Cindy

[Guest guest]

,

Deepest thanks for taking the time and energy to write the highlights of

your interesting saga of frustration and, finally, victory in searching

for a diagnosis. Fortunately or unfortunately, depending on how you look

at it, I can relate all too well. I have several diagnoses right now,

including a few along the lines of your " too much time on your own with

the kids " diagnosis (good thing I never mentioned anything about the

divorce to any of the doctors). I'm glad you sent a " nice letter " to

that idiot.

I'm grateful that you went into such detail because you illustrate very

well how it can sometimes be so difficult to get a firm and correct

diagnosis for a rheumatic disease. This is important reading for me and

the group. You've given me renewed hope that whatever is going on with

me will eventually have a name.

Also, your apology is absolutely unnecessary. Self-doubt and confusion

about what is possible and what is the reality are all a normal part of

the struggle. I'm sorry you had to go through all of that, but I am

happy you finally have a diagnosis, even if it is as serious as RA.

You're right. You've got to take care of yourself. Please do! As much as

I was relieved to hear that you were OK following 9-11, I was a little

worried to hear that you moved - I know that can be really stressful,

especially with three young children.

One last thing: It's not true that your prior posts were nothing that

could have been any help to others. You've gone out of your way to show

me kindness when I needed it. I won't forget that. Thank you.

Take care, , Write anytime you want and need to. Also, I want you

to know that I think of you any time I'm having trouble with my mouth -

often.

[ ] (unknown)

Hi Everyone,

I am writing to tell you all a story of mine and maybe one of you can

relate to this. For the last 6 years, I have been in and out of

doctors offices and the diagnosis's were astonishing. One was too

much time on my own with my then two children. That doctor got

a " nice letter " from me. The next was Lyme and the next was Lyme.

So

I was treated for Lyme, and quite a few months on the AntiBiotic IV.

Still no relief from pain and I was told that Lyme could be residual

and to expect pain in the joints for the rest of life especially with

the changing weather. Well a few years had past with slight or no

pain and I sort of forgot about everything. When my daughter who is

now 3 ½ was born, came another auto-immune disease, Hyperthyroid

which was great at the time for me. I lost 45 lb. when she was 4

weeks old, had all the energy that was humanly possible and life was

grand until I found out that this was a Thyroid problem, but was told

that this could go all away within 6 months. And it did!

In December, 2001 I took a fall on the ice which put my neck in spasm

and brought me into the ER. I went home with Vioxx and took a few

days to get my neck back again. Then one morning it hit, all over

again, the pain in my knees, and almost every joint in body was

screaming in pain. For days, I was in bed and then finally made an

appointment with my regular doctor. She said it was Fibromyalgia and

gave me some antidepressants and said this should work. Two more

doctors and then finally a Rheumatoligist. The Rheumatoligist first

said I had PA and then the sed rate came back and he confirmed RA.

Well after a year on Medrall and MTX, I felt better. I felt so good,

that I spoke to my Rheumy and I told him I did not want to be on the

Prednisone any more. He said I had to be in case I flared again and

this would keep me out of a flare. Well my denial kicked in full

force and I weaned myself off the drugs ( I read almost every article

on the Internet how to wean off this stuff) and I did. Then I sold

my home, bought another last summer and you know all the work

involved with moving and three young kids. I put myself off for

awhile and took care of the kids, the house and everything else, but

me. I said to myself, there is nothing at all wrong with me. Yes,

sometimes I feel pain in my joints, yes, sometimes my knees won't

go

up the stairs, without some pain, but hey, I did a lot of damage to

my knees with a ski accident and even a car accident when I was

younger. That is that pain and I do not have anything else wrong with

me. I stopped seeing my Doctors, because I was tired of all the

different diagnosis's and I was tired of taking those potent toxic

meds. There was nothing wrong me. Boy was I wrong and everyday I

learn more and more about this dreadful disease.

The pain started coming back, nothing too much, but it was there. I

made an appointment with another Rheumatoligist and he did feet and

hand X-rays, did a ton of blood work and spent awhile with me

talking. By the time I left there, I was confirmed again with a

second diagnosis of RA. He said this disease plays it games like this

and makes it hard for your family and friends to believe and it is

even harder sometimes for you to believe. It hit me harder this time

then the first diagnosis because I felt the first doctor could be

wrong. I always had that denial, but after looking at my X-rays and

hearing the words from the second doctor, I do finally believe that

this is what I have. This is good and bad, good so I will take care

of myself now and bad because, well you know why.

It is funny on how denial can be so bad for people and I have learned

another great life lesson.

I am writing to you all and apologizing. I am apologizing for

doubting this disease and not fully accepting the fact that there

really is a disease that can do what it is doing. I wrote to the

board a few times, but nothing that could help others. I hope this

letter touched at least one person. I want to give back what I have

received from you all. I am on the road to fully accepting and now

concentrating on myself, because my family does need me in good

working order and I need myself to get better.

Thank you all for allowing me to grow with all of your words that you

put out here on this great message board.

Your Truly,

from NY