I Have What??
I have been writing about my life with Sjogren’s Syndrome for around six months now. I write what I feel at the time I sit at the computer, so anything goes. But I have never really addressed the very start of my journey. Not when it happened, you all know it was 4 months after having my second child. That was the official diagnosis anyway. No, I am talking about that actual day and what that led to.
First let me say that I was lucky. My Primary Care doc listened to me and did the right blood tests right away. For most, especially with Sjogren’s, it can take 5 years or more to be correctly diagnosed. Mine came after four months (and eleven tubes of blood) so I was able to get started with treatment right away. Which is important because AI diseases are degenerative in nature. They get worse over time.
So, what actually happens when someone gets diagnosed with an autoimmune disease? Well, I remember being in the Rheumatologist’s office that day and I remember that my husband was with me. I remember thinking that my Primary doc didn’t think much was really wrong. But the rheumatologist came in and smashed that idea to bits. “Sjogren’s. You have Sjogren’s Syndrome in its primary form.” It was the only AI disease I tested positive for and I had no clue what it was.
That becomes the exact moment when your life changes forever. It doesn’t matter if you’ve heard of the disease you test for or not. You are toast. You now have a “pre-diagnosis” and a “post-diagnosis” life. You’re life may not change quickly, but it will change. And here’s how:
First you will be given printouts explaining what your disease is, or more accurately, what it does. As much as the doctors understand it does anyway. Since that day, I have developed more of an understanding of my Sjogren’s than any doctor I see. And I see seven of them.
Next comes the treatment plan. This is usually different for everyone, though I firmly believe it should be more standardized. I was given a mega-dose shot of prednisone (which caused huge hives) and a prescription for Plaquenil-an antimalarial drug that modifies the immune system and reduces flare ups and swelling caused by the disease. It is a common starter drug for AI. You see, AI diseases are incurable, so they are treated by symptom. As patients, we can be given pain meds, anti inflammatories, disease modifiers, anti depressants, sleep meds, muscle relaxers, heart meds, kidney meds, water pills… whatever is needed to counter the effects of our disease and help the part of the body it may be attacking. We become walking pharmacies. Or chemical cocktails ready to burst into flames. I’m not really sure any more. So at first I was only on Plaquenil but I now take eight daily medications with the hopes that I will be discontinuing two soon.
But even with all medications doled out, there is one thing that seems to be left unaddressed by modern docs when an initial diagnosis is made. That is the sudden hole left in the pit of your stomach upon hearing that word. For me, that word was “Sjogren’s”. All of a sudden I was not me anymore. I was not mom. I was not wife. I was sick. And my future was suddenly uncertain. My rheumatologist at the time said something very unprofessional like “If I had to choose a disease to have, I’d pick that one” and I distinctly remember thinking-you don’t have to and I can’t. And that was it. My brain left the building.
I walked out of the office that day a different person. One dependent on medications to live a normal life, to sleep, or just to be able to move and go to work. I came to accept my diagnosis for the most part. I still have a good, tearless cry every now and then though. And I still take medicine for symptoms hoping someday, I’ll get to take a cure instead.
I am still sick. I am much worse than I was 20 years ago. But now I view it as just another part of who I am. I reclaimed motherhood, wifehood, and employeehood. But I again had to turn over employeehood to this disease that just won’t give up. But I won’t either. I never expected I would. Even before I ever heard the word that changed my life so profoundly that day in that exam room.
“Sjogren’s. You have Sjogren’s Syndrome in its primary form.”
Well Sjogren’s, I’m still standing. How bout you?...