

Todays list...
Plan a new bedroom palette. Has anyone seen Pottery Barn's catalog...wonderful celery greens, citrus oranges and poppy reds.

Twenty minutes on the treadmill to a channel of the NH Primary, Caucasus or debate. Like a candidate they say no wrong, dislike one everything they utter is wrong. I remain objective. An Independent. I'm still looking for the one trying to see the truth past the media's spins. Searching for each candidates truth behind their gestures, tones and eyes. Soon they will be here trampling into South Carolina...maybe I will attend a few rallies and debates and feel their hearts, aura...not the Finnish Aura moldy cheese....

Ah, box up the holiday decor.

Pot the plants I brought back from Florida, my fathers beds....hoping the deep freeze stays in the Arctic. My Sagos around our pool...seem to have lost their lives over the weekend. Hopefully new branches will emerge.

What's on your lists?

Everyone...When I am strolling about through my life and when I lay my head to rest, I think of everyone who I have read...words I have admired on my screen. To read vulnerability..I thirst. I hunger for wellness. To read how we quench one another with our words. To uplift. To heal the spirit, the mind and body. You all have been good for me too. You are just a desktop icon away...denying Lupus and not you guys.

Ashley, out of sight, out of mind...no way. Moods, indeed I've had many. Having IT is a full time mental job, eh? We can keep our conversations to the board, so no one feels pressed.

Tata..love,
Oluwa

mnjodette
01-07-2008, 05:04 PM
Ashley, I wish you well in your quest for motherhood - and I'm glad to read you've been flare-free...that's a really great way to begin the year!

Oluwa, I share your dream. Even after all this time, I still wake up each day with that tiny voice in my head saying "they made a mistake...it isn't lupus after all...it's just _________ (you-fill-in-the-blank)! :roll: Call it delusion, denial, defense, de-whatever...sometimes it just feels good to pretend IT isn't real, doesn't it?

We're all here for you - here for each other - for the duration. Sometimes it's OK just to stop in and read and sometimes it's good to share what you're thinking. I'm glad you're part of our 'family', Oluwa.

Jody

Oluwa
01-07-2008, 10:18 PM
Ah, thank you Jody and I am glad to be apart of it too. I am happy you are here too. I feel your kindness as I read your posts to me, to others...it is a nice feeling. Thank you.

It is wonderful to find a place where we are accepted, rashes, scabs, moans and all. I've circled the drain many times, last being during my holiday trip..that is when I decided deny, deny I even met Lou and his cronies or is it Louise.

This week it is just a bit of the bug that has been going around.

Good night..I can't wait for my dreams to begin..they have been so vivid, so real... so memorable lately. Many about my Mum. I feel so loved and warm when I wake. I miss her. Sometimes the missing is like that of a little girl being left with the sitter for the first time. When we were little we use to chase after her car when she went to the city without us. I would go to the end of the driveway and bawl. My older sis would run down the street, as the tail end of the car got smaller and smaller and disappeared in the horizon she'd then collapse on the side of the street.

Crazy, eh... kids running after a car like a chasing barking dog...

Sweet Dreams,
Oluwa

the_librarian
01-08-2008, 12:01 PM
Oluwa, et al -

Thank you all for your warm wishes and hopes. It warms me today to read your posts.

Denial is such a funny thing. Beautiful really in so many cases. I'm in denial about my denial (though it may not seem so here). I have not actively thought of denying the lupus, but I started my year out like many others, plans to go to the gym and work out even if only a few minutes. I'm planning new projects and insomnia is my artistic playground. Instead of fretting about the lack of sleep or reading until I'm tired, I'm writing and sketching. I know that the light of the computer doesn't help my insomnia, but I'm hunting for jobs to do from home and hopeful, oh so very optimistic about the sunbathed future.

I'm still being wrapped weekly. We are shifting focus away from mourning IT & career to family & relationships at my prompt. So many undrawn familial boundaries to sketch and erase and try again. Working so hard to create something lovely, ever the dissatisfied artist.

If my husband and I are fantasia, the rest of my relationships seem to to be roadrunner and coyote. Where is ACME when you need an anvil?

Happy days, my cyber companions...

Ashley

the_librarian
01-15-2008, 08:32 AM
Oluwa:

How is the denial working for you? Mine is actually going pretty well. I'm still tired, but pushing through in many instances. I allow myself one day a week to just rest completely (because I'm tired from all the activity...convince, convince, convince.)

I am still thinking about you all the time and hope you are doing well. How are things with you and your husband? Tell me more about your trip to Florida...

Things really are looking up. I'm focusing on home and family and that seems to be keeping my spirits up. I'm also focusing on eating healthy and taking good care of my soul which seems to give me the biggest boosts on a weekly if not daily basis.

Write when you can.

AB

Oluwa
01-15-2008, 04:28 PM
Hey you..lovely to read you...

The denial is working. I know I have it, using common sense. By not making it the central focus of my life I do believe it has lessened my symptoms. Though I still walk around with scabs on my hinder. Ever try to take snaps of your cheeks with a 35mm? I admit... I have. Contorting about..using the wall mounted mirror and 359 degree turn 2.5 inch LCD to line up a snap. Like a scene from I Love Lucy show. Just today my husband and I were laughing at them. I was aching from belly laughs from being a bit embarassed and he, I think he was turned on....roaring.

I was changing so many things..one week add this, minus that, eat organic, not eat at all...praise medicines and despise them all. Every symptom I had, a new mood came. Like a Mood Ring, remember those or am I old....but anyway, if I had one on in 2007 mine would have always black. I was trying to adapt to IT's cronies. Many times, okay a gazillion...stumbling about mad, sad and very few days glad. Very few days of feeling normal, the person I had identified with a few years ago. They were fleeting....snap gone. Hey, wait come back..

Well, as of late, 10 days... I feel real. I am only taking Protonix and Plaquenil. And for the RLS I where tights to bed...

Lately I've been doing 15 minutes on the rat wheel. My taste buds are having a love affair with strawberries sliced, slightly mashed then frozen to the start of icing. Oranges, warmed on the kitchen sill from the A.M. sun cut into pyramid shapes

My weight increased to 120..a good thing. Staying steady where it is now... I hope.

Purchased a new PC..should arrive on the 22nd. Gateway's The One. Mine is running a bit slower because with so many updates at web sites, and with my programs my RAM seems so little. Instead of buying more RAM, hells a new PC. My husband has already claimed this old flat panel monitor. He works two to three monitors at a time for his career position...

Purchased my first bi-focal glasses. Lines, crescent moons. I was excited with the new ease of seeing near, nearer and far too with a tilt of the head, or a roll of the eyes downward. With my eyes being so sensitive we didn't think I would adapt very well to progressive lenses so I went with the blatant, okay I am old lenses.

I haven't seen my Rheumatologist in two or is it three months, just the doctors at the hospital and my primary for that stint last month. No more dairy and it hasn't made another sneak attack since.

Christmas, I was dull. Felt like a frump. I started to fizzle and die out after the 7 hour drive there. Walked daily, picked fresh citrus and just enjoyed conversations and played cards with my Dad. He is not a well man. Diabetes and early heart disease. We dined in, we dined out. Ever eat a soft crab sandwich? Egads, I just couldn't get past the thought of a soft center and if there maybe a surprise there. I ate in a circle. It was a good visit.

Sleeping well? Still being unwrapped? What good things have been on your menu?

Baby dust floating about?... Sending some your way...puff..poof...

Thinking of you too, wondering how you have been moving about, through life, with life or around it...
Love,
Oluwa

the_librarian
01-16-2008, 06:43 AM
Oluwa -

I know exactly what you mean with the mood ring. Mine always turned an odd olive green and then straight to black. I remember so vividly one time the ring turning the most beautiful royal blue, but I don't remember why...

I think I was the same last year. So influenced by IT that I was unable to be the influencer. It is funny (not funny haha) that I melded into this negative focused being. I started out so positive. Frustrated, but positive. Maybe I'm being naive. Maybe I'm forgetting the truth or prettying it up. I'll have to go back and read some of my early posts, but from January through Ireland I thought I was relatively positive. I knew things could go down hill, but I was "okay" and I really didn't believe the negative. After the flare in May/June and the downhill spiral at the new job, I thought I'd never be okay again.

Here I am. Tired some days, but upbeat. Not having mood swings. Not writhing in pain. Some pain, some days, but far fewer than I've had in ages and ages. I feel butter yellow. Do you ever feel a color? I'm not obnoxiously bright, but cheery and I have the most beautiful outlook.

Steve and I are still being wrapped. It has been really healthy for us. We've communicated more than we have in years. It forces us not to be so wrapped up in our individual lives and we are sharing so much. His fears about my health, his need to protect me from his negative ideas about IT. Learning these things helps me feel a part of our marriage. Knowing that we share anger instead of taking it out on each other. We've always had such an amazingly special and open relationship, I think we let IT get in the way. His need not to pile on and my need to feel guilty for subjecting him to this thing.

We are dating again. It is lovely. No baby yet, but we are ready. Finally. We've both wanted it for so long, but I think we needed this opening up so that we could really commit to bring in someone new :) Now we wait...well it isn't all waiting.

I'm glad you are gaining weight. I think it is a most healthy sign. The rat wheel too. I've been doing a bit of that myself and it depletes then pours in the energy.

The glasses are NOT old lady glasses. It is better to see than not and this happens at all different ages. I've been a glasses wearer for about fifteen years and I have started holding tiny writing at varying distances to read. I look through the bottom of my glasses as if there should be a magnifying effect, though there is not. I'm young still...

The only news that I have that is kind of a drag (and I'm sure I've mentioned this already)...My GP is leaving. After 10 years he is going to Tennessee to be Medical Director of a really large practice. I love him. This has been VERY upsetting. I saw him yesterday (he leaves next week) and I really did tear up and hug him and told him this was awful for me, but that I was happy to hear his career was moving. He made some recommendations for people close to mine and Steve's ages, but we liked him from our first appointment. ("No one expects the Spanish Inquisition" he said...Any fan of Monty Python is someone who immediately gains respect in my book. If you don't like Monty Python that is fine. If you quote them, it is just a sign of a specific type of personality.)

Anyway, everyone he has recommended as a specialist has been a good fit. I love my rheumatologist. I'm just sad. It is the end of an era. I told him I thought he and Steve and I would grow old together. He gave me his email address at his new job and told me if I wrote him too much he'd identify me as spam :)

Anyway. I'm being wrapped in a bit, so I have to run. I'll read you soon...

Ashley

Suzique
01-16-2008, 12:53 PM
Being new to this forum, I have spent hours reading your postings, attempting to familiarize myself with you all, your problems, suggestions, hopes, dreams, etc. It has been the most awesome experience for me! I have honestly never read such eloquent descriptions of the debilitating feelings, both physically and emotionally, than you all have posted. It is encouraging to read the positive attitudes that you have brought to the new year. I was an Emergency Nurse for 20+ years prior to succombing to IT, as you refer to our tormentor. This year I decided was my year to take back control of my life, and find a way to practice again. I am now taking a 12 month course in Legal Nurse Consulting, as this is something I can do on my own schedule, when I am able - hard to find in any aspect of the nursing field. I will constantly come here to read your postings, as I know it will provide that encouragement I need to complete this course and get back out in the working world. Never thought I would miss it so much!

Susan

Oluwa
01-17-2008, 05:29 PM
Hi Suzique..

I use to live in Washington, how my eyes, taste buds long to be there again. The mountains, Mt. Rainer....Spuds Fish and Chips, eats in Chinatown. All things blooming...home, ah, so many, many things I miss while I live out east in South Carolina now. I wish I could click me heels and be there now. I lived on the Sammamamish Plateau...and where are you in the state? Eastern? Across the sound...?

I do hope you come here often. I come for the same reasons as you. And I come to relive, release, revamp and express regression, aggression...and idle chatter.

We give our life to our negative thoughts, our disease sometimes, which make me curl and hide. We pray, hope and wait for an intermision, looking for familiar...but you are so right. Take it back, it is our life ..happy to know you've found a path to fill you with a sense of being whole. It's a struggle, eh? Battle when you're strong and rest while you're weak. Applauding you for your steps...woohoo. Yes

Education, I'm hoping to venture that way this year myself...I love numbers.

Read.. but post often too, I would like that...

Enjoy the night, the next light too. A day we can color anyway we want, even if ill, in bed. Like bolied beans, they are dull and bland...sprinkle a bit of salt and it becomes comfort food.

Welcome you with arms in a hug,
Oluwa

Suzique
01-17-2008, 06:00 PM
Oluwa,
I am east of Everett - Lake Stevens. A fairly quite little berg nestled northeast of the big city of Seattle. Came here via Texas! haha Was there for 14 years. Longest I ever lived anywhere. Military brat. Traveled all over. Funny thing: born in Columbia, SC. Near where you are? Moved up here due to the oppressive heat of Dallas/Fort Worth Texas. Couldn't get out of the house 7 months or more of the years. And how I do love to grow things!
I must say that so many of you are so eloquent in the way you write, it is like reading poetry from the heart of SOMEONE WHO KNOWS. How weird it feels. I have felt alone for so long. I sent a couple of my friends a link to the site Karen mentioned with The Spoon Theory. I have never heard it described better, or in a way a non-sufferer could wrap his/her brain around. A couple of friends have continued to keep in touch occasionally (by email) since I quit working, but mostly people have given up on me, and I haven't heard from them in ages. When I hear people chat about "running to the store" or "meeting someone for coffee", I feel so envious that I can't just hop up and do those things any longer. I have to rest all day, in order to have the energy to drive my son to Tae Kwon Do. Then, I am almost too tired to eat dinner, much less cook it. My spoons aren't many these days... Now I shall look forward to "running to this site" as my getting out. I have "met" so many neat and wonderful people from all over and from all age groups, since coming here just a few days ago. It has certainly given me a much needed boost.
I will attack each day with new vigor - at least in my attitude - knowing that there are people out there who understand. :)

Susan

Oluwa
01-20-2008, 12:46 AM
Hi Susan,

I know that area. Not well like Seattle, but have been there for various reasons.

Indeed the spoon theory is great. I refer to my IT as a bank acount..no deposits and it will bounce checks. And the collection fees are outrageous, I've bounced many.

I'm sorry people have given up on you. Some feel helpless, others are just dismisisve I find it isn't important that they don't get it, or understand it. I find I have less stress when I understand that they don't get. They couldn't, they are not like us with IT. They don't have the experience and that is okay. So, I try to throw the metaphors out the window and just say...not to day, maybe tomorow or Lupus wants me stay home with him today. Then I don't feel so guilty I have IT or sound like an old record player with a LP with a skip.

Rest without guilt. Eat with joy to nourish your body. Stretch and let the oxygen flow so your place setting will have many spoons for you.

Good night and really enjoy Sunday's day, every color, every cloud, every texture, every bird's song..it is all for you.

Oluwa

Oluwa
01-20-2008, 12:58 AM
Hey AB,

So what's new and improved?

Weight gain it is nice when you are reaching an ideal weight going upward but I have been eyeing up Hershey Bars lately. Serotonin must be low since halting Cymbalta. I had been a cry baby for two days, two days ago.

Crying..huumm..I was in pain, minor pain but when it is all over it seems major. Menopause is lurking again. Having both menopause sweats and IT's sweats. I feel greasy. Too cold, too hot...edema. Nothing really to complain of. I just want to be, well, like we all do..me, ourselves. But...she's gone..oooooh....

She's Gone Oh I, Oh I'd
better learn how to face it
She's Gone Oh I, Oh I'd
pay the devil to replace her
She's Gone - what went wrong....


And that is all she wrote,
Night. Sweet dreams it is after 3:00AM
Toodles,
Oluwa

Suzique
01-20-2008, 02:51 PM
Hall and Oates -
Haven't heard that one in a while. Love their singing. You write like poetry. Have you thought of just collecting your "daily thoughts" into a collection of poems? I know I would enjoy reading such a thing, and others may wish to do so, as well. They are sad, poignant, revealing, spiritual, and uplifting. What a range of emotions you write in! You capture feelings in such few words. It is really amazing.

Susan

Oluwa
01-20-2008, 09:59 PM
Hi Suzique,

I like the beat of the song too. I can sing, it just isn't pleasant to the ear.

Thank you for your compliments. I do write, but I couldn't go public. I would be too critical of myself to write anything for a monetary value so my real poems are filed. Honestly, many are quite dreary.

My words are for you, for us here. My letters to my relatives are for them.

It has been suggested by family, friends and my husband to publish a book. But I really don't have much to say. Just my perspective of me, of my life and how it all intertwines into everything and everyone. I feel it all, the world's joy, the world's pain...all of it. Be it in a color, in a stream, in a cut, or in a glance. I feel it all. Times I wish I was a fresh dried sponge still in its wrapper unable to absorb...

and then....sometimes I feel my words run dry. I search my thoughts through my eyes as I gaze from object to object with a grimace upon my face as if that wall or vase could tell me what was in my thoughts that I lost. Then I feel like my three pounds of thoughts shriveled up in my bone box and I feel so deflated gasping for more air.

Where is the balance....

Enjoy the night. I have 3 minutes to make an Ebay bid...tick tock, can I outbid...

Tata and thank you again,
Oluwa

mnjodette
01-21-2008, 04:06 PM
I agree, Oluwa - you should compile your thoughts into a book - your posts are truly a treat.

Hall and Oates - what a 'flashback' for me. I was very young (won't say how young) and working at a local 'pop' radio station. They sponsored a Hall and Oates concert and I got to meet them when they came to the station to do an interview. Then I got front row seats for the concert. Kind of a fun memory. The hair those boys had...WOW... But, I must tell you, they were not exactly charmers - incredibly rude. Pressures of the concert tour, I suppose.

My brush with fame.....such as it was! :lol:

Oluwa
01-22-2008, 03:17 PM
AB?

Love,
MO

Oluwa
01-22-2008, 10:03 PM
I am wobbling, trying to keep my balance at the edge of the hole. Cripes. Stupid hole, always in my way.

It's been a long day, a battle with me and my thoughts. No one lost or won yet. I feel like the rope in a game of tug and war. Hope tomorrow it will be called a draw and I can go on with my day.

Sigh..night,
Oluwa

Faith
01-22-2008, 11:26 PM
Hi Oluwa,

I agree with mnjodette; you should write a book. I can't help at laughing at many of the funny/sarcastic comments; especially about "want Oluwa to kiss your booboo?" You are incredibly visual; in fact I burst out laughing last night reading the booboo comment; and my husband looked at me like "what is so funny?"

I am tired of the uphill battle and ready to join Oluwa's Island of Denial. :lol: My body just isn't listening or cooperating with the brain. Seven days of hip pain from Fibro, then the flu hit and to add more flavor and fun, a Lupus rash on my back. I seem to be forgetting little things more.

Flu, hip pain gone for now, rash deflating; and suddenly I have GERD so bad today I wanted to vomit, and tingling in the pinky of my right hand. The tingling is a first; any ideas?

Sign me up for the first book; because I would be laughing and rolling all the way through it. I really love your sense of humor Oluwa; and you make light of everything or make it okay without kissing "booboos." Keep it coming Oluwa; and I hope you are not wobbling into the hole tomorrow.

Faith :D

Oluwa
01-23-2008, 11:56 AM
Faith I just posted a book in length reply about GERD and your tingling...egads, it said it took and never posted. I will write later again..my fingers and joints just don't have it in them to rewrite it now...ugh. Or did I post it on another thread, oh heavens...I checked, nope.

Gr-r-r-r..I better take a Xanax to rest before I split into two personas :D :mad: Pain is horrific today.

Why do they prescribe opiates, pain killers when inflammation is causing the pain, I will ponder while I go off into lalaland.

Toodles...crossing my aching fingers this posts..
Oluwa

Faith
01-23-2008, 07:52 PM
Hi Oluwa,

I am sorry I missed your book; I hope your pain is better this evening. I think we have briefly talked about GERD in the past; it should be called PITS, pain in the stomach. lol. Never have had the tingling previously; and it freaked me out.

We love all your personas Oluwa. I am so sorry you in are such pain; I am sending you cyber hugs.

Talk to you soon,

Faith 8)

Oluwa
01-24-2008, 08:43 AM
Hi Faith...

Thank you for the hug. One just has to ride it out and pray, wish, hope, plead for the next hour, the next day to be better. But night fall I was feeling better and went to bed feeling relatively normal. Today, I can handle the day. Light housework, repot some plants and a smile on my face to boot...not much, but it is something. And for us something is everything.

GERD, did I mention my sister now calls me Gerdie...

On the tingling finger. I had two fingers tingling..ring and the stub, pinkie for years. Thought the cause was my cervical spine herniated disk when an MRI revealed the damaged disk. Had it replace with a plate and freezed dried bone. Later many thoughts, diagnoses, test..revealed nothing. I accepted it.

And not too long ago, few months, I mentioned it to my PCP here in Summerville. He twisted my left arm, putting me in a twisted arm hold. Twisting my arm under and backwards to touch the back of my neck..Like a cop hold. Okay, I made that up...embelished it a bit. Anyway...he thought inflammation. Suggested a cortisone shot, I okayed it..and viola. Next day.. No more going for a free ride finger. Now it participates and points out while I sip my tea.

It could be a myraid of things...pinched nerve running from the thorax area.... shoulder inflammation of the ulnar nerve. Carpal Tunnel doesn't affect the pinkie, so it shouldn't be that. Carpal Tunnel affects the Median nerve. I had Carpal Tunnel surgery on my right only. The surgeon suggested I have both hands done. I thinking... at the same time, hummm... I asked, how would I wipe my hinder?

Enjoy the day,
Oluwa

Oluwa
01-24-2008, 08:52 AM
Hi Jody,

Thank you for the compliment.

I too saw Hall and Oats eons ago..at the Parmount Theatre in Seattle. I had a middle center seat and seated in front of me was a jug head or was it a ratted up and out hairdo blocked my view...hummm..

Looking out for your change,
Oluwa

Oluwa
01-24-2008, 10:43 AM
AB?

Faced pressed up against my screen...you in there? You have to eat and take a break from making babies, baby dancing (BD) as they called in in the cyber Infertility World.

Miss you,
Oluwa

Suzique
01-24-2008, 11:26 AM
Oluwa,
I can always look for your posts to make me laugh. I chuckled out loud as I saw you sipping your tea with your pinkie sticking out! Love the imagery!

Another possibility for the fingers and toes tingling: I have pronounced peripheral vascular disease (the blood vessels are too compressed or blocked or shrunken, whatever, to allow for adequate blood flow), and the lack of good flow to the nerves causes mine to do this. I am on a cardiovascular drug (Cardiazem) for the vessels, and on another drug for the painful tingling (Gabopentin). These helped me a lot. SaySusie may have more specific details on PVD and the drugs for it. My Rheumy says it is a common entity with Lupus, so it might be a consideration.

Susan

Oluwa
01-24-2008, 01:44 PM
Thank you Suzique. I enjoy reading you and everyone too. Aches, wart, tears...giggles and all. And especiallly the wealth of info. Medical and home remedies, mental and spiritual techniques. I learn something new every time I stop in. Everyones words provoke thought in me. Helps me to turn my kaliedescope and see life, me different with my unwelcomed companion, IT.

Your PMer....

You have alot on your menu...and being so young when it began, long time to deal with these, these assailants.

Mine had been present for many years, but I or the doctors were treating the symptoms. A sleeping volcano. Mine is perculating, not throwing and flowing.

For the most part, it affects me mentally, and then crushing my spirit. Sometimes I wonder if ignorance was bliss then. Thinking, gee what is wrong with me..test after test, pill after pill..then one day..ah, Oluwa you have ......

Oh I was joyful..thinking it would all be better, a diagnose, woohoo...means a cure, an end to the madness that had (has) infringed on my life In the end...it seems more troublesome to my heart and soul to know there is no end. I prod on. Stay faithful to God, keep the hope. I write to me, I write to you...I write to others. I read you. I read others. Keeps me afloat.

My life, like us all...was so, so, so different. I've grumbled many, mannny days settling in.

When I flare it usually is for months, waning, never ending. Lately it has been by the hour. Like The Many Faces of Eve. Skipping along, looking at my feet, lovin' life, call me Glory and someone parks a semi- truck in front of me...and I become Madge. Bam! Floundering and wailing about on the pavement.

I understand feast or famine...when you're in famine. I will post for you here. K? When you feast I will look forward to sharing that Cornucopia.

Weekend is coming? Plans. Primary, Saturday I am going to vote. I have confidence when I exercise my right to vote, the person I have chosen has everyone, everyone's best interest at heart. Can't please everyone though. I vote with objectivity...and if it is cloudy Sunday, church. It has so many windows, my church. From the light filtering in I've gotten queasy, sweaty and became light headed the last time. Maybe I am just get so filled with the spirit...Amen.

And I made an appointment on Monday for lab work. It has been a spell since I did a catch...See what unfolds. My legs, my tree trunks have been swollen from the knee down for the last three days. From the thigh to the ankle it looks all the same circumference. Feet are bit, but not like Fred Flinstones. Wondering is an organ malfunctioning...as before when I swelled, my whole body grew. Sausage links for fingers, wedding rings so tight it looks the twisted sections of the sausage links. Toes that don't touch the floor when standing. Blow up a rubber glove, that is what they would look like. Eyes like a ball of raw bread dough cut in the middle. Not this time...just knee sock length...any ideas?

The Roomba is beeping....probably eating my drapes..

Enjoy the evening with your family...my husband will be home tomorrow...
Love,
Oluwa

Faith
01-24-2008, 04:53 PM
Hi Oluwa,

I always like to give hugs. I like the name Gerdie; too cute I just wished it was as cute as it sounds. lol.

Funny that you mention carpal tunnel. I had it in both hands; I elected to have surgery on the right. I laughed about having it at the same time; no thank you as I will not have "help" in the bathroom. lol. The tendonitis eventually went away with time; though will act up from time to time.

Last February & March, I had pain in my feet along with tingling. This Winter I haven't had it in the feet; but in the pinky of my right hand which comes and goes. I count my blessings it was in the pinky only; mmmm it started me thinking. That is always a dangerous thing, once you start thinking and then you can't stop. I don't like the unknown; though with this disease it is definately an adventure.

I have another question for you. What is with the enamel coming off our teeth? Do you or anyone else have this? Is this Lupus related?

I hope your face isn't too squished against the glass of your monitor. You always have me rolling; thank you!! I hope you are having a good day and painfree.

Take care,

Faith 8)

Faith
01-24-2008, 04:54 PM
Hey Oluwa,

Does the Roomba do a excellent job? I would love one; though hesitated.

Faith

Faith
01-24-2008, 05:02 PM
Hi Suzique,

Thank you for the info on PVD; as I have never heard of this. It sounds very serious and not like a lot of fun!! Can you tell me anything more? Does it come and go?

I want to have something fun; not another label to add to the other labels we all have. Though, reality is reality.

Or I might just join Oluwa on the Island of Denial. The palm trees swaying in the breeze, feeling the sun warm my face, digging my bare toes into the soft squishy sand, the taste of sand on my lips, dancing to the christian group Adrenalin, running down the beach in a shorts and a tank top and no hat or sunscreen needed; scratch that, bathing suit, without any worries or cares. Whew; my imagination just flew away. It's catching!! It's nice to dream!!

Take care,

Faith 8)

Oluwa
01-24-2008, 06:02 PM
Hi Faith.

I love my Roomba. I named him Willie. It barrels over carpeting too. The main floor is completely hardwood. I'd say 2000sqft plus and it can do the entire floor on one charge. Every 20 minutes I empty the container, checking the filter to ensure it isn't covered with a dust blanket like the dryer. Having two animals, it doesn't appear the floor has much but when you empty the catcher..I am amazed. Yucka. Then I charge it again, do another roombaha-ing and polish the floors. Well, my husband polishes the floor, I dust them.. Hard on the joints..I do try, then peter-out.

I broom sweep the floor at the walls, the basboards, the corners, and move the dining room and kitchen table chairs....and lift the cords and drapes....When Willie gets tangled it says..Oh, oooh.

When my sister was here in November, she was impressed and added one to her Christmas Wish List. Santa filled her wishes. She has the one that returns to the base and recharges. I didn't opt for that one because I didn't know where I would hide it under. My brother suggested under the bed..but then I would have to move it to clean there. So, mine hangs on a circular bracket behind the closet door.

I must say I was on the ball when I asked the electrician to install an outlet in the closet.

Enamel lost...drinking lots of citrus, sodas? Acidic drinks and food? Vomiting? Have Sjogren's Syndrome?

I have light teeth. Mine is probably from all of the above. I was a weekend bulimic for years...recovered from bulimia and anorexia. I have a online journal and a page about my bulimia, maybe one day I will share the link. Loved orange pineapple juice, I don't indulge in it anymore. Burny belly. Whole oranges and pineapple don't burn.

I think Sensydone has a product out there for enamel loss. Ensure you rinse daily with a fluoride. Are you front teeth chipping?

If drinking acidics, use a straw....

When my mind runs wild without focus...I create a panic inside, fear..fearing the days that have not come.

Your dream is mine...Body surfing. Running nude at Little McKenna on Maui...I feel the waves rolling over my body, the light tropical wind lifting my hair on my body. The smell of pineapple coconut dark tanning lotion. No SPF....ah..yum I miss being free.....running, biking, hiking, dancing...Now I know what a tortoise feels like. Slow moving. Each stride looks like work (is), toting a shell..my carcass around and being reclusive. Hiding in my shell.

I flew away too for moment. The mind, the imagination..isn't it wonderful. It can takes us any place.

Catching a wave,
Oluwa

Faith
01-24-2008, 10:21 PM
Hi Oluwa,

I am definately envious of Willie, wow I didn't know they flew over carpet. I am definately impressed. I don't have any place to hide it; under the bed are my miscellanous shoes depending on how bad my feet hurt. lol. I don't have an electrical outlet in my closet; but something to definately think about, and I don't have any curtains to get entangled in.

We have so much dust; I keep the swag shears on the windows so I can wash them. I might have to add the Roomba to my Christmas list also; we have two dogs. It's amazing what you don't see until you empty the vacuum filter; ugh.

Enamel, used to drink one soda a day maybe, and no acidic drinks or food. To relieve water weight/swelling the last three months, I put a little of lemon juice in my water after I was told I was losing my enamel. Vomiting only when I have been sick; I can't throw up and when I do it sounds like Ghostbusters' green goblins fighting to escape. Sjogren's Syndrome, not too sure as I need to read up on it.

We all share the same dream, I love to swim and body surfing; feeling the waves move in tandem ebbing and flowing with the tide. Running at sunrise and feeling the soft sand under my feet; in tune with nature and God.

You may be a tortoise; but don't forget you are beautiful inside and full of life.

I am batwoman; reactive to sun and flourescent lights, and I live in my dark UV tinted cave and my batmobile that's tinted. I don't wear hose and short skirts, but uv clothing, rated at NASA standards, from head to toe and slathered with Sun Protection 50 and Sunglasses. I don't sit or stand too long because the Fibromyalgia kicks in and feel like I'm 80 walking stooped over to stop the jarring pain.

I flew away as well. The mind, the imagination is wonderful and I love the FUN places it takes us. I think we have created an awesome Island of Denial.

I hope the swelling goes down; have you called the doctor yet? I definately would as much as I hate to.

Running at sunrise,

Faith :bday:

the_librarian
01-25-2008, 12:00 AM
Hello! So much seems to be going on here since I last posted.

Suzique...Welcome. It is so good of you to join us. I don't always write, but read pretty regularly. I've been on hiatus from the site for a bit though, so I'm so glad to see more and more people are finding us everyday.

Do you know Lexington, SC? My husband went to High School there. Lived on Lake Murray (sp?) I'm in NC, so close to Oluwa, but not close enough.

I too have been abandoned by many. I think my difficulties stem for being young with newly wed friends just starting their lives, careers after graduate school. They just don't have the time. My mother recently moved to my area of the state and I do garner much of her attention. My husband gets it. We all refer to it as gasoline. How full is your tank today, I'm on empty, etc.

IT has been a real struggle for us to get used to, but we have been so incredibly blessed in so many aspects of our lives that we try to treat IT as just a bump in the road.

Again, it is great to have you around.

Ashley

the_librarian
01-25-2008, 12:08 AM
Oluwa-

So far this year's denial of IT is working pretty well. I'm in the gym most days even if just for a stretch. Steve and I are going to a yoga class tomorrow. His first. I think it will be an interesting thing to share.

He and I are back on the weigh down :) I may have mentioned this. I'm not following a plan exactly, eating healthy, living healthy. We have goals, but mostly for an addition to the house (pitter patter, pitter patter) We've been given a "healthy" weight to get to in order to increase staying power...
Sadly, the more I stick to my healthy eating, the more I think about cigarettes! Isn't that horrific!?! Of course I will not be giving in. It has actually been a full six months (Holy Cow, this week as a matter of fact!)

As far as IT is concerned, I've had the widespread pain as well. Mostly I've been pretending it is pain from working out, but it is really from the insomnia I'm experiencing once or twice a week these days...

I'm thinking of returning to my career in a different setting, but still clinging to the pendulum...I'm able! I'm never going to be able again! Not defeated, just trying to identify reality.

I'm sorry I've been MIA again. Family sucking up my gas...

Refueling though!

Ashley

sick n tired
01-25-2008, 12:14 AM
Hey Oluwa,

Gerdie? My sister calls me the same thing. She is a practitioner and thinks it is funny. I was diagnosed with gerd and then barretts disease before lupus was even thought of.

I also was a bulemic/anorexia. Stopped at least 10 years ago or more. I reached a certain age and the exhaustion would set in if I didnt eat. My teath are bad because of it.

So you name your rhoomba, I name my GPS machine that my husband got me. I think that I could get lost in my bath if I didn't have directions. he,he My gps's name is Jeeves on account of he has an English accent.

So can I come to the same Island. I need a vacation from my body. I wonder if I could come and forget it. The only way that I can do that is to float away on a dream be it day dream or not.

floating away on a sea of forgetfulness.....

In Him,

Karen

the_librarian
01-25-2008, 12:24 AM
Oluwa -

Wow! I missed some of the posts. There really are a ton. I read your post about the fear...I've been having this a lot in the mornings. My wrapper says it comes with the FMS, but I've had that for 10 years and never experienced this. When I finally force myself up, I'm fine. No panic, no fear, no Xanex. None. But while I'm laying there, just after my alarm has gone off, I'm swimming through a sea of negativity, fears pushing through a crowd of my own personal demons.

I've been thinking that for some reason, that time just before I'm fully awake is a week point in my mind's control...the witching hour. It happens most days as of late. I feel so exposed even sharing this on the board.

This is new too, my feeling of anonymity lost. My inability to post the most personal of posts. I'm working back into it. I've always been so open here, I can't imagine where this hesitancy is coming from. I know the love and support of this group. Maybe my isolation since leaving work seems so real that I'm just having to really push to reach out...

As always you are in my thoughts...

Oluwa
01-25-2008, 09:21 AM
Hey AB,

Insommnia..I can see that by your time posted. Did you finally sleep? Are you still sleeping?

I believe the more time I spend by myself my mind tries to pull me into the world of IFs. Mine too, start when my lids roll up like a shade, greeting the sun lines from inbetween my blinds. Once the thought begins it spins and spins and acts as if it has me pinned. I realize my thoughts can't..I roll over and start the day of mental occupation. Busy. Distractions. The PC has been wonders for me.

Contacts, really none here. Especially since my dear husband travels. Fear to search for friends. Feeling my words, Lupus maybe a friendship burden. Filling them with disappointments with the words I can't. I feel I have hardly anything to talk about since my life only encompasses around the home and books read. I rarely go out. Very reclusive I've become. Alone creates a manifestation of sort within me.

When we do take a drive, shop and see people out and about, the lights, the movement, the vivid colors, the layers of people, trees, buildings...like an acrylic painting..it's all living I get excited again. Then I begin an occupation of my mind, as if it was another country. I sink and the cycle of the IF's begin as I watch the world become blurry. Like looking out the side window while driving on the freeway except I am looking through the front. I swallow the hurt ball I created...focus and tell my husband in an animated way, a story of me, we laugh and I talk of when I can, when I will be able to. False hope am I giving him, I wonder... He looks happy for the moment and it makes us feel good.

Is my fear holding me hostage and not IT? Each pain, big or small, each eye squint fuels the fear....

Today I go something like this....

Dull headaches daily. Various spots of temderness on the scalp. No abrasions, lesions or the like. Like a bruise touched feeling. I accept this as my normal.

My muscles feel hard. Imagine a cooked gizzard's grissle.

All joints feel tight, like a rusted door hinge.

I feel like I wear oven gloves on my hands. Unable to get a tight grip.

If you were to wear a deep V-neck T-shirt backwards that uncovered part of my back, throbs with pain. My normal or my posture while sitting.

As of late, from the knee caps down I am swollen. My calves look like like those short road posts.

Muscles too weak to even hold a paring knife to slice mushrooms. When I give in and say I can't..I feel like the woman who said, "I've fallen and I can't get up."

My eyes feel like how my eye contacts look when I forget to cover them with contact solution in their case.

The roots of my teeth ache. Probably from chewing gum for my Sjorgens'.

My eyes balls feel like to steel balls. Heavy, and the pain what cold steel brings.

Walking on marbles again...hungry for beets in the jar. There they sit as if I was trying to open a tin can with my bare hands.

As I type this with my clubs, typos filled the page and I will be back to edit it again. New keys on my board seem so small, or the strength in my tips is so light I miss the key... or perhaps it is my glasses that keeps my fingers from hitting off key.

Oh, the list is too long...and it all seems so petty and minor compared to many who I've read. For me, the mental pain is massive many days and it is really what hurts me the most.

As of late, I 've added Naproxen back to the suitcase and Xanax.

Fear not of being exposed. Express. I believe it helps to heal the mental sore and you not feel so naked anymore.

Thank you for reading me....
Oluwa

Oluwa
01-25-2008, 09:23 AM
Oh, hey AB..loved the avatar. Reminded me of me..skipping along and wham-O...

It made me chuckle...

Oluwa
01-25-2008, 10:06 AM
Faith,

If I saved all the dust this past winter from what the central furnance brings I could create that sandy beach for your feet...and the island for Karen...

On the curl...
Oluwa

Oluwa
01-25-2008, 10:15 AM
Hey Gerdie...I mean Karen...

I am happy we both stopped using the toilet for our faces.

Yes, come...bring a picnic basket of exotic fruit, passions, guava..coconut.
And we will play stick in the sand...

Friday..woohoo. My husband will be home. I spend so much time with my dog and cat I am starting to sound like them. Meoooooooow...yarf...yarf...feed me...love me....

Enjoy this day,
Oluwa

Saysusie
01-25-2008, 10:49 AM
I just love reading the posts in this thread...somehow I always end up smiling

:lol:

Peace and Blessings
Saysusie

Suzique
01-25-2008, 10:49 AM
AB,
Oh, my gosh! This is the first post I have read where someone mentions cigarettes. Everyone talks about their healthy eating and exercising, and I bow my head in shame at my weakness. I had quit for over 3 years, and when Lupus grabbed me and started strangling the life out of me, I reached out to them again as my lifeline. I get lectured by everyone (my husband never smoked, neither have my parents), and my physicians get almost angry with me, due to my peripheral vascular disease, on top of everything else.
What is your secret? Anyone else have any good ideas? I am so frantic to give them up, yet I don't know what else to reach for in their stead.
SaySusie? Any suggestions?
I tried the new Drug Chantrix, but the co-pay is horrendous. And I am already on so many drugs. Maybe I should try again anyway...
My heart is beating madly, as I admit my dirty little secret here; hope you all can understand...

Susan

Oluwa
01-25-2008, 11:36 AM
Susan...I puffed for years..28 years. Don't be shameful...as you can feel your heart race, more stress was just created. So, stop that and stop smoking too.

When I met my husband I asked if he smoked? Replied, No. I asked do you mind second hand smoke? He replied, No. Good I smoke, I said.

Since I have quit, almost 5 years I think...My memory is so bad or I just completely put the convenient, compacted roll up of diseases out of my mind. But since quitting I have since apologized for jeopardizing his health.

I don't know if it was because I attempted to quit many times why the last attempt took, or because I dreaded going through the withdrawals, the nausea, the constant nagging that kept me unlit now.

When I felt the want to have one, I would walk around all day saying, Cripes, I need a cigarette. Seems silly to need such a thing. I also said, I promise I won't hurt my health today and pins notes with that on my mirror, on my lamo...on my fridge..... And lots of deep breaths.

I longed for cigarettes for about a year....then it passed and I became an official non-smoker. That is ...you curl your lip up at the smell of one. Today, the second hand smoke makes me nausea.

Today I say I wished I smoked. Not out of a desire to smoke paper, stems, leaves..you know stuff we would burn in our backyards in the fall in the rurals areas. In Washington, BTW they have a barrel burn ban.
....I say I wished I smoked because, just for a fleeting moment because when I am stressed I visually the old me, handling it with a cig. I guess life seemed easier with a cigarette than with Lupus...

Now snuff that jib out, toss the ash trays out. Washington is so beautiful on a clear day...the mountains that fill any window like a picture. Don't let smoke cloud that picture...

Smoke your tires and not your lungs..
Oluwa

Oluwa
01-25-2008, 01:03 PM
My frazzle has past. Finally I was able to release Auntie Nellie's Ruby Beets from their captivity. I was relentless and I ate with a heavenly smile. I just love those ruby red balls chilled.

I wanted them so fast and now, I have ruby red stained finger tips. Too much time to get the slotted spoon. Get in my belly now...ever see that commercial...

I am happy today and it just took a beet,
Oluwa

Faith
01-26-2008, 01:08 AM
Hi Karen,

You are welcome to the Island of Denial anytime.

You are invited tomorrow evening as Oluwa and I are having a bar-b-q on the beach, skewered shrimp and chicken, are on the main menu with smores afterward around a campfire; scratch that campfire, a warm propane heater. I get nausous around smoke too.

As we sink our toes into the cold sandy beach; we look out over the ocean and spot the light from a lighthouse guiding the lost ships in from the wisps of fog. The smell of the salty sea and the sound of the waves rolling in a rhythem soothes and we feel renewed. In the background of the waves, we can hear Chris Tomlin singing from the rustic pier.

Come anytime as you are always invited.

Take care,

Faith 8)

Faith
01-26-2008, 01:29 AM
Hey Oluwa,

I am glad your frazzle has passed. I loved beets as a kid and my Grandma grew and canned them. I am sorry you are not feeling well earlier. I am sending cyber hugs. I am glad you are feeling better. I have a GPS as well; I get lost easily. She doesn't have an accent, but she sounds like the GPS on the movie RV. "As soon as possible, please make a legal u-turn" and of course it has to be in the middle of the freeway in LA on my way to the Dr. I haven't named her yet; though Knight Rider may be appropriate since she is so computerish sounding. I haven't heard the man's voice; maybe he sounds like Tom Sellick.

Well, are you coming to the bar-b-q tomorrow night? I invited Karen to our Island of Denial (check out the post). Mr. Rourke and Tattoo may make a surprise visit since it is after all Fantasy Island. I do have to say, please bring all from the furnace as I love sinking my toes barefoot into the sand, and we are on a huge island. It's definately not Thursday night Survivor; as I don't have the muscles or energy to use an ax on the beautiful fronds of greenery plus I would probably fall from a banana tree with my fear of heights. lol. Maybe we should call it the Survivors' Club on the Island of Denial. What do you think?

Take care,

Faith :P

Faith
01-26-2008, 01:47 AM
Hey Oluwa,

Mr. Rourke graciously offered to bring his surfboard for you to use tomorrow evening. Tattoo offerred; but that may be a slight problem. Tattoo thought you would prefer his surfboard because it's painted with pictures of Elvis along with the words "The Plane, The Plane." I told him thank you, but no thank you. Don't get me wrong, I love Elvis, but not an Elvis surfboard and it may be just a bit too short?

The next thought is how are we going to see you out there at dusk in the ocean? Mmmm, okay I have it. I am bringing several light up necklaces that glow in the dark for several hours for everyone. We won't get lost on our island.

Mmm, where are those marshmellows?

TaTa,

Faith :D

Suzique
01-26-2008, 11:57 AM
I would like to join this party on the island....
My preference would be to don my comfy sneekers and go on a nice, long hike in the lush greenery, looking for flowers and other flora. I'll carry my basket to collect excellent specimen for our luau table. My sarong will flow gently in the breeze which cools my skin, uncovered for the most part (delicious sensations as the air and sun tickle my usually fully covered dermis).
Those cool, island fruit drinks - yum! I can taste the pineapple and mango...
What a beautiful dream you have created! I shall escape here whenever I feel overwhelmed in the future.

See you there!

Susan

Faith
01-26-2008, 04:18 PM
Hi Susan,

Welcome to our Island of Denial, The Survivor's Club. :D You are more than welcome to join us this evening. Oluwa is bringing her funace lint to create an island and sand at our feet.

I would love to join you on the hike through the lush greenery, looking for flowers though I have heard the coconuts drop without warning. lol. I think I will bring my camera and take pictures of the flowers and bubbling brooks and streams. The sound of water dribbling over rocks gentles my soul. . . . . . and the sunset is setting.

Mmm, where are the Hershey bars to go with the marshmellows?

Faith 8)

the_librarian
01-27-2008, 09:18 PM
Suzique-

Quiting was hard. Very very hard. So hard in fact that I did it about 10 times before it stuck. I wish I had great advice. I tried everything...Chantix, wellbutrin, chewing sticks (slightly thicker than a toothpick, Australian and flavored), chewing gum, taking walks, drinking water, stuffing my face and gaining weight, Nicorette, Nicotine patches (I still remember the most vivid sunset orange fish swimming in mid air through my dreams). One day, I just stopped. One Tuesday after an especially bad spell, my husband said are you coming out to smoke (he smoked too and we ALWAYS went outside for a puff before bed), I said, "I don't think I'm going to smoke anymore." He thought I meant that night, I meant forever. He quit a week later. After a week I was better and went back to work. I had a pack of cigarettes in my car and I lit up. I took one drag and thought, "If I can just get past these first few puffs, I'll really enjoy this." I then thought, "You moron, you don't want to force yourself through those puffs!" and threw it out. I haven't had a puff since.

I keep the pack. It still has cigarettes. This was not an approach that I ever thought would work for me. I'm too weak. It has though. It has literally been a choice most weeks. "I have this pack," I think, "I could just take one drag." That is how I get through. I could if I want to. I could give myself permission to smoke one cigarette. I don't have to buy a whole new pack and open it. This one is right here if I really just have to have one. I haven't. Even through the holidays and flares, nothing has made me actually light one up. I've taken one out, put it between my lips and thought, "I could light this. It is up to me." Then I put it back in the pack. I don't feel strong or weak or embarrassed by my bad habit. I loved smoking. I enjoyed everything about it. The taste, the smell. I still see other smokers and feel a kindred spirit toward them. Maybe someday I will become a "non-smoker" but for now I'm just a smoker on hiatus. I don't think I'll ever go back, but if I chose to the cigarettes are right there...

Odd.


Oluwa - Your beets have made me happier than I ever thought possible as beets are one of my least favorite flavors. Perhaps your child like euphoria at breaking the seal will forever change their negative image :)

Love to all...

Ashley

Oluwa
01-28-2008, 02:04 PM
Tatoo's surfboard would be more like a boogie board for me....

Come to think, I mean dream of it, Rourke and Tattoo? Elvis? Who next ? Gilligans..egads.

Denial and I drew straws. Guess who lost?
Oluwa

Oluwa
01-28-2008, 02:12 PM
Hi AB,

I fought that seal for three days....I even dribbled on the of my PJ's front.

Love,
Oluwa
On hiatus. :cry:
In cloak mode.. :scrambleup: can ya see me...
Tending to my wounded spirit.

Faith
01-28-2008, 03:52 PM
Hi Oluwa,

I hope you feel better soon and your spirit lifts. :D Is everything okay? Have you called the dr about the swelling?

Missing lighthearted Oluwa and Willie.

Catching a wave,

Faith 8)

Faith
01-28-2008, 03:53 PM
Hey Oluwa,

I love the ivitar(?) or icon. Too cute!!

Faith

the_librarian
01-28-2008, 04:32 PM
Ah, Oluwa, alas...I come back, you go on hiatus.

I'm sorry for your struggle with denial. Stupid denial won't stay put sometimes always enticed away by brutality.

Take care...come back soon.

AB

Suzique
01-28-2008, 05:39 PM
Ashley,
Thank you for responding and being so understanding. I have had such a struggle. I was an ER Nurse and in the military for years, and the habit was so accepted that I just didn't think much of it. Now, I am married to a non-smoker, I have a 7 year old, no one (that I know of) in my church circle or neighborhood circle smokes. I am alone in that. Yet, I find the pull so strong, when I have so many reasons not to do it. I, too, go outside to smoke. My husband wouldn't tolerate the smell in the house (not that I would do that to him or my son, anyway). I will try the "one day at a time" approach. I can usually last for hours at a time without much problem. Sometimes I get busy and don't even think about it.
The Island of Denial you guys have created has been quite nice for me, too. I drift away thinking of meeting you all there, and it gives me a peaceful place to go.
I saw my Rheumy today, and the bad news is that he doubled my prednisone. I am not doing well. I fear what it does to my organs after all of these years (not to mention the osteoporosis I already have) will eventually cause some serious concern, but I have no choice at the moment. He is getting me set up to start the Rituxin again, this time not on study but just as a regular treatment.
So, I may be sort of floating around out there, myself for a while, giving the pred some time to make some of the symptoms abate. I wanted to thank all of you for your kind words and support. I will continue to pop in and read to keep my spirits up, but will probably not write much after this.

Hugs and Prayers,
Susan

Oluwa
01-28-2008, 09:33 PM
AB,

It's too warm for winter Petunias...too cold for summer ones.

I feel like an African rainforest with much deforestation happening. A wasteland. I am lost, I don't know what tree top to perch upon.

If I was a well, I would not be empty, I have lots to give. Pails filled, tin cups brimming. If I was empty, I would not be a well at all. I do not need a fill up...I am lost..looking for the bread crumbs I left.

Okay, who ate them? My husband.
Worry not my friend, I will bake a new loaf...maybe tomorrow maybe next week.
Oluwa

Oluwa
01-28-2008, 09:36 PM
AB,

I did go to my doctors, did a hinder scrap, a blood draw and an in stream catch. Will post if I receive an A or a D.

Night,
Oluwa.

sick n tired
01-28-2008, 10:58 PM
Hi Faith and Oluwa,

Oh it sounds lovely. I can't wait to come to the barbeque. I love shimp on the barbie. I want to play in the sand and later we might be able to toast marshmallows. Of course that is if we can with propane :) I think I want to go now as this has been a trying weekend and now week.

My family (siblings) don't understand me and want me to be well. One of my brothers told me that he felt that I was almost certifiable. He is right when I talk to him he makes me so crazy that after a while I sound like a raving lunatic. I guess he is always sure that he knows what I am thinking. He has started calling one of my friends and confidants and she is pareting the same things as he. No, I said that one wrong, she used to be one of my confidants. Oluwa I to understand why you don't feel like making friends where you are because what can happen, but it is lonely. I do not have anyone near me. I do have friends from the church that I attended for 20 years, though.

I think that I have a great idea.........I need to find an island to strand my broher and his new found friend on. It needs to be one without a phone. :lol:


....trying on my swimsuit....(if this is fantasy then I look great)
See you on the Island the last one there is a rotten egg!

Karen

Faith
01-28-2008, 11:54 PM
Hi Karen,

You are always welcome anytime and it is lovely. I am sorry it has been a trying weekend.

I don't think many understand what we deal with on an average day let alone on a "rough" day. I would tell your siblings to butt out; the brother. Everyone needs space and time to heal; more especially those with Lupus, and getting confidences involved only makes it worse. You need some peace and not a war and this makes your disease even worse and stresses you out. Tell him to stop because he is stressing you out.

I have an island for your brother; Fiji. Maybe you could submit his name as a player for Survivor. lol. I am not sure if it would be Fiji; but it is usually an island. lol. I don't think they have phones either and they are stretched to their limits physically.

Why not get in contact with your friends from church? Compassion, and understanding helps heal.

See you on the island!!
Purple and pink streaks stretching their fingers to the Sun as the waves pound the shore.

Catching a sunset while pounding the sand.

Faith 8)

Oluwa
01-29-2008, 03:39 PM
AB,

Doc cored my shin like an apple today. Not that huge..oh about a 1/4'' diameter....two stitches later. Biopsy results in a day or two...Perhaps tomorrow when the other quizzes have been graded.

I suspect eczema....dead and thick like a leather boot.

My wellness is like a yo-yo...icky on the way down and icky on the pull up. The sec it runs out of string, was the 1/1000000000 of a sec I felt well..ugh.

I am happy you still are puff free....atta girl.
Love,
Oluwa

Oluwa
01-30-2008, 03:34 PM
Hey Ashley,

Tests results...H. Pylori and UTI. Ugh. Prevpac, a small suitcase of pills was prescribed. Four, two times a day.

Crud on the outside, crud in the inside.

Pylori, sheesh I haven't been eating my soup from a toilet bowl....hummm. Just think I am borderline OCD germfree and I wonder what would I've had if I wasn't...cripes.

Oh, goodness... just had a horrid thought, what antibiotics do to, you know down there.. Oh, geez wheez....

Grossed out,
Oluwa :shock:

Oluwa
01-30-2008, 08:27 PM
Hey you AB,

Me again....in the event you are in cloak mode, I had intended but I find when I do hide I begin to have self pity.

But anyway....I don't feel so icky anymore. Weird I was just chatting with my PCP on Monday about the germ thing..and who knew. I told my husband I think I had contracted it from him. He look blanked. Naw, just the perks of having IT. I wonder how come they don't treat him. I will ask that tomorrow of my PCP.

And it is so ironic, because I was loving citrus for weeks and it is supposedly a homeopathic remedy for H. Pylori. Am I good... I say supposedly because the bacteria can live in high acidic conditions.

Maybe after swallowing all these pills... my gut aches, sloshes and etc will vanish, along with the Protonix....and GERD. Wouldn't that be lovely.

I hope you are enjoying life...I see my daffodils and crocus' peaking...crazy weather. Sagos frost bitten. Camelias yet to bloom. How is the yardscape up north? Worn and brown?

Sleep tight,
Oluwa

Oluwa
01-30-2008, 08:47 PM
Hi Faith,

Thank you for the well wishes many posts back. I get lost in the posts and forget where I am and where I had been.

Living in Denial, USA still? Me I am back from vacation..battling, dueling with a crud. Maybe with this latest diagnose and meds it will bring an end to my belly blues...

Hope you had a lovely Wednesday. If not, there is always tomorrow, eh?

Enjoy your dreams,
Oluwa

Oluwa
01-31-2008, 08:50 AM
In bed all night, thinking, till dawn reliving where I had been, who and what had been in my mouth since pulling into town. Unsanitary? Humm... My new dentist came to mind.

No plastic baggies over the handles on the overhead eye aching light. Ewww... I recall thinking, oh, he must wash and wipe things inbetween. Hummm. He made my crown in his office. From the laser machine to my mouth, I don't think he stop to sanitize his hands. I just recall being amazed, watching as he shared his new dental technology and I being his guinea pig. Lasering a cube into an exact replica of my molar.

Laying wide-eyed I wonder what restaurant, who served me food....especially after watching weekly shows of Kitchen Nightmares with Chef Ramsey...hummm where could I have picked up the freeloader. Many times I cringed when I had seen Ramsey pull out hairy meat and tomatoes nestled, uninterrupted in the corner of the warm walk in. Gag!

Wondering... if I ask my PCP will he tell me if there are many cases in the area. Does it matter I ask myself..perhaps..maybe I will avoid eating out.

A evening to the next light, time wasted as my mind raced. The only difference from yesterday to this new day is I am tired. Nothing gained from worrying, I just lost a lot of much needed rest. One hour will not do, 7:30Am - 8:30AM...how I long to go to sleep but I feel like a kid, too nosy to go to sleep...Maybe I will fall asleep being bored by The View. Five minutes...

Tata,
Oluwa

the_librarian
01-31-2008, 08:53 AM
H. Pylori. Gew. I was tested some time ago (a year?) I was negative, but somehow I knew that ahead of time. I think I was so busy learning about IT, that I just couldn't worry myself with anything else. I'm sorry, more pills, grrr. I hope they do all you hope they will.

I've been fluish bound this week. Starting Monday afternoon. I did sneak on a bit to look around, but didn't feel like posting. I allowed myself to feel like poo and then to pull myself back together. I've been suffering from Insomnia, so the new GP (whom I haven't met yet) called in some ambien, which my husband went to pick up only to find that according to the pharmacy my insurance has been canceled. So I've spent the morning on the phone with the insurance company. They tell me everything is fine. I'm on hold with the pharmacy now. They are still telling me that everything has been rejected. Now I'm talking to the insurance company again.

I"m getting annoyed. Short tempered. Now the pharmacy has to call my insurance company. This is ridiculous. So I call the pharmacy to give them the number and before I even get the words out the person at my pharmacy says..."No" we don't call companies, everything goes through our computer. AHHHHHHHGGGG!!!!! So I calmly tell them (read on the verge of tears) to bugger off. No seriously, I give them the number anyway and ask them to please call. That I've talked to everyone I know to talk to and this is the next step through the looking glass.

But my woes are small and now I feel bad complaining.

Oluwa -

I'm so sorry you are stuck in reality. I hate reality some days. I hope that no additional infections follow due to the antibiotics. Eat lots of yogurt? I hope that your pills all rush to their appropriate ill and take all of the sick away. I hate that you have been on such a rollercoaster. I'm thinking of you constantly and hoping the ride slows down, evens out. maybe a kiddie ride would even be an improvement.

I wish we lived closer. Perhaps there is nothing we could really do for each other, but I seem to live near no one that understands.

AB

the_librarian
01-31-2008, 08:59 AM
Oluwa -

Our posts crossed. I know exactly what you mean. I do that too. That wretched review of all that could have gone wrong. Not sleeping is misery. Gordon Ramsay...me too. So many shows lately. Morgan's, Napoleons, goop in the corners, yucky slime in the refrigerator. Chef's with no training, messes everywhere.

I hope the view puts you right to sleep. Happy, stressless dreams of denial land?

AB

Suzique
01-31-2008, 10:45 AM
Oluwa,
I was waiting for SaySusie to hop in there and give you the details about H. Pylori, but she may be down with IT or a flu or something, so I will do my best to tell you what I know (just from working with it at the hospital).
H. Pylori is the nasty little bug known to cause stomach ulcers. It was discovered that this little critter was the root cause of many ulcers some years ago, hence the treatment with antibiotics. It is very common, and anytime someone presents with stomach inflammation or ulcer-like symptoms, this is one of the most important tests to run (ran thousands of them in the ER). Can't begin to help you with finding the source; sounds to me like you have some pretty good ideas of where it began in your life. Ewww! is right. I cannot believe how unsanitary people are. My husband was just telling me about a man who goes to the rest room at work, voids, then walks out without going near the sink or soap. THEN he has the audacity to stick his hand into the ice machine in the employee lounge! Ewwwww! My husband never has ice in his drinks at work. But you never know when you are outside your home what you may encounter. People have no concern for infecting others. I frequently see people wipe their noses then continue what they are doing with soiled hands. That is why cold viruses are so prevalent.
On to the UTI. How do they know it is not your kidney? Well, there are many things that they take into consideration. Infection to the kidney causes pain in the kidney area - pretty distinct pain, too. Also, pretty high fever results. That is two things I know for sure they use as criteria to define the difference between a UTI and pyelonephritis (kidney infection). UTI may cause a slight fever, but it only goes really high, if the infection reaches the kidney or the bloodstream. UTI can occur just from germs on the outside of your body, laying around your home (you can never be completely germ free, despite your best efforts), etc. You are more susceptible to little bugs that might normally be eliminated by your body without incident, just because you are immunosuppressed (your white blood cells are inadequate to really kick butt). That may explain why this has occurred only since you were diagnosed.
Sorry if this is not enough to make you feel any better. I am literally spouting off what I know from years of experience. I didn't look anything up to give you statistics and book diagnoses, because I know SaySusie has that kind of thing at her fingertips (at least it looks that way from the excellent stuff she puts in).
Hope you are feeling better soon. Cyber hugs to ya!

Susan

Oluwa
01-31-2008, 01:59 PM
Hey AB,

So, how did you fair with the insurance company? Aren't they maddening? I was doubled covered, mine and my husband's. I dropped his, wasn't worth the pain in the hinder. I am still waiting for reimbursement from my surgery in oh-six. Simple terrible, just terrible to put one through such agony while ill. A mess, chocolate mess.

And don't feel bad complaining. Know, I didn't think of it that way at all. I understand what your are dealing with it, and it causes more aches than a tooth ache....Frazzled?

My husband and I have the same BCBS, but his is with Michigan, mine South Carolina. What a difference in customer service and mission completed... mine to his. No one should have to endure listening to anothers' incompetency and their half ounce of common sense.

I would have loved to see your facial expressions while chatting with them and while on hold. :shock:

I never did roll under the covers. Been buzzing and yaking about. I am saddened...My fathers eye sight is failing more so. He has proliferative retinopathy. I feel his vulnerabilty. Had many laser treatments done. They are looking at performing a vitrectomy. Eye surgery gives me the willies. He knows pain...and I feel his in my heart.

I just ordered him jumbo print playing card and search puzzles his favorite things do since he rarely moves about. Narrowing of the spine keeps him up and laid back in a recliner. And all the secondary symptoms of diabetes. Maybe with this larger print he will still be able to have a few things that bring him joy at hand.

I know my voice, chatting with him brings him smiles and I hear his laughter. A true soft chuckle...

Here's to pooie days, they do a body good too.
Hugs,
Oluwa

Oluwa
01-31-2008, 02:40 PM
Hey Suzique..

Back at ya, squeeze.

Thank you for the info...experiences with patients is what provides the books with info...

I wonder why they didn't run such a test over a year ago, when I went to the ER. I was diagnosed with GERD and prescribed Protonix.

My PCP probably requested the test on Monday because I questioned why my stomach wasn't healing and being on Protonix for well over a year now and not the just 8 week regime. I am glad I added that to my IT Icky Lists...now I know.

My appointments with the PCP are brief. I am pretty direct and to the point. But he rarely asks me any questions, about how does this feel, how about this. I can't recall the last time I was temped. I do it regularly at home but mine has dropped. 97.1 as of the last week plus. Hypothyroidism....I lost weight involuntary, now it is creeping up again. 135...to 113...up to 120, most recent 127.

No one seems concerned except me. The nurse conveyed only the T3 was conducted. 3.134. Mid range. But as I was reading there are others items to take into consideration. TSH Levels, T-4, Thyroxine..so I have another draw tomorrow...sheeesh.

I have to set up an appointment with a new Rhuematologist. Mine doesn't know I canned him, and no one has called. Last seen was in September. I have one in mind...so maybe, I might gather up enough trust to invest into another.

While waiting in the holding area. I watch two babies with pacifiers dangling from their neck crawled about the carpet, their little rubber thumbs dragging the floor. I had mixed emotions, sad, mad...and mumbled in my head, if you were my babies.....and then two days later I find out I have H. Pylori, probably contributing to the ewwww in an indirect way. By just breathing in that room..probably spreading the ka-ka germ unknowingly.

And how are you fairing today?

Here it is a gloomy day, no blinding light piercing through my blinds. Thoughts are gloomy. I am feeding them with fresh cherries. Wondering now how much more will I have grown by tomorrow...Being fat, I get hungry too.

Enjoy your afternoon,
Oluwa

the_librarian
01-31-2008, 04:17 PM
Oluwa -

Things are finally cleared up with the insurance for now. I have BCBS as well. Mostly it is the fault of my current employer. They dropped me from insurance a month before they were supposed to, then added me back, but forgot to do it retroactively, then fixed that, but forgot to update my pharmaceutical portion. They've also paid me almost a full paycheck and asked me to immediately pay it back because they paid me in error (which I did because I'm honest!) Then they charged me for half of my dental insurance instead of all, so I had to write an additional check after I called them to ensure that everything was being paid properly. Going out on Short Term Disability has been very nerve-racking (wracking?). I never thought of it in print before.

Anyway. All the struggles are over for the day. I'm just kind of letting it go. Tomorrow Steve works half a day so we will try to take in a matinée. We'll see if I'm up to it. I had planned on painting some walls in my house this week, but alas the bug got me down. Maybe next week. Is it just me or do many many things get relegated to next week? I think this above all things keeps me in more of a panic than I've ever been. I was always a procrastinator, but now next week seems to never come around for the good/fun things.

Take care of yourself. Keep me posted on your new conditions. I have to set up an appointment with my hematologist. Yet another thing that I have been putting off...

Ashely

Oluwa
02-01-2008, 03:37 PM
AB,

Hope you had handfuls of popcorn and drinks big enough to feed a family of 5 at the matinee.

When you have nothing left but God, then for the first time you become aware that God is enough. Maude Royden.

Love,
Oluwa

Faith
02-01-2008, 08:45 PM
H Oluwa,

I am no longer, presently, living in Denial, USA.

Yesterday was my b-day, my hubby woke me up tickling me. I crawled out of bed to go to work. My 11 year old son made me breakfast and my daughter and son made a home-made b-day card. It was sweet without the consequnces of the banana. Stomach upset, GERD, fatigued, hip hurting.

Dragged. Gas tank - empty. At work, light-headed and wanting to go home and crawl back into bed. GERDIE is continuing the visit since the banana a couple of nights ago. Feel awful and not because it has anything to do with my birthday. Usually mostly upbeat. Already took Prilosec at breakfast; not working. Guzzling Tums as if they were Oluwa's beets. Hubby and kids took me out to dinner; afraid to eat but didn't want them upset with me if I didn't eat. Grrrrr :oops:

Calling the doc on Monday about the H. Pylori stuff. Wishing the stomach blues would permanently leave.

I am glad you are seeing a new rhuemy. Keep us updated. What kind of blood test is needed for the H. Pylori? I hope you are feeling better soon. Cyber hugs to all.

God is good.

Faith 8)

sick n tired
02-01-2008, 11:08 PM
Hey Faith,

My birthday is today. So happy birthday one day late. I did not visit the isle of denial today, either.

Here's to good days,

Karen

sick n tired
02-01-2008, 11:36 PM
So my biggest problem is tomorrow is my husband's birthday. I have 0 spoons. I really didn't have very many today. My idea of the perfect birthday would have been to stay in bed all day............but......like Faith, I didn't want to spoil everyone elses fun.
Well now there is my husbands day. We do not have the money to take him out, so the party will have to be at home....I really wish I were well for just one day. I know that I will work beyond endurance and be sorry, but what else can I do?
My eyes are so swollen that I am having a hard time seeing.
My stomach is terrible...GERD...Oluwa I think I will talk with my doc next week when I see him about the h pylori. How do they test for that?
Oh well, I will stop now and not get into a whole laundry list of symptoms....the fatigue is so debilitating that I can hardly function.....I will work tomorrow for my husbands happiness and know that Feb 3 will be coming.

Good night,

Karen

mnjodette
02-02-2008, 09:41 AM
Karen and Faith, I'm so sorry you're 'out of spoons!' I know the feeling, and can sympathize. It just seems like you could get a reprieve for your birthdays! I am sending you cyber-hugs and late birthday wishes to you both. I hope your personal supply of 'spoons' is replenished.

Karen, your family will understand if you can't do a big party for your hubby - sometime simple is better. His favorite one-dish meal unless he's a meat and potatoes guy!), a package cake mix, a few balloons - it really IS the thought that counts.

Take care.

Jody

Faith
02-03-2008, 01:09 AM
Hi Karen,

Thank you for the birthday wishes!! Happy belated birthday to you too and your husband. I hope you aren't having a setback; the spoon theory does help explain fatigue. Not everyone gets IT though.

Wow, Oluwa, yourself and I and our GERD problems. I just wished it would go away and not stay for 3, 4+ days hanging on like a bad germ. I almost took Reglan the other night instead of Prilosec. Reglan gives me the weird out of body feeling; shaking hands continously and read that Parkinson's side effects are normal. UGH; which is worse living with the symptoms or taking a pill for "relief" that causes a whole other set of problems??

I hope you both are feeling better. Happy Birthday Karen and we are truly blessed; it's just difficult at times to see it through IT. I hope you had a wonderful weekend and not very stressfull.

I need to make a visit to the Island of Denial; do you want to visit?
:o
Take care,

Faith 8)

Faith
02-03-2008, 01:15 AM
Hi Jody,

Thank you for the birthday wishes and understanding.

I really love the Spoon Theory. I only wish my parents understood it; my Dad says he knows what fatigue is because my Mom falls asleep in her chair in the evenings.

I need more and more spoons. Thank you for the cyber hugs and wishes. We are there more often so we understandl

Take care,

Faith 8)

Faith
02-03-2008, 01:19 AM
Hi Karen & Jody,

I have enjoyed talking with you both and I hope you are both feeling better.

Time to get some zzzzzz.

Take care,

Faith

Oluwa
02-03-2008, 01:08 PM
To all..

I wish I had an extra place setting to spare. Wishing all of you a feel good day today. I will ask God for blessings, for you, for me..for all...

Happy Belated Birthday Faith and Karen....

Hi Jody, how is the spirit today? Joining the work force tomorrow or laying low. More snow?

No more Denial, USA..ugh. My spirit stills feels the beach I once knew when I close my eyes....especially with all things coming to life down here. My Yoshino Cherry tree is clustered with buds. I can't wait, the when it loses its flowers it will be like the winter we never have. Snow of pedals. Ah, a little piece of heaven on earth. Serenity.

Ashley you okay in there...hello. Did the matiness kick your butt? My antibiotics is whooping mine. It is triggering a full flare, not like the waning one I have been having. Joints, especially my hands and feet fill with pain and feel tight like a wrenched turned blt. Kaka mouth from the meds. Taste like I have been sucking on asprins...I get the skin willies.

Short post. Just to let everyone know...I am trying to keep my balance. Spirit, mind and body. Tipsy tervy at times and not from a Martini. I am alive. Not singing, does moaning count?

Eyes feeling like two cold snowballs. :shock:
Still tracking down my wellness.
Hugs,
Oluwa

mnjodette
02-03-2008, 02:53 PM
Hi, Olua. Sending some of our sunshine (cold...yes...but sunny) to you, hoping it blesses your heart. Nice day today (for Northern Minnesota.) I'll go to work tomorrow - no snow; no deep-freeze, so no good excuse. I'm working through the stiffness and pain and coming out the other end now. Hope it lasts.

Spring!! Oh, I'd love to see that. Flowering trees! We planted three last fall (an Arbor Day treat) - real fruit-bearing apple trees. They are junior trees only - maybe 7 feet tall and spindly - but they'll have blossoms and maybe an apple or two. We have so many deer here - it's a deer highway through my 10 acres. We have a 6 foot fence, 10 feet in diameter, around each tree - or the little darlings would eat the trees to nubs. As much as I like the deer, they are no friend to foliage. Maybe it'll have to be 'bam-bam...no more Bambi!' (..just kidding...my husband is too much of a softie...)

Hope you are ALL well....

Jody

Oluwa
02-04-2008, 12:22 AM
Jody,

Thank you for the sunshine, now how about some ZZZZZZZZZZZZZZs. Insomnia. I am numb from being awake... that my pain is being overshadowed by my silver dollar size eyes.

Being orginally from the UP, I've seen quite a few Bambis, frolicking about, eating corn and apples and others, well, with a wide eyed dead stare dangling from a tree with snow as a backdrop.

I just want to go to sleep.
Oluwa

Oluwa
02-04-2008, 07:15 PM
Faith,

How is the GERD? Did you make an appointment today for the H. Pylori test?

Just checkin'.

Ugh..our denial didn't last long, eh?

Love,
Oluwa

mnjodette
02-05-2008, 04:38 AM
Oluwa...here I am awake...since 4:00...and I didn't get to sleep until nearly 1:00. Insomnia once again. Yawwwnnnn. I always feel like I lose a day when I don't sleep enough. I get blue, cranky, whiny, achey... Tomorrow night, a sleeping pill. One night is enough.

Hope you are having a restful night, Oluwa.

J.

Oluwa
02-05-2008, 07:12 AM
Jody,

Did you finally get any heavenly dreams? Or are you in a gaping yawn as you read this?

At work? I don't know how you do it, work, Lupus...I would be a bigger mess. I can't imagine dragging myself out of bed before the birds begin to sing and drive to my workspace. I would wake the birds with my grumpling and moaning.

I was in and out. Tossing and turning in my bath of sweat. Menopause, pills, It, thyroid. Happens about 4 time a night, wringing wet and during the day, oh about six times when I feel overwhelmed.

It is like a wave, that begins to drench my face. Over the terrain of my flesh. Terrain like the rolling hills in England. Even my pores on my calves open, moistened.

I have no temperature. Dropping more. As of late it is varing between 96.4 ans 97. 6. Haven't reach norm in a couple of weeks. I use to always run 99, being my normal for decades.

I had schedule further testing, if a diagnose can be made to see what is going on with my radiator and why it is over heating. But I cancelled. When I wake up, or I should say roll out of bed I look greasy and I look in the mirror , my hair looks like Linda Blair in the role, The Exorcist after a bout with the demons....stringy and bent.

I cancelled because I have to go in to see if the crud pack up himself and his neighbors and left my tummy after this dosing of antibiotics. Mentally it is creepy to me.

In the midst of another flare or should we call it a flair. Not that it is stylish, but it is unique to each of us and how it wears like a garment, dress. Ill fitting, tight, rubbing, bunching, pulling, pinching.

My hands are tight...I hope you are having a better morning since the sun has been up and taking the day on with a smile.

Is it Tuesday or Wednesday, who am I...
Oluwa

Oluwa
02-05-2008, 07:17 AM
Karen, sick n tired...

Replenishing your silverware, spoons? How's Gerdie?

Did you get a draw for H. Pylori?


Thinking of you...
Hugs,
Oluwa

Faith
02-05-2008, 02:14 PM
Hi Oluwa,

Thank you for reminding me. See, I forgot all about the wonderful blood work for H. Pylori.

The GERD finally quieted down Sunday, but comes and goes. Is yours like this too? 6-7 days of GERD, a couple of days not, and then it comes back on and off? Mmm, I am wondering if I am not the only one. I think Karen has GERD too.

So, what have you planted? My daughter picked out an amone plant and planted it in the front yard. It's beautiful!!

Thank you for checkin on me. How are you doing? Is your GERD gone? What were your test results? Please keep me updated.

Take care,

Faith

the_librarian
02-05-2008, 02:26 PM
hello all! So many posters, so little time. It is hard to keep up with everyone's goings on, but Happy Belated Birthday to those who recently had them. Mine is right around the corner (19th). We too are struggling to afford to do anything this year since there is still no word on my disability.

I've been low. I actually did go to a movie on Friday with my husband and got so sick about thirty minutes in that we had to leave. Taxes and Bills Saturday, loads of pain and exhaustion on Sunday and my husband and I were both sick on Monday.

I'm getting back on the horse today. Still haven't applied for the jobs I know are waiting out there, but I'm working on my application now.

So many boughts of insomnia. I've been having them too lately. No sleep until 4 am or not at all. Sleeping at 1 up at 3. I'm miserable. I think it is definitely contributing to the pain.

Oluwa - I'm so sorry you are flaring. This has been such a rough six-nine months for you. I"m praying. My Yoshima is not in blume or even bud. Most of my garden is still brown. It is sunny and beautiful here today, though so I'm trying to enjoy that.

My wrapper appointments have been blah lately. There are so many negative/depressing things churning inside, but I don't know how to let her in. We have spent so much time being caught up by what was going on in the moment that I haven't really delved as deeply as is impending. I feel the precipice again...

Sorry for the choppy post. That is how I feel today. Like the ocean during a storm.

Ashley

Oluwa
02-05-2008, 03:18 PM
Hi AB,

There you are.

No matinee, no popcorn or gallon size sodas? Ugh..sigh.

Gosh IT just won't give it up will he? Huggies...

I know we touched lightly on what ails your heart, abandoment issues. Maybe you need to direct the counselor on those issues, lead the hour as resolving those may help with your current ones. Does she provide cognitive therapy? A PhD? Changing your emotion that you associate with specific instances in your past.

Just open the door verbally or write it down and read it during your session or let her read it...that can open you up.

My husband has H. Pylori too :shock: My gut aches, constant hunger with bloated belly. It burns....

Waiting IT out..I bet he has patience too..ugh.
Oluwa

Oluwa
02-05-2008, 03:27 PM
Faith..Yes, us three..the Gerdie girls...

But having H. Pylori that can be the cause of the GERD, so I am praying it will resolve the GERD once I am done with this triple concoction. Praying no ulcer or any other complications to follow...

The meds, waiting to eat has my stomach in an uproar. I don't eat two before dosing and two hours after. Drugs have to be taken every 12 hours. Clock work...no down time for the crud. And if I forget to eat..I starve! Like I am right now....popping the drugs in 3 minutes and I don't get to eat till 7:30PM. Last I ate was at 10:00AM...

I want some grocers in my tummy now...ugh...and the crud on top of it makes you hungry too...whew...

Oh, goodness...lobster with drawn butter, caesar salad...olive oil...pineapple, scallops in a fresh tomato cool sauce...Hershey Bars....hungry. Feed me...anything...a carrot raw.

G-r-r-r-r-r,
Oluwa

Faith
02-05-2008, 04:52 PM
Hey Oluwa,

I am sending you a cyber hug. I am so sorry to hear that you both have it. Ugh!! Is your hubby home or on the road? I am praying it will leave permanently along with your GERD. I have never heard of H. Pylori. How do you get it?

Starving between meds is not good. That is just the pits; and to top it off it makes you hungry? Eeeck; maybe I don't want that test after all. lol. It sounds like your meds are similar to Prednisone; UGH. I was always HUNGRY. I hated it; now I just shove gum in my mouth in order to not eat when I am starving. Thankfully, that's not often. lol.

Okay, now you are making me hungry with drawn butter, caesar salad, olive oil, scallops in a fresh tomato cool sauce. I am now thinking of dinner. . . . mmmmm. Hang in there. . . . . . . No, the denial didn't last long. There have been many times I have just closed my eyes and pictured the waves lapping at my feet; it soothes my soul.

Love,
Faith :microwave:

Faith
02-05-2008, 05:07 PM
Hey Oluwa,

I was playing with the emoticons since I haven't used them much. Didn't realize the smiley face would be blown up in the micro. Ugh. Sorry. I was just thinking of dinner. lol.

I was reading an article that reminded me of you wherein they were discussing many patients who are diagnosed with back problems and end up having back surgery when it is in fact Lupus. I remember you had mentioned that you had a back surgery. I just wish I could remember where I read it.

Faith

sick n tired
02-05-2008, 10:30 PM
Hi Oluwa,

I am sorry that you are having such a hard time. H pylori sounds like a bear! I am afraid to have the test. What does it entail? Will that fix the gerd for you when you are off of the meds?

My doc just prescribed protonix because my nexxium is sooooo expensive. I hopw that this new drug does better.

Faith...I would love to go to the Island of Denial, maybe that is where I will tell my family that I have gone. They, (brothers,sister, their spouses, and mom) apparently had a pow-wow about me and are sure that I need to leave spouse and family for 3 months. Perhaps I should go there. One of my brothers believes that I am certifiable. I am when he is talking AT me. It makes me sooooooo mad when he is telling me how I feel. :mad: grrrr

Yes oluwa I am trying to replinish the spoons, but it is hard to do on no sleep. Go Cafeine!!! :morning: I know that it is bad for the kidneys, but it sure helps me for a while.

Well this is just choppy, rambling , and rambling. My brain stopped working days ago.
Say I have a good idea for all of us who are insomniacs......lets just have a slumber party....you know nobody ever sleeps at those. :)

Yawning, and yawning.......

Karen

sick n tired
02-05-2008, 10:37 PM
Hi Faith,
:microwave: That is sooooo funny... I sometimes feel just like smiley in a microwave.... :D :) :lol:

This is me dreaming of sleep,
:sleeping:

Oh Oluwa,
If your hair looks like linda blair in the exorcist does your head do this, too? :turn-l:

Dreaming of sleeping...someday....

Karen

sick n tired
02-05-2008, 10:47 PM
Hey Jody, Thanks for the happy birthday wishes.

My hubby is not a meat and potatoes kind of guy. I was able to put something together for him and we played games with the kids. I was so beat the next day that I was in bed until 1 pm. I could not sleep, but moving is really hard lately.

Well, I hope that all is well with you and you have a great night sleep. It is already midnight here and my stomach is hurting and burning so that I don't know when I will be able to go to bed and then if I will sleep.

Karen

Faith
02-05-2008, 11:36 PM
Hey Karen,

I am sorry to hear your siblings want you to leave your family!! ??? What is going on? Karen, you do not need this stress, they are draining you of all your energy!!! This is really sad!!! I am glad the birthday party went well!! :new-bday:

Let me know when you want to visit the Island of Denial. I will happily join you. Though, a slumber party sounds like fun too along with some movies because we won't be sleeping. I really wonder if we did a survey, how many of us would be wide awake all night?? Mm, something to think about. :halfrobot:

I am glad you liked the microwave; I thought it was funny. I loved the dreaming of sleep, I am there all day, morning, afternoon and evenings. lol.


:BIG:


How is GERDIE? I am dreading the H. Pylori test too!! Afraid to add another 3 pills to the already long list. Ugh, though it might be worth it to get rid of the GERD permanently. Mmmmm. Oluwa reminded me today; I had totally forgotten it. :idea:

Okay, I'm yawning. . . . :sleeping:
Take care,

Faith

PS-I will take the H. Pylori test if you will. I challenge you!! No, no more vampires. :evil:

This one is annoying; why can't I have one-third of this one's energy? :onfire: :puppydogeyes:

Oluwa
02-06-2008, 07:57 AM
My husband did leave Monday and will return on the 15th...oh hum...

The H. Pylori test was just a blood draw. The PrevPac supplies an acid inhibitor, but it doesn't feel strong enough as my stomach and chest hurts something awful. The inflammation get so intense it radiates throughout my chest, into my back and neck.

Currently, frustrated with my doctors. Spoke with one yesterday, he seemed oblivious to my pain complaint...I ended it with okay, whatever. That is so unlike me to be so dismissive. I was responding in kind.

It hurts so much I can't even think to type this morning...

I'll be back later,
Oluwa

mnjodette
02-06-2008, 08:05 AM
Karen, Faith, Oluwa....I wish your friend GERDIE would take a looonnngggg hike - yuk! :bad-words: I take Prilosec every morning, and so far the gastro stuff is under control.

BIG NEWS! I slept all night! :multi: First time in a week, but what the heck...I'll take it!

Off to work....

Jody

Oluwa
02-06-2008, 12:49 PM
Well, I pulled up my boot straps and I am trying to embrace my symptoms, side effects...and took control, scheduled appointments with a new Rhematologist for April 2...April good heavens, eh?

And also with a Women's Center, the 25th of this month..you know a women caring for women place for my private summers, fat and unwanted hairs that took hold up in unfamiliar territory. Like a weed seed, just tumbling about in the wind waiting for the right conditions to make it grow...egads...where next will they show I wonder.

Then I tried to schedule with a Gastro, but I need a referral for this particular doctor. I suppose I could go eeny, meeny, miny, moe. Catch a baby by the toe. If it squeals let it go, Eeny, meeny, miny, moe and pick another in yellow pages and find one that doesn't. Hopefully, I can get a referral from the GYN to see him, if not I'll wait until April.

Times it is hard searching for a doctor in a new area that you feel you can trust. I struggle here. I think I hit a gold mine, only to find out he is a land mine.

Sometimes I wonder do they think that dodad thing they called an ear is just an accessory?

Its been a rough week...bound to happen with IT and all the followers. Each vying to make their presence known to me and it isn't for my affection either...g-r-r-r-r-r-r-rrr.

I had taken out the stitches from the biopsy on my shank...snip, snip, pull, pull, one less encounter with a doctor.

My malar rash has tamed down. I usually get a few red dry bumps and pinkish, but this time it was red. It is back to my norm, no longer fushcia but a tickle me pink.

I think my body has accepted the antibiotics...it feels like I am coming out of this 7 day Flair and into a form of Intermission since I began dosing with the trunk of pills My finger joints are tight, like bands around each one but actually mild pain. And the monkey IT tossed on my back, I think it found another tree to hang in.

I was reading treating for H. Pylori doesn't make the GERDIE go away..ugh. I feel mine is a mix of several belly poppers. GERD, ulcer...and H. Pylori.

What is wild is my husband has no symptoms at all from this crud yet my doctor who soon will be Was, had seen my husband, scheduled an appointment for an upper GI x-ray, the Barium X-ray and not I after he popped positive for the spiral bacteria too.

And he charged him for a moderate visit and I, for a moderate high visit. Mine costs more. Do you think that is is because he is a man....humm. I wonder. Do you think it is like women's clothing, they are more expensive than men's. Hummmm. I am very happy my husband is getting immediate care, but he postponed it until the 18th..I want immediate attention too.

I've been eating Protonix for year and a half...crazy and he has been eating picante sauce, Indian food and all the hot spices for years.

What else is on my Wine List? The house whines? The usual chronics, my norm,

I cried, I laughed at myself for crying, then I cried because I was laughing..maddening then throw menopause into the mix. :crazyeyes: What a stew. And that was my morning and here I am...bright eyes, nope I could take a nap.

Just think when I wake from my nap I could be like new. I can't wait. Tata.
Night, night.
Oluwa

Faith
02-06-2008, 11:06 PM
Hi Jody,

Thank you for wishing GERDIE would take a long hike . . . . :P I take Prilosec 2x daily (20mg) and it helped for a while. Sometimes it doesn't help at all when it's really, really bad. It seems to change and revolve; it's definately never boring. :oops:

Congrats on sleeping all night!!! I bet you felt better today!! :)

:multi:

Take care,

Faith :lol:

Faith
02-06-2008, 11:45 PM
Hi Oluwa,

I am sorry to hear you are having a rough week. I am glad to hear you are seeing a new rhuemy. April will be here so soon.

I think we have all thought at times we have hit a goldmine; to only be sadly disapointed. It's the pitts; but you will find a rhuemy that you like. Many of them don't have ears; it's very sad. I think they should have to play reverse roles when in training so they can see how it feels to not be heard.

I think your EX Dr charged you more because he is a man and he is sexist!!!! That's awful!!!! :twisted:

I am now rid of my Lupus rash on my back; and I have a rash on my arm. Nope, it's not Lupus since it is nonresponsive to cortisone. I think it may be exema; don't want to see the dermo again and another dr appt. Though may not have a choice. I have seboratic dermatitis on my scalp and face; at least it has decreased and is not itching as bad as it was nor bleeding on my scalp.

Today, had my 6 month optometrist appt. Good news, there is no Plaquenil toxicity in my eyes. I told dr. red eyes every am, swollen this last weekend, and always dry. Asked me if I ever get dry mouth; yeeesssss, that's why I carry a water bottle around all the time in order to stay hydrated. Dr. puts orange drops in my eyes and says . . . . . . .

Blepharitis. :shock: Okay ladies; does anyone else have this? Any ideas? :shock: No, it has nothing to do with the Blarney Stone, though I really was wishing it did.

It is a chronic inflammation of the eyelid margins which can lead to styes in your eyes if not managed. I have to either purchase eyelid scrubs, not joking, packed like wipes in individual packages, or make a shampoo solution with Johnson's baby shampoo (No More Tears) and clean my eyes, eyelashes, every morning upon awakening and every night followed by eye drops several times per day. I have dry, dead debris on my eyeballs/eyelashes. :idea: :shock:

Dr went on to state it may be linked to Sjogren's. :mrgreen: Now I am wondering if this explains dry, cracked heals, enamel coming off of my teeth????

Any suggestions? I am probably the only woman that is going to take her "eyelash wash" along with moisture eye drops with her when taking a vacation or traveling.

Take care,

Faith :D

mnjodette
02-07-2008, 08:42 AM
Nope, Faith - not the only one! I'm supposed to wash my eyelids with baby shampoo, too! There are some oils there that prevent my tears from being as productive as they might be (what little tears I produce.) I've had Sjogren's for quite a while.

I can't bring myself to do it very often, though. It just feels weird!

Jody

Faith
02-07-2008, 01:24 PM
Thanks Jody,

At least I am not alone; I just wanted to cry yesterday. Another "label" to add to the list along with a possible med. I HATE this darn disease!!!

Do you know they can write a RX for us to produce more tears and saliva? Opt. told me to try the eyelash wash and see if it helped, if not a RX.

Thank you for responding as I thought I was the only one. The Opt. tells me that it is from dry eyes which would be from the Lupus or Sjogrens. Then the Rhuemy emails me back and says it is not part of Lupus. :crazyeyes:

Then I must have Sjogrens???? I have dry mouth and carry bottled water everywhere including my car though have never talked with rhuemy about it.

Do you have problems with your enamel on your teeth? I am not trying to be personal; it's just that sooo many strange things crop up and trying to link it to something is next to impossible.

Thanks for listening; I didn't mean to whine!!

Take care,

Faith :(

mnjodette
02-07-2008, 08:48 PM
Faith, if the questions are about one of these crazy diseases, it's sure not too personal...ask away! If you do have Sjogrens, yes your teeth enamel can be affected. You need to be sure your dentist knows that you may have Sjogren's. And, use a toothpaste and mouthwash made for dry mouth problems. (Oasis or Biotin.)

They can test for Sjogren's. One of the tests is a lip biopsy. They harvest a tiny little saliva gland. Pretty painless. I had it done about a year ago.

You can get eyedrops for dry eyes that can help you produce more tears (Restasis - you see it advertised all over the place.) It's a prescription - your eye doctor will problem recommend it. There are also pills - Evoxac - that are used to treat dry mouth and I guess can help dry eyes, too. I was on it for a short while, but quit taking it because I was on so many other things. My dry mouth is getting much worse now, though, so I may have to reconsider that decision!

Sjogren's Foundation website has good info. www.sjogrens.org

We all need to 'whine' sometimes - you never need to apologize about that!

Faith
02-07-2008, 09:33 PM
Thank you Jody for the honesty. I am not sure I have Sjogren's though I have suspected and wanted to remain in denial. I will ask my GP about the lip biopsy and I think there may be blood tests. So I take it you have Lupus, FM, and Sjogren's, Blepharitis, along with GERD?

So what do you use for your eyes? Eye drops or Restasis? I take it Restasis is probably not a generic nor is Evoxac? I will have to run those through the mail pharmacy just in case... The Opt. gave me some samples of eyelid scrubs; not bad though. The cost is $13.00 per month for morning scrubs only and not evening as suggested by opt so I guess $26.00 for the towlettes called OCuSOFT. I am going to try the Johnson's recipe tomorrow.

Thank you for the link to Sjogren's and the ear. I appreciate it. So, how did you feel today with a full night's sleep? I hope better!! I hope you get another night's sleep tonight.

Take care,

Faith :lilangel:

Oluwa
02-08-2008, 06:52 AM
Ashley,

Just checkin' to see if you've been in. Cloaking, I hope..then you know you are missed.

Bola lands tonight, in out for the weekend. From the freezing cold north to the warming south. The pool is looking more inviting each day. The ripple from the warm spring breeze across the turquoise top. Maybe in a month or so the temp will be right for my skin and bones. Topping at 58 now.

The swooshing and gurgling in my tummy has calmed to a low rumble. Remember months back I complained of bloat, bloated belly not proportionate to my size. Huge. Like a toad and his throat...croOOOak... That too has deflated. Now it is satiety and starving. Starving from the time empty before and after dosing.

How's the new career search coming along? Still searching for something that aligns with your education?

How's Steve? Does he still travel? Mum coming around? Siblings?

When I am alone, I am most vulnerable to dark thoughts. I am hoping you are not spending time alone...it causes IT to feed...inflicting more symptoms..

My cure..the F word. Focus, focus on something. Busy work for the mind. Paint the colors of summer, read the words of Steinbeck, fill your sills with indoor plants, sew some pillows with ribbons and smooth velvet, redo your paper files or clean your jewelry box and it will have no reason to venture there. In the zone, the Twilight Zone...

Have you set the path, the direction for your unwrapping session to go? In the direction about yesterdays? Healing the past? Sometimes it is difficult to venture into the known, backwards, history than into the unknown. With each glance back, each word spoken, you will realize all that sadness about yesterday is a time thief...

If you haven't had your hug today..here is a tight one from me...squueeeeeze. Okay, you can let go know...kidding, squuueeeezing some more.

Love,
Oluwa

the_librarian
02-08-2008, 08:53 AM
Oluwa -

We actually had an excellent (read very difficult) session this week. I feel like we are on the brink of so much and yes, she is a PhD. We are trying to identify those associations and I'm feeling more disfunctional than ever. What I'm realizing is that I'm one of the most nurturing people you could ever meet...as long as you are a woman. I think this stems form the complete lack of male nurture toward women in my family? I'm a bit of a care taker. When it comes to men though, I'm no good. It is completely unnatural for me. That is difficult, because my husband is amazing and he deserves to be nurtured, to be reassured of my love for him and to be SHOWN how much I love him, not just told. This was quite a breakthrough on my part this week.

It is funny because at first I was annoyed with how little he was opening up to his wrapper, but now I realize that most of my "opening up" to mine has been chatter. Never stay on the same topic more than a week, etc. I never thought of my relationships with men as anything but healthy. I learned so much watching the bad relationships of my woman dominant family that I thought I had avoided most of the pitfalls. Unfortunately, I've taken on many of the bad roles of their spouses. I'm the abuser (emotionally). It is subtle and never vicious, but it is there. Nasty attitude with worthless comments never kept to myself. I'm the controller. I never knew. I always thought I was strong. My husband and I haven't talked about it. I haven't told him of my revelation. I'm working to make things better. I'm apologizing when I say stupid things and validating his feelings of being attacked. Is this self preservation because of the molestation? the rape?

I spoke with my best friend in Greece yesterday, she said I'm the most nurturing person she's ever met. I'm the one everyone goes to when things are bad. I'm everyone's support. I love that I can give this to them. I don't feel like they owe me anything. The fact that they come to me is reward enough. I'm not bossy or telling them what to do. I listen. I am their therapy session. I comment when appropriate, I ask questions to get a better understanding, I work through the issue with them. I do get emotionally involved because I love them, but I don't get caught up in the drama.

I don't do any of this for my husband or any man. I think I used to, but I really honestly don't know. I'm not being hard on myself (though maybe I should be?) This is like learning math...One plus one equals two?!? Excellent! I wonder what two plus two equals? I must admit, in my analytical way, I feel almost disconnected from the problem. Is that nutso?

On a happier note, we are going back to the movies today! Stomach seems to be under control. I am so excited. I have to run. Shower, pep myself up. Pick up my husband from work at 12:30 and then a full day of dating. It will be lovely.

Hope you all have wonderful, pain free, exotic weekends.

AB

Oluwa
02-13-2008, 10:08 AM
And how was the date, AB?

Will pop in later to write some more. I have an appointment with the eye doc..but I wanted to let you know I see you in there.

I've been late in my posts everywhere. The medicines were kicking my hinder. One minute, on hour feeling norm and the next...gag, gurgle with a headache. One more day...and I hope the pain in my gut is through.

Doing the best I can today even got a smile on my face,
Love,
Oluwa

the_librarian
02-13-2008, 02:24 PM
Oluwa -

I'm glad you posted. I'm slow with my posting too. Trying to get a life (tehehe) The date was wonderful. We had such a great weekend. Then yesterday, the pain began anew. I'm taking pain killers...blah. I'm also forcing myself to work out anyway to try to keep my circulation moving. It is such a huge struggle.

Someone suggested taking pamprin instead of tylenol if I wasn't going to take my vicodin. Have you (or anyone else) ever heard of pamprin as a medication that treats more of the symptoms than tylenol?

Anyway, I'm actually doing really well in spirit which is a HUGE improvement. Sending healthy {{{vibes}}} your way.

Ashley

Oluwa
02-14-2008, 03:37 PM
Happy Hearts Day, AB...

My love bird is downstairs working and I, in my activity room tinkering.
And where is yours?

I am eye deep in tulips. I think my husband bought the florist out. Bouquets of every color. He knows I love tulips in the Spring. Oranges and yellows, pinks and purples...reds and whites. I spent the later part of the morning arranging vases. I feel like I am in a bit of heaven. I love splashes of live color about the house.

Dining in or out, it is my call since I am the uncommitted to life one. I think bought out and brought in...

Out and about yesterday, had my eye prescription redone. Too strong, no wonder I had snowball cold eyeballs, too strong. And swtich my transitons lens into prescription sunglasses. The fluroscent lights are getting too much to bare. Overwhelmed with nausea while clouds filled my head...ruined my trip. The optical technician, asked if she could have what I was on...hummm...I replied, sure, your lights. She looked at me if I was out in the corn, well, I was. Anthony sent me there. Twilight Zone. Seen it?

Oh girl, my belly is soooooo much better. Just Plaquenil slushing around in the mix. Seems weird to feel normal inside my stomach. Before when I stopped dairy I thought that was normal, but oh boy, I know it now. No bloat, no burps or slight explosions in the valley below. No more hunger right after I eat or full after I had a tiny bit. I am no longer a host...whooooa...

I still have deep pain under my sternum, but I believe that is from Gerdie. And my appointment with the gastro isn't till the April 2nd...Ucler? Barretts? I just know it isn't right in my food tube.

I don't know anything about Pamprin. I stopped taking the narcotics and dose when it becomes intolerable with Naproxen, 2 doses at once then every 8 hours. I feel if I am inflamed I should take an anti-inflammatory. The narcotics turn me into the Exorcist. Definitely not happy, pain free but not happy.

Spirit still high I hope...mine is catching up..catching the ((((vibes))))
Oluwa

Oluwa
02-15-2008, 12:45 PM
Karen,

Are you having a "sick n tired" week? Thinking of you, missing you.

Hugs,
Oluwa

Oluwa
02-17-2008, 01:34 PM
Hey AB...

Spring is in the air, dirt under my nails, and twigs in my hair. Spend the overcast cool late morning redoing front porch planters and hanging baskets.

Boston Ferns, huge ones I placed in the baskets and in the floor pots vines of variegated and bright green ivy, Rosemary and deep blue Lobelia. Pruned the scarred limbs from winter's frost from the Crape Myrtles and Birch trees...and wrestled with a few relentless weeds.

Can you believe I even have an extra place setting to spare. If I was IT free, I could have, would have mowed, dug, planted, edged and etc with ease. But I am pleased and satisfied with my small Sunday feat.

It a my kind of a day...and IT wasn't invited and never intruded with it's ugly self. It just shadow my every move, waiting and waiting for me to overdo.

Enjoyed a warm shower and a bowl of icy berries...now the rest of the day like the beginning, is mine, all mine...and it's not being shared with IT and his cronies...

Purchased more trees from the nursery yesterday..Pink Stellar Dogwoods, Gardenias and a Ann Magnolia. My husband said next weekend he will begin a dig, today was his day to watch golf. He is still perched in the bed since this AM, getting rested for his early in the dark morning flight out tomorrow. If I didn't feel well I would have been right there with him...

But it has been a my kind of day...

How was yours?
Oluwa

Oluwa
02-19-2008, 04:47 PM
Okay, where are my cronies...not IT's, mine..

Hello in there...It's me GERDIE..Hello....Suzique, Ashley, Sick n Tired...Faith...missing you guys on the board...

Hugs full of love,
Oluwa

sick n tired
02-19-2008, 11:11 PM
Hey gerdie

It;s me gerdie.:-) Sorry I have been down for a while. Stress has really been kicking me in the sitapon.

Had one son get in trouble at school for saying something ugly to a girl and telling her to leave him alone or else. Who, in turn, made it her mission to tell at least half of the high school before it got to the principle. they are in a private school or he might have been expelled for the supposed threat. One of the biggest probs was that the girls mother was a friend of mine. I say was because apparently that is past tense.

So, We found out about this on the same day that we were told that an older adopted son was seen doing marijuana. Unbelievable because he has seen how that stuff and worse ruined his birth parents life. So while hubby and I were trying to figure out how to handle the 18 year old, the call came in from the principle about the 16 year old. I was unable to sleep for days. Now I am paying for it.

Of course, all of that is in a nutshell. My brothers response was awful. (he is dating my ex-friend that I mentioned above)......CALGON TAKE ME AWAY.....

So anyway, I have not been able to handle getting on the computer much less talking. Right now I am soooo close to tears. It hurts to be rejected.

I really wish that I could get away. The only problem would be that IT would come with me.

I hope all finds you well.........

Off begging calgon for help,

Karen

sick n tired
02-20-2008, 01:43 PM
Well........Calgon never answered....I have been unable to get out of bed today..Pain everywhere..........ok gross exaggeration my hair does not hurt.....Gerdie is aweful though....getting nauseated at the thought of eating much less eating.....fuzzy mind...just call me fuzzy,wuzzy.......no spoons
I made dinner from scratch last night...did all of the shopping,too and even walked around the block....could this be a reaction to doing too much?......floating...at least my brain feels like it is floating.....kids aren't home from school,yet and I have no dinner for them....Hubby said some of them should try to come up with something...hmmm...maybe I will ask

Well I am just rambling on. I hope all is well with all who read this.

as Scarlett would say
Tomorrow is another Day,

Karen

sick n tired
02-20-2008, 02:03 PM
Hi Faith,

Have you taken the Pylori test? I know that you challenged me, but i have not taken it. Not because I am feeling great, just procrastination and busy-ness.

You are right that my family is adding stress. Not sure how to stop it. Hubby says not to answer the phone :D

Hope IT is not getting you down.

In Him,

Karen

Oluwa
02-20-2008, 02:07 PM
Karen..there you are...

Yep probably a reaction especially cooking from scratch.

I take Protonix for GERDIE and that really helps. I was off it when I was on my suitcase of antibiotics..and the small arsenal prescription contained a pump inhibitor. Prevac I think and that didn't work. I suffered for two weeks..now the flame seems to be smothering out..

What do you take...maybe try Protonix...

I am just hoping after a 2 month dosing of Protonix again, maybe my tummy will heal. I think I have an ulcer in there....I have only one place setting, I will give you the spoon and I get the fork...

I am well as I read this, that...slight headache I was trying to nurse away..

Left overs tonight at your house I hope,
Oluwa

sick n tired
02-20-2008, 02:14 PM
Hi Oluwa,

I take protonix, too. I also think that there is an ulcer. When I get so sick that I throw up there is blood. ( Eww gross) Sorry.

The week that I was having trouble with my boys, I was very sick. Not sure if it was stress or illness that is going around.

I hate head aches....Hope yours goes away...

Sending aspirine thoughts to you,

Karen

Oluwa
02-20-2008, 02:31 PM
Karen,

I would throw up ribbons of blood, but I think that came from esophagus from the violent act.

Since dosing with Protonix, I don't get the acid burn or the severe pains under my sternum all the way up and into my back..

I've been on it for almost two years, a year and a half atleast...

Have you been to a gastro?


Love,
Oh

sick n tired
02-20-2008, 04:35 PM
Hey Oh,

I was scoped last year and he wanted to wait to scope me until fall, I think. He found the beginnings of Barretts. Lately I think that will take me out long before the lupus has a chance. My dad died of esophageal cancer 16 months ago....sometimes I dream that he is still here...His death was so bad to watch, I don't want to go that way. The good thing is that barretts is very slow growing. The dr told me not to worry for 10 years....whatever...

I'm glad that you are not getting the strong pains in the esophogus that you were.

"See" ya,

Karen

Oluwa
02-20-2008, 04:44 PM
Oh no Karen, I don't think that is a good thing, today or 10 years from now...

Can it be stopped when it is small?

My Mum died of cancer, I can faintly see the pain she felt and visually you could what the cancer was doing to her physically. The memory is draped in a mist, so I don't remember the ugly..her last days but I know they existed. Hard to explain...

I clearly can see her beauty when she was alive and vibrant. I think my mind is protecting my heart to forget what devastation cancer can do, did to my Mum...

I am sorry your Daddy had cancer...I am sorry you had to see your Daddy go through it. They need to find a cure fore that life altering disease. It hurts everyone in the family...

Hugs,
Oluwa

sick n tired
02-20-2008, 05:10 PM
There is no cure, but the only thing that can stop it or at least slow it down is preventing Gerd. That is what causes barretts. What I understand about it is that the stomach lining is pink and the esophogeal is not. Not sure what the color is. It is like the juices from the stomach keep coming into the esophagus and that in time changes the molecules of the esophagus to look like the lining of the stomach. The theory is when we have molecules mutating and changing then the cancer that is in all of our bodies is able to do its damage.

All that said, I just have to keep taking the protonix and go on with my life.

My dad got sick one month before he succumbed. We did not know he was deathly ill until he had a scope at the end of that month. I drove to their house the day of the scope and he was dead 5 days later. The shortness was a blessing but we (mom,siblings,myself) were left feeling as if a bus had run over us. When it is less than a week then you can still remember what he was doing just one week prior and that was driving he and mom around. I realized that I had come full circle in my life when I was helping my dad by taking him to the bathroom and later changing him. Something that I am sure he did for me when I was young.

I read on another post of yours that you gave your mom her last steam bath. That is a very touching picture. I believe that the soft sweet images that you have for your mom are a blessing for you.

Hugs and a squeeze back to you,

Karen

Oluwa
02-20-2008, 05:27 PM
Indeed, the sauna is a treasured memory in my heart...and too a one I chuckle with too.

After I bathed her as far as I would, I handed her the cloth and said you will have to do your valley below.. She gave me her MUm look and said I know.

Another memory, a week before she died, I said my last goodbye, at the time I didn't know it would be. I had to fly out after being with her for a month. I did realize it would soon happen though. She had moved back to the UP to be with her sisters and brothers, after the doctors told her she may live 6 months more...

My memory...too weak to hold herself up..we sat facing each, our foreheads pressed together, eye to eye, nose to nose..like little girls. Talking and then I see, straining out of the corner of my eye she was grasping with her thumb and index, in a pinch hold..pinching for something off my black sweater.

I'm wondering was the morphine creating hallucinations. She jerk as she missed this something. Three attempts. Then she put her fingers up close to my eye and said I got it. Foreheads still pressed I look out of the corner of my eye. It was a lint ball. My Mum being my Mummy to the end. I love you.

Ah, I miss you Momma.
One of your babies.

She wrote in her journal. I love my babies each and everyone.

Oluwa
02-20-2008, 05:30 PM
Dear Heavenly Father,

I ask of you to gather Karen up, and protect her. Thank you God. Amen.

sick n tired
02-20-2008, 08:01 PM
Thanks Oluwa ........for your friendship and your sweetness...

May God Bless you and yours,

Karen

Oluwa
02-21-2008, 04:38 PM
Thank you Karen.

How goes life today?

Head hug,
Oluwa

Oluwa
02-21-2008, 04:58 PM
Ashley,

Hey you, what's new and improved..I hope all with you is?

Me, oh, bubbles in my tummy, well I think in my urethra. Weird sensation to have feel it while I walk, stand or sit...Monday I will have it inspected.

Finishing up my weekend alone, B will be in tomorrow night. Spend the week chatting it up..

Spoke with my Auntie...87 years old. She is fun, funny and very much alert, young at heart. My Mum's sister. She is the last one of 9 children. My Uncle died last week, he was 92. My MooMoo died at 90...as with the rest except my Mum.

As we were talking, she had to let her mixed dog out...almost half my Aunties weight. My Auntie 5' 100lbs. She put the phone down. Tramp, tramp, I hear her down the porch stairs...Go on, Casey, go on....tramp, tramp back up the steps. I hear...""Oluwa, Oluwa"...I am here, here I am Auntie, I say. Then I hear her laughing, thinking her hearing aid popped out...

She comes to the phone..""Oluwa", here I was looking for you, where did you go. I forgot you were on the phone, I thought you were here." In here little trucker imitation voice. We roared. I suppose after chatting it up for 2 hours I would seem like I was in the room. Wondering should I be worried?

I always enjoy my chats with her, she takes me down memory lane. I always learn something new about their baby sister, my Mum.

I promised her I would send homemade cookies after she told me she bought Chip Ahoys. Chip Ahoys??? We are a family who uses recipes and not a a colored bag with a price tag. To the market tomorrow or maybe tonight for some chips.

Salad with leftover salmon cake and the debate is on my menu...yours?

Really, I pray all is well with you...and Steve...
Head hug,
Oluwa

sick n tired
02-21-2008, 10:39 PM
Hey Oluwa,

You are probably asleep as I write this. It has been a busy and painful day. I am having some real problems with my feet. I think that it is the achilles tendon, but am not sure. the right food is worse. I look like I am 100 when I try to walk.
Tomorrow I am getting up early to drive to Waco.(abt. 2 hrs, away) My daughter is playing soccer. her team has made the playoffs and this weekend is all about whether the team places 1,2,or3. It was rainy and cold today and so I don't expect a great weather for tomorrow.
So does your Auntie live near you? She sounds like quite a character.

Well I think that I need to sound off as it is almost 12am here.

Nite,nite, don't let the bed bugs bite,
karen

Suzique
02-22-2008, 12:31 PM
Karen,
Describe you leg/foot pain, please. I was in ER all of yesterday, the entire thing instigated by pain in my left foot/leg. I can barely bear weight on it for the agony. My doctor was afraid it was a blood clot, and because it was accompanied by shortness of breath, she also feared I had a clot in my lung. Well, that was negative, but now it seems as though it is likely muscle break down from a weird reaction to an anti-cholesterol drug. It has mostly affected the muscles in my lungs and left leg, but could progress to other areas, if I continued on the drug. I had not ever dealt with this kind of thing before, so I wondered if others had.
Did yours begin after an injury? Do you have "hot spots" or pain when you bend your foot at the ankle? Mine is at the ankle and across the arch of my foot then shoots up my leg. My chest hurts when I touch it or take a breath. Not much treatment, as I understand it: just stop the drug and flush my body with clear liquids - mostly water.
The doctor tells me that if there is going to be an odd reaction to something, Lupus patients are often the ones with the luck to roll those die. Don't you just love what IT does to us?
Let us know how your daughter's team does in the games today. We'll cheer for her: Rah! Rah! Go Team!!!

Susan

Oluwa
02-22-2008, 03:31 PM
I may have been up Karen. I toss. I'm up. I'm down.

My Auntie lives in the UP of Michigan.

I think I wrote about my cookies in another post...sheesh I am lost... good heavens my mind just hit a steel wall.

I'll just type in the present...it is raining here, still.

Do you do AOL?

I don't know how you girls do it..work, children, spouses. I just have me. I am not high maintence, but by my fatigue one would think I was. Looking at me one would tell..er, ahem no she isn't. I use to love to doll up, now I look like a "Soccer Mum"...chuckling...without the children. Nothng meant...

My feet and heels hurt. More so when I sit for long peiods and/or wearing heels. So sensitive since IT took over my life. My norm is like walking on a smooth pebble outside flooring, when ill I feel like I am walking on marbles that are rolling on the floor...

My brain is locked and frozen like a PC...maybe I need someting meaty t eat beside the few cookies I ate. Not used to so much sugar at once...

Head hug,
Oluwa

sick n tired
02-22-2008, 09:58 PM
Hey Suzique,

So sorry to hear about your foot. These feet pains are awful, arent' they? My ankle hurts more on my right foot than my left. but the worse pain is I think in the achilles part. Not sure if it is achilles but it makes it close to impossible to walk. The only thing that rheumy said was to wear high heals if it was achilles. Don't think I can, though. I broke my right foot last June. Just the 5th meta tarsle. (I sound so medical) Can't spell, though. Suzique did they count off in nurses training if you could not spell metatarsal? Anyway, not sure if that is the cause. The only other problem I have with the foot is over my right big toe.....not sure what the official word for big toe is........ I felt something pop yesterday when I got up.

Oluwa,

Your foot pain sounds more like mine. Has your doc told you what it is? Or what to do with it. I would assume that he hasn't told you to walk in heels.:-)

I do not have AOL. Do you do anything else....

Well I look like a soccer mom. I don't like to be classified as such since the press kept saying that the "soccer moms" in the U S were the ones who voted for Pres Clinton because we thought he was good looking. All politics aside......EWWWWW...Not my type.....ewwww....I go for handsome or at least nice looking.:-)

Nite,nite,

Karen

sick n tired
02-22-2008, 10:10 PM
Oh I forgot.........Becca's soccer team lost....But they got 3rd place in
State!!! It was a big ceremony with medals. The team is young. Most of the girls on it are just 9th graders. So 3 more years to get better.

Thanks for asking,

Karen

sits_inthe_corner
02-23-2008, 02:41 AM
Oluwa, my heel days are over :puppydogeyes: Makes me soooo sad. I have some very pretty heels.

I went to an orthotics specialist and had inserts made. They really helped alot. But they made if very clear to me...I absolutely had to give up wearing heals.

So I found :B-fly: pretty pretty low spring summer and fall shoes, but I'm stuck with ugly wuggly winter shoes, but my feet are much better.

"gets out the bonkya on the head hammer"

Let go of your heels for the health of your feets and anklets.

Oluwa
02-23-2008, 07:57 AM
Hello...

They say it it the tiny joint that are inflammed. An IT thing..Plaquenil took a huge amount of the pain away...huge amount.

I wear Danskos about the house...

I wear 2.5 to 4 inches (3-4 inches usually platform types) outside the house. They will have to pry me out of my stilettos when I am dead...chuckling. Charleston Heston....

I need a bit of heel for my dead back....three surgeries, hardware and donor bone...

I think soccer Mums are all beautiful. I wish I was really one..it comes with children.

My big toe pops too...maybe arthritis? Right in the ball of my hooves.

Whas a bonkya and who has a hammer head?

AOL only....I was inquiring because they have game rooms and if up late we could battle at bingo...or word whomp while vieing for 4K...

Choke hold...I mean head hug,
Oluwa



Wondering where Ashley is, been...? Thinking of you!

sits_inthe_corner
02-23-2008, 09:01 AM
ROFLMAO Oluwa I bet your doctor gives you the :| look alot! You and your heels :roll: lol.

I hardly ever wear my orothotics now and my feet dont hurt at all any more. Though....some days I'm nervous cause even though they dont hurt...when I take a step...I get this wierd tension feeling...like one of my little footie bones is about to break. I dont push it...I tread lightly. My sister broke her ankle when she dropped a frozen pie on it. Her bone density was way way down. That's how they found out she had ceiliacs on top of the lupus...yikes! Since she has gotten the gluten out of her diet she has been able to regain most of her bone density. She's still down 25% though. She'll never regain that.

Hope you're having a good day... :)

Oluwa
02-23-2008, 04:19 PM
Actually he once said, Great shoes...

No one ever said not to wear them...I love looking good pain...

Oluwa
02-25-2008, 03:03 PM
My appointment went like this...

Was informed..Lupus can slow the metabolism down.

I didn't fit the criteria for going into peri-menopause, menopause...because..

My monthly discomfort didn't gradually phase out from lighter to lighter to nil nor did it go from flash floods, sparatic and then none. I just went from 27-28 day cycle to bam, zip nothing...

Low temperatures and weight gain could be thyroid...

My description o my flashes didn't seem menopausal..

I left three vials of blood and a smear...

Test to be conduct...
3 for thyroid...
testosterone levels
Folicle Stimulating Hormone...

Humm I forgot the rest..she mentioned and I think I am being tested for it..
Ovarian Failure
Polycystic Ovary Syndrome

And I have an appointment to have an Ultrasound conducted on my bladder...next Wednesday or was it Tuesday...

I thought I was seeing a "doctor" but I found out after I left she was a PA. The pelvic exam didn't feel very thorough. My ovaries didn't seem to have been examined...hummm.In the end..I still feel confused... :shock:

Maybe when the tests come back, my confusion will turn either into a mass confusion or a relief...

But anyway, I will catch up on posts later...this girl feels like I was tossed into a dryer for an hour. Wondering what a half hour would feel like? I was outside in the cold toiling in the dirt again yesterday. Fingers and feet feel mangled like my clothes now...exhausted I am

I feel like the last chocolate that was bitten into the box.. Gosh that looks weird. One T or two T's..humm. Biten? Bitten? Two..I think, I hope...

I've spelled things worse...ah, maybe I need to don on a pair of bloomers on my head. Why do they call bloomers a pair? Because of the two holes for legs? Why don't they call a t-shirt or a bra, a pair of bra or a pair of t-shirts..They have holes for two limbs. too..Humm. I'll let you know why when I wake up from my nap...

Till then...enjoy this poem by G. Norris called Gathering Up Crumbs....

Be careful with the crumbs.
Do not overlook them.
Be careful with the crumbs;
The little chances to love,
the tiny getstures, the morsels
that feed the minims.
Take care of the crumbs;
a look, a laugh, a smile,
a teardrop, an open hand.
Take care of the crumbs.
They are food also.
Do not let them fall.
Gather them. Cherish them

A round of head hugs on the house...
Goodnap,
Oluwa

mnjodette
02-25-2008, 03:13 PM
I hope tests give you answers...not more questions, Oluwa. Sleep, sleep, sleep.

Where DO you find these wonderful poems? This one struck me so deeply...so easy to miss the 'crumbs'...

Thanks for sharing.

Hope a nap has you feeling spunky again...dancing with a pair of...well, a pair of somethings on your head.

Jody

Oluwa
02-25-2008, 08:39 PM
Ashley...I miss you :cry:
Oluwa

When I attended sunday school, I was told if I say this prayer God will know what I request, what I need, what is in my heart...he will know. I will tell you what is...all of you...Good night...

Our Father, who art in heaven, Hallowed be thy Name.
Thy kingdom come. Thy will be done, On earth as it is in heaven.
Give us this day our daily bread. And forgive us our trespasses,
As we forgive those who trespass against us. And lead us not into temptation, But deliver us from evil.
For thine is the kingdom, and the power, and the glory, for ever and ever.
Thank you, God. Amen.

sick n tired
02-25-2008, 11:05 PM
Hi Oluwa,

I agree with Jody, I hope test give you answere. I also have weight gain and low temp, but my thyroid is low normal. Hopefully yours is low.....kind of sounds funny to say it that way....

Hope you had a great nights sleep.

Karen

Oluwa
02-26-2008, 07:33 AM
Jody...Karen...

IT has got me by the hair, the legs, the arms, the hands. I am kicking and screaming but he is taking me down....

It tagged me Sunday, I was running on bounced checks. I feel like I am dying a slow death, bankrupting...ugh.

Back to bed..see I can sleep him off..

Thank you for posting to me...I hope you both are doing good.

I dislike IT and what IT does to us... :cry:

No one to hug my head...my husband flew out yesterday.
Oluwa

Saysusie
02-26-2008, 10:25 AM
Oluwa;
I am sending you warm and comforting hugs until you hubby returns. Please rest, take care of yourself and remember you are loved!!

Peace and Blessings
Saysusie

mnjodette
02-26-2008, 07:18 PM
We love you Oluwa...and are sending you only the best thoughts tonight. One thing we know about IT...IT comes and (eventually) IT goes. Hope it takes IT's leave of you very soon. In the meantime, rest rest rest.

Jody

Pretti in Pink
02-26-2008, 07:32 PM
Hang in there Oluwas and don't give in to IT.

sick n tired
02-26-2008, 10:41 PM
Hey Oluwa,

Sorry you are so down and out. It is so hard when the hubby is not here. Just stay in bed and rest.

Many head hugs from me,

Karen

Oluwa
02-27-2008, 10:40 AM
You guys are fabulous...
I feel your hugs...squeezing back...

I choked up and swelled with tears when I read, thank you for taking time to think of me. I wasn't focusing on tomorrow that I would possibly feel better. I was letting IT hijack my spirit. I was slowly stepping into the dark space till I read your words to me. I peeked in last night...I am happy I did.

It recentered me. I had a great cry. I kept telling myself what Jody posted, It goes away. I laid in bed and said Bye, bye IT. Bye, bye..over and over till I fell asleep. I treated it like a hangover, sleep it off.

I still feel a bit beaten, tired, headache...but I need to move about. My body is still swollen, H20 retention was like a water cooler at work. Half empty now...yesterday was full....glub, glub..

Seen those commercials, where the head expands like a balloon being blown, with each breathe bigger and bigger till her face gets flat? That's me...that was my head, cartoon..literally. My glasses at my temples were so tight, I had tire tracks at my temples...indents. Still slight indentations.

My legs looked like two stacked timber logs bound for the south from the northwest Casades on a flatbed. Fingers looked like Minnie Mouse's. No form, just white blobs.

Pain, like I was a walnut inbetween a hand nutcracker...from fertilizating the yard, burying plants, light digging...hand weeding. Towards the end of our dig I was having spasms in my, fingers, legs, hinder and feet. They still throb today. My back felt like a King crab's back that had been stepped on..crunch, crush...I stopped.

I had gained 6.2 pounds of H20 in two days. Today down 4 of it...crazy. What makes one swell so much? I shake my shaker very lightly. I don't like to see the granules...Matter of fact Monday and Tuesday I ate fresh and raw. Sunday beef, carrots with broccoliflower...humm. Reaction you suspect? Allergic to a bit of hard labor? Maybe a reaction to my, my smear...chuckle.

I am half back....Maybe IT will get bored and realize I am not stressing over this last assault anymore.

The sun is out, the breeze is waving my outdoor sheers like a flag on a pole. I think I will take a sit on the back porch and feel the breeze lift the hair on my skin...ah...like a caress.

Love, lots of it,
Oluwa

sits_inthe_corner
02-27-2008, 11:41 AM
Oluwa

Ya dear sweet kitten....just keep batting away at IT. And have a cat nap. Wear satin jammies when ya sleep so IT will slide right off your body and leave ya well rested. I know how I feel when my legs stiffen up and feel like someone is driving a wooden stake down through my legs. I have spent many a moment sitting on the stairs to the basement with the laundry scattered all around me bawling my eyes out like a baby.

Frustrated angry exhausted. But It does fade off...It does go away. Hope IT takes a hike real soon. Rest well....feel better. :sleeping:

Oluwa
02-27-2008, 06:33 PM
SITC,

Well, ya know if I found you sitting on the basements steps, laundry scattered about I would say how would you like your jeans washed, hot or cold...undies folded, socks rolled or tucked in?

I am sorry you cry alone too...next time just shove the clothes in the washer and dryer dirty till you are ready to do them..or just buy new ones.

Head hug,
Love,
Oluwa

P.S...you crack me up to...

sits_inthe_corner
02-27-2008, 06:39 PM
Oluwa

Well turns out I can buy all new clothes lol...hubby decided to be helpful and washed my clothes...that's righ my work close...my fussy need to be washed a certain way clothes...got tossed in with his work socks and towels then right into the dryer.....just picture the look of pure joy on my face.

But ya know what ... I dont give a flying fig. He was trying to help out. Maybe my boss will take pitty on me and give me a raise. Or at the very least...send my butt home for not being dressed appropriately for the office...either way it's a win win lol.

Thanks for the hugssss and the help with the laundry Oluwa :)

Oluwa
02-28-2008, 05:20 PM
There you go...new ones. Someone was listening to us....

Love,
Oluwa

Oluwa
02-28-2008, 05:35 PM
AB,

I am worried about you. I kind of get a sick belly feeling thinking about what you maybe going through. I hope your PC crashed...and that is why we haven't heard from you.

I like to imagine you're laid up in the curve on the branches in a mango tree, Sun on your face, the breeze carrying your red hair...eating the warm sweet orange flesh of the mangoes...

Or did you and Gladys Kravitz have it out...I haven't seen much of mine lately. I smell the smoke of her cigarettes, imagining each long drawn puff. With each pull her face turns into a frown. The drift of the smoke gets pulled into the waves of the outside air, over the fence, through my trees...moving into my porch sheers and right up my nose...ewwwww...

I pray for your health, I pray for you spirit, I pray that God will see you through. I pray that your just too busy, enjoying, life, food, Steve, school...the spring.

Be well, Ashley,
Love,
Oluwa

Oluwa
03-04-2008, 11:33 AM
Hey Ashley,

Another day without you...well, this girl here is missing you. Many prayers in the night, head on my pillow I say for you...

The north warming up a bit? Birds are chirping and frogs are croaking. Buds fill our newly planted Dogwood and Star Magnolia...when they bloom I will have some snaps for you.

The birds have been tearing up my Boston Ferns in the hanging baskets on our porch. For a nest or to be a pest? The grass is still brown with flecks of green making their way through... pretty soon, mow cutting.

My urethra is still a bubble maker, untrasound is tomorrow. How is one suppose to hold 32 ounces of H2oh....after eight ounces I gotta go...

You know, I just had an unusual convo with the nurse, in brief saying my tests are abnormal, but won't give me the results till after my ultrasound tomorrow. Wow...what is a girl to make of that? I asked questions of her, feeling perplex. I asked questions with demand, feeling irritated. I asked and asked..I could have asked all day...she wasn't budging, and no answer was given. Perhaps a protect the doctor rule...

Now my mind floods with questions, doubt..anxiety. I always think the worse, so I won't be disappointed if it is the worse. More accepting to me that way...and relieved when it it something minor.

I just don't know what normal pain is anymore. I am afraid what I think is normal is something that has been abnormal. If that is the case, then it has been abnormal for sometime. Perhaps my perception is abnormal and all is normal. Is this normal or abnormal to go on about normalcy?

If your body isn't keeping up with you, I hope you spirit is. Don't get swallowed whole..or fall into the hole. Thoughts of you are with me. Words for you are in my prayers..

Head hugs,
Love,
Oluwa

mnjodette
03-04-2008, 01:03 PM
Oluwa, I'm sending good thoughts and prayers for your ultrasound and test results. What is normal....hmmmmm. Do any of us know now? I just had that conversation with my rheumy today. I am disappointed that I'm not 'better' but then it occurred to me that maybe this is as 'better' as I'm going to get. If that's the case, then I can just start accepting it - but how do I know? You're right....abnormal may be the new normal.

I'm hoping you feel so well that a trip to England, Nigeria...anywhere....is possible...and soon!

I'm excited and nervous about my little vacation. So afraid I will be too tired to enjoy it, or out of breath, or too sore.....can't go there. Just have to think good thoughts!!!

Hugs to you, dear Oluwa.

Jody

Oluwa
03-04-2008, 04:03 PM
Jody,

Thank you..I feel the good thoughts...

Let your concierge do all the thinking and scheduling of transportation, ticket and etc..

Just relax, pace yourself...remember the islands are for relaxing, the sights will be there tomorrow, next year. So enjoy the beaches, the local food, dinner on the lanai...evening music and torch lit lamps....

Walk the shores of the hotels at night...they open into each other...I enjoy that. The music, the sounds of the waves, people laughter...stop and rest in a cabana by their pool....

Now pamper yourself for today on, drink lots of water, rest, rest...house work will wait...order take out for home. Rub a bit of suntan SPF with coconut smell, to feel what lies ahead...Slowly pack your suitcase...

And remember stretch deep and long...settles the nerves...

And run cold water on your feet when you get to the hotel....

Aloha with hugs,
Oluwa

sits_inthe_corner
03-04-2008, 04:10 PM
OoOooOo jody...I'm sooo jealous! I hope you have a wonderful time. Just to be somewhere warm right now would be wonderful lol. Sit in the shade and sip on a cool drink for us. Hope you can go barefoot in sandals. No heels of course. :)

mnjodette
03-05-2008, 08:15 AM
Thank you all for your good wishes! I've been packing...slowly...for a week now. A bit at a time. Trying to pack light, but want to take my special pillow so I still need a big suitcase. :roll: This will be a good trip....this will be a good trip....this will be a good trip..... (that's me, talking myself into believing it.....) :lol:

Oluwa
03-05-2008, 05:21 PM
Jody,

You WILL have a marvelous time...worry not about little IT, I'll mind after him good, the little monster...gotta spoil him to keep happy and content.

No answers at my appointment today. The technician said the doctor will call me after reviewing all my tests. She did however say I had three tumors...and something about the lining....ovaries look good. Didn't mention the bladder. Forgot to ask. My mind was stuck on the tumors...

Huh? Whaaaaaat? :shock: They are more likely benign tumors, fibroids...she said :shock:

Asked about the other tests and she said the doctor will call me. I am thinking it is much ado about nothing. Then too I haven't received a negative pap smear in the mail yet...hummm. Maybe my neighbor got it...

I'll call Friday morning if I don't hear from the GYN tomorrow...

Myrtle Beach...It is about one and half hour from my place or a bit more.

I had been there once, last year. Stayed at the Hilton on the beach. It was a cold, rainy. But I took some magnificent pictures of the gray rainy beach with the hotels aligned in a row...beautiful. The time I had went, there was not much activity. It was at the end of April...nothing really was opened on the boardwalk...just spent the weekend...

Charleston does have beautiful homes along the intra coastal waterways....lovely alley gardens. Plantations..Ponderosa Pines and Palm trees. Oak trees and Hanging Spanish Moss.

Beyond it's beauty....it is very historic, very tragic, somethings to be proud of and somethings to be ashamed of. Charleston is where the slavery trade took place, port of entry into the USA and also where the Civil War began.

Oh before I forget, you can purchase pineapples and coconuts at the airport..and don't forget the Chocolate covered Macadamia nuts...

Have FUN.....and have a safe flight...
Hugs,
Oluwa

Oluwa
03-06-2008, 01:43 PM
I called the GYN.

I wait.

Rolling my fingers on the table..waiting..tap..tap..tap..yawn..g-r-r-rr--r.


I wait some more.


:shock:

sits_inthe_corner
03-06-2008, 03:48 PM
Oluwa

Sorry sweetie....waiting sucks. I hope you hear something soon. My family doctor has asked for an ultrasound...I'm waiting to hear back about an appointment time.

Hope they get your straightened out soon...but not too straight...I like ya a little bent :lol:

Oluwa
03-06-2008, 08:07 PM
Here's my rant...

Thursday in the southeast, in South Carolina, in a town named Summerville, here I sit, hand holding my head...(not while I type...)

I just don't understand the health care providers here. It is so different from home, so different. And this is my home now...for now.

It has a been a long day. Trying to keep focus, while thoughts of chewing steel nails swirled through my head.
I maybe one of many patients to them, but they are one doctor to me.

I am so frustrated and I have excellent health insurance. Expensive. Here, it seems, it doesn't matter how much I pay, doesn't matter if I research, drive by their office, thinking, hoping I am choosing the best...I still end up with the crappies.

Monday, the nurse calls says my tests are abnormal, questioning if I scheduled an ultrasound. But wouldn't provide the detailed results...

Dropped my drawers and stirrup-ed in yesterday..fibroid tumors..

Today after I called, a different nurse returned my call...my results are not in yet and when they arrive the nurse will call me. :shock:

I had a gazillion questions and in the end no empathy for me, but I felt it for her..what chaos...whose to believe what...

So, are they really in, and lost..or they were looking at another's when they said they were abnormal...

Now I feel abnormal for not being able to compute this confusion...

My head hurts from trying to understand it. I don't understand why it is so difficult here.

My eyes hurt from crying out of frustration...I look like I got drunk and had a hangover too all in one day. Actually I feel like it too. Eyes blood shot from Sjogrens...cheeks flaming like Cherry Kool-Aid stain...

And IT is loving it...just chewing at me. It thrives on my stress. I ache from head to toe.

Tomorrow just has to be different...

Does everyone in this area fall through the cracks, or is it a bunch of crock. From eye care, to dental care, to my anterior spine surgery..to vagina care. There has to be better..

Still waiting,
Oluwa

rob
03-07-2008, 07:33 AM
Oluwa,

That just plain sucks. I am having some of the same problems you are. Wait two months for a new rhemo, only to find out he's an incompetent moron who knows little to nothing about SLE. My latest rheumotologist was also very insulting, telling a nurse in another room that I was one of those "know-it-all" patients, thinking I must be not only stupid, but also deaf, as I heard him berate me to this nurse. I mentioned to him that I have a degree in mechanical engineering, and that my IQ is substantially higher than the minimum to join Mensa. He gave me this vacant look, and silence. He knew he was busted, and wasn't even man enough, or professional enough to acknowledge his mistake of thinking I was out of earshot. I wish I could do something to help you Oluwa. I wish the people you seek out for medical help could see you as a person, not just another face in their crowd of patients. When did people in the medical field lose their empathy and ability to see their patients as individuals, humans, who need their help, who are desperate for their help. I feel your frustration Oluwa, I really do.


P.S.- I've been thinking about your comments on how we have a mental picture, or impression of what our fellow members here are like, either physically, or personality wise. Here's how I see you-

Oluwa, you have the humor of Steve Martin, you have the wisdom of Yoda, and your poetry, well, that's all yours and as such, is beyond compare.

Rob

Pretti in Pink
03-07-2008, 08:27 AM
Oluwa,

Hang in there, Don't let it take you over. Fight back, hard..... harder......

Oluwa
03-07-2008, 09:26 AM
Rob,

I recall an incident, not so much the words of the topic the person who was idle chattering about me, but my response. " When you speak of other people, anyone could be listening and another person my not take it so lightly as I would" and I left it at that.

Or when someone is questioning something of me, about me...such as your encounter. I would ask something along the line, "Do you have a questioning regarding my intelligence? Education starts by opening a book and I have opened many."

I always say without patients, how would a doctor learn. We, us.. we are a valuable source of information, shame on him for not speaking in private... Everyone talks about someone...and they should be kept private, not an ear shot away or keep it to themselves. I like the latter...

Recently this morning, I called the lab to see how long the turn about for the results were. Two days she said...sheesh. Someone is lying to me, I think it is the nurse...time to get the momentum back within me, regarding my healthcare and seek out another doctor. Good gravy, I dread that...I just wish someone could take my steering wheel for a while.

I ended the conversation with the lab, "I guess it is time to seek out a new doctor." Her reply, "That is your prerogative." "Yes, yes it is..it is just busines afterall, EH? Just like seeking another lab. Thank you, bye." Her tone, the word prerogative..was just not a good combo for me at the time. Now, I have to make sure to ask which lab is being used. My choice..my money, taking charge of my care, instead of being a file, on a shelf, with my name spelled wrong in the corner...

One would think I am trying to find a doctor to tell me the answers I want to hear, I just want some answers. And to receive substandard care is a bit unsettling to me, considering the amount they charge my insurance, and my monthly premium I pay to seek out any doctor and not just a PP. Frankly, regardless on what one pays, large or small we should all receive excellent care..

Not all people who want to be doctors make good doctors...and not all good doctors all well-mannered. I will take a good doctor with no manners. A good doctor is a hard find.

I am sorry your doctor insulted you....he was probably so full of himself he didn't realize what you were talking about. Oblivious to everyone except his needs, the need to fill his low self esteem. I also find people play dumb, when they know they are wrong. He was wrong, regardless.

Thank you for thinking of me in a kind way. Times I feel like I look like Yoda. I've always been told I am more sensitve than the most. When I was young, in my teens I thought that meant hurt feelings but I realize it meant I feel for everything, and not just me. I feel everything, I feel the world breathe. Sometimes it maddening, but more often than not it is a type of self indulgence. To breathe, see, hear and feel it all.. Colors, I always talk about color. I associate people and feelings with colors...

Today I feel like the piece of carboard attached to the back of a pad of paper. Dirty gray and bent at the corners. Tired, frustrated, dumbfounded...but still optimistic I will get recycled sometime today and perhaps become the front cover of a school girl's spiral ringed binder notebook...in a tie-dye color of yellows and oranges...

The doctors office closes at noon today..think they will be calling...humm. Nope.

Waiting, but with patience today...Que sera, sera.....Doris Day in her misty, fuzzy, soft out photographs...
Oluwa

Oluwa
03-11-2008, 12:20 PM
Callouses upon my fingertips from the touch tone telly...

I raised a stink with the GYN office, was able to schedule a follow-up for the 18th.

This is what I have been told by the nurses....

Prometrium 400mg at night - 10 days.

My lining of my pear is thick. I have two cysts and one fibroid. Biggest beginning 2.2cm and the other two about 1cm. That is like an inch and the other almost 1/2 inch. I think? No wonder it feels crowded in there...two's a company three is a crowd...

They want to induce a once a month discomfort, to see if it the lining thins...if not a D&C to test the endometrium.

From my research....I will ask on the 18th why a D&C and not an Endometrial biopsy to test for cancer. Or perhaps it is to get rid of the old rug...

Maybe I am post menopause, but the indicators indicates I am not. It just went poof, all done...it left as fast as it came one day while I was the Milwaukee Zoo eating Cotton Candy...

Supposedly it wanes for years....

My Mum supposedly had a hysterectomy at 44 years old, but no one knows why after I spoke with my siblings. I never knew she even had the procedure. It saddens me if she went it alone.

Oh, and I have an MRI for my thorax and lumbar on the 13th...my pain has increased, huge. Egads back to dosing with my mean pills. So, I have been hibernating in my activity room for two days.

How does one contend with these moods. I am Sybil or am I one of Sybil's personalities.....

Am I me or are they me,
Oluwa

Oluwa
03-17-2008, 11:01 AM
Hello...

IT seems to have taken a seat in the back. Thank you IT. Though it still tests me to see if I am double jointed. Gr-r-r-rr- Ahem..I am not..

I just have other woes that have taken front seat for now...

Funny never all at once, to be done and over with it. Is it because IT will never be done with it?

My currents...contenders..

Jelly fish...MRI revealed herniations at T4-5 and T5-6. Severity unknown as I only spoke with the nurse. DDD. I have tremendous pain but not nerve related. I can tell. Hopefully an epidural of scaryroids will be all that is needed. I just don't think I could handle another back surgery. Appointment April 15.

The pear is still ailing...appointment for further info tomorrow and to seek another GYN.

Everything is drying up...eyes, mouth, skin..discs...maybe one day I will be just a mound of dust on my pillow. Today I am just a bit of a raisin...still a little plumpness to me...

I believe why I struggle so mentally with IT, is don't know how to surrender to IT. Resign myself to the fact that I have IT. It is IT.

I have the diagnose.
I have the literature.
I have the pills.
I have the pain.
I have the diaper rash face.
I have the walking in mud feeling.

Ah, ha...I don't have the mindset. I always enjoyed my day, my life before..I just don't know how to tweak my thoughts. I am missing something..anyone find it? A marble, a cog, a cell. Maybe I just forgot how to keep it....

I feel once I find the way to that thinking I won't find myself in the dark anymore or at least less often. What is a full life with IT and my other woes? My life is half full. If I knew there wasn't more out there, if I hadn't experience more then I would think it was full. Would I? Would that be like having a beautiful charcoaled outdoor grilled sirloin burger today and then given a grill grid stained Boca Boca Burger tomorrow?

I also find what makes it difficult for me, is I don't know how to be selfish. I don't know how to live a life about me. Me. Me. I don't know how to coddle, pamper, tend to me all day. Tend to my food, my skin, my sleep, my exercise, my pills, the sun, the environment, the suds, the ointments...the appointments, the blood....

Boy what a full circle of emotions...I am alright. I am happy today. I just got lost in the moment. Thoughts I push down, thoughts I choke and gag on...

It is a lovely day in South Carolina...I'm having a good day. I just don't want to feel my hand resting on my thigh anymore...

Me, me, me....it is all about me.
Oluwa

sits_inthe_corner
03-17-2008, 03:44 PM
Oluwa

Soft hugs .... it's a struggle and a battle and a pain inthe behind. (as well as other places :lol: )

I'm glad your spirits are more elevated today...soft spring days are coming...hang on.

sick n tired
03-17-2008, 09:25 PM
Oluwa,

I am not sure how to make it about me either. Especially when someone else needs me. I am on the backburner of the brain right now.

Glad to hear that you are feeling better,

Its all about you,you,you,
Karen

mnjodette
03-18-2008, 09:38 PM
Oluwa, so sorry you've been walking a difficult path lately - but I'm glad to hear yesterday was a better day. You....All about you? I don't think so! You give so much to everyone of us who visits this forum - what would we do without your humor, wisdom and caring words?

I hope whatever course of treatment you and your doctors decide on brings you some relief. You are in my prayers, dear friend.

Jody

Faith
03-18-2008, 10:42 PM
Oluwa,

You are in my thoughts and prayers. Hang in there; I am thinking positive thoughts about you.

I have had cysts; they are not fun at all. I can completely sympthasize nor are they comfortable. It's been about 15 years ago. They were removed via laproscopy, endiometrosis (cobwebs) vacuumed up and removed on two different occasions while I was in sleepy land on an outpatient basis. They were benign thankfully.

I was then told to take birth control pills or the patch (Evrapatch is cool) in order to control and minimize any future cysts and the endometriosis. For 15 years, it has worked and I have not been in again to have any cysts removed.

I hope this helps or eases your mind a little. Charleston has a lot of history and I visited there when I was 5 years old. I would love to visit again someday and I love history; more especially the timeframe of the Civil War. I am a huge history buff. I hope you are feeling better and have found an excellent ob/gyn. I hope you are out of pain and feeling better.

Keep us updated.

Faith 8)

Oluwa
03-19-2008, 10:02 AM
Jody..is that you...how's the Hula Girl...?

You guys, SITC, Karen. Jody, Faith..are just too kind, thank you, thank you for sharing your heart, your words with me...

On the vagina, the ailing pear...the update..

Lining is 7mm thick. Like 3 mm too thick. Probably like the thickness of a watermelon rind and the texture of a old orange peel I imagine. Anything above 4mm can be predisposed to cancer the PA said. First they want me to have a dot, a spot, anything that resembles a period. If not by the 24th, next Monday I will be schedule for an Ultrasound wand, scary looking gadget...and a D&C, drug induce sleep to clean, scrape it out like a Halloween pumpkin...egads.

Then she would like to put me on Hormone Replacement Therapy to maintain a thin lining...any opinions of this...anyone, anything?

It scares me a bit from all one has heard about HRT. It scares me, being here in the Charleston area because they advertise hysterectomies in the newspaper like a furniture sale at Haverty's. I wish I had clipped that advert when I was having the newspaper delivered..

And I also found out yesterday I have a bulging disc at the L4-L5 too. No wonder I walk like I have crappy pants when I stand and take a few strides from sitting...

Gee now I have to get up from PC....and do the crappy pants walk.

Jody I will look for you in the forum about your holiday in few...need a back break..


Tata...hugs full of love,
Oluwa

sits_inthe_corner
03-19-2008, 12:23 PM
Owula

I'ld be scared too! I'm a wuss when it comes to people sticking things in me that shouldn't be there lol. Hugsss baby doll.

As for the Hormone Replacement Therapy, I've read some nasty stuff about that too. I'ld have more of a converstaion with your doctor about that. Ask if there are any alternatives...like perhaps a natural method. Let then know you have read some nasty things about this and it concerns you. It's a tough choice...hugsss.

Oluwa
03-19-2008, 06:44 PM
SIT C,

I did mention my reservations about HRT to the PA, the side effects and she said in the case study that is out in the public it was based on women who were predisposed in developing breast cancer..hereditary. But since I am not, but then I still don't know what my Mum had, apparently it was a secret...that was well kept by her..humm.

My sister says, Black Cohosh. She is 55. But I think that is for hot flash fried in the frying pan...

Right now I am on a bio-identical progesterone. I will request the bio-identical estrogen form if that is what is require to keep my lining thin like a grape's skin. Excess estrogen, synthetic is what causes breast cancer from my research....and Estrone and estradiol cause most of the risks associated with estrogen use that is used in bio-identical but they use such low percentages...and more of Estriol..

So, what's a girl to do...keep a leather pear...tanned like a hide...cancer of the pear or of the breast, coin toss. Or keep getting scraped like a pumpkin..wonder if that is an option. Or, probably they would want to take the pear and toss it into the garbage disposal...

Sometimes I believe some of this came to be from using all those INVITRO drugs. I was scared... yet I kept injecting them into my tummy into my thigh....

Rotten fruit in my basket..

Night night SITC.
Oluwa I mean Owula...

Faith
03-19-2008, 10:54 PM
Oluwa,

I have heard of HRT but in a compounded form that you rub into your wrists. It really does work apparently. Do you have a compounding pharmacy ner by?

I am praying for you; everything will be okay.

Take care,

Faith 8)

Oluwa
03-20-2008, 11:15 AM
Hormel Ham OR Hormonal Replacement. I still don't know all the ingredients or how they are processed either..ugh. Neither are good for you...or are they if you're hungry or your pear is rotting..

After reading The Women's Health Initiative study and approved, disapproved wording at FDA.org my head is spinning like a CD in my D: drive...

:shock:
Help me.
Oluwa

sits_inthe_corner
03-20-2008, 01:41 PM
Oluwa,

As your doctor to hook you up with somepeople who have used the treatment so you can have some insider information and make your choice with some peace of mind. My mother was the first in this country to have a particular type of hip replacement. She spent some time going to hospitals and talking to patients who where thinking about having the proceedure. :lol: we used to tease her about being the pin up girl for hip replacement. It wouldn't hurt to ask if there is a similar thing available for this proceedure...and if there isn't...THERE DARN WELL SHOULD BE!

Getting off my soap box now.:)

mnjodette
03-20-2008, 03:36 PM
Hi, Oluwa...how are you today? How's the back...how's the pear? I did have HRT, for a number of years. This was BEFORE all the 'hub-bub' about nasty side effects. I 'weaned' myself off of it when the news broke. But it was pretty terrible. I had killer hot flashes and other lovely menopausal symptoms. I tried many of the 'natural' hormonal replacement kind of things, or stuff that was supposed to help with the symptoms of menopause. Nada...nothin'...zilch. I just suffered. Still have hot flashes, but now they're lupus-hotties. :lol: I really hope you will find resolution without all of that. Thinking of you.......

Jody

Oluwa
03-20-2008, 04:33 PM
Jody,

I am a bit sluggish...back is being managed by Ultracet and the pear feels huge. Tight and bloated below, maybe Auntie Flo is stopping in for a visit.

Sorry you had to go through all that...the scare. How long have you had the hotties. I asked the PA about being Lupus related. I thought they meno hot flashes were from the chest up...Oh, no, hot Flashes are head to toe, leaves you wringing wet she said.. I can deal with the night baths, but the lining has me concerned.

Basically HRT prolongs the menopausal symptoms, eh?

Gosh what is a girl to do if I have to make that decision. I just hope a dot come, the lining sheds and I can go through menopause with my fits, moods and private saunas....

SITC...there is a lot of info on the Internet about hormone replacement therapy. I have a book on bioidenticals...then there is Suzanne Somers. Living. Seems as of late I am getting all this weird stuff.

Maybe I will end up looking like Goldie Hawn in Death Becomes Her...like a patchwork quilt...


Enjoy the night you two...keep warm, keep dry..it was about 70 here today...
Night,
Oluwa

mnjodette
03-21-2008, 08:01 AM
I had endometriosis (is that spelled right?) when I was pretty young and ended up having a hysterectomy at 28. They didn't take my ovaries, so I didn't have to go through menopause at 28 (good grief! what a thought...that was a hard time without hot flashes!) It was difficult to resign myself to no more children at that young age (I had just met my current hubby) but I can't say I missed the health problems that had plagued me for so long. Interesting story: I had met with at least 3 GYNs back then, and the doctor that finally convinced me that the hysterectomy was the only choice left wrote me a letter when he was about to retire. He wanted to know if I was OK with that decision, or if I had regrets. He was a devout Catholic (I learned) and didn't make those recommendations without a lot of thought - he wanted to be sure it had been the right recommendation for me. I thought that was pretty awesome. (It WAS the right decision, looking back.)

I sure do rattle on......

Hope today is a good one!

sits_inthe_corner
03-21-2008, 10:35 AM
Jody...if ya cant rattle on here where can ya.

What I like about this board is it's warm and friendly. Like sitting down for a heart to heart with dear friends over a coffee or a tea. :)

The stupid menopause fairy has been circling my house for years now...I wish the hag would hurry up and land already.

I've had it all except the natural end. There is no rhyme or reason to my cycle any more. So I'm always prepaired. I've had the flashes and the sweats and the mood swings the skin changes...enough already. LOL

sick n tired
03-21-2008, 01:44 PM
The same hag has been circling my house also, SITC. The only problem is I don't have periods anymore. I had a partial hysterectomy 11 years ago after my uterous ruptured. The hot flashes can be awful, I'm just not sure if they are hormonal. In the past I have used the progestin that you rub on your hands or chest. It worked pretty well.

Oluwa I hope that you are feeling better, today. I like how SITC describes this forum. So do you want some coffee or tea and will you take cream or suger with it.

Sipping away,

Karen

sits_inthe_corner
03-21-2008, 02:35 PM
Mint tea straight up thanks or coffee with some of that international no fat creamer hazel nut stuff. Probably bad as heck for ya but I quit smoking almost two years ago...heck I deserve something dont I?

Would you like some banana bread?

mnjodette
03-21-2008, 05:54 PM
Ummm....banana bread - my favorite. I think I can smell it from here....

sick n tired
03-22-2008, 10:10 PM
You most certianly do deserve something special. Quitting smoking is no easy feat. It takes some real grit and perseverance. So hazlenut creamer sounds great.

I think I will have iced coffee, with splenda and some of your creamer, if that's ok. I also like mint tea and green tea. I love iced green tea straight.

Banana bread would be great. How bout if I bring some fresh strawberries and yogurt or cream? personally I love vanilla yogurt with my fruit.

I am glad to hear that you are feeling better.

Nighty night,

Karen

sick n tired
03-22-2008, 10:15 PM
So Jody, what drink will you be having with SITC's fresh banana bread?

sick n tired
03-23-2008, 12:13 AM
Oluwa,

How are you feeling? I have been praying for you and hope that your symptoms abate...

Time to kick some lupus, Arse...Lol

So do you want to come to the tea/coffee party?

Brewing the beverages and slicing the strawberries,

Karen

sick n tired
03-23-2008, 12:15 AM
:D :D

I mean.........time to kick some lupus "sit apon" :lol:

Faith
03-23-2008, 04:50 PM
Hi Jody and Karen,

Can I bring some Chai tea along with grilled zuchinni? It sounds lovely.

Faith :lol:

sits_inthe_corner
03-23-2008, 06:05 PM
I love zuchinni...it's good in sooo many things. yummmm.

sick n tired
03-23-2008, 07:25 PM
mmm......I love anything zuchini

Oluwa
03-24-2008, 06:57 AM
I go something like this...

I was enjoying a good Saturday, beautiful warm breezy day...picking palm trees. Covered head to toe in appropriate IT gear. Stopped at a farmers market for a fresh lunch.

Skipping along and stumble, tumble, in the hole..not a limb, not a protruding rock, branch, clump of dirt to break my fall or to grab onto. I fell in.

Bamm...

I became weak.
I became overwhelmed.
I couldn't see. Tunnel vision, blurry, blacks spots.
Fluttering my eyes quickly trying to focus.
I staggered. I held on.
I went into a panic mode.
I went into a fit of anger.
I never said the word hate so may times in all my life.
I hate me.
I hate IT.
I hate being sick.
I hate, I hate, I hate...
My husband just sat and drove and his eyes were huge.
In shock he was.
I was too.
I barely remember it and what I do recall I cringe.
I lost my voice.
I lost my mind.
I lost my joy.
I have red mounts on my face that resemble like bee stings.
I can't do this anymore.
I am stuck.

Where is Oluwa.
Where is me.
I died a long time ago.
All because of a disease.
I don't think I am that strong.
I try.
Maybe I need a shrink wrapper.

Another Xanax....back to bed. That is where I will be.

Maybe my dreams will bring me out of this. I usually have beautiful ones.

Thank you for being my friends. I'll be back, just too hard sometimes to talk of gloom and doom.

rob
03-24-2008, 08:18 AM
I understand the hate Oluwa, I really do. The feeling of being backed into a corner, with nowhere to go. Trapped in a body that doesn't want you in it anymore. When cornered, we lash out. Sometimes, it's all we have left. Doom and gloom, or not, you have friends here, and you always will. My thoughts, and my prayers are with you today. Please know that.

Saysusie
03-24-2008, 09:28 AM
Oh Oluwa;
I know it is hard to talk of gloom and doom, especially when you feel as if it hounds you at every turn. You needed that moment of rage, where you could scream, throw fury out of every pore; let it ooze out of you like squeezing a tube of toothpaste. Squeeze and squeeze, scream and scream until it and you are empty, spent and released of all of the anger, hate, frustration, rage etc. Then, scream again, just to make sure that your body releases it all. Flail, kick, punch, do whatever you need to do.
You fall into a hole, you have every right to be angry. You have every right to hate what this disease has done to you. There is nothing wrong with you for being angry and hating this disease; there is nothing wrong with you for expressing this anger and hatred! Especially when it seems as if problems, due to this disease, never end and they line-up, one behind the other, to slap us in our faces when we get too positive about ourselves, our health and our lives!
But, did you know that, interjected in that line of woes, are your friends here, your family, your loved-ones and those who care about you and we are ready to slap the @#!$ out of those woes..we are here to kick butt just for you! So, together, we pummel until you can see more loving faces than anything else. Until you, once again, remember that you are never alone...even when you feel you are at your loneliest place, we are here for you!
Take care of yourself, we will be here when you are ready and whenever you need us. We are you "300"
I found this quote in "Faith and Fellowship" written by a wonderful lady, I thought that she might read it now and find how her own gift of words can help her also:
("Cast all your care upon Him" is "Unload your distresses upon God." Have you ever seen a dump truck get rid of its load? The driver simply pushes a button or pulls on a lever and the heavy load is discharged at the prescribed spot. The truck would be of no use if it carried its burden forever.

We were never meant to crush under the weight of care. We can push the button of faith or pull the lever of trust and our burden is discharged upon the shoulder of Him who said He would gladly bear it. Unload the anxieties of the present moment upon Him, for He cares for you. If He loved you enough to take the burden of your sins, can't you trust him to take away every lesser burden as well?)

Peace and Blessings
Saysusie

sick n tired
03-24-2008, 11:46 AM
Oh Oluwa,

I am soooo sorry that you feel this awful. Actually, it is not bad to get the anger and frustration all out. When you are in the dark IT hole, it is hard to see light of day. I pray that you are able to squint and see this little pin light.

You know the very small one at the end of the tunnell....I hope that it is larger than I just described. I know if you can see it maybe you can realize that there are better days, just get there.

In out trials with Nadia, the light has seemed non existent, but I know if I squint, I can see what looks like a light. I just hope the light I am seeing is not like the light in Nemo.

It's time to give you back something.............................

head hugs, never letting go.....rocking back and forth....soft squeezing hugs.....feeling like a soft blanket wrapped around you and falling back on the floating comfort of peace...

Karen

Oluwa
03-24-2008, 02:10 PM
I am blind. I cannot see. I try to so hard to find the lever. I can not feel the shape of a lever at all through my rusty painful fingers. I read the words, of my Bible inscribed with my name…words all blurry through my tears. I pray. I know He hears me. I am still here.

I don’t know what happened Saturday. It was like a plastic bag came over me. I felt I was literally suffocating. I felt paralyzed with fear because I felt so ill. My legs weakened as though I was drugged. My head pounded inside rock against rock. The world became narrow, small as a quarter as if I was looking through a funnel. I stumbled to car. Over the gravel. It was like it was all in slow motion. I remembered grasping at the handle. Flip, flip and it wouldn’t open. I look at my husband who seemed yards away, my faced melted into a droop of help me. I felt shattered like broken glass was inside my stomach. I heard a click and tried the door handle…it open. I struggled to get into the SUV…in enormous amount of pain and weakness engulfed me. My ears heard fluttering, like the wings of a hummingbird and little faint words in-between…what is wrong my husband uttered. So much pressure mounded on my chest, breathes I couldn’t catch with a baseball mitt. Up and out of me, like lava, words like venom...of hate spewed out. People had to have heard me…I felt no boundaries. Where did my sunny beautiful Saturday go.

I was in a movie and I was the star…theatrical, a drama. Not a co-star, no a ticket holder but the star. My husband was the co-star. Eyes without a blink, eyebrows downward, with deep furrows.. What do you want me to do…

I could see me as though I was in the audience and all I could do was watch and not stop her, stop me.



IT.
Hate.
Vomit.
Hate.
Pain.
Hate.
Doctors.
Hate.
Babies
No babies.
No eggs.
No uterus.
No Donor eggs.
Cancer
April 4, my Mum died.
Living in the south.
Prejudices, us, me, him bi-racial couples.
Razor blades.
Wrist.
Alone.
Hate.

All the words, no matter how many I remember, how many I have forgotten from that day. One word, one word only says it all. I am afraid. I am afraid of all the things I tell everyone not to be afraid of. I fear tomorrow. I fear, fear. I don’t know how to make it go away.

I have not been the same since that day.

Numb with Xanax, Sunday, I hid my husbands Easter basket. I baked a ham . My Spring yellow outfit for Sunday service still hangs without wrinkles. Unable to attend.

He flew out this AM for another five days.

I’ve cried ever since he had left except when I sleep for the few hours that Xanax brings. 5mg no longer works. I still feel the fear, that I tell everyone not to.

I breathe as though I am hyperventilating. Quick, rapid and short. Breaths filled with fear. Trying to silent them, to bring them to a slow deep pace. In though the mouth...out.. exhale slowly the nose…maybe by days end it will all have worked out for me.

I flipped the yellow pages looking for help. Counseling. Reality for me, I no confidence in the medical field here.


Saysusie, Rob, Karen...
Thank you for your comfort, thank you for your love....I have much to say about your kindness, how big your hearts are. My gratefulness is so huge, my heart it feels it but the words I can not find but know I do, I do feel them....

Thank you for letting me show you my wound...your words will help heal my sore.

:cry:
Oluwa..looking for a flashlight to find my way.

sick n tired
03-24-2008, 03:35 PM
Oluwa,

I am holding you.....rocking you...I feel so helpless to ease your pain..

Can some of this or at least any of this have anything to do with April 4? I know that most if not all is IT but some might be the date.

I lost a child on that day and it makes this time of year harder. Usually takes a few weeks to realize why the sun has stopped shining. Sometimes it is subconscious.

One thing that I can say is put the razor down!!! Get it away from your wrists...even in your mind.

People can be so narrow minded bi racial couple...great for you!!! Your marriage seems really good so they are just jealose or stupid. I have no patience with racism. There is an older song called "colored people" I can't remember who wrote it...what its message is that all of are "'colored" different shades. That is called the human race.

I am sorry for your panic and fear...I truly wish that I could come over there and help you not be as alone.

I am wrapping you in my constant prayers....he deos see you...he does hear you...hard to hear him and see him when all h*ll is breaking loose...

Holding you as you relax and begin to breathe normally,

Karen

sick n tired
03-24-2008, 03:38 PM
The song was by DC Talk...here are the lyrics...

Pardon me, your epidermis is showing, sir
I couldn't help but note your shade of melanin
I tip my hat to the colorful arrangement
Cause I see the beauty in the tones of our skin


We've gotta come together
And thank the Maker of us all

(chorus)
We're colored people, and we live in a tainted place
We're colored people, and they call us the human race
We've got a history so full of mistakes
And we are colored people who depend on a Holy Grace


A piece of canvas is only the beginning for
It takes on character with every loving stroke
This thing of beauty is the passion of an Artist's heart
By God's design, we are a skin kaleidoscope

We've gotta come together,
Aren't we all human after all?

(repeat chorus)

Ignorance has wronged some races
And vengeance is the Lord's
If we aspire to share this space
Repentance is the cure


Well, just a day in the shoes of a color blind man
Should make it easy for you to see
That these diverse tones do more than cover our bones
As a part of our anatomy

(repeat chorus)

We're colored people, and they call us the human race
[Oh, colored people]
We're colored people, and we all gotta share this space
[Yeah we've got to come together somehow]
We're colored people, and we live in a tainted world
[Red and yellow, black and white]
We're colored people, every man, woman, boy, and girl
[Colored people, colored people, colored people, colored people, yeah]

sits_inthe_corner
03-24-2008, 04:08 PM
Oluwa

Hugssssss you tight till your socks blow off...

My fear is made of cold electrisity...sends icey shocks through my body when I lay waiting for sleep to claim my mind. I dread the idle moments that I used to enjoy. Those are the moments doubt and the fear have come to call their own. Apathy has aided those two ... in taking over my quiet moments.

Overwhelmed by information, advice, choices, lack of choices.

Just breath...just breath. Sometimes that's all you can do...sometimes that's all you need to do. Just breath. Slow steady breath in. Hold for one second....two seconds. Release....just breath.

Oluwa...you belong to all of us and we to you...you dont have to be brave and clear thinking all the time. Know that we love you :) and you are cherrished.

I'm going to stop now before I bust out in a very twisted randition of Doris Day's Que Sera Sera. Yes I'm dating myself dammit...and I'm having a wonderful time with me :lol: Flowers candy whine (oops) I ment wine. I just wish I'ld hold the door open for myself...I can be so rude sometimes...lucky I'm so goodlooking. I can hardly resist myself.

I cant let myself stay in dark places too long. I'm afraid I'll never come out. So I make fun of it...but it's not funny. Hugsss darlin Owula you are are loved. :)

Pretti in Pink
03-24-2008, 05:24 PM
Oh Oluwa,

I feel your bad through your words of expression ( you know you're so good at descriping things that the image appears on the screen). Everyone has expressed great advice and encouragement and I just want to piggy back on that.

You are soooooooo much BIGGER than it. Continue to take your Xanax, continue to reach out expressing how you feel, you're doing the right things and keep reminding yourself this too shall pass even if I can see pass it right now. Remember the last time you were here or close to this place and how you pulled through, you will do it again.

Hang on to the prayers, hugs, encouragement and support that we have to give you. We're here and so are you......

rob
03-24-2008, 05:41 PM
Oluwa, my family is Caucasian-White. My 23 year old niece happens to date a young man who happens to be African American-Black. To this day, I cannot understand why anyone should disagree with, or dislike the fact that two people who love each other are of different ethnic backgrounds. Her boyfriend, maybe fiancee, is a loved member of our family. And I know that his family is accepting of, and love her too. People who live within the narrow boundaries of prejudice, and racism, are cheating themselves. They are to be pitied. If I count all the people who have made a difference in my life, and subtract all those who are not white, then I would be missing out on dozens, and dozens of people. How sad my life would have been had I excluded them simply because they are a different shade of human than me. And if anybody gives you a hard time, F them! With a capital F! There's no room for that sort of garbage in this world. Hang in there Oluwa!

Oluwa
03-24-2008, 06:19 PM
My mind buzzes like bees...know I do feel better. Sorting, piling..the keep pile, the give away pile. By tomorrow my give away pile should be huge.

I will write to each of you properly tomorrow....

Thank you, thank you, from the bottom to the top of my heart. The pain in my heart is being healed by the love, care of your words...thank you very very much.


I am one heart and I am beating...
Night,
Oluwa

cheryl_v
03-24-2008, 07:16 PM
God Bless you in all your pain. You are such a good person and a friend to so many of us. Thank you for your concern and kind words to us all. It will get better, your hearts to good and your so strong. You deal with more pain than me, and are so much stronger and it inspires me to hang in there in my slump mood. I'll check tomorrow to see how you are. I send many gentle hugs and care your way.

sick n tired
03-24-2008, 07:46 PM
AMEN ROB.................PREACH IT BROTHER

Saysusie
03-24-2008, 09:33 PM
Oluwa;
I am sending you my sweet lullaby so that you can have a restful night, no stress tonight, no pain tonight....no fear tonight....

"Try not to get worried
Try not to turn on to
Problems that upset you
oh Don't you know
Everything's alright
Yes everything's fine
And we want you to sleep well tonight
Let the world turn without you tonight
Close your eyes and relax
think of nothing tonight

Everything's all right
Yes everything's all right yes
Sleep and I shall soothe you
Calm you and anoint you
Myrrh for your hot forehead
oh Then you'll feel
Everything's all right
Yes everything's fine
And it's cool and the ointment's sweet
For the fire in your head and feet
Close your eyes
Close your eyes
And relax
Think of nothing tonight

Try not to get worried
Try not to turn on to
Problems that upset you
oh Don't you know
And we want you to sleep well tonight
Let the world turn without you tonight
If they try
they'll get by
So forget all about them tonight

Everything's all right
Yes everything's all right yes

Close your eyes
Close your eyes
And relax
Think of nothing tonight

Close your eyes
Close your eyes
And relax
Think of nothing
Everything's all right
Yes everything's all right yes, everything's all right!

Good Night Angel......See You tomorrow

Peace and Blessings
Saysusie

Oluwa
03-25-2008, 09:14 AM
It's tomorrow, her I am today...

Saysusie…Jesus Christ Superstar. As I read it I heard your voice singing. Your voice from your CD, When I first listened to your CD I felt I was being enveloped with love. Last night I listen to you, to help me to fall asleep. It brought a calm to my racing mind. Your soft voice felt so safe, the guitar, the beat slowed down my inside beat.
I wanted to tell you earlier that I enjoyed you CD very much but you were on your holiday. I heard, I listened to you, sing of your pain, your beliefs, your hope, your longing and to find yourself through it all, to be able to say… I’m Alright. You are. Your heart is in all the right places Saysusie. Thanking for creating the CD.

Karen and Rob,

The DC Talk song sounds like my beliefs, a great song...for me, I say it like this... I always see color, I am not color blind. To me to say I don’t see color I would feel as though I would deny someone of who they are, their beauty, each unique. Our skin, our nose, our lips, our eyes, our jaw line, our fingers, our eyelashes…it is us, you, me, him and her. We are one of God’s most beautiful creations. To deny any part of anyone, to show we are not prejudice we shouldn't use one being...it can be stated simply as, I am not prejudice. Sometimes I wish some people would admire each of our difference as we admire God’s other creations…the spots of a Leopard, the stripes of a Zebra, the wrinkly skin of an elephant, and the cracked dried mud skin of an alligator. The silk pedals of an Calla Lily, the wrinkled and ruffle edges of Hibiscus, the stiff hard blades of a Bromeliad.


Karen…what a wonderful song by DC Talk. Thank you for you the head hugs. Forty-six years is the age of this carcass, but 7 is the age of my heart and many times it hurts like a seven year old…and I get lost and I don’t understand.

SITC,

When the lights go out, darkness fill my thoughts and when more than three days have past, I panic. Usually I can create a positive to propel myself out, but it wasn’t happening. Instead I created an upheaval. Usually my thoughts get dimmer and dimmer till I get engulfed, I had seen it dimming but when it went off, it went dead this time.

Probably right, too many decisions, too many choices. Too much pain in too many places. The pear, the back, the IT.

I worried, I hated…maybe my pear will be gone. No hope for children at all. I always wanted many. I planned terrible. No hope was The End of that book, a book I didn‘t want to close. Waited too late to marry, failed Invitro. With IT and a healthy pear the outcome seems bleak , with no pear no donor eggs can be stored is like death to me …with IT the inability to adopt is there any hope left. I pray it isn't The End for a baby makes three.

When my husband heard, possible periods on the horizon I mistook his smile for glee, a chance to have a baby, his, mine, ours of us.. it created an enormous amount of stress. No babies, no babies I wanted to shout and I did that Saturday. His smile of relief when I asked what it meant, his smile meant, hoping it will give me relief with my symptoms. I should have asked him about his smile last week...ugh.


Cheryl you are indeed a very strong woman. I know, I read you, I feel you…We only need to be as strong as the strength of the pain that weakens us, so do not discount your strength. You have plenty that is stored, and you use plenty to work each day. Tending to children, yours and theirs…work and play…family, home. Believe me, you have more than you even realize.

You words inspire me to find better in this day…I am finding it, know your caring words is helping me to find the flashlight to light my path.
Thank you for being my friend too…

Pretty Monica...Encouraging, pushing me along. I need it. I felt like a water buffalo stuck in the mud being eaten alive by a laughing hyena. I don’t know why I get lost in my pain and I can’t hear or read anyone’s words or my own words. I think for a time I forget how to feel when all in my mind becomes too great. It is like a hammer beating the same spot on my shin, over and over, after awhile it becomes numb and I see nothing, I hear nothing but that numbing, gnawing pain. Numb not without pain, but numb to my beliefs, my faith to find a way to make it stop. I get so fixated on it all, the decisions, the past, the future, the fear, the anguish I stumble into the hole…

I cried and you all heard me….thank you
oxoxoxoxoxo

With all the words I listed about my hates, my pain and I never gave the words, the adjectives, the verbs that had came before or after each word. Hate is such an ugly word yet I said it over and over, every other word….finally and thankfully Sjogren’s took my voice away. And my anger became a soft growl…and I sobbed that last few miles home…exhausted, dazed from being crazed. An action meant for home and not in a SUV on the highway.


I am still my Mum’s little girl and I get upset because she is gone, she was my Mum I wasn’t done learning. My pear is sick and I need her guidance. Surgery is schedule for the 8th. Do I go? Do I trust? Who can I? Are my fears valid?

I am my husbands wife and I don’t understand the travel. Times I expect him to make a choice when really there isn’t a choice that has to be made. Until a door opens, another opportunity, I know he and I discussed this…this is what it is…as there is no comparison to me or a career. It is just what is. I am loved no less but insane me, I make it seem like there should be a choice…patience I have lost since I have become a patient of IT. Being alone hurts.

Prejudices, stares, rudeness and different introductions, reactions come from anyone, not a specific race or gender. They aren’t very discreet here in the south. Their whole demeanor and body language changes abruptly. Depends on who meets who first, my husband first or me…and the rest of the emotions or lack of from them will and do follow. Seems so inane to us that color can conjure up such dislike, all misguided connotation and beliefs that shouldn’t have a place in our society today. It should be based on personal experience with each person and not the text in a history book. Being in a marriage that is categorized by our skin seems so silly but it hurts.

Pain, doctors...I get so frustrated by incompetence. I get so frustrated how little my dollar gets for health care today, here. The care from the person I hired to tend to my health, and I feel as though I was in a cafeteria lunch line. Next, scoop, plop, 15 dollars please and don’t forget to pick up after yourself for the next person when you leave.


Pain is in everything I do. I don’t know what is my normal or what is abnormal anymore. I hurt everywhere. My skin burns. What is unusual, what isn’t IT, what is it that I have to live with? I don’t know, but surely it can’t be all this because it is just too unbearable. Am I being a too sensitive or am I trying to be too strong…I am confused. It is like telling a hungry girl she can not have anything on the plate in front of her. Her hunger is real but is it numb from control, from strength…so is she still hungry?

With that frustration, disappointment in doctors I hadn’t seen a Rheumatologist since September. I have an appointment with a new one on April 2.…

Time to regroup…I am. I’m doing…a work in progress. The fine tuning will always be happening, just like buying a new TV. HD, Digital, pixels, resolutions, the picture can always get clearer, sharper.

Thank you for helping me fine tune me…


Head hugs for everyone from me.
Love,
Oluwa

Saysusie
03-25-2008, 09:53 AM
Oluwa;
Such turmoil with no clear, concise answers. It's a wonder you didn't have this "break" sooner (or, I think that "epiphany" is a better description). At this point, I think that the real breakthrough is the fact that you are asking yourself all of the right questions as you reflect. It is not as important that you have all of the answers, they will reveal themselves as you move through the field of questions. Anyone who can do such a thorough self-analysis is not far from the true revelation and, in now way, are you insane, inane or selfish!
If you were sitting on the couch of a therapist, he would see your pain and understand your anger. But, what he would also see is the giant step you have taken towards your own understanding. You have - in your self-reflections, in your expressions of frustration, in your examination of your feelings - opened up your own gateway. Don't think that you must stop or change or conform. You are doing what Oluwa needs to do in order to find what Oluwa needs to find.
We are here for you, Oluwa, no matter how your journey appears, we are here for you- we are here with you!

Peace and Blessings
Saysusie
BTW - Thank you for your sweet words about my CD. Yes, it was a very painful journey with a soul cleansing outcome. My producer insisted that we put the CD on the internet for sale. I was not interested in making money so much as I was interested in talking to my daughter through this CD. It is for this reason that the proceeds from the sale of the CD go to the Lupus Foundation of America. So, I thank you on several levels for purchasing the CD and for understanding the CD. You are, indeed, an angel!

cheryl_v
03-25-2008, 10:33 AM
I'm glad everyone has made you feel better. I know how you feel about the constant pain, does it ever end? I can't tell either whats normal everyday pain and whats not normal. I ask too do I have good pain tolerance or am I weak? Will it ever stop or ever will I be able to do something without any pain somewhere on my body? I too have a new Rhuemy app. I haven't been to one in over 2yrs. Insurance likes to change who they decide to cover and who not, frustrating. I wasn't going to bother anymore, but doc insisted. I too seek the same answers for this as you, although I'm learning there may be no answer. Wish I had one for you. Your kind words inspire me, made me smile even in my depressed mood. I hadn't want to do anything or talk to anyone for awhile, just didn't care. Now look at me, you put a smile on my face and I'm chatting a way little here and there. You and so many others are such a help to so many of us who are down in the dumps.
I live in the south too, so I understand how some of these people can be. Unfortunately I'm related to such jerks that I choose to ignore. People care so much about human skin color. Funny how no one cares about the different colors of a cat, dog, butterflies, horses, etc........(you get my point :) ). In fact they love to have different colored animals, insects and such and don't care if there pets are different colored than each other. Go figure, oh well. Your words and strength have made me feel so much better today. Sending you some of my care and strength your way......................... didn't hit you to hard did it :lol: . Have a good day.

sick n tired
03-25-2008, 10:38 AM
Oluwa,

I think that I am 7 at heart, too. I was just giving back the hugs and rocking that you gave me when I found out my little girl was seriously ill. They were extremely comforting and the biggest thanks that I could give you would be to give them back when you are hurting.

I never meant to imply that you were racist in any way, I was just reacting to the thoughtless people around you who make you feel less than because you are in an mixed race marriage.

Saysusie....that is one of my favorite lulabies. I used to sing it to my babies.

Oluwa
03-25-2008, 11:07 AM
Karen,

Oh, no, I never felt you were saying I was racist, I was adding to your conversation. Sometimes when I read and then I write, I write as if we were in the same room conversing, like about DC Talk and I concurring....hugs.

I just write so short and choppy my words can become misunderstood. I try to expand on my sentences..and not leave out the pronoun, conjunctions, adverbs and etc. I am my worst proofreader, and editor...

Nadia still getting better..? Don't let yourself get sicker...

Back at ya..head hugger...
Oluwa

Oluwa
03-25-2008, 11:26 AM
Cheryl...

Catch, caught it...thank you for sharing your strength.

I know it is easy to hid, get swallowed...too much energy at times to search for the light switch when no one has turned it on. Sometime if we wait and wait, the light will never illuminate. Not because we are forgotten. Sometimes we have to do a head count two, three times to see who is lost. And sometimes when we are lost, we have to shout..over here, here I am...

At some point we have to let someone know we are sitting in the dark...and someone will turn the light on. Like what I did...hey I am in here. I can't find the switch...and you and everyone came and the light got brighter.

So don't sit in the dark...your smile can come sooner and when it does and we feel it we wonder why did we wait so long to say, hey I need help over here.

We have what you have, you got what I have...so you don't have to be alone or stay in the dumps. I know the dumps, it isn't pleasant at all.

Even when we come here to tell our woes, seeking out comfort..and those who comfort us, indirectly we help to nurture there own woes too. A two way comfort...I reflect and learn to deflect the mental pain from IT when we all converse. Give and take.

I am having a good day..thank you for chatting a bit with me..I want more. You have lots of important things to say...
Head hug,
Oluwa

Oluwa
03-25-2008, 11:48 AM
Saysusie,

The answers are there. I know them. I feel them. I believe them. But I forget them when all is so ladened, and burdened with pain. It is like I have the flashlight, I have the instructions, the batteries are not dead, the bulb is not burnt out..I just forgot how to do the basics. Turn it on...

I know your heart is beautiful. Your words about your Laurie I know she has the same beauty. I only imagined your outer beauty. Envisioning as I read...A little thing I do in my head. Now I know you are absolutely gorgeous. Now I have the true face to go with when I read you...

You are our angel...to create a place in space for us, who feel so misunderstood. Thank you.
Hugs,
Oluwa

cheryl_v
03-25-2008, 12:10 PM
Yes Saysusie, I agree with Oluwa and I'm sure many do. Thank you from the bottom of my heart for creating a place such as this for us to go when there was nowhere or anyone else to turn too. You are an angle :angel: and comforting friend.
Oluwa, thanks again. I'm trying to stay focused and not think of the things that are bothering me (pain, sad, aggrivated, worry, buisness slow,........), I think I better stop there as I'm sure you understand too well. I'm banging on this blasted flash light trying to get it to work, I'm sure I'll find the switch. The light can't stay off forever. Glad your feeling better and having a good day.

Oluwa
03-25-2008, 12:25 PM
Here Cheryl , let me turn it on..click. See if I can get it to shine bright..

The economy leaves no one unscathed to some degree, even the richest, they just buy less of the biggest. Business will pick up when the economy gets a jump start. Soon. The IRS is issuing most everyone a refund of their monies in May. Maybe that will give you a boost till something else gives.

If you find many not paying you for your service I would create a new policy, money upfront, by the day or by the week. Or say a week or a day in the rears. So, today pays for tomorrow.

We all need our bread and butter and so do you. If it wasn't for you then those who leave you to care for their children won't be out making their bread...so make a change. What is the worse that can happen, no children, no money than children and no money. A whole lot of stress will be gone...stress lessen can lessen the pain, the worries...try it...go ahead.

And hey, you don't have to stop chatting about IT...let it all out. Helping another helps us too. Tell us what heaviness you are carrying. Share the load. Maybe I , we will have an idea or two to help...

Head hug,
Oluwa

Saysusie
03-25-2008, 04:03 PM
Thank You Ladies. As you know, my sweet daughter was the inspiration for this site and, as long as I am alive, this will always be a place of comfort, safety, understanding and information sharing!

Peace and Blessings
Saysusie

cheryl_v
03-26-2008, 07:40 AM
Thanks Oluwa, I do believe I see a shimmer of light in the distance that seems to be coming closer and brighter. My prob with the parents is a few do jip and run, then the others moved and one (bless her) got into a accident and had to have surgery on her arm and lost her job do to the injury. I just told her to pay when she healed and got her job back. All this happened within a month, when it rains it pours.

Speaking of IT, don't know if thats what I have. I've had 3 dx that were tooken back, then 1 dx given back (so annoying). First told RA, then a few months later told nope not it. Then early lupus and then FMS a few months later. A couple months later told nope not it either one of those. Told deffinetly a connective tissue disease though. Then a month ago told yes I have FMS (by his nurse practitioner and he agreed), more symptoms prove it, sorry for the aggrivation. Doc said to go back to a Rhuemy and get their opinion. He said he's sure he knows what I have, just wait to see what new doc says. It gets so annoying that you just want to quit going, but as Saysusie says we have to take charge of our own health. That, I swear, is the one of the few reasons I keep going back. If I didn't have my kids and huddy to take care of, I wouldn't even seek answers. I would just assume I was getting old before my time, but thats foolishness talking so I'll shut up.

Is your day going good? I sure hope so. Not to bad hear at the moment. Not looking forward to the weekend though, hubby taking off fri. and mon., so a four day weekend of aggrivation. He always makes promises of helping out and playing with kids, but sits in his recliner with his headphones watching tv all weekend wanting someone to get drinks and food for him. Such an overgrown child if you tell him to get it himself. Goes on a whiney fit of how he works so hard in a stressful job all week that he's just trying to finally relax some. No one apricates him and how hard he works, blah, blah, blah. Just venting for a moment to relieve the stress of the upcoming weekend.

Oluwa
03-27-2008, 06:31 PM
You're welcome Cheryl...

Doctors, appointment, needles, charts, the clock, waiting does get old,eh. They are treating your symptoms, eh? I know the frustration, I've quit going many times. This last time it has been 6 months...for the Rheuma..

I seem to be fairing worse these days. My cheeks, the face ones look like bumble bee bites. I do have an appointment next week with the Rheuma....for that I am grateful. I can handle IT but it is the back that is pulling me down..I don't see the Neuro till the 15th. And sheesh I have my pear surgery on the 8th...and all just weeks before my brother comes...he will be here on the 23rd. I pray I'll be good to go when he arrives.

Maybe it is the climate as it seems many of us are taking a nose dive...or for me, it is probably my back that is aggravating IT...

Again.. I stopped all pain pills and have been tortured riding it out, flat on my back from the herniated disks inflammation. I'm having a bit of a reaction to them again....edema and the itch.

Popping a Xanax everyday to keep my thoughts calm, pain creates much anxiety. From the .5mg to a 1mg now.

Maybe you can tell your husband what I told mine one day when I felt we were growing apart.. You married me, not hired me... I think it would apply here...eh?

Tomorrow is Friday....maybe give him a Honey Dew List, to keep him busy ....and take deep breaths and tell yourself it is just for four more days. Since he likes the tube...maybe rent videos, fright night, comedy night and have a popcorn..pizza...or Root Beer Floats..always a treat.

My husband lands tonight...I just started a pot roast and vegetables..one kettle deal. Toss it all in and put a lid on it and it will keep till he arrives at 11:30PM...

Enjoy the weekend and don't wish it would hurry...
Hugs,
Oluwa

Oluwa
03-27-2008, 07:04 PM
You're welcome Saysusie...How goes it today?

Hugs,
Oluwa

rob
03-28-2008, 05:11 AM
Pot roast and veggies, and a rootbeer float. Oluwa, you are making me hungry!

Shyce
03-28-2008, 12:57 PM
hi Oluwa,

i just read your original post of last year in this thread. and oh my goodniss, i relate to everything you are experiencing. its so hard to accept my memory loss, fatigue, depression, pains, cramps etc. its such a struggle. every time i see the doc, something else is wrong, and it makes me not want to visit ever again.

i hurt so much.

sits_inthe_corner
03-28-2008, 01:38 PM
Woohoo...does the happy dance for Oluwa

Hope you have a wonderful weekend Oluwa and ummm if there's any left overs...a nice roast beast sammich would be good :)

cheryl_v
03-28-2008, 06:03 PM
Hello, thanks for your encouraging words again. Helpful as always. Had to go to doc this morning last minute. My bp was up to 149/110. Got bp meds, hope they help.

Saysusie
03-28-2008, 08:34 PM
Oluwa;
Actually, haven't been doing so great! My doctor finally referred me to a Fibromyalgia clinic 'cuz none of the medications seemed to be helping me. I'm hoping the new suggestions and prescriptions will do something ease this chronic pain (uggh..24 hrs/day!) and the horrible burning sensations in my muscles. On a good note, I've been able to sleep well for the past 4 nights (hallelujah for small blessings!) Thank You So Much For Asking About Me :lol:

Peace and Blessings
Saysusie

Faith
03-29-2008, 12:06 AM
Hi Oluwa,

I was not online this week, and I cried when I read your posts. I am so sorry you traveled through all that. Hugs . . . . . I am glad to hear you are doing better. You are such a nice person and you are always cracking me up. It broke my heart . . . . . You are so kind, helpful and supportive to all of us. You are also very strong!!!!

Hugs again, and praying you have an awesome weekend!! I'm jealous; pass that pot roast on over here. My Mom made the best pot roasts ever. Mmmm, if it wasn't sooo far to North Carolina, I would be there in a heartbeat.

Take care,

Faith :lol:

sits_inthe_corner
03-29-2008, 02:02 AM
Gentle hugsss saysusie

Sorry you've been in so much pain. When do you go to the clinic? I hope it's not too long a waite.

cheryl_v
03-29-2008, 06:51 PM
Sorry to hear of your pain Saysusie. Glad you have a FMS clinic near by, hope they have something that will bring you relief. I hate to hear of people in pain, specially when they are ones like you who try so hard to help others. I know how you feel of constant pain 24/7 and meds not relieving the pain. I wish you the best of luck and relief. Keep us informed of what I hope to be progress.

On this end I just need to vent. Like I said last night, I have to be on bp meds now and I'm only 34! Its so depressing. I eat right, no fried foods, low sodium, low on junk food, drink lots of water and try to stay active and not let my weight get to high. I have welbutrim thats been uped to 300mg that still seems to not work, have had 2 different steriod meds that didn't work (suppose to be fast acting), and now bp meds. I've had a hard time coming to terms with it, specially since the cause can not be found. I hate meds and try to avoid them. Now I'm stuck having to everyday. I tried to go out today with the family, hate to say it sucked (I know that's mean, sorry). Hubby spent to much, had to put it on credit so unable to go out to eat like promised for a break. My 2 boys kept fighting, touching everything, blocking the aisle and shoving each other no matter how much I got on to them. My little girl screamed and threw everything I tried to give her out of the buggy. Got home and after I had to put everything away, got stuck cooking and cleaning up the mess alone :( . To top it off, hubby wants to see his mom tomorrow. I'm not going, I can't take that too. Maybe this weekend will get better, I sure hope so. How's everyone else doing, lonely and bored here. Please tell me its going better for you guys and gals.

Faith
03-29-2008, 11:49 PM
Hey Saysusie,

I am sorry to hear you are in pain from the Fibro. You mentioned a clinic; could you share the name and info? Do you need a dr's referral? Where is it located? I also have fibro; it doesn't give up or play nice!!

Take care,

Faith 8)

Oluwa
03-31-2008, 10:37 AM
I am in the midst of a war.

The Vicious Circular War of 2008

IT battling body.
My heart battling my thoughts.
My thoughts battling my body.
My body battling IT.

I am mess. I think the extreme thoriac pain is igniting this flair without glamor.

I have a new Rheumatologist appointment on the April 2..hopefully she will provide some relief with IT and maybe prescribe something almighty till I get to the Neurosurgeon for my back...the 15th seems so far away.

Just a little blurt...to keep in contact. I will write properly and reply to everyone when I can.

Trying to hang on to this Loop-O-Plane ride...
Head hugs everyone,
Oluwa

sick n tired
03-31-2008, 10:45 AM
Goodness Oluwa,

So sorry to hear that the pain is not abating even a little. It can be so disheartening when that happens. For me it is like hitting a wall, because you can't move the wall it only stays.

I do have you in my prayers. The back pain can't be helping. Perhaps that threw you into this flare.

When my dad used to fly loops or what he called wingovers, I would get so sick to my stomach. So take an airsick bag while you are hanging to this Loop-O-Plane ride.

sits_inthe_corner
03-31-2008, 04:56 PM
Oluwa

SoooooOOo sorry to hear your pain sweetie. I hope you find some gentle peaceful moments. Thanks for thinking to drop a line...and I hope your appointment with the new rhuemy goes well :)

Saysusie
04-01-2008, 08:31 AM
Oluwa;
I am so sorry that you are in such pain and are not doing well. I've missed seeing you for several days. Please know that you are in our hearts and in our prayers and I hope that you begin to feel better soon. I wish there was something that I could do to ease your pain :? . I will just send you cyber hugs, soft kisses of understanding and sweet songs to ease your mind!
Do take care of yourself!

Peace and Blessings
Saysusie

cheryl_v
04-02-2008, 09:56 AM
Hello Oluwa, checking to see if your feeling better today and see if your new Rhuemy is good. I sure hope you get answers and relief at your app. today. Thinking of you and hoping your doing well.
I turned my flash light on all by myself, not to shabby. Wasn't as hard as I thought :lol: . Hope yours is shining bright for you, I'll help if you need it. Once again, hope your pain is light and your mood is good. Ta-Ta, chat back later. :D

Oluwa
04-02-2008, 12:40 PM
Thank you, thank you everyone for checking in on me...I am having a bit of a hard time lately, today. I will write of my appointment tomorrow or the next day.

Taking my new prescriptions for a spin...good night...even if it is only late afternoon. Hope it works. I am about 6 of 7 nights short of sleep.
:shock:
Sorry I haven't been of good cheer these past few weeks...Thinking of you too.
Hugs,
Oluwa

sits_inthe_corner
04-02-2008, 01:36 PM
hugsss Oluwa...

Sweeties for dreams and a peaceful sleep.

Oluwa
04-03-2008, 07:46 AM
Good thing there is a never ending supply of blood while alive. Filled eight vials at my and a cup of urine siphoned into three vials at my Rheumatologist vist yesterday.

Well, this is how the story goes...It took all I had, which was about enough energy to press the SUV gas pedal and the brake...My hands griped the steering wheel with pain. Believing, hoping...saying in my head to the beat of a marching band..Help is on the way, help is on the way for the 45 minute drive. Husband is traveling..again, will land tomorrow.

No help, at least not yet is on the way....I am somewhat on the diagnose merry-go-around, again. Since my test two ANA results weren't faxed to my new selected Rheumatologist, they would not prescribe any drugs to alleviate my symptoms. They instructed that would have to come from my PP until "they" diagnose me. And if he, the PP had any question to call them...They were thorough in their questioning, in their exam. Which is a good thing...but ugh I feel like I am starting from scratch. She suggested I may have Fibromyalgia too since I have the pressure point pain and the other criteria. Sigh, not the f-word too..

After driving the 3/4 of an hour back, I squealed into my PP's office on two right tires, asked if he was available. Someone above is looking after me, he was and I only had to wait 5 minutes. Note I also got door parking. So, I told him..Okay, I mean I cried to him literally...of my failed expectations at the Rheumas, the pain, my desperation, how I waited 3 months for this appopintment, the whole balling nine yards. He prescribed, Loratab, Flexril, Moric, Elavil. I asked why the ANA results weren't faxed, he said they were...so who knows what. Me, I know nothing except I am a victim of IT...

I am grateful for that handful of pills....I feel Help is on its way. I slept good.

I decided to cancel the Hysteroscopy and D&C, after speaking with the GYN this morning. Because I am in a flair without red sole high heels. I am not really impress with this GYN, MD not the PA and more than likely seek out another. So, it is probably a good thing I am in a flair. That office has given me an uneasy feeling since the first time I step through the door way. The heart knows, the gut feeling..my mind is trying to cause doubt in my skeptism.

So, that's my story...

Maybe later this day, tomorrow or tonight I will read and catch-up on how everyone is doing. I feel so selfish just blurting about, me, me, me..

I do pray for all each night, during the day...Please keep well.
Hugs,
Oluwa

PS..SITC, is that your hand puppet...so cute, he makes me smile. Is that Redi-whip? You're so crazy...hugssssssssss..back at you....head huggie...Over n out.

sits_inthe_corner
04-03-2008, 08:05 AM
Hugs Oluwa

That is a character named Hammie, from the movie Over the Hedge. If you are in the need of a really good shoot pop through your nose funny movie...this is it. I love Hammie and aspire to be just like him. So get it, curl up and watch it. :)

Saysusie
04-03-2008, 08:39 AM
First, SITC...Hammie was my FAVORITE character!! He reminds me of us when we are in a brain fog..so easily distracted "Oh look..a cookie". Oluwa, the cream around his mouth was supposed to make him look rabbid :lol:
He looks like I feel most days.

Oluwa;
Never apologize for talking about yourself. We all asked how you were doing and you merely responded. I have Fibromyalgia and I must say, recently, it has been giving me more problems than my lupus. I have 14 of the 17 pressure points of pain (until they were tested, I had no idea they were there. I nearly jumped off of the table screaming in pain when my rheumy was testing my pressure points!) My fibro is so bad that I've FINALLY been referred to a Fibro clinic once/week; physical therapy once/week; and FINALLY some medication to help with the pain and to help me sleep! But, the pain and the burning is, and has been, relentless
:mad:
It is unfortunate that so many of us, with Lupus, also suffer with Fibromyalgia. Your Lortab is a narcotic pain reliever (aceteminophen & hydrocodone); Flexeril (cyclobenzaprine) is a muscle relaxant. It works by blocking nerve impulses (or pain sensations) that are sent to your brain; Elavil (amitriptyline) is a trycyclic antideppressant. It is helpful for improving sleep. Elavil has been found to lose effectiveness over time. Other tricyclics include desipramine (Norpramin), doxepin (Sinequan), imipramine (Tofranil), amoxapine (Asendin), and nortriptyline (Pamelor, Aventyl) I am using nortryptyline. I could find nothing about "Moric", are you sure this is the correct spelling?
Most of your treatments seem to be for Fibromyalgia. Please let us know if you are able to escape some of the pain and if you are able to sleep. The Nortryptyline has worked wonders for helping me sleep!

Wishing You The Best
Peace and Blessings
Saysusie

sick n tired
04-03-2008, 09:41 AM
Hey Oluwa,

Sorry you have fibro. Like Saysusie that is giving me more pain right now than lupus, I think. I have all 17 pressure points in pain. Saysusie, doesn't it hurt worse for days after they press on those points? I know it takes days to get over the doc appt.

The Flexerol is great. It doesn't take everything away, but it does make it better. Nothing seems to make it all better, though, for me. I am unable to take Elavil because I take Tegretol and it counteracts that. I have been on lortab, though.

I hate starting over again. That is how I feel with Nadia. Do you trust your new Rheumy? I am glad that you postponed the gyn stuff, too. Surgeons seem knife happy. It is better to wait until you are on the other side of this flare to see if that is causing some of the gynecological problems.

And lastly, no you are not selfish. That is final. You are hurting and I for one am glad to know you are getting help.

Praying for less pain, for you,

Karen

cheryl_v
04-03-2008, 10:09 AM
Thanks Oluwa for the update. Like Saysusie said, we asked you how its going and your just telling it like it is. You are always telling us to let it out, tell how we feel. Same goes for you too. Sorry for your disappointment with how the doc appointment went. Its very upsetting. Rest, and come back and let it all out.

You must see Over the Hedge. SITC and Saysusie are right, you'll love it. Hammie reminds me of my teenage son, he really acts and talks like that. My hubby calls him Hammie when he not in ear shot. We almost couldn't stop laughing during the movie. I believe you'll feel a little better after watching it. Hope you feel better soon :D .

sits_inthe_corner
04-03-2008, 10:11 AM
Oluwa...

I agree with saysusie....never ever appologize for speaking of you you you. You are very important and deserving. And we love all of ya encluding your achie owie bits.

Saysusie I'm so sorry to hear about the Fibro. I don't know alot about it, but I've chatted with some folks who suffer from it. Seems they go throught the same medical validation issues that lupians go through. Another road to travel down.

I hope they get you sorted out soon. Gentle hugsss.

Oluwa
04-03-2008, 02:36 PM
You guys are great, absolutely...

Gosh, with so many new people, so many to meet and much happenings with each one there is no way I could ketchup…so I will just jump in…

Hammie, I will have to investigate and get the flick...he so cute.

I know many of you have been hurting more than usual lately..Mentally and physically from my reads. I wish all good things for you. Many things I ask of God and asking for all your wellness is always asked from me.

I don't know how many pressure points I have. We didn't discuss FMS at length. Just that I may have it. By the diagram, I would suspect I have, oh about 10. Maybe the hips, butt too but I have such current severe back pain and also recovered from cervical spine surgery 18 months ago, GERD so who knows what is what, and what is causing what. I am a scrambled egg mess. So, they are going to sort through it. Have at it...

They scheduled a sleep study. Well, the intitial consultation on May 1. Cause I dread sleeping anywhere but home, do you think they will let me bring my binkie and pillows? Sleep study, SLE , Fibro..I miss the connection. I know I read about sleep disturbance caused by Fibro..brain waves and etc..anyone know of this? I am sure I have it bookmarked somewhere.

The GYN, okayed the delay. She said endometriosis cancer is a slower grower if I even have it all. No harm waiting another month. She is investigating another, different progesterone to take to see if it will shrink the lining. Will advise me next Monday or Tuesday. My head buzzes about that. Too much to think on. What would you think if your GYN had 18 inch chopsticks sticking out of her bun, with big dangling earrings hovering over your vajayjay? Seems so, so unsanitary to me...ewww. Or am I being too critical or is my germ-free freak showing..

SITC, you've been having a bit of hard time too. How are you today? I haven't picked out any outdoor furniture yet. Soon, I must as my brother will be here in three weeks..


Oh, Saysusie...it is a spelling error..Mobic. Thank you for the breakdown of each pill. I feel better after a half of day and night sleep. I really hadn't slept in two weeks. I thought I was coming out it last week, but it slap me back down. How are you doing...your FMS symptoms subsiding yet? Hey, what is a good read for FMS?

Karen...are you still percolating on the back burner? I hope Nadia improves and they are able to diagnose. The wondering is awful...I am sorry she and the entire family has to go through this...8 children wow. My Mum had eight of us too...four boys, four girls...I am the seventh.


Cheryl... Bravo for finding your way. Each time we find our way, the next time get easier and easier, till hopefully there won't be a next time. We can stop it in it's tracks.my light is flickering, and staying on longer with each flick. Have you watched Supernanny...have you tried any of her techniques? Consistence is key. How's the BP? Yesterday mine was 154/89 at the Rheuma...I stumbled back on that one. At my PP, and hour later itwas still high, coming down, 144 over I forgot.. my pulse was 112. It is rare I have a high BP, I am a low girl. Mine gets high from pain...least it seems to correlate with it. Today it feels fine. I'm gellin'..

Faith, you have FMS too.. and Karen...If this is what I have too, it is awful..how do you guys and Saysusie do it with SLE too...maddening, simply utterly maddening. Do all points act up at once...or it comes in waves, intermittently....

Love you guys...I can't wait till tomorrow, with pills in hand, a rainy night to sleep to it can only get better. Just listening to the rain against the windows and on our high ceiling, it is sedating for me. I think I will call it an early night, since I had an early day with the over accessorized GYN today.

Thank you, thank you...head huggies...
Love,
Oluwa

cheryl_v
04-04-2008, 08:57 AM
Good day to you Oluwa. My new meds are lowering my bp and pulse. Today its 118/69 with pulse 47, WOW!! I normally ran 140's/90's and pulse between 85-100. Doc said pain can run it up high, much less on top of stress. With joints and FMS flaring at same time today, I still can't believe my bp and pulse. I sure hope you get some sleep, it can add to the pain of FMS. I go to fmnetnews.com for info and webmd.com too, they have some good reading. They have helpful things you can do at home to help relieve symptoms too.

I hope you Saysusie are finding some relief. Have you gone to that clinic yet? If you have, does it seem like it will be helpful? I hope you are doing better and that the pain is backing down some.

So many of us have so much pain, I too wish I could help us all. Good day to all and may are pain be less. :D

sick n tired
04-04-2008, 10:41 AM
Hey Oluwa,

So you are the 7th hmmm...Are you the baby girl? My 7th is the baby girl. Of the 8 living children...5 are girls and 3 are boys...I lost a son 11 years ago. We actually had had 9 children.

Percolating on the back burner,(of the brain?)......nice and warm and snug...right?
Actually, I am cold right now. Another cold front...ugh...I hate being cold. It makes the fibro stuff worse.

I hope that today finds you much more comfy with those meds that you are taking.

Karen

Oluwa
04-04-2008, 01:01 PM
Cheryl,

47? Are ya walking? That seems so abnormally low. You have FMS too. Goodness, all these assailants, how does a person do it. I am so thankful my pain has decided it needed a break and is sitting this one out. Pills do wonders, kind of scary that it can alter the mind, the body so much...

And hey, thank you for the site links. I will check them out later.

Karen,

I was the baby girl till my sister was born. She is four years younger than I.

Oh no, not the brain..I meant when you haven't been tending to yourself, back burner since your Nadia has been ill. How is she doing? Still no diagnose, eh?

Keep snug...



Hugs all around,
Oluwa

Oluwa
04-04-2008, 01:18 PM
Karen,

A extra big tight hug today for you. Today is the annivesary of the loss of your child?...and my Mum's passing, 13 years ago.

I love my Mum.
Oluwa

sits_inthe_corner
04-04-2008, 01:32 PM
Every single day I feel my mother at my side.

Every once in a while I have a dream that I'm visiting her in heaven. She makes me tea and we have a chat. It's very nice.

I can even hear dad putting around in the background. The first time I was kinda surprised that the let him in hahahahaha. Mom reassured me they did.

I truely feel I was cheated by losing her at young age. But I feel her love every day.

Oluwa
04-04-2008, 02:09 PM
Saysusie,

Feeling alright today? I hope so.

The pill concoction has does wonders. Wow, I should have had that mix two weeks ago. My mind feels a bit numb, rubbery...took my giggles away along with almost all of the pain.

I would get that pain before, but it never lasted that long, nor that intense. My forearms, just at the elbow, above the side of my knee, hips and the V on my back. I had that same places of pain when I first posted here...the connecting tendons I always called it.

Being in such a mess with GERD, herniated disk, disk degenerative disease, prior surgeries and IT, who knew what was what. I am still confused but thankful the pain, is minimal. I can deal with it.

It is Friday, Happy TGIF. My husband called said his flight is delayed and would miss his Atlanta connection so he rescheduled for a Saturday morning flight.

Enjoy your evening.
Hugs,
Oluwa

Oluwa
04-04-2008, 03:13 PM
Susan..SITC...big tight head hugs...I wish we both had our Mums. I know you must feel motherless like I do. I am sorry you lost your Mum.

At first, when I would dream about my Mum, she was always in the background. Sitting on hill, sitting on a couch...looking on. Then I didn't dream of her for the longest. I prayed and asked please return to my dreams. She did, and in my dreams we are doing things together like we use to...

The last 5 years of her life, I don't think we ever missed a day of not talking..not a day. I miss the sharing...still after 13 years. With such longing...I moan, I grieve silently. I love her.

This is the first year I didn't plant huge pots of Petunias, deep purple Petunias for her, one of her favorites...a late planting, maybe this Sunday when my husband lands.

Love,
Oluwa