Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
is that how you spell it? anyway ....does anybody get tired of people looking at you like you enjoy these problems? Im ready to crawl under a rock. most of you know my problems with the pneumonia, going to pulmonoligist, cardioligist to make sure I was able to do lung biopsy, heart cath done but it wasent blocked enough for stint. did the lung biopsy any way from a different surgery pulmonoligist., the 2 different pulmonoligists came to visit me in the hospital every day. the surgery pulmon told me" Interstitual lung disease" and the other first pulmon Dr says he wanted to send a piece of the biopsy to Baylor for second oppinion from a proffessor there who knows this disease, (Im in Houston and nobody here knows about this disease?)they say it is rare.,I have an appointment Friday for " Hopefully" the results for sure. okay ..this is where it gets crazy...my family all think that the doctors are passing me around to make money !! and think Im a hypochondriac.Im so confused and frustrated about everything.I dont know anything about this disease (which if anybody knows about this, plz share) I woke up today, with a big knot on my hand on top of purple bruises that looks like they stabbed me a million times with the I Vs.which I remember 5 or 6, includding the ones they went through because my veins move. I admit I do tell my husband alot of my ailments because Im in pain! everybody else asks so they might as well sit down for coffee and stay awhile. Ive been through alot so I guess Ive been a big baby. I know my problems are real and I just want to go back to the normal(whatever normal is)at least know my problems and deal with them.I do not enjoy all this pain, I guess what I really want is acceptance and support to make all this easier. so sorry to unload if you read this book of frustration .believe it or not, I feel better just writting the feelings I have built up.
just dont think too much about it. just relax and follow your instincts. we are so lucky that there are so many doctors and different treatment options are available now than the olden days. doctors are here to help us.
hope you feel better. be positive. be strong.
good luck.
Best wishes for feeling better!
Thewino
I'm going through some problems, too, interstitial granulotamous dermatitis. Not only do all these strange reactions and illnesses (all autoimmune or caused by drugs to treat autoimmune disorders) hurt and make you sick and fatigued, but unless you have an autoimmune disorder, you really cannot understand what we go throughh everyday.
I think from reading your posts that you are handling everything in a positive manner. Keep taking care of yourself.
I'm sending hugs to you and prayers for your speedy recovery.
//Frances
Hang tough. I quit telling folks any details of my woes. For instance you could say, oh, I have a pneumonia that won't quit. Trust me, they would give you all types of advice (don't follow it, haha) and you will have the last laugh. They would be all gettin' you a pillow and stuff! See, they just don't understand complicated stuff, but p-new-monia, well, that's bad for sho.
That's all you are doing, only it ain't cancer.
It's RARE - which means it takes awhile to diagnose, takes some of the top rung doctors, and takes multiple specialists!
Just look what most people go through getting diagnosed with RA...orthopedic docs for pulled muscles, tendons, tears, podiatrists for messed up feet, hand specialists for carpal tunnel and the likes, neurologists for ms type symptoms, and multiple rheumatologists once it's finally on the right track.
Tell your family you love them but they should zip it - and just hug you.
My sister and her husband went to Baylor and are both docs in Temple now. They are part of the Scott and White system - but they still consult with Baylor. You have a great team of docs, especially that they are working so well to get you a proper diagnosis!
PS - I'm not that far away either - I'm north of Fort Worth in Keller.
You know and we know you are far from being a hypochondriac. you are having to deal with serious issues here. That's why this forum is so helpfu7l. Everyone can relate to what you are going through, so vent as much as you need to. It sounds as though your team of doctors are very thorough.
I no longer try to explain RA problems to people unless they are genuinely interested and want to be supportive.
I am very fortunate in that my husband and daughters are all supportive.
I actually said to my GP last week that sometimes I think I'm going crazy. His answer was that he knew everything was really happening because he has known me for about 27 years since our three daughters, now 30+, were all little.
Just hang in there and try not to worry about what other people think. Easier said than done, I know.
Am sending positive vibes your way for Friday's appointment.
Hugs
I have never slappedanyoe in my entire life....his face was totally stunned (from shock, not my deadly blow) I ran off crying and he called in and said he couldn't go in to work that day. So we spent all day discussing it, and then at one point he said something he was clearly repeating about wasting my life doing nothing,,I gaped at him and asked him hy he thought I was taking anti-depressants, anxiety meds and One they said was for hope. I perfectly agreed it was a waste...but did they not hear the "Chronic" part of all my problems? Do they really think I enjoy this? That I'd rather sleep everyafternoon than play with my kids or do something fun?
Anyway, the comments have gotten less and less as time goes on and my arthritis becomes more noticable.
It can take a while before you find a doctor who is understanding - who LISTENS TO YOU rather than simply dismissing symptoms just because they don't conform to the medical book or simply because you are a woman.
May your current team of Drs be successful in treating you. All the best! And know that others do know how you are feeling.
I can truly relate with what you are going through. I dragged my husband to the pulmonologist appointment because he wanted to know what was going on. I guess he thought I was being to evasive with him. He had gone onto the web and started to read about the condition so I guess he was really scared. As a counselor, I realize the different stages of acceptance- denial and anger are two of the most highly charged emotions people experience. It a very natural human reaction. Unfortunately family is not able to regulate their thoughts and feelings and it spills out sometimes in negativity. I heard it too.Your family is trying to sort out their own emotions and accept your condition its hard for them as it is for us who are living with the diagnosis. Honestly I don't know who its harder for me or my family. My pulmonologist indicated that the disease is serious and little by little step by step there is more treatment for it and it means that it must be monitored closely. Between the Rhuemy and pulmonologist I am being seen every two weeks. It's a bit overwhelming but its worth it. When I went to the doctor I don't remember much because I was flooded with all kinds of emotions. So Dr had to write it down for me, I guess taking notes and slowing down the discussion may help. Sending you big hug and a "BIG SMILE". Smile therapy works wonders for everyone...
Question: why, if we talk about our disease, is it whining and complaining? I talk about other things going on in my life... my daughter, my dad, my job, what I'm reading, my pets... and I ask questions of others and listen to them thoughtfully. Why cant I talk about my disease???
Chooselight, the reason people say we are whining and complaining is because they do not understand what we are going through and don't take the time to find out..better sometimes not to say anything and just carry on with our lives the best we can..coming to this board is a hugh help to a lot of us.
Today I got this comment "Have you been drinking" (I was walking funny due to pain).. Nope just the pain making me walk this way... AH complete silence... stops them cold...