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tupelohoney
02-20-2013, 08:01 PM
Hi everyone. I'm not very good at this kind of thing. I'm just looking for information; comparing notes. I have been doctoring for almost 3 years now. I have lots of diagnoses, but was sent a year ago to a rheumatologist because of positive ANA and high RNP levels. Apparently, I had been testing high for a year by neurologist and PCP. My PCP told me it would be a good idea to see a rheumatologist for my fibromyalgia. No big deal...ok. When rheumy asked me if I knew why I was there, I felt sick. I had no idea there was a problem with my labs. My numbers have been slowly climbing ever since. Rheumy says we have to wait and see, but I probably have AI disease of the connective tissue starting. Now I have a rash on the back of my neck, I see a dermatologist in March. I take a lot meds for Fibro and severe migraines and colitis along with vitamin deficiencies. I also have sleep apnea and REM sleep behavior disorder. I am so tired all the time. I really do not know how I make it through most days. I work full time and my youngest son has Asperger's Syndrome.

I try not to complain and to be upbeat. No one understands what I live with everyday and my personal and family struggles. I know a dx doesn't change how I feel, but it would be nice to know, be treated, and move forward. This seems like a supportive, close group. I hope to be able to contribute to it as well.

SleepyInSeattle
02-21-2013, 09:04 AM
WELCOME! Yes, this group is very supportive - we know all-too-well how you feel, unfortunately!

Diagnoses take many years for some people, and sometimes change once you have one. I am not convinced that we really even know what these diseases are, anyway, so the labels we put on them are of limited use. I think what's really important is to stay informed, read research, find a good group like this to give you ideas, and work with a good doctor to keep trying treatment strategies until you find something that improves your quality of life. Don't ever give up hope!

Personally, I think that the bad news with A-I disease is that you never know what will work. The good news is ALSO that with A-I disease you never know what will work...so there's always hope. A new drug, a combination of drugs, working with a nutritionist to find an eating strategy that is optimal for your body (especially if you have gut issues), finding an exercise or meditation program that helps you stay fit and relieves stress - all these things can be helpful. You just have to keep looking and find what works for YOU - it's different for everybody, and can take time.

The connection with Asperger's is interesting (though purely theoretical/anecdotal)...if you go to the "search" box on the forums and type in "Asperger's" you will find some threads that discuss this. My closest friend has a teen daughter with Asperger's and wow - it's a challenge! It's tough raising developmentally-typical kids when you're dealing with A-I disease - even more so to raise kids with such particular needs. I know there are some great online groups for that, too...I am sure you have probably found them. I am not much of a computer nut, but these online groups have been a real blessing for me, and I credit them with a lot of my improvement in health.

We're glad you're here (though sorry you have to be)....I hope we can be helpful!

tupelohoney
02-21-2013, 03:41 PM
Thanks for your message. It's good information. I have a hard time putting myself out there and reaching out for support from others. My family doesn't understand and I feel like a hypochondriac. I'm used to being the caretaker. Who is there to take care of me? To support me? Only me. I guess that is why I am here. Everyone here knows what it is like. What do others do to relax and destress and take care of yourselves?

tgal
02-21-2013, 04:42 PM
Hi and welcome to the WHL family. We are really glad that you found us. The people here are on many differe t phases of their journeys. Some have been diagnosed for years. Some are newly diagnosed and other like you are still trying to figure out exactly what is wrong. The one thing we all have in common is that we understand the struggle. You are in the right place.

Feel free to ask any questions that you may have. Please make yourself at home and I look forward to getting to know you.

Leaniebean
02-22-2013, 07:27 PM
You know, there are so many of us on this site that feel the same as you do. Me and a friend had a discussion about me having more kids and he said I sound like a hypochondriac but people who don't walk in our shoes don't understand. That's the downside with having an AI disease, we are sick but others think just because we don't look sick things aren't bad at all. They don't understand the pains and taking medicines with severe side effects... It's rough but atleast there is a site for people to come, vent and support. I feel better when I come to this site. I can talk to people who understand me, lol even my terminology like ANA panel, complement test etc.

SleepyInSeattle
02-22-2013, 08:21 PM
And remember - the "up-side" is that even though we may FEEL like crud, at least we don't have to LOOK like crud... :-p

tupelohoney
02-22-2013, 08:28 PM
And remember - the "up-side" is that even though we may FEEL like crud, at least we don't have to LOOK like crud... :-p

I like that a lot! That is a great way to look at things! :) LOL!

Jwhetzel84
02-22-2013, 08:29 PM
Hello! I am a newbie also and just posted an intro thread. It's funny u say at least we look good haha. The first rheum I saw at UVA med center ( which is supposed to be very good )came in the room after reviewing my thick book of med records my pcp sent over and said wow I wasn't expecting a person who looks like u with this thick of a file. And I also got the "hypochondriac" from friends back in my college days. The why are u sick all the time. People just don't get it.

tupelohoney
02-22-2013, 08:35 PM
You know, there are so many of us on this site that feel the same as you do. Me and a friend had a discussion about me having more kids and he said I sound like a hypochondriac but people who don't walk in our shoes don't understand. That's the downside with having an AI disease, we are sick but others think just because we don't look sick things aren't bad at all. They don't understand the pains and taking medicines with severe side effects... It's rough but atleast there is a site for people to come, vent and support. I feel better when I come to this site. I can talk to people who understand me, lol even my terminology like ANA panel, complement test etc.

I am developing a stellar medical vocabulary and mad web searching skills!

BonusMom
02-22-2013, 09:51 PM
Welcome aboard!