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Oluwa
11-14-2008, 08:44 AM
I don’t know where to go for help...to a doctor, in a pill. I run mindlessly in my head.

I know when I wake up tomorrow I will still have the same feat before me. How to make much ado about something.

I just don’t know how to do it anymore, Lupus is a bigger nag than I can handle. The constant nothing remains the same within in me, is causing me such despair.

It nags, and nags and gnaws…from the constant itch, dizziness, belly bloat, legs the size of a rhino’s, depression, chest pain, back pain, stomach burn, the bed, the salves, the pills, fat, pain, crusty eyes, swollen feet, tight hard skin, doctors, misdiagnosing, the waiting room, ditsy receptionists, stupor, the fog, burning skin. No part is left unscathed.

For everything there is a contrast the complete opposite in one body...in me. Chills, hot, full, hungry, insomnia, sleep for days....

Not one part of me is happy today...always complaining in my head about something or another…I am too tired, it tastes funny, my clothes are too big, my clothes are too small, cold, I’m hot, it hurts…

The more I complain, the more I get lost…can one get lost within themselves? It’s like a door closing out a lighted room, me. The stream of light is just a crack now and I find myself on the other side, I am the dark room, me…eyes trying to adjust to the darkness. Wondering when I never will be able to see my hand in front of my face…when.

Trying to find a glimmer of sunshine in each day is hard work…

I miss who I was, I miss my life. I miss being free. I miss running, feeling the wind dance in my hair. I miss sunbathing on the rocks of the Skykomish River…golden brown skin glistening in the sun. Hiking around Index in the vast rolling green ferns and lime yellow moss on the trees. I miss walking up and down the steep streets of downtown Seattle. Hoofing it through the layers of floors at Pike Place Market. I miss dancing in my heels and making dinners for eight. I miss running to catch a downtown bus to a concert or Bumper Shoot. I miss my creative side…words, paint, ink, fabrics…I've become a blank slate.

I miss shopping, working, chatting about life with family and friends. What I learned, what I saw, what I felt besides feeling pain. Now all I have to chat up about is Lupus, and what little thing I did today. Making nothing into something is hard to do, a feat.

I miss life. I miss spontaneity. I miss feeling good inside and out. I miss me.

Why would anything take her from me?

I am complainer even in this letter..ugh.

I, my spirit has become a symptom of Lupus.

Love,
Oluwa

I fell into the stupid hole, still looking for my equipment..I know it is in here somewhere. I will find my way out, I always do. Maybe tomorrow.

Saysusie
11-14-2008, 09:09 AM
Oluwa;
It is a small and sad consolation to say that this place is one of the only places where you are not considered to be whining, where the conversation is dominated by a disease and how it wreaks havoc on our bodies and our lives! It is sad to think that commiserating has become our primary means of conversation. It is sad and it appears that it is our truth.
To say that we would virtually give our lives to be able to enjoy just one day, just one 24 hour period, with no pain...no body distortions....no mental fatigue...that would be an understatement. So many people go about their lives, not having to wonder if they can get out of the bed, if they can venture into the sun, if their legs will swell up like elephantiasis, if their head is going to feel like it is in a vice while being pounded with a sledge-hammer. So many people go about their lives not appreciating the fact that they can climb a set of stairs, they can eat without pain, bloating, or regurgitating. They take for granted the fact that they can clean their homes and care for their children. Yet, in spite of all that they can do...can you believe that THEY WHINE about insignificant S#@!..."my hair won't curl...my butt is too small.....my bikini is out of fashion....my boyfriend didn't call.....and on and on and on....."
So, my dear, for you to come to us because you are frustrated with the constant pain, the radical limitations placed on your life, the unwanted transformations of your body, the feelings of being lost and in darkness.....THAT IS NOT WHINING!!!!!!! That is sharing feelings that we all understand because this disease has taken our former life away from us. So, don't ever feel that you are being a complainer. You have every right to be angry, upset, depressed, and frustrated. If you don't, then my GOD, nobody does!!!
I wish that I could ease your pain, love away your unhappiness, bring some light into your darkness. All that I can do is to be your friend, be your understanding friend with no judgments and no criticism. Just understanding, caring, and reaching out to give you my cyber hand to hold, and listen to every word that you say with all of my compassion. Because I care, I understand, and I am here for you.

Always
Saysusie

cheryl_v
11-14-2008, 09:50 AM
Hi Oh, need my falsh light and shovel? It's in this clutter of a mind somewhere up here :lol: . All yours to borrow, God knows you've lent me yours when needed. The constant everyday pain, sitting on the side-line watching your life and others go by can be to much to bare at times. I still have my gloomy days. I feel I am whining too, but remind myself I do have a real reason too. Like Saysusie mentioned of those who complain of idiotic bull crap. Have 1 week in one of our lives, then see how you would really view things. I miss the old outdoorsy me so much at times that I won't look at old photo's. That girl is just gone. You mean so much to me and others, it hurts to hear your pain and despair. E-mail me if you wish, I'm sending it in a pm. Do feel better soon. I put fresh batteries in the flash light and sharpened that old shovel, yup I found them :lol: .

rob
11-14-2008, 01:45 PM
Hi Oluwa,

You always have an interesting, and accurate name for things. A Stupid Hole. Now that really resonates with me, as I spend too much time there myself. I think about who I used to be every day. That person is gone. Those days are no more.

I've watched colleagues not only catch up, but surpass me, and achieve dreams I know could have been mine. I've watched the love of my life move on and marry a man who should have been me. It's like time stopped for me, and everyone else just kept on moving forward. I'm a spectator now, rather than a participant in life.

I find myself asking the same questions you do. Why are our symptoms so merciless, so unrelenting. What sort of monster takes away so much of us. Why. What did we do to deserve this? I don't know. I don't know the Oluwa of old, other than what you have told me. I do know the Oluwa of today though. I see sparkling eyes and a smile that is contagious. Sometimes those eyes and smile are framed by a face that struggles with meds, and difficult symptoms, but what's behind those eyes does not change. I see a person with such empathy for others. A caring soul who will help in any way she can to ease another persons fear and hurt.

I read your words and find them beautifully poetic. I read stories that make me laugh, and smile. You do so much here to welcome, and help others. Sometimes, I know you are having a terrible time, yet you manage to take the time to help a new person learn about IT, and do all you can to ease their fear. I think you will always miss the old you, I know I miss the old me all the time. I'll never know the old you, but the Oluwa I know today is a wonderful, amazing person who has so much to offer. We have to believe that we still have good days ahead of us. I know it's hard to think about that right now, but they are there waiting for us. Some days the light at the end of the tunnel is just a tiny glimmer. Other days we get to poke our head out of that tunnel and bask in the light. It's a terribly rough road, but we have to keep going the best way we can. I hope you are doing OK tonight. I'll talk to you later.

Rob

Oluwa
11-14-2008, 05:53 PM
Love away my unhappiness...such beautiful words. I feel them…thank you Saysusie…

Helping me to light my way, I see the circle of light…soon I know it will light my path and I will move forward....thank you Cheryl.

Easing my fears, seeing my beauty when I forget it exists and not just in the snap you have me….I thank you Rob.

I forget how to ease my own fears when I am being swallowed by them.

I really don’t complain outwardly, at home, as I do so much inwardly, in my head…I wear myself out. Being so consciously aware of my body, coddling, covering, protecting, resting, propping. I am exhausted mentally.

I’ve been stumbling, my mind in and out of pot holes and tripping over higher than normal sidewalk curbing for quite some time…my mind feels like it is getting weak...no longer able to maintain a well-balanced spirit like a twisted ankle.

And the one event, where I felt like I rinsed my pain away literally….that gave me a feeling of whole body comfort….not negative physical stimuli was a long very warm shower. My quiet time, which now feels cruel, is 15 minutes maximum of cool warm water for the last 6 weeks or so…b-r-r-r-r...no joy and comfort. Tense tight. Funny how something as small as that can bring me so much comfort, when taken away it seems like the last removable Jenga tile replaced on the tower…collapse.

Just when I think I’ve things under control, somewhat… another unsavory crony pops up and has a seat at my table. It is just too much negative things going on concurrently with my body. Too much like I am being pecked to death. And who am I going to swish away? Me? My thoughts? Or do I just scream.

What was my ‘norm’ before seems to be in my past, shelved with my real normal…now I am so abnormal, I can’t get use to this pain, the rash..unrelenting…

I’ll cry more rivers, again become discouraged with health care, doctors…tighten and purse my lips not taking another pill…as of today I am just here...I exist. No tears, no smile…I just am. When the sun rises tomorrow I will look for me with a smile…as for now I am okay just being instead of a chaotic pile I was this A.M…

When Monday comes, I will start the calls to the Gastro...and ask why is my stomach, the pain and burn getting worse. Move forward, be in control. And by then, maybe I will be fortunate and the rash will stop spreading and I will soon not have fuss over my skin and my IT 'norm' will return...If I can't have me, I want my IT 'norm'....

Night..thank you guys for helping me steer my vessel…
Hugs…squeeze.
Oodles of love,
Oluwa

sits_inthe_corner
11-14-2008, 05:54 PM
Crawling up out of my hidey hole to give ya a big asses head hug.

Loves ya girlie, whether your quarter back or the foot ball.

I agree whole heartdly with everyone else...you give so freely of yourself when we are in pain and :lol: whiney.

Wishing only the best for you :B-fly:

You and grace and beauty to this board.

Oluwa
11-14-2008, 07:10 PM
Oh, SITC..in the hole too...head hugs.

Wanna share one hole and get on my shoulders and you can crawl out, then grab my arm and pull me out.

Football....you made me giggle.....

Love,
Oluwa

cheryl_v
11-14-2008, 11:14 PM
Hi Oh and SITC. I have many lights and shovels :D , spares anyone?

I do understand to well. I fight despair and depression everyday along with pain. I want to sink, let it over take me. Please take me, my fights gone. Then I see the 2 of you helping others in pain, while in pain. Actually gives me hope. Makes me force that smile and get going. I have itchies, migraine, jaw pain, joint pain 75% of my body, muscle weakness, fatigue, light headed and sleeplessness. I have 3 kids and hubby that demand of me and will not give me a break. I want to just give in and cry. Then their is others like you 2. Your physical pain and misery you have, yet you keep helping and going thru your days. I have been helped so much from the likes of you guys, I wouldn't be here now. This place and everyone is what's keeping me going at times. On the outside I smile and do as expected as a mom and a wife. Then once again night fall hits, all go to bed and despair hits like a ton of bricks. Like you Oluwa, I keep it in. My mind churns and burns with thoughts and pain and anguish. I put on a good front :D , but this is how I feel most of the time :( . This is the one place I can let loose and be honest, thanks to the likes of you 2 and everyone else here. Hope tomorrow brings a better brighter day for us all. Sleep tight and good dreams, off to see if I can sleep yet.

By the way, this place is my world. Wouldn't know what to do without WHL, its theraputic. At least for me :D, as well I'm sure for others. Ok enough chat, without sleep this is looking like mumbo-jumbo. Not sure if I'm making since anymore.

sits_inthe_corner
11-15-2008, 03:10 AM
I'm thinking we need a more of a trench than a hole...I'll get hubby to loan me a backhoe so we can dig one....then we can all fit into the lupus trenches.

Hugs to ya cheryl...when I'm around other people my mind is distracted, when I'm alone with my thoughts my spirits sink to new lows.

Draggin my ass to work (no matter how painful) has become preferable to being alone with my thoughts.

If you cant do something.....you cant do it. Time to let hubby man know things wont get done.

That's where I stand with my hubby...if I'm not up to it...it's not going to happen. I dont worry about whether or not he'll pick up the slack or not...I have to decide for my own self what I have to let go of.

Sure there are things you absolutely have to do, but you need to finds things you can let go of so you have some strength and energy to do the things you NEED to do.

Deligate! This is the way it is mister. I no longer _____ (fill in the blank)

If ________ is to get done then you need to do it.

For me, it was .... I no longer take dirty clothes down to the washer, nor do I bring the folded clothes back up.

I do the wash, but if it's not down there to be washed it doesn't get washed. I can NOT do the stairs with an arm full of anything.

And if it's a really bad day...I can not do the stairs period.

There's alot that I keep to myself, and will continue to do so, but you have to get "some" help from the people around you in order to make things more tollerable.

Such a battle to even arange my kitchen to a more arthritis friendly lay out.

I finally said, "I'm QUEEN of the kitchen" it's my kitchen...I do the cooking...I need this place organized so I can easily get so what I need so I can spend time prepairing a decent meal and am not in agony doing so. If I put things down low, or pitch things we rarely use so I can get to items I do use then STOP moving them back.

I say where things live now. For example pots and pans. I can't go digging in the back of a low cupboard for them...they are heaving and it's hard on my knees to do so. So they have been moved up to cupboards that I can easily access. Stuff I rarely use have been moved to the highest and lowest shelves that when I need them I ask hubby to get them for me.

He doesn't have to "understand" my pain...he just has to accept that it's a fact! and I need his help....or he can enjoy weeks of nothing but KD and hot dogs HA!

Wow I can really ramble, can't I? LOL

Oluwa
11-15-2008, 10:59 AM
CV..SITC..

Hey, hey..misery does love company. We could have a shindig in the trench. Being with company, of the same...couple with laughter, jokes, about our woes...uplifts makes the pain, the loneliness dissipate.

I tell everyone, vent let it out and more often than not I am reluctant to let it out. Why is that on somethings we don't take our own advice..is it because we think it will not work for us, because we know ourselves sooo well. Or is it because I fear to let anyone see that I am too weak and not as strong as they see....and times for me, it is because I don't want to pull anyone down in the hole with me...

How you two women do it..work, toss in a family, children, Lupus and it's cronies..wow. I could never work. Last summer maybe, but I've tumble downhill like Jack and Jill since, oh, about last year August. I applaud you both, really I do.

I've noticed in my home writings, or even in my post how my words, expressions have changed since last year. It is chipping away at my inner spirit that makes me, me...

Gosh, remember when I let loose with anger because of my fears to, on my husband when we were shopping for palms trees. In the SUV on the freeway. I think about that day often. How the pain, the unknown, the fear crumbles my spirit.

I felt like Lupus cornered me, like a poodle and I came out snapping, biting and growling... out of fear and intimidation. Intimidated by IT because it is so much bigger than I.

SITC..your household stance sounds like mine. Relocated, reorganized my kitchen to accommodate my back and hands. I went the reverse dinner plates below on the island, heavy dishes, pans at waist level in the food pantry. Serving bowls..on the bottom shelf of the top cabinets.

I too dread the stairs. I told my husband I need a small refrigerator upstairs, the small bar kind for drinks, snacks as I spend most of my time upside. The media room, my activity room, PC is all upstairs. I made one of the guest bathrooms upstairs for me. The stairs causes more pain in my ankles and I have one knee that sounds like denim ripping.

You guys, your words of me are just too kind..thank you. Without you, and everyone...WHL would not exist. Give, receive..of ourselves, that is what life is about. Kindness and graciousness. You two are filled with those qualities...thank you...

Today though it is gray outside without rain...gray doesn't have to be gloom. I will look at it in layers of gray..monochromatic. Light white grays to dark with the tree line against it like a black silhouette. There is beauty... I just have to adjust my perception, my thoughts, my association on how I receive it today.


Thank you, everyone for helping me keep my foot in the door crack. The light is still shining in...

Head hugs.
Love,
Oluwa

Saysusie
11-15-2008, 11:05 AM
So, it appears that we are all hiding someone inside of ourselves who is, truly and honestly, who we are. We are mute, to our friends and family, about the constant pain because we feel as if we are dominating our conversations with moans and groans. We put on brave, smiling faces for our families and friends, while inside we are cursing at what feels like the slow, but inevitable, destruction of our bodies and our minds. We say to ourselves, "Who wants to hear about this all of the time?"

I've found that this family, here, is filled with people who not only want to hear it, but who genuinely want to help. So, our screen names actually becomes our true personalities. Our screen names are how we identify how we TRULY feel, both emotionally and physically. This is where we tell the whole, undiluted truth about Lupus, and its cronies, and how they "peck us to death" (as Oluwa said).

It breaks my heart that so many of us have to fight, day in and day out, just to have some quality of life - and even then, we are beat down by this disease!! It is a miracle that more of us are not literally insane. I think that it is a testament to our strength and character that, no matter how this disease batters us, we are still always here for one another and we give so willingly (with no thoughts of self) to help each other.

As I said, it is sad that this is our lives...but it is our truth and I am in awe of each and every one of you for who you are and for what you do for each other.

Peace and Blessings
Saysusie

NoodleMom
11-15-2008, 11:38 AM
Oh Oluwa,
You are so magnificent with words and word pictures. Your words so describe how I feel. I was in tears (still am) this morning because just stirring jam on the stove hurt my arms so badly I had to pass on the job to others. It brought right to the forefront all the abilities that I no longer posess. Actually been on this island for awhile. at times I feel so self center because I cannot relate anymore with others about life because all I have is my pain and the one thing like you said, the one accomplishment of the day. So very insignificant.

I hurt for you and for me and all of us.

Kasey

Oluwa
11-15-2008, 11:43 AM
Dear Saysusie...

Your words written so beautifully to frame up such an ugly disease...

Your words express exactly how I feel...inside and out and how I express myself or don't.

Everyone, from the first introduction are giving of themselves..that first hi is saying I am like you too, you are not alone and the welcoming that follows is saying the same. Strong or in pain, we do the dance well together...helping each other because we know how the other feels.

I echo your words, in awe with each and everyone and admiration of everyone's strength while in a constant battle with the disease.

Happy Saturday...head hugs...squeeze.
Love,
Oluwa

sits_inthe_corner
11-15-2008, 11:48 AM
Gentle hugs to ya Kasey,

I keep thinking of my mother, and all the things she did. Even when it must have been torture for her to do so.

Sometimes I feel like such a whimp and a cry baby.

Other times I understand why she kept pushing herself. What else are you going to do.

I wish I had the chance to tell her how much I admire her strength. But at the time I didn't realize how much of her inner personal strenghth she had to call on in order to do the laundry, cook our meals, clean our home, buy our groceries.

I do realize it now and I admire her more than words can express.

Oluwa
11-15-2008, 12:00 PM
Hi Kasey...

Head hugs. It is hard when simple tasks become a feat. A feat indeed...a feat for someone who knows no pain that comes with a disease could ever begin to understand.

Sometimes even using metaphors to convey our message of our pain, still doesn't project the pain.

Stirring jam to us is like brushing ones teeth with a uncast broken arm and hand...

I know how we want to make food with love. It creates memories..but sometimes store jam is better. Better because we can spend more time smiling with the family instead of in pain, holding it in, crying because the once loved jam making becomes another chore.

Massage your arm muscles, fold them on your lap and have your children toast some bread and spread the jam you made.

Thank you for your kind words...

Head hugs...
Love,
Oluwa

coltsfan
11-15-2008, 07:45 PM
Oluwa,
I am so sorry you feel so badly. You have had nothing but kind and helpful words for me, from the first day I was on this site and inside I was scared and crying. I will throw down a strong rope to help pull you out of your hole so that you can sit in a comfy chair and watch the beautiful sun come up over the horizon. (or in my case here, watch to see if the rain is turning into snow yet)
I still sit and watch people do things and think, it isn't fair that they can run and jump and I can't. Sometimes it takes all I have not to become that bitter and hateful person. Then I think, I have a whole site full of friends and commrades that are like me. They all understand why I don't want to go to the mall today, or why I ask for help carrying the laundry to the washer.
I will gladly lend you an ear or a shoulder and let you vent away. Get it all out and make room for the happy feelings.
Robyn

cheryl_v
11-15-2008, 08:30 PM
Hi all, sorry so much pain going around. I liked the idea of relocating my kitchen. Spent my evening doing just that. I'm the type that has things in one place always. So it was a bit of a challange :? , but I learned to just move things and expect their new places :D . Today was good, went to mum-in-laws and she had free clothes given to her from a friend for my 2yr old. No stains, all so cean and cute. I was lucky, and lil miss is so happy :D . We topped it of by going out to eat, I'll worry about that bill later. I'm so sore now, but happy for the moment. It is so unfair to have to deal with despair and pain daily. We need a really long trench, to hide instead of fall into with despair. This place is whats needed and helping us all. Just imagine how and where we would be if we didn't have WHL. I don't want to even think of it for myself :shock: . May we all sleep well tonight.

Oluwa
11-16-2008, 05:46 PM
Thank you Robyn...head hugs..

With all these words, love, care and concern from everyone.... I am up and out of the stupid hole. Just laying at the rim, in the grass a bit exhausted.

My chest and back pain from Gerdie, then the rash returning after the steroids, seemed like there was no relief in sight, no end. It just snared me in like a booby trap. My mind wandered into the what ifs. Then into the pity party, where I am the guest of honor...and then from there it took off in to griefing my life.

My mind was reeling but now the paced has slowed considerably. Maybe my IT 'norm' is around the corner. Funny how the IT norm has become my norm. Who would have thought I would miss it.

Today I want to feel like I did six weeks ago and six weeks ago I wanted to feel like I did last year. And last year I wanted to feel like I did four years ago. Always changing, adapting...acclimating to the disease...

Enjoy the night, everyone...thank you very much for being my friends, my IT family..for being here for me, for all us....
Head hugs...
Love,
Oluwa

cheryl_v
11-16-2008, 06:43 PM
Glad to see you doing better Oluwa, yeah :BIG: .


We all fall into that hole from time to time, we're only human. Its natural, another part of the norm I guess. Everyone falls into despair, even healthy people. That's something I've come to learn and except. Even a person as sweet and helpful as you needs to complain as well. Kind of theraputic in a way, at least it seems so to me. May tomorrow bring a smile to your face and heart. Night, and gentle hugs.

Oluwa
11-17-2008, 07:26 AM
Hi CV...

Your rearranged kitchen will bring a great amount of relief. You will probably spin to the left, then to the right and ah, there it goes, there it is. How did breakfast go this morning?

Have a great day..
Love,
Oluwa

cheryl_v
11-17-2008, 10:27 AM
Hi Oh, cheated this morning on breakfast and served banans. Lunch wasn't to bad, dinner will probably the most challange. I kind of like it though. Turned out to give more room :D . Can't believe I never thought of it myself :lol: . Especially every time I gripped "if it was in an easier spot to get too....". Better late than never. Glad you guys mentioned it.