View Full Version : Tired of Chasing the Magic Bullet
08-23-2009, 11:26 PM
I really need to go see a rheumy..... but after 28+ years, I just can't seem to make myself go. I need to try to figure out if I DO or DO NOT have lupus, once and for all. And if it is NOT lupus, then what the hell is causing all this inflammation?
But I can't seem to get my self to go to any doctor for any reason anymore. The past few years, I've slowly just stopped going, because I just don't care anymore.
I have not even been for an annual pap smear & exam, along with sonogram (I have endo cysts) for 2-3 years, and no mammogram for even longer.
I don't even want to go see my regular doc, who is a sweetheart & very compassionate.
I guess I'm at the point where I am just raising the white flag of surrender. I have been on the borderline of a lupus diagnosis for 28 years, but they won't treat me for it. I am full of inflammation. The Mobic takes the edge off. The Neurontin & xanax helps the pain, to a point. Nothing helps the fatigue, which is incredibly bad.
I really need to be seen and be treated.........but I seem to have come to a point in my life where I am tired of chasing the elusive "answer" to all my physical issues. I have fibromyalgia, endometriosis, osteoarthritis, thyroid problems, eye issues, carpal tunnel, sleep apnea, high blood pressure, crushing daily fatigue, severe tendinitis & plantar fasciitis in my feet, and on, and on, and on.
I am sick to death of going to doctor appointments and they never do me any good anyway, so why should I waste my time. I am just too tired to fight.
I just felt like writing this tonight.......I don't know how it will change the way I feel. Just wondered if anyone else feels this way. I mean, if I have lupus, so what? Can they really give me anything else to improve my quality of life? Sometimes I think so, but sometimes I feel like it's just another big runaround like the 2 years it took for me to get diagnosed with fibro.
Sometimes I look at the handfuls of pills I take every day (when most of them make me feel like total crap, esp. BP meds & others, which can cause fatigue) and wonder......WTF??? Why do I take these meds that they give me when I still can barely function? What is wrong with this picture?
I feel like I am doomed to spend the rest of my life feeling like crap......and I have begun to make my peace with that. I've sought help for half of my life and to no avail. I banged on doctor's doors for years and years and they just kept saying OH you are So Close to a lupus diagnosis but just Not Quite. Okay...Whatever.
I don't often allow my true feelings out. It just bums everyone out including myself, so I always try to cram all the sadness and hopelessness deep down and smother it with smiles and laughter. But every now & then I recognize how truly sad I am that my life has really been such a huge disappointment.
08-24-2009, 04:12 AM
Head hugs...I see and read your sadness and hopelessness.
I wish there was something I could say to make you feel better...make it go away. I only have words of encouragement to say as long as there is life there is hope. Life may not be the party we planned or wanted for ourselves but while we are here we should dance... can find ways to dance...party in our own way....
Yes, a lot of the medication we take makes us depressed, tired more so but there is a combo that can work. Our disease Lupus diagnosed or not is so individualize no one combo is right for all. Has anyone evaluated your drugs to weed out what isn't necessary, interactions and etc. Maybe you need those tweak...
Maybe you haven't found the right doctor, who listen, who gets it...we have to keep looking. When I first stumbled in here I felt like you even though I did have a diagnose. I had a new crappy doctor when I relocated. I felt closer to the dirt than a dance floor and I was ready to surrender too...blank, blank this crap.
Living a sedentary life makes us feel worse, though we hurt while moving some form of exercise is very important. Even if it a stretch routine everyday. Truly the benefit is less pain. I know, I have been there. I stretch everyday, several times and swim in the summer...
With sleep apnea has any doctor suggested Provigil? It is prescribed for those with just that...for the fatigue. It isn't prescribed for Lupus fatigue though..some doctors will prescribe it for off label use but insurance won't cover it. So check it out.
Have you heard of the new drug Savella for fibro..inquire about it...
Even if one hasn't had a diagnose, the Rheumatologist should still treat your symptoms of inflammation...what type of drugs have they prescribed for pain? If they suspect Lupus they could still prescribe Plaquenil...
Have you tweaked you daily foods? Avoid processed foods, sugar, alcohol...cigarettes if smoke. Al which cause inflammation. Adopt olive oil, flaxseed oil in lieu of regular oils..bright color foods...but not foods in bright colored wrappers (junk). Fish, salmon. Do you take Fish Oils supplements? Food is a big factor in the way I feel.
Sometimes just tweaking our home regimen can help alot with symptoms from any disease of illness...high blood pressure, sleep apnea, Lupus and etc. Medication is only apart of the answer...
If you want to share with me, you daily routine, work, eats, exercise and medication maybe I can help you with suggestions, changes and also things to ask your doctor for...
Do you sleep at night despite having sleep apnea....insomnia, restless nights is a big, huge contributing factor to pain and depression....
I do think you may need to find other doctors because it doesn't sound like there is a good rapport there...trust and faith in them.
I am just a keyboard away...
Me...I am Oluwa..I am 48. I have Lupus, GERD, Sjogrens Syndrome, Gastroparesis, Disk Degenerative Disease...3 spine surgeries...Carpal Tunnel, both hands..right surgery performed, Restless Leg Syndrome, Eczema, Fibromyalgia...and all the other cronies, side dishes..H. Pylori, constipation, nausea, headaches, insomnia, depression, night sweats, rashes and hives from nose to toes. Oh, I don't wear the tape on my nose though..hugs.
My current drugs...
Plaquenil, Imuran, Protonix, Lasix, Lortab, Ulracet, Darvocet, Xanax, Lunesta..supplementing with Fish Oils, Super B complex, Iron..
I don't know how much things have change because of the drugs..I am still in pain, still feel like a turd, fatigue and etc..but I do know because I turned my kaleidoscope a bit, tweaked my thoughts, became my own advocate, have the support of my family here I feel it is indeed a life worth living because on May 23, 2007 I felt there was no hope at all...my life was not worth living. I was a woman full of life, lived life and today my life is 10% of what it use to be. But on that day I found this special place....wehavelupus.com and realized through everyone here 10% was really a life worth living...and that 10% has grown. I change, I adapt..nothing remains constant...in a healthy life it doesn't either..it just goes unnoticed..and change that isn't forced like we are required to do almost daily when ill.
You'll find a 'sweet spot'...and we can help you. I think you feel you have no control..but you can and we can help with that too....
We are here for you...tight hugs..,squeeze..
Keep looking for your wellness, Porchy.
08-24-2009, 08:01 AM
Dear Oluwa......your message touched my heart. Thank you for caring.
It's just been such a long, long road. I am 53 and first became ill when I was 27. I am so tired. There is so much to deal with. But I will try. I used to be relentless in my search for wellness. I felt such a strong desire to be diagnosed, treated and then living life with the right combo of meds, skipping off into the sunset. Now all these years later, I realize that is not always the case. Illness does not always get treated correctly, diagnoses are not always made correctly. Life is not always "fixed".
There is a good rheumy in town, he used to partner with my retired rheumy......in fact this guy is one of the leading docs in the world for fibromyalgia research. I will try to get in to see him and see what he thinks regarding the lupus situation.
I will try to tweak my diet......I usually eat junk because I don't have the energy to fix anything healthy. We eat carry out food alot of the time. I know it's important but when the dinner hour rolls around, I am usually crashing hard and fixing a healthy meal is the last thing on my mind. Alot of times I don't bother to eat breakfast or lunch.
I am not usually this negative. I keep a smiling face on and am usually a jokester and laugh alot. The only reason I am opening up here is because I feel like I can share my deepest darkest feelings here. I think you guys understand. I don't have to paint on a smile. It's been a long, hard road and now I'm getting older, the hope to find the magic bullet is fading. Now I am well into menopause which also is another factor in how I am feeling.
Yes, I have sleep problems. Insomnia is a constant battle. Some nights I don't sleep at all. I can sleep better during the day. But then I am out of sync with the rest of the world, and that only adds to my distress. I feel like I don't belong here sometimes, like an alien on this earth.
My regular doc is a really good guy and he does really care, but for some reason I don't even want to go see him. I think I am just so sick of being sick I just can't stand to go to one more stinking doctor's office.
Anyway......I do appreciate you taking the time to write, Oluwa. Your words are comforting and you have given me good advice.
My antique business is my escape.......with the help of my husband, I can lose my sadness when I work on selling my antiques.....I have a passion for them and love being an antique dealer, selling both in a small shop and also online. It gives me a sense of identity (besides being a "sick person").....it makes me feel good about myself and it's something I do well. I hope the day never comes when it's too much and I have to give it up. I am just so grateful for the past 13 years, it has brought me so much joy.
Reading is also a wonderful escape. I am never without a book. It's one tool I use to get out of myself, for awhile at least.
Well, I've rambled long enough. Thanks again for your encouragement. I hope I can snap out of this downward spiral regarding seeking help for my illness(es).
08-24-2009, 08:44 AM
hi porchy....i am so sorry you are suffering from these "defeated feelings". What good news that you know of a great rheumy....please try one more time and make an appointment with him. We will all help you get up the energy to make and keep the appointment...so please give it one more try.
I do agree with Oulwa...i have found the foods with preservatives have a serious negative effect on me. Sometimes, i will cook a big pot of spaghetti, or a roast, then put into individual containers and freeze...this way, when i don't feel well, i can warm up one of the servings and avoid the quick foods....however, i will admit, that sometimes all i want is a fish sandwich and fries....so, i talk big, but i do slide off the wagon....
porchy, i promise we will help you....please don't give up on yourself....i see you pain in your picture, and i look forward to seeing one with the smile that is who you really are.
08-24-2009, 08:49 AM
Hi you, Porchy..
You will, you can....one foot, one step, one page, one book, one healthy meal, one doctor appointment at a time...then aim for a day of changes, then another, then a week...in 30 days you can feel a difference just by stretching and eating fresh.
No one is going to put you up in the front seat but yourself...So, crawl up and over the front seat and grab the wheel...
For me, food is a big huge factor in the way I feel. It is a big factor in a healthy person. My husband is healthy, trim, does 5 miles on the rat wheel...and when he has a day of junk he looks lethargic....and when I have junk, which to another isn't junk I am comatose. I say I feel greasy. My fall is Hersheys Plain Bar...one is my limit, times I've had two..and I feel queasy. Knew the out come....but my taste bud said more..
Salmon I have a 15 minute recipe, interested? Five minute dressing for salads. I know when we are fatigued we instinctively reach for quick energy surging foods...candy, fries, burgers, cakes, Subway, pizza. What they have in common...all are simple carb loaded and high in calorie and fat....but they make us crash even more.
Any foods I can clean up, cut the time...restaurant food... home recipes..let me know and I can switch it about...
Hows about Kashi cereal with milk in the morning? Even a protein drink would help. Fruit, cheeses....whole grain bagel. Handful of almonds.
Many of us are jokester, paint a smile to protect the world, our family from what is quaking inside. We could win Oscars for our performances but that isn't a good life either...we have to find better as your profile signature says We only have one shot at this. There is better...
Read some more in the forum...we all have different techniques to help deal with this life filled with pain...we hope for remission. Maybe with the right doctor, the right drugs you may find it too...Many here have...
I dislike going to the doctors too..I dread it...say the same. No more...but in the end, I know if I go I may just feel better. If you do go, when you go...mention the drugs....
My escape from my illness, from my fog...is the PC. When we stay focused on something it keeps ourselves from falling in the stupid hole. I am happy you have your antiques. I love 'em..but I never know what to buy. I buy a few odds and ends, but nothing that would require a dolly to move it.
We all care..head hugs...
Keep looking for your wellness...hugs.
08-24-2009, 11:25 AM
Wow.....I am overwhelmed. Thank you so much for your caring, Oluwa & mountaindreamer. I do have support from my husband, my mom & my aunt, but to have such strong support from people I don't even know..... but I guess you know better than anyone because you have been there. So thank you, truly........for taking the time to respond to my posts.
I will try. I will try to eat better. I will try to get more sleep. I will try to pick up the phone and call the rheumy's office for an appt. one more time. I will try not to give up, yet.
It's amazing how powerful the support of another person is. Thanks for giving of yourselves to me. I feel blessed and honored to have received the gifts of your concern & caring.
I will try.
I know how you feel. I'm "between" rheumo's right now, but I do have a great MD, and my neurologist is pretty decent. Despite that, I get so sick of Dr's offices, hospitals, tests, meds, waiting, arguing. Sometimes I just want to quit going. I was diagnosed with SLE when I was 36, and MS just over one year ago. I'm 41 now. Sometimes it seems like my appointments are ruling my life, on top of SLE and MS already limiting me.
When I got the SLE diagnosis, I was a successful businessman, had a fiancee, and many friends. Within 6 months, that was all gone. I lost all hope, I was all alone. I took a fistfull of Xanax I'd been saving up, and washed it down with a pint of Vodka. When that wasn't working fast enough, I got in my car and drove into the path of the first big truck that came along.
I decided to kill myself and damn near succeeded. The repurcussions and recovery from what I did took nearly 2 years to deal with and fix. After that, I started a new life, in a new place. I've made a couple of friends, and have found new interests and activities that I can handle given the limitations put upon me. One thing I love is antique toys. I have all sorts of stuff, but my real love is antique toy trains. I restore and sell old Lionel trains on Ebay and I have something thats very fun, and gives me a little extra money to supplement my disability pay. I escape into my trains. I also have three cats who are my best friends. I have discovered some very special people here, and I was even asked to be a moderator here awhile back. All these things give me reasons to live, reasons to keep on going to my various never-ending appointments, and take all those meds.
I gave up, and nearly lost everything, and although I have some really bad days, I have some really good ones too. Sometimes the good days are rare, but they are very much worth fighting for. I know you are in bad place, a dark state of mind. But know that there are others who understand how you feel, and even though they may be someone you may never meet face to face, they can, and do care. Hang in there, you are not alone, and things WILL get better. Thank you having the courage to open up, and welcome to our group.
08-24-2009, 11:42 AM
Count me in as part of the cheerleading crew too. You can do this Porchy! Life can get happier and better! ((((((((HUGS))))))))))
08-24-2009, 11:57 AM
I'm unable to tolerate fish oil.....it really bothers my reflux.
But I do take Theragran-M Premier 50 Plus multi-vitamins (for people over 50) and MSM, which really seems to help alot. I take about 1500mg of MSM a day.
My prescription meds are: Triavil (3), HCTZ, Atacand, Nadolol (2), Mobic, Levoxyl, Prilosec, Neurontin (3), Xanax (as needed), Vicodin (as needed), Zocor.
I have read that beta blockers (Nadolol) are notorious for causing fatigue. Neurontin, Triavil, Xanax, & Vicodin can cause fatigue also, but I don't want to give any of these up because even though the side effects are bad, I need them for their intended purpose.
08-24-2009, 12:14 PM
OMG.......Rob........thank you so much for sharing what you've been through. I want you to know that I appreciate you telling me your story. I am glad you made it through all that, and that you are still working hard to remain positive through your illnesses. I'm happy for your passion for toy trains.... and your kitties too.
I have 2 tabby cats, 5 year old brothers and 18 pounds each. They have taken over our household, make alot more work for me, but I love them as if they were my very own children. My hubby & I would be lost without these wonderful creatures. Some days, when I collapse on the couch.....just to feel my Tory come up and plop down on my feet warms my heart and brings a smile to my face. There's just nothing like a cat. Micah is my other sweet boy....he's very vocal and can nearly carry on a conversation as he will repsond to any question with a "maowww". :o) Anyway....I'm glad you have your cats to enrich your life.
Abbasgirl......thank you, also, for coming to my aid. I can't tell you how much it means to me.
08-24-2009, 12:40 PM
I think sometimes we all feel the way you do but we try to pick ourselves up, dust ourselves off and keep on going somehow? My Dr. tries to give me meds that have as few side effects as possible. It helps me to at least function some of the time. I am grateful for that. I have many of the same things wrong with me as you. Yes the fatique can be unbearable at times. Please don't give up hope though.
08-24-2009, 01:07 PM
Im sending you gentle hugs and you are lovely and your cats too.You keep fighting.We will support you through this and yes one day you will post a smiley photo when you tell us,you have a diagnosis,feel a little better and a caring doctor ...you will just watch this space.
I too have no diagnosis yet,i did then it was gone by a rheumi :) Im fighting and many days stay in bed am awake till 6am some days so miss the daylight,i miss life.You keep fighting as you can see you are not alone.We will help each other my friend.Just keep posting here and watch your support come to surround you with all our love.
Love n hugs
08-24-2009, 01:19 PM
Welcome to the group. You and I have a lot in common. I'm 52, and I'm also originally from Illinois - Hartford, to be exact. It's near Alton, and right across the river from St. Louis.
I also have a real mixture of autoimmune problems - RA, Lupus, Psoriatic arthritis and Sjrogrens. Throw in some Avascular necrosis and Meniere's syndrome for good measure, and there you have me. I've been through 3 years of doctors and the same run-round that you've had - "You just don't test high enough for me to treat you for this". I finally found a great rheumy who said that even though I tested with a low positive for those four things, if you add all of it together, it certainly showed that I had a reason to be in pain, and that I needed to be treated. I LOVE that woman, and I really don't mind trekking to her office. If you can find a rheumy like this, believe me, it will be worth the search.
I loved your kitty pics. I adore cats, too. At the moment, we have 5. We had 6, but my daughter took her cat with her to Colorado. We're getting ready to move to California, so we're very reluctantly going to have to put our two 18 year old boys to sleep. They are both very ill right now. The folks who are renting our house are keeping my 14 year old black cat named Shadow - what a relief!
We'll be taking Dax and Casper with us. Dax is a 2 year old polydactyl Maine Coon, who is a real riot to live with. He and my husband are inseparable.
Casper is a huge 5 yr. old flame point Siamese who is a real lover. He's like yours, and likes to cuddle on my feet or in my lap. Both of them love "helping" me to brush my teeth. They sit on either side of the sink and reach up to "guide" my brush.
A house is not a home without a cat! I tried uploading a pic of Dax with Shadow, hopefully it worked.
Take care of yourself, have hope and keep on talking with us - it really helps.
08-24-2009, 01:33 PM
hi porchy...i just remembered something....my dr. has me giving myself self a vitamin b12 shot once a week....this really really helps with fatigue.
you might want to ask about this.
as you can see....you have lots of friends here.
08-24-2009, 01:36 PM
Here is another 53 year old woman. I know what you are going through, I habe Lupus SLE, RA and Fibro and for about a week now, I have been in constant pain. My husband keeps telling me to go see a doctor, but I am, like you, am sick of doctors, plus they can't help me anyway. I am searching for a new rheumy, but didn't have much luck yet. The only thing, I can say is, whenever I feel like giving up, my german stubborness kicks in and I keep fighting. And then, there are the good days and even I get a few of those. On a good day, I often think, I CAN DO THIS and that is how I get ready for the next bad day.
So hun, don't give up and if you need support, we are here for you.
08-24-2009, 01:37 PM
Porchy sorry to hear what your going through but always take comfort in the fact that you are not alone. We've all gone through it and still are. I've had my denials...it's nothing it's just the flu then I went through a year and a half of diagnosis roller coaster...I finally got a diagnosis in June for Sgiorgens but they still haven't ruled Lupus out. I too hae yelled at my body and said why go to the Doctor's if I still feel the same..they obviously can't fix me. I'm finally getting better and understand although they may not be able to fix me entirely they can help me feel comfortable. And if that isn't all when we've started dealing with this then the depression has sunk in and here we go all over again. :arghh: But I always know I can come here and get support. So we support you and understand. :hug: :kiss::grouphug:
08-24-2009, 01:38 PM
hi debbie....i knew there was a reason i felt some common ties with you....i am of german ancestry as well....but i am not stubborn at all....yeah, right.
08-24-2009, 01:54 PM
I am thinking, with all the medication types, such as Nadolol, Triavil and Atacand if you BP maybe too low and is contributing to your already fatigue and tiredness?
A few of the medications like Mobic and Zocor are very hard on the stomach, maybe you should ask if Prilosec is strong enough to handle the drugs. I don't take Mobic for that reason and I use Protonix. I think I forgot to list that on my list drugs above...along with Reglan...lol. Pea brain.
I hear ya on the Xanax and Vicodin aka Lortab...makes me tired, foggy..but I need them too. That is why I have different levels of pain drugs.. Ultracet, Darvocet...pay add those so they aren't so potent when we don't need that high potent drug. Or half them...and see how that goes..
After reviewing your drugs...this is what I researched that maybe magnifying your symptoms...
Triavil...for your fibro. I was prescribed Elavil...wow, sent me in the corn. But these drugs can raise or lower your blood pressure and can cause depression.
Mobic...fibro pain, eh? I had that too. Very hard of the gastro tract...end to end and the stomach..wow. Bore a hole in mine.
Atacand.. side effects..muscle pain, back pain.
Nadolol....drowsiness, tired, changes in behavior, weakness
Levoxyl....muscle weakness, fatigue, sleepiness..anxiety
Neurontin...body aches, flu-like symptoms, insomnia, weak, tired feeling.
Xanax...dizziness, muscle weakness, depressed
Vicodin...interacts with Neurontin...increases the side effects of Neurontin...and well, the usual fog, drog and etc...
I would have your drugs reviewed by your doctor and maybe there maybe another drug on the market that can replace it..
Hope this helps...
08-24-2009, 02:03 PM
My gosh.....we do have alot in common.
Maria.....my aunt & uncle lived in Alton for years. He just passed away this past week. My cousins, their sons, still live there, on Olive St. And the cats....omg...your story of how they help you brush your teeth made me smile. Just like a cat. haha I'm sorry about your two older boys. That's heartbreaking. The downside of pet ownership.....it's so devastating to lose them to age or illness. I swore Never Again when I lost my little girl cat, Libby......she was only 8 years old but got kidney disease and we had to put her to sleep to spare her what 2 of my other earlier cats went through. But a house without a cat......it's just wrong. lol So here we are, 5 years with these boys.....every day they make me smile. Thank god for our pets.
debbie-b & mountaindreamer.....lol...I come from sturdy German stock too. My maternal grandparents came from Germany. I guess that German stubbornness has kept me from jumping off the Shade/Lohmann bridge all these years. haha There is, however, alot of depression/anxiety issues on that side of my family as well....along with fibromyalgia & arthritis in my mother and aunt from Michigan. We often wonder about our ancestors, and how far back the genetic "soup" goes with regarding to auto-immune diseases....? I know that both of my maternal great grandparents had RA. If I had life to live over again, I would love to delve into the field of genetics & chronic illness.
Thank you, thank you.......all of you. Each post warms my heart even more. You guys rock. xoxo :yes:
08-24-2009, 02:06 PM
Aw, your kitties are so cute, Porchy! I've got a sweet tabby too...she's a little petite thing and so loveable. http://forum.wehavelupus.com/picture.php?albumid=101&pictureid=1858
08-24-2009, 02:10 PM
Oluwa!! Thanks for all the research on my behalf. I do alot of research on the meds I take too, and it blows my mind that I am even able to stand up and walk across a room when I consider all the drugs I take along with the fatigue from the sleep apnea, insomnia, fibro & possible lupus. My mother & I marvel at how we must adapt to the meds just to get through a day. I can't believe that I am even able to carry on a conversation sometimes (or write, like now) and make any sense when I feel like I have been anesthetized.
You are a sweetheart for taking the time to look up my meds and try to help me. Thank you so much! xoxo
08-24-2009, 02:14 PM
mountaindreamer.......I have heard of people getting B12 shots. I take a mulitvitamin that has 30mcg (500% of daily recommended dose).....do you think that is enough? Should I get a bottle of B12 pills to supplement? I don't know about giving myself a shot. I'm not afraid of needles but I wonder if I could do it. I guess I could learn. Thanks for the tip!
08-24-2009, 02:15 PM
Abbasgirl, your kitty is SWEET. Oh what a face. I just want to reach out and hold her. She's beautiful. And you are lucky that she is lightweight. My boys weigh a ton and every time I pick one up, I pray my back doesn't go out. lol
08-24-2009, 02:17 PM
hi porchy....i never thought i could give myself a shot....but i found out that it is really easy. The needle is very small, and it does not hurt one bit. I don't know how the b12 pills would compare to the shot....my fatigue got so bad that my rheumy said i needed the shot....and it really works.
abbasgirl....that is the cutest little girl that i have ever seen....you can see the sweetness in her eyes.
08-24-2009, 02:26 PM
Just wanted to mention Brenda, Angel & DrinkofWtr......and thank you so much for your words of comfort & advice. I will read this whole thread over many times so I don't miss anything.
When you feel like you've been virtually on your own for so long like I have......this infusion of support is overwhelming, fantastic and so very welcome!!
I'm so glad I chose to sit down and write. I feel alot better emotionally already, all thanks to YOU all. xoxo
08-24-2009, 02:29 PM
You are very welcome.You are helping me also as i sit here feeling sick with swollen knees and a dog trying to chew my toe.xxxxxxxxxx
08-24-2009, 03:32 PM
I had to make a run to the bank this afternoon, and on my way home, as I waited at a red light....I happened to look over at the median. There, between the narrowest of cracks, grew a tall, solitary weed. It was not especially nice looking. It was faded and leaning off to one side. But there it was, growing tall, out of that skinny little crack in the cement.
I thought.....there I am.
Out of the narrowest fissure, somehow that weed found sunlight and moisture.....and against all odds, it lived and it grew.
If I hadn't had the pleasure of receiving your comments today, I probably would never have seen it. But I did see it, and it gave me hope.
08-24-2009, 03:35 PM
Hi love. I am so sorry you heart is so heavy today and life is so hard. It is a scary thing to feel like this and even scarier when you don't have any answers. Nights seem extra dark and the days seem to be all fuzzy. There are days when I want to close my eyes as soon as I see the sun just so I can go back into my dream world from the night before. It is a hard pill to swallow, literally. The medicine can make us hurt just as much and even more at times. There are days when the tears fall for no reason other than the exhaustion we all feel physically and emotionally.
I know how you feel......we all do and that is the first thing that should lift your head. You are not alone and never will be. During the bad nights I will think of my friends here and remind myself that someone is awake hurting this exact moment and there is comfort there.
There is also hope. Hope that the doctors will and can find out what is going on with your little body. Once they discover what is going on they can treat the disease even better than before.
The one thing to remember is that none of this can happen unless you take the first step. You took a step towards us and now we will take a step with you. We promosie to be here for you as you go to the doctors and have tests ran. We will be here for you when you get frustrated with them and we will hold your hand when you need to cry. We will listen to you when you just need to get everything out in the open. We will be here when you are finally diagnosed one way or the other. The key thing to remember is that we will be here, today.......tomorrow.......always.
Don't give up. Don't give up because your family loves you and stands beside you and don't give up because you have another family, a family you met here today.
Tomorrow is a new day and when you wake up, hold your head high and make that choice to take care of you, your family and all your new friends by calling the doctors. Call the rheumy, gynecologist and even your family doctor. Get in to see all of them over the next few months.
Take care of yourself and remember you are never alone in this world with this disease. There are many faces of Lupus and many different stories. Your is one and it is now being combined with ours. You get to decide how your story ends.......make it a happy ending :grouphug:
08-24-2009, 04:09 PM
Danica....thank you!!! You made me feel so comforted and cared for. I am so thankful that I wrote that first post! I feel like I won a million dollars, meeting all you guys today. I have each one of you in my heart now. I know I am among friends here. What a relief. It's been a very lonely journey, even though I have my mom, aunt & hubby to talk to. They love me very much and try to give me a shoulder when I need one. But this is very special and I am so grateful to each of you for taking the time to help me carry my burden. It feels alot lighter now!
I had scheduled an appt. with my gyne, and then a few days ago I canceled it and rescheduled for next month. I have an appt. with the eye doctor next month too. I still need to set up an appt. with the rheumy. It's like I have a mental block now, I just don't wanna go!!!! I just want to stay in my house and live what's left of my life ~ run my antique business and forget about trying to find help for my ailments.
You have to understand.....we're talking 28 YEARS of me trying to find answers. I wonder how many doctor visits I've had in 28 years. I wonder how many times I've heard, "You are borderline lupus, but not quite enough for a diagnosis"...."Your sed rate & CRP is very elevated but not quite enough for a diagnosis".....and then they send me home! GRRRR!
It took an entire 2 years of doctor visits and hospital stays to get a fibro diagnosis. But that was back in the early days when they didn't know hardly anything about it. And I was young enough that my energy levels were alot higher than they are now, even with the illness. I had youth on my side, and even though I was miserable, at least I had the benefit of having more energy and mental strength and fortitude.
I sometimes wonder if menopause is part of why I feel like just giving up or what. I have just felt myself slowly, slowly not caring anymore. My hormones could be another reason. Menopause can cause fatigue as well. ugg.
I think a big part of it is that there is just so much wrong with me. I just feel stunned alot of the time because there is just so much to deal with. Kind of the "deer in the headlights" thing.....I just stand there, waiting for the next thing to hit me. Every day something is happening, something that hurts, or something not right, or just the fatigue. Every day it's either this or that. AAAGGHH! :hissyfit:
BUT anyway.....with your help, I will try to do what I need to do for myself. It's time to step up and help myself. I just pray I have the energy and the will to do it.
Thanks for your support. xoxo
08-24-2009, 06:09 PM
Your boys (cats) look just like my Mom's boy (cat). He is the sweetest cat on earth and so laid back.
08-25-2009, 07:11 PM
Small steps, that is what you will need to take. Set up a time frame. For example, tell yourself you will get in to see all your doctors by the end of the year. This gives you four months to see them. This way you can spread them out and take baby steps toward each of them. We are all patient people and understand that this will take a little time for you to get through so remember that we have all signed on for the long haul. We will be here tomorrow, four months from now and even four years from now! You now have an online home with a family that supports you and surrounds you all the time. Just keep making progress. We will be here to get you through it all, one day at a time :hug:
08-25-2009, 08:51 PM
Danica......that sounds like a good plan, but I may not be able to spread things out that far. My husband's job of 18 years is in jeopardy and we don't know from one week to the next if he will even have a job in a month. Things are very tentative. If he loses his job, I lose our insurance coverage and if that happens......there will be no more appointments, no more tests, no more medicine. I will be in deep trouble. So I am facing the prospect of rushing all of this and I am struggling with it so much.
Even though I know I had better get moving and line up some appointments fast......before something happens with hubby's job........I feel like I am standing in cement. I just can't pick up the phone. I do have my gyne appointment & my eye appointment scheduled for next month. I don't know why I am having so much trouble calling the rheumy. This would be my first visit with him, so that's always stressful. Will he & I "click"?? I also think part of it is I am just not sure what to say. I don't know how to tell him how bad I feel. I can say, My fatigue feels like I being crushed to death. I can say, My pain is up & down like a yoyo. I can say, I think I have lupus, can you run tests to find out? I guess that's all I can say. But those three lines seem so ridiculously benign compared to what I am feeling. It's like saying my finger hurts after someone smashed it with a hammer. I can only hope that he will somehow be able to see & hear & feel what I am experiencing and help me.
Now......I have a question. Let's say that the rheumy says......YES, you have lupus. Okay. How much do lupus meds cost? I have looked at the possible side effects of some of the lupus meds and they scare me. What if I can't tolerate the meds? What if we lose our job and we can't afford the lupus meds.
There is just so much going on in my life right now. The fear of losing his job is strong, AND......get this.... our insurance will not cover blood tests. (I know, it's crazy but they don't) I am already hundreds of dollars in debt due to past medical bills from tests for both of us, like MRI's, blood work, etc., and our portion of the bills that is not covered by insurance. If I add to that debt by going to all these appointments, and he loses his job, that will be that much more that we owe, on top of credit card debt........well, that is what we are facing.
I never dreamed that there would be a possibility of losing his job. He is 58 years old and has been there for 18 years. The company he worked for was recently bought out by a larger company and then shortly after the buy out, the big company told us that they were in financial trouble and might go bankrupt unless we agreed to a 15% give back.....which means they take 15% of his take home pay. Also they are not contributing to the pension fund for the next 18 months. So we are trying to get by on what is left over.
So that's the situation. I'm at a loss for what to do. I guess my health is the important thing and I should hustle in to see all the docs I can before the company goes belly up. Yet I can't help but think of all the added debt that will incur for us, on top of the medical bills & other bills I am paying now.
I just feel numb and scared and frozen.
If we lose our insurance I will not be able to afford alot of the meds I take. Mobic is one (NSAID), Zocor for my cholesterol, Atacand for my blood pressure, Neurontin. I won't be able to afford the $110 it would cost me to see just my regular doc. (I pay $20 co-pay now)
Like I said, I feel frozen. I would love to hear some advice from anyone. What would YOU do?
08-26-2009, 08:22 AM
there is so much uncertainty in today's workplace....so many people don't know if they will have a job next week....it is so sad.
however, your health is the most important....if you don't feel you can schedule the appointments, then maybe your mom or husband could make the call. I have learned to let others help me when i just don't feel like doing things....this can be mentally or physically....sometimes i just need help.
you mentioned menapause....get your gyn dr. to check for this. I went through menapause at age 32, and i have seen on this forum where several ladies have experienced early menapause....could be related to lupus.
you are concerned about showing your dr. how badly you feel....start yourself a journal, write down all of your symptoms that you presently have and any that you have had in the past. When you go in for your appointment, make the dr. a copy of the list....when he sees this list, he will understand (if he is half competent).
Also, before my dr. diagnosed me with lupus, she gave me a medrol injection (steroid) and said that this shot is used as treatment but also as a diagnostic tool....lupus responds to the shot where other illnesses do not....so, my improved symptoms helped her make the diagnosis.
i am so glad that you have joined our family....as danica says, we are here and always will be.....keep taking the baby steps and we will walk beside you along the way.
08-26-2009, 10:39 AM
Phyllis, thank you for the tips! Good advice.
Everyone has been so thoughtful and caring here. I'm glad I came.
08-26-2009, 06:46 PM
I think you and I were supposed to meet! Tim, my boyfriend of three years, and I both lost our jobs last year. We have been out of work for over a year and I no longer have insurance. I understand the helpless feeling you are feeling right now. We are actually in the process of loosing our home. I had a few interviews last week and have one this Friday. I am just crossing my fingers that one of the jobs come through and that they offer insurance. Just breath! There are times I have to remind myself to do that because it is easy to stop breathing and feel so afraid that you won't want to wake up in the morning. Please get the apponintemtns lined up because the largest costs are the doctors, the rest we can get you through.
Once you get in to see the doctors they will give you samples to try, almost all doctors do this. Make sure you have something to actually treat the disease (plaquenil, lyrica, prednisone, methotrexate), something for the pain (tramadol, vicodin, motrin), something to help you sleep (ambien, lunesta) and any supplements the doctors think might help (magnesium, folic acid). These are all examples of medications that some of us are on.
Ok, now that you have samples make sure you get WRITTEN perscriptions. Now we can help you with the rest. Go to these two websites and type in your medication and you will see what you can qualify for.
This has literally saved my life. I receive all my medication at a discount and my lyrica and celebrex is completely free from Phizer. I would have never known these programs existed had it not been for my love Oluwa who posted it over a year ago! The only thing you need is your perscriptions and your doctors information. My doctors now know that I no longer have insurance and are really great about making sure everything is filled out for me free of charge. YOU just need to make sure you get in and see them and get the tests ran and perscriptions in hand before you loose your insurance and I will cross my fingers that this never happens to anyone else! Get in to see the rheumy and gynecologist first and foremost. These two are very important to your health now and in the future and are the two that will charge the most.
Please just take a hot bath with some Epson salt and relax. Tomorrow get up and start all over again. Make calls, write appointments down in your calendar and start making a list of questions and concerns for your doctors. You will get through this and the sun will be back out before you know it :heart:
08-26-2009, 08:17 PM
you constantly amaze me with your knowledge, wisdom, and compassion....thank you for choosing us here at whl.....
08-26-2009, 08:23 PM
OMG Danica! Thank you so much for all the information and advice! I am so sorry for what you are going through. I hope you get a job soon!!! And that maybe you can keep your house.
I will check these websites out for the drugs. Thank you Oluwa for providing these.
And I am going to print out your post so I can remember what I need to do. I am so fatigued right now I could just collapse. I've been working on the computer all day, taking orders. But YES.....I need to quit dragging my feet and get in to see these docs ASAP. What a fool I have been in not getting busy and getting in there while I still have insurance coverage. What am I thinking?? Thanks for gently & patiently guiding me in the right direction!!!
I will call the docs tomorrow. See if I can get in to see the rheumy quickly. I will let you know......thanks again and big hugs to you!!!
08-27-2009, 11:39 AM
Danica...have I hugged you lately? (((((((hugs)))))) You rock!
(((((more hugs))))) to Porchy!
08-27-2009, 03:04 PM
Well, I did it! Rheumy appointment on September 29. That's the earliest I could get in. But I did make the appointment. YAY! I couldn't have done it without you all. Thanks for the support. :yes:
Good for you Porchy, damn good for you! I know seeing a rheumo/dr. again is a huge step for you right now. I'm happy for you. Just take it one appointment at a time.
08-31-2009, 08:32 PM
Please keep us informed. Hopefully, your blood tests will make it very clear to this new rheumy.
Good luck with all of it. I've thought of you a lot lately. We're both so close in age, and from so near the same area, with many similar symptoms. I've kept you in my thoughts while we've been getting ready for our big move.
Keep those appointments coming!
08-31-2009, 10:44 PM
Thank you Marla! I will definitely let you guys know how the appointments go and what they say.
I appreciate your thoughts and concern.
Hope you are doing okay with the weather changes. I am very ready for fall but the changing temps are making the aches & pains worse. Plus I'm stiff as a board right now. I may have to turn on the furnace tonight.....there's an expected low of 46 degrees.
Thanks again for checking in.....have a great day!
09-01-2009, 06:01 AM
Yay, Porchy...September 29....way to go girl....woohoo.
Don't forget the usual list to bring with ya..Questions, symptoms and drug list...
Be strong... don't forget to breathe..
09-01-2009, 06:55 AM
great job porchy,
you have taken such a giant step and you should be very proud of yourself. By the time September 29 gets here, you will have a wealth of information, and you will be able to help the dr. with a diagnosis and possile treatment options.
I am so glad that you have made so many friends here....everyone will stand beside you, and help you to learn how to live with lupus.
When you are making your list of symptoms, remember to think back....lupus is intermittent, and symptoms come and go, and they move from one part of the body to another....so, as you read about others' symptoms, try to remember your past and see if anything seems familiar.
again, congratulations to you....get someone to pat you on your back...
09-01-2009, 08:53 AM
I am really late with this thread but I am sorry to hear how frustrated you have been. It's hard not having a diagnosis. I am glad to see that you are going to the rheumy on Sept 29th!
I have lived with lupus and lupus nephritis for 19 years now. I was diagnosed at the age of 11 and am now 30. I recently have had some really bad times and have had some really down days as many of us around here get. THere are days I wonder if it's worth being around, but then I come to my senses and think it has to get better. My nephritis has flared up and I am spilling a lot of protein. I've recently had DVT's in my leg along with just recently getting shingles. Just when I think I'm starting to get better something crops up. But you gotta fight!
I can't wait to hear how your appointment goes and we are so glad you are apart of our family!
09-01-2009, 11:12 PM
Porchy!!!!!!! You did and I could not be smiling any bigger than I am.......wait I think I cracked my face smiling so big! It takes a lot courage and strength to take a step in a new direction and choose to change your life. You should be very proud of all you have done over the last week. I knew you could do it love......it just takes a little bit of time and patience with yourself!!!!!!!! I think you will not only feel better physically but you will also feel better emotionally. It will be a huge weight lifted off of your shoulders. Remember, there are times of frustration, anger and possibly sadness as you get back in the swing of all of this but we are here for you and just love you! Someone is always here just to lend a should to cry on or a friend to vent too! I am just so proud of you and can not even stop telling you that! Have I told you how proud of you I am?!?!?!?!?! :-)
You are going to come out of this wonderfully because that is the choice you made. I know everyday we are each faced with a decision when our eyes start to open, are we going to have a good day or is it going to be another one of those? Choose to have a good day everyday and remember you can not change those around you but you can always choose to smile at everything and take what everyone says with a grain of salt!
I really do think the world of you and it has been a joy watching you make the best decisions for you and just seeing you being brave is inspirational, keep it up love :heart:
09-02-2009, 11:02 AM
Thank you, thank you.....no applause necessary. LOL
Well, I made the appointments, yes.....now we shall see what happens from here. I feel overwhelmed with how to proceed. I need to see if he has my old records from my old rheumy and my reg. doc. My old rheumy has retired so I wonder how I will get those. I will call the U of I college of medicine and see if they can tell me. Since my old rheumy & this new guy were partners for so long, maybe that will give me some "validaiton" with the new guy.
I got a packet of forms to fill out in the mail yesterday from the new rheumy. They are laying here on my desk. I hate packets of forms. :wacko: LOL
My gyne (sonogram) appointment on the 10th shouldn't be a big deal. Unless my cysts have grown instead of shrunk, like we have been hoping for. We have followed the cysts for 5 or so years, watching them in case they start growing out of control (which would be a sign of cancer)......he kept saying, once you get to menopause I suspect that they will begin shrinking, which will be a very good thing. If they are estrogen-fed, they should be shrinking now, since I'm well into menopause. I will probably get chewed out for not keeping my appointments with him over the past few years. I should have gone, really. That was just plain irresponsible. Will need my pap test also.
Hubby will be going with me to my eye appointment later this month....he's getting his eyes checked too.
I am very tired just thinking of all this......just want to grab my book and lay on the couch. I think there are many factors for this lethargy though.......hypothyroid, menopause, fibro, lupus (?), meds, aging..........there are so many possible reasons for the way I feel. Lupus could be one of many..... I think that's why I feel so overwhelmed, and why I just quit seeking help. Especially when the docs I have seen just sit there looking at my chart, then close it, and walk me to the door. They don't have a clue & I don't have the energy to tell my entire story 1400 more times. ugg.
I will try to keep optimistic. Thanks for the support. xoxo
09-02-2009, 04:36 PM
So sorry I am coming in late on this (have been busier than a one-armed paper hanger lately), but I want to let you know that I understand and support you 150%.
It took me 16 long yearrs to be diagnosed with Lupus. I honestly thought I was nuts...and I'm more than sure I wasn't the only one. I am ashamed to say that I even tried to take my own life out of the insane fear, frustration, and pain. I didn't know where to go or what to do. So many doctors, so many "we don't know" responses, so many medical bills, trips to the hospital, missed parts of my life...it was hell on earth, really...it was.
One day, I just got sick of being sick. I gave life the finger and said, "well, you have me destined for one thing...but I have OTHER PLANS!!" I fought back with every ounce of energy in my body...and as I am sure you know, that is a chore some days...but I did it. I fought and fought and fought...and was finally "awarded" with my diagnosis of Lupus this year. As much as I dislike the disease, it was almost like a badge of vindication to FINALLY get an answer, you know?
Now, don't get me wrong...I don't want to sound like I walk around blowing fairy dust out my tush or anything...Lupus is a crappy disease. It's taken more from me than I honestly care to think about. Some days, I just have to pull the covers over my head and pray. That's all I can do. But other days...when I'm okay, or even partly okay...I give thanks for having another day that I can fight off Lupus and work to keep my body healthy. That's what I live for. Making this vessel as strong as it can be. I've lost 30 pounds since my diagnosis (still have a ways to go, mind you), eat right, quit smoking, don't drink anymore, and exercise every day. It's made a difference. If I'm going to war, I want to be fit for battle, ya know??
Short story long...you can do it. You've made the first steps, and believe it or not...once you get the diagnosis, it is easier to stomach because you AREN'T fighting an invisible enemy anymore. It has a name, a face, a description. All your problems will be explained, and you can start on the road to mending. Know that we ALL know how it feels...how it hurts...but also how we can overcome. YOU CAN DO IT!!!
09-02-2009, 04:53 PM
Delphinia.....You guys really do get it. Thank god. It's such a relief to be understood, to be heard. I remember long ago when I was in my mid 20's and no one understood. The only person in the world that stood by me was my boyfriend and that was 28 years ago. He's still here.....he still loves me and still gets it. He's so kind and caring, which makes me a very lucky person indeed.
And now I have you all.....thank you for being here. It is such a comfort. I wish I would have had this forum....well, heck, just the internet....back in the old days. I really thought I was going to lose my mind. No one to connect with, no one who understood. It was Hell On Earth. At least now I can sit here in my pajamas, no makeup on and hair askew (if it's been one of those days)....and still have a support group I can "go" to.
I'll be taking you guys with me to my appointments..... carrying you in my heart. I'm very grateful.....thank you. :yes:
09-02-2009, 05:46 PM
Forgot to add to that list of possible reasons for my lethargy.....a big one.....SLEEP APNEA. I need to get in for another sleep study and get treated for THAT too. I had a sleep study done years ago and now my apnea is much worse. I never got treated for that then, so I guess I need to add that one to my list.
09-03-2009, 05:24 AM
WOW!!! Porchy im thinking of you and will be with you in spirit at the appointment with all the members here.Just keep strong and know you have us all here waiting to help you through this.Goodluck.
You know Porchy, it sounds an awful lot like you have once again taken control of your healthcare, that's a very good thing. I'm with you on filling out packets of forms, I hate forms and paperwork. Just do one page at a time, no need to do the whole lot in one sitting either. Be prepared for some bureaucracy, some B.S. and maybe a Dr. you don't always like. But stick with it. You'll find some good people, and get into a routine. At the end of the day, you are running the show, and your health is going to benefit from this. I think you've done an outstanding job so far. (cue the applause!)
09-03-2009, 10:12 AM
Thank you Angel, & Rob......all you guys here are the best. I love my big new cheering section. *smile*
I woke up today with lots of anxiety.....hopefully it will pass.
I got most of my forms filled out yesterday.....still have a bit left to do. I had a real sense of peace come over me once I had most of them filled out.
I think I just have so much coming up, I am overwhelmed. But once I can start marking the appointments off, one at a time, I'm sure I will feel better.
I am not feeling very positive about the rheumy appointment, but I will go. Whatever happens, happens. I have a list of symptoms & stuff to take with me, and the forms had a large area to say what I had to say. We'll see what he says.
Thanks again for your support. Each one of you is a gem. I appreciate your time & concern. xoxo
09-04-2009, 11:20 PM
I am so proud of you! Each step is a baby step in the right direction. You are waking up everyday and putting you and your health first. That is the most important factor in the scheme of things. Remember, your hubby will be with you and he will hold your hand through all of this and we will be in your heart while you are at the doctors. You have great support here and we will all be biting our nails waiting for you to tell us how it all went! You will get through this and you will come out the other side of the tunnel healthier and happier. Keep your head up and crawl on that couch with a good book, you deserve a mental rest after all the hard work you have done. I am thinking of you and sending you giant gentle hugs :hug: