what's next? I keep asking myself that. Yes this is OT, sorry. but I didn't see any forum here at bella on this issue, maybe I missed it. anyways, my M.D. suspects that I have Rheumatoid Arthitis, I had to see a specialist today. LOTS of blood drawn, full x-rays. I won't know anything until I go back in two weeks. waiting is TORTURE! she (the rheumatologist) gave me a shot of steroids, and some pain meds so I don't have to take so many ibuprofen each day. does any body in this forum have RA? if so, one question...how in the world do you live with the pain? any tips/tricks/advice? Dr. wouldn't be specific with me until tests come back. said could be Lupus, Fibromialgia, or several other things that mimick RA, but the blood test would tell. anybody help?

Oh Butterfly, Let me see if I can find a forum here for you. I'm sure we have one. I have calcium chips in my joints so I get my share of pain, I can totally sympathize with you.

butterfly i am so sorry to hear that. am not sure if there is anyone here who has that, but i live in severe pain everyday. i was in a car accident in 2000, and was severly injured. spine colapsed 2 times and have had 2 surgerier to try and fix it, but the damage is permanent. i deal with my pain, day to day, try not to over think about it, and stay focused on whats so important in my life, and then am thankful that while i have pain, i survived the accident. i also take pain meds and people think that if you do that you must be a addict. believe me i have heard it all, and ya know what i say to them, until you have lived in my place, walked in my shoes, then don't even compare me to anyone. girl i pray that things will get better for you. please let me know what they find and if i can help you in anyway. pain doesn't have to control your life. try not to get stressed, and just live each day as i comes HUGS vicki

Oh my dear One, <img src="/images/graemlins/heart.gif" alt="" />
Now we and you can understand why things seem to have gone so off base for you lately.
Our health does play such an important part in the way we react and how others react to us.
I trust that a healing miracle in all areas of your life is in the next step of your life.
Enough is Enough ! Amen.
Rise above it > <img src="/images/graemlins/beamedup.gif" alt="" /> ( you know what I mean !

i'm now taking...hang on i gotta get them out of my purse...ok, its called "mobic" (meloxicam). i've heard from others that it might up set my tummy, but so far so good. i had originally dedcided not to say anything, but i figure the more information i can gleen from others the better off i am. the visit today was short, just labs and xrays. she did say that she was saving the smoking/diet lecture for next time. yes! its true its true, i'm a smoker. die hard even. i've been smoking since i was 14 years old. i've never even tried to quit, although several years ago, i weaned myself down to an ultra light. i don't consider myself a "heavy" smoker, though some might, at 1/2 a pack a day. i know its nasty and totally out of fashion now, but it's an addiction, what can i say. but i'll tell ya, if the prices of them don't put an end to my affair with the wretched things, this probably will. i'm not sure how much longer i can afford smokes AND gas. and although 4 years ago, i went on a diet and lost 42 pounds, it's a moot point now because i've gained about 35 of it back. <img src="/images/graemlins/frown.gif" alt="" />
point being i guess is i know i have some mountains to climb, but with friends like you guys, i know i have a place to come and be me, and talk crochet (even on those days when the pain prevents me from enjoying my passion). and if somebody reads this and can relate (Merwyn, God bless your heart!) and we can connect and share stuff and learn, then i guess that's best of all.
i didn't ask the dr. but i did read on the net that stess agravates it, which might explain why i woke up the morning after my hubby moved out (the day before valentines day), i woke up at 4:30am, in severe pain down my left arm, and couldn't lift it, and i have hurt somewhere on my body ever since. however, it's not new. i've explained a lot of stuff away as "i slept wrong on it..", over the last year or so, that i'm now thinking may have been this whatever it is, coming on. and the stress of seperation and all that stuff, accelerated it. i'm not positive, i'm just thinking a lot of stuff, you know? through all this, the Lord still sees fit to bless me, and even though i'm "aflicted" (hehehe), He saw fit to place me with a prayer-partner months ago, who has RA. can you imagine? i told her today, she and i are truly 'sisters-in-misery'...we had a great laugh. not only does she pray for me, but she feels my pain...that sounds cliche', i know. anyways, my chatter box is stuck, sorry. i've been sitting on this for weeks, it feels good to talk.
Merwyn, again, God bless you girl! you're a greater woman than i. i pray you have pain-free days ahead. and if we must live with a certain amount of pain, then may He give us the strength to indure, and plenty of prescriptions!!!
God bless the doctors. ok, i'll shut up now.
m

I'm going to give you some unsolicited advice. LOL.

I have ankylosing spondylitis. It's considered a type of severe arthritis. It's been a nightmare since I was 19, yes 19. My mom has it too. And we think my grandmother as well. I've been in and out of doc offices, been tested many times, several MRI's, X-Rays, weird tests where they stick needles in your skin and shock you, etc..blood tests...icky! At one point they thought they knew what the problem is, but never really put their finger on it.

10 years later, yes 10, I'm now 29 and I have to tell people I have a degenerative kind of arthritis which is shrinking my back like a prune. LOL. But at least I can say I know what I have, unlike when I was 19 and suffering in college.

My point. Take it one day at a time. Don't rush to take med's that are mind-numbing. Make an informed decision to take those drugs, or not. I chose NOT. They wanted to put me on that Embrol. It killed 6 people in clinical trials, and gave many other that they called "complications." I don't call T.B. and cancer "complications." LOL.

All said, I take 3 Ibuprofins before bed and when I get up, only on days when I don't feel good. It's a theraputic dose and completly safe (ask you doc). I use a MOIST heat pad to help relieve the pain. It truly helps. If you're interested, you can get one on Ebay. Buy the kind that chiropractors use. It's great. You pop it in the microwave for 2 minutes and plop it on your sore spot. It has been a lifesaver for me, especially those nights where I can feel the pain coming on. It's helped ward it off.

So, don't fret. I'm sure there's a Board out there just for R.A. as there are several for A.S., and it's not as common as R.A. If I come across one, I'll let you know.

Amie

P.S. If you want to quit smoking, come to NJ. I think cig's are like $5.25 minimum for a pack.

Butterfly, please try to quit (I am an X-smoker) I know you don't want to hear this but smoking can make your condition worse, way worse. Just so you know, I had to quit about 5 or more (lost count) times before I finally beat it. I could tell you stories about it that would totally make you look at me in a WHOLE different light. I tried everything, gum, patch, watching the what it does to your body movies, read books, joined the quitting groups etc etc. What finally did it for me was I just got so darned mad because I was letting the smoking win me. Once I started to think that way, it became a sort of competition and I WON. It does take work and you can certainly talk to me about it any time you want to. It would just make me totally sick when people would say to me "well I just decided one day to quit and I did" (yes I would be thinking BIG @#$%(*& Deal!!) That did not happen to me. Ok I want you to stop right now thinking about what is WRONG and start thinking about what is right. Even if it means things like:
1. I woke up this morning breathing
2. I have a car
3. I have a job
4. I have food
You get the idea and if you have a day when you can't think of anything good, let us know, we will help you <img src="/images/graemlins/smile.gif" alt="" />

I just cried when i read these posts. my life resembles a crime scene photo right now, you guys and my crochet are the only things that seem to be "right" at the moment. I love you all dearly, and truly appreciate what you've shared. i'll keep you posted.

Butterfly,
Just read your post. I have RA, since 1969. At various times the diagnosis changed to 'borderline' meaning it was like RA and lupus. Since medication was very destructive if taken over too many years (I was 21), I chose a regimen of aspirin, which unlike ibuprofin, has a long term healing effect. There were times when I took as many as 20 a day (I now rarely take anything but an occasional baby aspirin). I also chose to exercise through my pain. I have many memories of hiking in the foothills for hours with tears streaming down my face. Or swimming at midnight so people would not have to hear me cry out in pain. I went to an MD who was also a homeopathist where immune sytem issues can sometimes be addressed quite successfully. With the advances in knowledge about this spectrum of autoimmune disease, it is now pretty certain that my RA has as a root cause an immune reaction to strep bacteria (high levels of strep antibodies are always in my system; I had rheumatic fever). Somehow I was able to get my form of RA under control and I have not developed any bone deformities. The 'infection' is at a low level with few flair ups. In fact I attribute crochet as the reason why my hands have stayed relatively flexible. I also have learned to use various mind control techniques for pain management. The only problem I have had is that I sometimes don't know when something else is the matter because I have walled off the consciousness of my pain. By being able to stay away from pharmaceuticals I have avoided all those side effects which sometimes overwhelm the initial disease. This has been a major advantage for me; I only had to fight one problem.

Through this all I have been a smoker. I have a history like Eva except I have not yet succeeded. I have also had a very stress filled life and have not seemed to manage to keep living in the world and avoid stress. Still, I believe that some people I know with RA are suffering from tremendous unexpressed grief and I often wonder if that isn't the precipitating cause for them.

The most important advice I ever received was from the head of the rheumatology clinic at the University of Chicago Hospital-Billings. He was the one who made the initial diagnosis. He told me there was really very little the medical profession knew about the autoimmune diseases and so they were just treating the symtoms. That is more or less still true today. He said as long as science did not know the cause, I was free to adopt all kinds of coping strategies based on keeping in close touch with myself, my sense of the disorder. He encouraged me to take as little medication as possible and to stop listening when anyone, a doctor or a civilian, tried to put my treatmment in a straight jacket based on hard and fast treatment regimens. It was quite a gift, that point of view. At least I have not spent my life as a indentured servant to the medical profession.

I know how frightening this diagnosis can be. So many people don't really understand unrelenting pain, especially doctors. It is a lonely place to occupy. But there is a real basis for hope of relief and of living with or through this disorder.

If you want to chat you can email me privately. My thoughts are with you at this time.

Crescent_Moon

I got the test results today. I have RA. I have to go back in two weeks and sit for three hours with an I.V., i'll be doing that once a month for a while, then she said she was going to switch me to the shots. and i'll have to give myself a shot once a week.

Oh Butterfly, what can I do to help ?

You're so very sweet, all of you! I'm doing great actually. I'm still smiling. I'm pretty strong, i'll continue to do what is necessary. My attitude is up, things with hubby are turning around. i have too much to be happy about to get down, i sappose. i WILL NOT let this get the best of me. i will do what the doctor says, i will follow her advice to the letter, get my treatments, and keep a good attitude. i'm taking courage in the fact that lots and lots of people live normal lives with this. and i am determined to do the same. i will not let this have me.
i'm so thankful that i have you guys! you've NO idea what you mean to me. **kiss kiss**

Great attitude. You can live a very normal life. Just make up your mind that you are in charge.

Crescent_Moon

Butterfly, I am so glad. Now about that Husband situation I know you didn't ask me but here is my opinion: "don't let all that training go to waste" hehehehehe. Meaning you probably almost got him trained ok all kidding aside and on a more serious note, I am really happy to hear that.

well..its sad i had to "rock his world" to get his attention (by putting him out of the house), but it seems to be working. he knows i'm serious, and seems to be taking steps to correct his destructive behavior. we're still living apart, and will remain apart for some time. until, that is, i feel that we are ready, and i'm satisfied that necessary changes are in place. he's going to church with me now (which he's never done before), he's working too. some have said "he's doing that just to get back in your good graces, and it will change if you let him come home." could be true....that's why he's not home now. and will not come home until i'm ready, and i think he's capable of living up to his responsibilities. we're still in counseling, and that is going well. all is well.

Well Butterfly, I'm going to think very positively and continue to think that he certainly knows what he stands to loose. You are a sweet, loving, person and just remember no matter what you decide to do I'm behind you 100% <img src="/images/graemlins/smile.gif" alt="" />

Good for you! I think you are taking the correct steps and being very wise.
Best wishes,
Grace

hi butterfly..i have been reading some of your posts and i have to tell you that you are helping me along the way with your afflictment of ra...my daughter also has just been diagnosed with the same and has just found out she is pregnant besides...i am so happy to hear your husband is reaching out to you to be there for you as this is so important....

Hello Butterfly,
Stay strong, you have a great attitude. My husband and I quit smoking together last October. It was extremely hard. But we were determined. Problem is we both "enjoyed" smoking. But we did succeed. I made a deal that if I quit smoking I would find something else to do with my hands and money! Guess what I chose...Crochet! I am still learning and finding all kinds of great patterns no where near what you guys are doing..but I love it. I will say a prayer for you and your husband. God Bless and keep your wonderful attitude!

Thanks a lot for the kind words! they mean loads at times like this.

It's a quarter of 3:00am, as you can see. after i took the second round of mexotrexate last week, i've been virtually pain free. that stuff is a miricle drug! but alas, the stretch of good days must come to an end. that and the drug is wearing off, and i guess my body is telling me its time for a dose. but since i have my first remicade infusion today, i think i'll wait and ask the dr. if i should still take it today or wait till tomorrow.
i'm reallllly nervous about the remicade. i've read good and bad. maybe i shouldn't have. i'm glad i took the whole day off for it. i'm sapposed to get a big push of benedryl before the meds, appearantly thats pretty standard. so i'll be like a sheet in the wind when i come out of there. i was gonna go it alone today, but after learning that, i decided maybe i should take some one to drive me home. the hospital is about 40 miles from here, thought it might not be safe. my left shoulder is killing me, woke me up, and i have to prop it up to type. i say that not for sympathy, but because its probably danged funny to see. like the time i missed the bed coming back from a late night break. i hurt myself, yeah...but the mental picture i got of me falling head first into the shoe rack in pitch dark was too much.
i'm wondering if i should take my crochet...ever try to crochet when you're strung out on benedryl? i have... <img src="/images/graemlins/smile.gif" alt="" /> ...lol
i'll leave it right there. by the time you guys read this, i'll be hooked up. send up a quickie for me.

I have a friend with RA and I've been reading about it. There is quite a bit of anecdotal evidence that Vitamin C, vitamin D and Vitamin E might help symptoms. For Vitamin C, the recommendation is usually for at least 2 grams per day. And, Flaxseed, GLA and Omega 3 fatty acids help, too. Also, yes, exercise is a must. She has pain in her feet, so is going to try an exercise bike which might be easier than putting weight on them right now. She has been on so many medicines for over a year now just to enable her to function (she has a rapid-progressing type and faces a real danger of serious damage, so they are being aggressive.) My thoughts & prayers with all of you suffering the same.

Oh Butterfly, here is a big hug for you () You have a good attitude about it and that right there can help you get better quickly <img src="/images/graemlins/smile.gif" alt="" /> Hope it goes well.

Eva

I'm back...everything went very well. except that she had to stick me 3 times before she could get a good vein. argh!!! its a nice place really. room full of lazy-boys and every recliner has it's own i.v. pole. there was t.v., blankets, pillows, stuff to read, there were about 8 of us in the room. i'm waaaay tired, but no nausia. <img src="/images/graemlins/smile.gif" alt="" />
took about 3 hours to drain the bag, and i was on my way. bad part is that since my "good vein" is in the crook of my arm, and i cant bend it or the drip will stop dripping, means that i cant crochet when i go over there. bummer.
i have to go back in 3 weeks for another fix.

Well Butterfly,
You let those "Fixes " get you well.
Hey , 8 in the room > I guess you shared many pattern ideas.
So , what is new on your list to make. ���
If I know you , a new ( your own )crochet pillow cover for the 3 hour wait, will be on the pillow on your Chair.
Make a Butterfly ( the pattern I sent to you) and have it on the Pillow.
Make your treatment , real personal. <img src="/images/graemlins/grin.gif" alt="" />
Get well my Dear friend. <img src="/images/graemlins/heart.gif" alt="" />
God bless you through this time.

<img src="/images/graemlins/smile.gif" alt="" /> you know me so well.... <img src="/images/graemlins/smile.gif" alt="" />
Actually, I pulled out an afghan that i designed last year and had nearly finished. I put it away because i found out that RH teal had been discontinued and i still needed a couple of skeins to do with the afghan what i had planned. Well, i pulled it out yesterday to start froggin it, was gonna make me something else. I spread it out and decided, "Hey! i can just finish the boarder in black, and it will be plenty big enough to be my "comfortghan" to take with me every time i go." it was pretty chilly in there. so i didnt frog it, and i pulled out an old crochet book, and found a nice old edging pattern to put on it. as for a pillow, i'm buying myself that new neck pillow i saw at walmart the other day. it feels like it has those fancy japanees seeds in them like those others i've seen. they have them in hot pink !!!!! i'll post a pic when its finished.
m