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Krissy Jo
Tina's Story
KrissyJo@aol.com
I guess I'll start with the basics first. I am a 34 year old mother of two great kids, Danielle is 10 and Robbie is
9, I am married to a pretty great guy, Bob.
Before I go on with my story, I better explain the name thing. My name is Kristina Jo. I go by Tina in the "real world". When I created my AOL screen name many years ago, long before RA came into my life, I choose Krissy Jo. Little did I know I was about to become involved in the internet world of arthritis in a big way. Talk about an identity crisis! Now on with my story:
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.
When I was a kid, I spent many a Friday
night sleeping over at Grandma's. She had the typical RA deformities,
and they didn't bother me...except for her feet! For some reason I was
terrified of her crooked, deformed feet and toes! I had nightmares about
those ugly feet.
I found out my diagnosis a week before
my scheduled rheumatologist appointment when I snooped into the hospital
computer to find out my bone scan results, I worked in a doctor's office
and had access to these records. I already knew I tested positive for
the rheumatoid factor, the bone scan was just to verify things. The
report said the results were "very abnormal for a person of this
age, indicates a diagnosis of inflammatory arthritis." I called my
mom in tears, "I am going to have Grandma's feet!" My worse
fear was coming true!
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 February of 97 I added MTX to my drug combo. One oral dose, and I didn't keep solid food down for 8 days. Switched to weekly injections, and other than mild nausea, fatigue and hair thinning, I tolerate it well.
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 that 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 wasn't a nurse? I went a little crazy, totally redecorating 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 fulfilled. I was helping people learn about their disease, providing info and a shoulder to cry on when needed. I was helping my self while helping others.
I began to experiment with HTML and created an arthritis information page on my free AOL web space. In a short period of time I had run out of free space. I decided to take the plunge, I resigned my position as a Better Health Host, registered a domain name and in September of 98 created a small commercial website called ArthritisNet. That site started with about 50 pages, but in a few short months it contained over 250 pages of arthritis information and support.
During this time period my RA became very active, plaquenil, prednisone and Methotrexate just weren't keeping it at bay. We added Enbrel to the cocktail in January of 1999. After a 3 month trial period nothing had changed, except my blood pressure which went up, so Enbrel was stopped and azulfadine added.
In late July I received a phone call from an online pal asking me if I might be interested in merging ArthritisNet with another company. I was hesitant but agreed to talk to his friend. That brought Amye Leong into my life. Amye had been hired to start an arthritis information site for a biotechnology company in California. She decided it should be very similar to ArthritisNet.
I realized that Amye was interested in the same thing I was, providing the very best site to empower the arthritis community. We had the same goals and dreams for the site. I agreed to the merger.
On November 12th, ArthritisWebSite was launched and all went well for a couple of months. Early in 2000 I began to feel that my goals for the website were not the same as the management's goals. After much personal debate I resigned my position at AWS.
It didn't take long for the plans to begin in my head for a new site and Arthritis Insight is the end result. It took very little encouragement to get my partners to join me in my dream of another perfect arthritis website. We hope you enjoy the end result as much as we do!
In November 1999 I, along with my rheumatologist, decided that my DMARD combo was not enough. I needed something more to keep the disease under some form of control. After tossing around my options we decided to give the Prosorba Column a shot. I fought long and hard with my insurance company and finally got approval in late December. I had my first treatment on Dec. 21st. The treatments went fairly well until treatment number 10. At this point my veins were so shot, they were unable to get the two IV's needed for each treatment. A line was inserted in my neck, we intended it to stay in place until I finished the treatment series.
But, of course, lady luck strikes again. The line became infected and a four day hospital stay and a couple of weeks of IV antibiotics at home was the result. I had treatment number 11 and 12 via a femoral artery catheter that was inserted before each treatment. At this point in time, I don't know if the treatment works, it can take several weeks after the series completion for the results to be felt. I am waiting, very impatiently, for it to happen!
I am not sure how I would have gotten through this disease without the help of my online support pals. They are there through thick and thin. They know how I feel. I have been lucky enough to meet several of them on 3 occasions. All 3 events were incredible. Meeting these folks face to face is an unforgettable experience. If you ever have the opportunity to do that, don't pass it up.
Like so many of you I walk with a limp, have a prednisone moon face, wear an ankle brace and often wrist splints. But I thank my lucky stars that I
don't yet have Grandma's feet! And I can walk, limp or no limp. I try to focus on the good side of things. It hurts much less to laugh then it does to cry. As my signature line in alt.support.arthritis says: "Keep
Smilin'"!
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