Courttneey

[Guest guest]

Welcome Court! You will find similar stories in this group

unfortunately. Good job on your research that lead to your

diagnosis. I wish I had had that much sense but I started having

symptoms when I was 19 and was not diagnosed until I was 42. My

wonderful primary care doctor figured it out. I was glad he was on

the ball. I am blessed in that sense (and many other I am

discovering). This disease teaches you to look at things

differently. I now see someone in the supermarket who looks

miserable and I think that maybe they are just having a " moment "

rather than what I used to think. I used to assume right away that

they were just miserable humans all around. I don't go by first

impressions so much anymore. I suppose this disease has given me

compassion and understanding for a group of people that I was too

busy to notice most days. I have one child who has special needs and

I am 45 now....3 and a half years into my diagnosis. I'm a single

Mom. I have had my 5th Enbrel injection after months of walking like

an old man and constant pain. Last week I began walking upright. I

have a spring in my step again. It is hard to get used to sometimes!

I walk along and think to myself how amazing it is to walk. PA has

also made me a better Mom to my daughter in some respects as now I

understand what it'd like to have to mold your life around a disease

or disorder and I can relate in that way to her. I have many little

tricks I use to help me get through....sometimes I give myself SEVEN

MINUTES OF PITY. That's when I put the timer on and rant and rave

and cry for seven minutes. That's about all I can stand and then I

feel better. Mostly I am learning to be thankful for things that I

never noticed before. So I try finding 5 things I am thankful for

before the 7 Minutes thing. If you have children, the 5 things can

teach you much about what your kid thinks is important. It can get

quite funny sometimes....and touching too. That's me now and how I

cope now...my medical history goes like this: I was hospitalized

when I was 19 for sudden hip immobility and pain...overnight. They

kept me there for 2 weeks and sent me home after corisone injections

with a cane and basically said as you put it " good luck, this

sucks " lol. I decided to prove to myself that I was not going to be

in a wheelchair by the time I was 40 by running 5 miles a day. The

doctors did not send me home with a diagnosis even though I could

barely walk and had no whites to my eyes...completely red and

inflamed to the point that I could not open them in the morning

without a wet rag to disolve the crust that sealed them shut. Nasty.

I looked like a horror movie. Also, my hands were covered in

psoriasis. All of the clues were there presenting themselves in

living color but it was 1981 in Tennessee so nobody " got " it. I'm in

upstate NY now...all Yankee-fied up. I went on through the years

with bouts here and there....nothing that stopped me from working

and nothing that made me limp. Most doctors just smiled and thought

I was being a typical woman with my aches and pains and complaints.

Finally in 1998 I was diagnosed with a heriditary iron disorder that

COULD cause joint pain so I breathed a sigh of relief (at least it's

NOT arthritis) and got my treatment and went on with my

life....married a golf instructor, had a beautiful daughter who has

Aspergers Syndrome (high functioning autism), Obsessive Compulsive

Disorder and Mood Disorder, moved to NY, divorced 6 yrs ago and now

here I am. Three years ago, my primary care guy noticed the little

hint of psoriasis on my hands when I went to him with great

stiffness and pain in them....the worse I'd had to date. He sent me

to a great Rheumy and she diagnosed me and put me on Plaquinel which

worked for year and a half. Last year I had as many days that I

could barely walk as good days but when I saw my Rheumy, it was on

good days so I told her I was " doing ok " . (I think they call it

denial) I have learned to tell the truth and not accept my pain as

something I'll just have to live with. Now I vow to always keep

trying and let her know what's REALLY going on so she can help me

have a better quality of life. This spring when it got so bad that I

could no longer hide it I got Medicaid and started on the Enbrel and

life is better now....still some aches and pains everyday but

getting better. The folks on this site will help you learn more

and you'll feel that you are not alone with this if you read the

posts when you can. Some won't apply to you. But if you are like me,

sometimes you will discover more pieces of the puzzle here. These

guys tend to encourage, educate and console and sometimes chuckle

(the best medicine) so it's a good place to be. Continued success

with your journey and welcome to the group! -Betz