Jeanna

My name is Jeanna, pronounced like Gina. Just like (I'm guessing) all cases of scleroderma/Raynaud's, my case is complicated and always changing. My problem is, even though I tell my doctors I have this disease, they don't make any connections. So, I end up feeling like a complainer and that nobody takes me seriously.

I was informally diagnosed with juvenile arthritis when I was 10, with frequent knee pain and stiffness. From that point, the pain and stiffness moved to every joint in my body. My doctor had said that the best advise he could give me was to remain as active as possible, that if I ever became a "couch potato" I'd end up crippled in no time. I was already into swimming, baseball, soccer... you name it. So, I continued. Of course, this meant injuries to bones and joints for which I wouldn't realize the effects for years.

Looking back on it, I believe I had my first Raynaud's attack at age 17. I woke up one morning to find the middle toe on my left foot was blue, stiff and swollen with a blister that itched and hurt. We lived out in the country in an old house so I thought I'd been bitten by a spider. I soaked in warm salt water and used ointments for allergies and insect bites, but nothing worked until the weather warmed up and it mysteriously disappeared.

This reoccured every winter until I was 24 and I had my son. The pregnancy was awful, despite the fact that I had wanted it more than anything. It didn't help that my husband forced me to leave as soon as we found out about it, but a few months into it, I was told that a blood test indicated my baby would have spina bifida. The doctor explained that sometimes, if there's something wrong with the mother's liver, this test can come back wrong, but that might indicate that the baby would stop growing after the second trimester.

My first detailed sonogram showed my baby to be in the doctor's words, "an exceptionally healthy baby boy!" I, on the other hand, was constantly tired, sick, thirsty, and all of this contributed to my mother calling me a bitchy pregnant woman, which of course, only made it all worse. I continued to throw up every day up to moments before my emergency C-section. The baby was born full term at just over five pounds. Did he stop growing like the doctor had predicted? Was there something wrong with my liver? No answers to that question yet.

Now, 3 of the toes on my left foot were turning blue, swelling, stiffening, and they hurt so bad I could barely walk most of the time. The original blister was now a pocket of fluid and I still thought it was a spider bite, that the poison was moving within my flesh, thus causing the effect to my other toes. At this point, for the first time in my life, I had severely dry skin that was itchy and there was no relief for it. I let it go for another 3 years before the Raynaud's symptoms moved into my right foot.

I didn't have insurance at the time, so I went to an equivelent of a county hospital. The doctor said he thought I had some kind of vascular disease like lupus and that he would take some blood. When I went to the lab with my paperwork, the techs had to make 3 different phone calls to find out what these tests were and how to run them.

Two weeks later, the diagnosis is, quite matter-of-factly, Raynaud's disease with the antibodies for Scleroderma. He said he didn't have any information to give me and didn't know anything about it, and the best source for information would be on the internet. I went home calmly enough, without a clue. The first things I read though included words and phrased like, "rare and incurable, possibly fatal...." The more I read, the more upset I got. I started making connections with my chronic joint pain, fatigue that didn't go away after the baby was born (four years later now, it's still very much a problem), the tough dry skin.

I remembered when I was 10 years old and I had injured myself somehow. Mom had made me hold an ice pack on my leg and within a couple of minutes I was crying from the burning caused by the ice pack. I remembered a friend almost ten years ago who pointed out that the skin on the lower part of my legs was so tight it was shining. I thought about how sick and tired I was throughout my entire pregnancy and that after it was over, I kept expecting to feel better soon, but I never did. I thought about how long ago that blister showed up on my toe and I asked myself, "Why did I just let it go like that? Am I going to lose my toe/toes?" And then, as the tears swelled up in my eyes, "How do I tell my family and friends, and what about my son, who hardly knows his father?"

Since my diagnosis, I have also seen a team of neurologists about fainting episodes that started at age 9 and have become increasingly worse and more frequent in the last 3 years, but there are no answers. I saw a rheumatologist one time who hardly had 10 minutes to spend with me and then told me that if I had this disease as long as I've had these symptoms, I would be dead by now, and then he walked out and I haven't seen him since.

About six months ago, I noticed a fair amount of blood in my urine. I went to the ER that night and waited for ten hours in the air conditioned room with nothing but a gown on and had to scream at some nurses several times to get me a blanket. I left without any answers after cat scan, sonogram, pelvic exam, blood work, UA,... $3000 worth of tests for nothing. Two weeks later, I went through it all again, and repeated the process again and again and again before I was told I have calcium building up in my kidney and, now here's a news flash, I'm depressed!! I took antidepressants (a new one called Lexapro, it did the trick) for about three weeks before I ended up (on New Year's Eve night) in the ER with the worst pain I've ever had all over my right side and still bleeding from my kidney. They admitted me and kept me for four days on pain killers and it turns out I have two large cysts on my right ovary and when it swells it puts pressure on my already bad kidney, and I have another cyst embedded in the muscle of my lower abdomen.

Now, I know it's not realistic to think ALL of these problems are associated with Scleroderma and/or Raynaud's, but how realistic is it to believe that a 27 year old athletically inclined, strong and otherwise healthy woman could have so many different thins go wrong at practically the same time? Can't some of it be related? And if anybody reading this knows any good doctors in the Fort Worth, TX area, will you please send me their numbers? My best wishes and most sincere prayers to all of you and your families,

Jeanna - jntx30@yahoo.com