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Jann
10-20-2006, 10:01 AM
HI!!

My name is Jann and I live in southern NJ (outside of Philadelphia).

I was first diagnosed with RA ( well I diagnosed myself and almost failed a class) in 1975. That long. I am a hematologist in my first lifetime and when going though the classes my sed rate (ESR) was always through the roof and my screening and FANA for RA were always positive. The instructors could not understand how I was messing up such simple tests, and finally had the entire class test my blood.. BINGO. RA!!! Finally a reason for some off symptoms I was blaming on the environment (I was in the military). This also brought some earlier symptoms to light from my teen years.

Fast forward:

Then in 1982 my VD screens started coming up positive. and I knew something else was wrong. Seems the RPR, quicky screening, is affected by autoimmune diseases, such as RA etc.

(I then left the lab world- OSHA turned the field around, no more fun) and went into Healthcare Administration.)

My physicians were treating me and telling me to take Aleve type OTC meds for the discomfor, and Celebrex for painful espsodes. I think they also thought I was too young for this sort of complaint

I thought I was becoming lazy without the stamina to do most everyday things, (still hate cleaning though)

FAST FORWARD


In the late 90's I finally took control. I had a few surgeries for scraping osteoarthritis and the surgeon who did my knee scope told me my weight was the problem with repeated complaints, after. I asked him if the RA or OA has anything to do with it. The idiot tells me i do not have RA, he never read my chart ( plus I worked for him part time!). He sent me to a Rheumatologist I fell in love with ( just kidding but you know what I mean)

The new doctor took enough blood from me to fill a bathtub and sent most of it to a lab in California( forget the name of it). They did tons of tests(and me, having been in the field never herd of) and I started researching everything I could.

That day the light bulb went on and I decided I can start living MY life was when I was diagnosed with SLE. Most people feel it is the beginning of the end, but I am a little backwards. Finally a doctor, and findings that proved, to me, I am not lazy, the discomfort and sometimes pain was okay to feel, and I can adjust to live as I wanted to. I was put on Plaquinil (800 mg/day to start), Celebrex ( between 400 -800 mg day) as well as HCT (water pills).

What a difference. Finally I was able to smile, and know I was not nuts and going to be feeling better. The attitude change was noticed by those around me as well as the physical ones to me. I was able to walk longer distances, sit and dance ( my favorite activity).

About 3 months after this revolution I was experiencing pain in a knee which had arthro surgery for a tear and cleaning out the arthritis. The surgeon (see above comments about him) told me it was my weight and walked away . I went to a new Doc ( new MRI in hand) and he told me it was not the arthritis but the lupus which was affecting my knee. The cartilege was almost gone. Two weeks later I had my new knee.

This was the best thing I could have. I now dance the night away ( spending the next day home, almost bed ridden-- but it is my choice) I walked flea markets, can do almost everything I want to

The flare ups are there. If I feel it coming on I go for a Sed Rate. Easiest test for me to be able to tell if a flare up is there or coming, and i can adjust my meds accordingly.

HINT: If you go for a SED RATE (aka ESR) do NOT go to a lab drawing station (where they ship it out for testing) go to a hospital-------- This is one test that cannot sit or else you would get the wrong results. The test is easy to describe-- they suction up your blood into a glass straw with measurements. They wait for the cells to start to separate ( cells-serum) and after an hour VOILA your result!!! ( the line where the separation is) If the blood sits for a long time, awaiting processing the cells start to break down. People think if they go to the lab the same time every time for the test and it is sent out things will be fine, but who knows how long the tube sites the cells wait and what time the test is set up, most big labs wait or do them on 3rd shift, even stats do not get done immediately, they have to be transported, then processed before they hit the tech who might or might not set it up immediately-- you still lost over a few hours in testing)

FAST FORWARD

I am now reside in another area of NJ and had to change rheumatologists. I found a small group I adore and they know me. Meds have changed a bit plus I have some cardio problems i never had-------- High Blood Pressure and some abnormal rhythms, which may or may not be related ( strong family history), meds for this as well, and lipomas (under the skin benign tumors) which may or may not be related but at this point I am not really concerned just keeping eye on them. Cut back on the Plaquinil to 400 mg a day and went to MOBIC (love it) form Celebrex ( after 10 years I figured due for a change). I also take steroids for the lipomas if they flare up and if the arthritis/lupus shows their nasty mood swings.

I do get frustrated after a fun night out (still dancing) but know it is my choice.

Some friends think I party all weekend, while those who do know me understand I am simply sleeping and staying in bed, the life of what they consider luxury), Sun is my enemy (an hour of walking mid morning or late afternoon lays me up for a day at least) and adjustments are made for that as well.

One idiot physican mentioned wheelchair by the time I am 60--- HECK NO

Well, this is who I am and glad to be here.

Jann

MARYCAIN
10-20-2006, 10:18 AM
Glad you are here. I hope you find this forum as warm and welcoming as I have. I hope you'll be willing to share your expertise about blood tests, for obvious reasons, it's an issue that comes up a lot. I know there are some other members of the forum from the New Jersey area - I'm sure they will be popping in soon to welcome you.