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Hi, it's me KrissyJo, aka Tina, aka KJ.
Here are a couple places you might like
to check out right away:
A place to tell everyone in
alt.support.arthritis a little about
yourself! And tell your arthritis story at Arthritis Insight Member Stories See a newspaper article about yours truly
OK, now to the nitty gritty! Who are you? And
why did you make this page? These are questions you may be asking right
now.
I am a 34 year old wife and mother of two children
ages 11 and 9. I have Rheumatoid Arthritis. I made this page to provide a
spot for my RA chat friends to come to find info, links and some humor.
I was diagnosed with RA in August of 96. It was
not a complete surprise. I had had several "sprains and strains" that had
not healed after traditional treatment in the 6 months prior to diagnosis.
I had developed almost constant fevers and fatigue. I had numerous painful
joints. And my maternal Grandmother had severe RA, also diagnosed in her
early 30's.
I was started on the DMARD Plaquenil right away,
along with NSAIDS. Over the next several months I was on many different NSAIDS,
all had some sort of GI related side effects for me. In Febuary of 97 I added
MTX to my drug combo. One oral dose, and I didnt keep solid food down for
8 days. Switched to weekly injections, and other than mild nausea, fatgiue
and hair thinning, I tolerate them well. Added Enbrel to the mix in January 99,
failed that one too! In December of 1999 I began the Prosorba Column
treatments. I just finished the 12 treatment series and am waiting to see if
they were effective.
In June of 97 my routine blood work showed a drastic
drop in blood count. After some not so pleasant testing it was determined
that my stomach was bleeding. Probably due to all the NSAIDS. Added Prevacid
to my drug list and stopped all NSAIDS. In August I gave in to the pain and
started Prednisone.
All was fairly well until October. My hands had
slowly been getting worse, to the point where the fingers on my right hand
were "triggered" almost continually. An 8 joint synovectomy on Halloween
solved that problem. 56 stitches, 6 weeks of therapy and my hand works
fine!
The pain and fatigue through out the holiday season
forced me to quit my job in late December. A very difficult decision to make.
I had been a nurse for 10+ years, what was I if I wasnt a nurse? I went a
little crazy, totally recdecorating my house. Painting and wallpapering were
defeating the purpose of not working. I finally came to my senses and settled
down. But I still felt empty, useless.
Then came the perfect opportunity for me. BHostMarty
was asking for help. A new co-facilitator was needed for the Better Health
RA chats on AOL. I volunteered. This allowed the nurse in me to be fufilled.
I was helping people learn about their disease, and giving them shoulder
to cry on when needed. I was helping my self while helping others. In September of 1998 I resigned that position and launched my own arthritis webpage, ArthritisNet. It became hugely successful, winning many awards, including the National Cecil Award from the Arthritis Foundation. I was offered an opportunity to merge ArthritisNet with a new site being launched by a Silicon Valley bioinformatics company and I accepted. Unfortunately, that didn't work out so well. But never fear! I am back in business with the newly formed Arthritis Insight.
What is Rheumatoid Arthritis? Good question! I
am going to try to explain it in very basic terms. Rheumatoid arthritis is
an auto immune disease. Our immune systems screw up for some reason and attack
our bodies. The most commonly effected areas are, of course, the joints.
However RA can also effect other things. The heart, lungs and eyes, for instance
can be involved.
Rheumatoid is one of over 170 types of arthritis.
It is commonly referred to as the "crippling" arthritis. It knows no age
barriers, strikes children as well as adults. For some reason it is more
common in females than in males.
Fortunately, with early diagnosis and treatment,
the progression of the disease can be slowed. For this reason, we are seeing
fewer people actually "crippled" from RA.
What causes it? I don't think anyone really knows
for sure just yet. There are many thoughts; infection, genetics, environmental
factors, poor diet and more. I am not a doctor, nor do I play one on the
internet, but I too have my own ideas on the subject.
There are as many thoughts on the right way to
treat it as there are doctors. Many doctors now feel that early treatment
with DMARDS (disease modifying anti rheumatic drugs) is the way to go. And
I agree with this. NSAIDS (non steriodal anti inflammatory drugs) can be used
to treat the pain and the joint swelling, however they do nothing to actually
slow the disease progression. I feel that the sooner one is started on a
DMARD to slow the disease, the better. This may lead to less joint damage
later.
What about all those so called "cures"? HUMPH!
Nothing makes me madder (well, maybe that "minor arthritis pain" commercial)
then someone claiming to cure a disease for which there is no known cure.
They want one thing: our money. Please check with your rheumatologist before
taking any supplement or over the counter treatment. They can interact with
your other meds or they cause the immune system to go into overdrive, bringing
on a flare. Remember, if it sounds to good to be true, then it probably is!
"I was just diagnosed and I am scared". Well,
of course you are! I was terrified! That's normal. But you were told you
have a disease, not given a death sentence. I won't lie to you, life with
RA will not always be fun, or easy. Sometimes it really sucks!!! But with
proper medical care and the right attitude you'll do just fine. You may have
to adapt the way you do things, slow down your life some, and learn how to
do whats really important and let the little stuff slide. Educate yourself
about your disease. Education is your best weapon! Learn all your treatment
options. Read, surf (the web, not the ocean!!!!) and talk to others that
have it.
Support groups are wonderful! If you are lucky
enough to have a local support group, go!!! If not, find one online. Arthritis
Insight has a great support
group with chats held almost every day. I am not sure I would have made
it through that first scary year without the marvelous people I met online!
The usenet newsgroup alt.support.arthritis is also filled with great, caring
people. People who have been where you are now and are more than happy to
answer your questions and listen to your problems. Supportive families are
great, but nothing is better than talking to someone who really understands.
Besides, I really get tired of telling my family how much I hurt, and I am
sure they get tired of hearing it! But other people with RA have a sympathetic
ear. They will listen. I could go on and on. But I will stop now! Probably boring you all to tears!
Arthritis Insight Message Boards
alt.support.arthritis
(usenet newsgroup)
Email me and let me know what you think! Page last updated 4/28/00
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standard disclaimer: all information provided on these pages is meant to be educational, not medical advice and is the opinion solely of the webmistress.
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