Tuesday, September 26, 2006

When I first became sick, and no one knew what was wrong, I used to pore over internet articles and try to figure it out for myself. It's what I do anytime I want to know something--I research. This was a bad idea. A doctor would mention some possible disease, and I would stumble upon all kinds of frightening pictures complete with sad memorial music and angels--websites that are meaningful to their authors but scary. I am 35. I don't plan on packing it in anytime soon. It's bad enough to feel sick and weak, I mean I knew something was amiss, but I was scaring myself even more with things I shouldn't worry about. I promised my husband I would stop my compulsive reading until we had some kind of diagnosis. After six months or so, lo and behold, I had one I could definitely live with-Sjogren's Syndrome. Sjogren's is an automimmune disease that primarily affects the moisture-making glands of the body, so think eye, mouth. But it can be systemic and cause fatigue, arthritis and neuropathy, so think me. For about 3 years now, I have also been getting migraine and cluster headaches. (Sounds like a subscription to some messed up periodical.) There's no sweet, Christian way to describe cluster headaches. I won't even try. But I liken the pain to childbirth, that is, if the child in question was trying to burst forth from my right eye. They don't call them suicide headaches for nothing,dear. And I have a wee benign brain tumor, cystic in nature, that we (my superhero doctors and me) keep tabs on. Tumors can be tricky and all so I bribe mine with promises of free rent in my noggin in exchange for it to stick to its no-growth policy. I like slacker cysts. So I guess that qualifies me to write about living with chronic illness and pain, but by no means makes me a medical expert or authority, just a patient like you. You need to get your own superheroes for that role. And I believe nothing heals like humor, so I'll try to keep whining to a minimum. You don't have to tell me someone else has it worse out there, because believe me, I know, I saw the pictures.

5 comments:

Anonymous said...

I find such joy and peace when I read your words. I am a sjogren sister too. I live in fear of Drs taking away meds that work, or those who won't believe in my symptoms. I test, generally, sero negative on many of the blood tests, but lip biopsy was definitive for me, but just a maybe for my rhuemy.I am about to start with more testing with my nuerologist to help me with treating the nueropathy that the rhuemy does not believe exists in my limbs! by the way I'd like to fire her!!!Take care -you and your kids are beautiful. Joyce in Oregon

sassy said...

yes, i agree... why does it seem the doctors don't believe us? Why would we fake pain? I'm with you on the firing of the Rheumatologist.
I hope you feel better.
-Linda in New York

Lisa Milton said...

Linda and Joyce~

Thank you for stopping by my site. I sometimes feel like I am whiny and that it matters little, this blog, but then I hear from other people suffering. Which makes me feel better. Because I am evil.

No really. I wouldn't wish any of this on anyone, even if it brings me comfort.

So thank you for coming by. Hope you enjoy the holiday...

Anonymous said...

I'm in the beginning stages of "internet research" freak-out! Actually, I was diagnosed with Sjogren's within the past month. I went to the doctor because my right paratoid gland kept hurting and swelling when I would eat. After some tests, I was told something else was amiss... It was very sudden, I'm 30 years old and never imagined I would have to deal with my body changing in this way. It's difficult to think about the future, I keep realizing what I will be missing in the coming years. I have cried about this for the past week or so on and off...when I start crying it's hard to stop mainly because I keep thinking of how I won't be able to cry some day! I like crying. It's therapeutic. Anyway, my doctor prescribed Plaquenil because my symptoms are slight at the moment. If you have any advice/thoughts on this drug, please share I would greatly appreciate it! I'm staying positive and have a wonderful support system. I just want to believe that I can be happy in the future with this disease. Thank you for your writings and for reading mine.

Nina - California, soon to be Wisconsin

Anonymous said...

Lisa, thanks for your words. Keep 'um coming. I was diagnosed almost 2 yrs. ago. Did you see the movie, "Misery"? That is how my feet feel in the morning. I should say ankles, like someone took a baseball bat to them. In the last couple of weeks it landed in my shoulders? Sleeping is tough, never a comfort zone. I have gotten used to the headaches and expect them - would love them to take a vacation and leave me alone, wishful thinking. When a flare appears, I swear I'm getting hugely sick, but the flue-like symptoms only lasts 24 hours. I found that I knew more than my Rheumatologist and more than the eye doctor. It's not fun when the Doctor tells you, "I've seen "worse"- why would he say that? OK< but how does that help me. I'm 50 yrs old, used to be a Triathlete and ran circles around everyone I knew. Now life is much slower. Lori in PA.