So two weeks ago I made the dreaded trek to my Rheumatologist. I swear, those people always scare the hell out of me. I still don’t understand how they can insist I have disease when only two tests out of literally more than I can count are positive. And the two that have come back positive are not definitive diagnostic tools (for those with autoimmune issues – I have a positive ANA that during my flare was 1:640 and since recovering has stayed constant at 1:320, and a very slightly positive RA Factor of 24).
I have no joint problems. No skin problems other than the Telangiectasias and dry skin, both of which can be attributed to high hormones and/or sun damage. No fatigue No suspect digestive problems other than constipation when I am injecting tons of hormones into my ass or accidentally eat an allergen. I have asthma that my asthma and allergy specialist says is 100% allergy induced. I have allergies to foods and things that grow and have fur but so do lots and lots and lots of normal healthy people. I really have no clinical problems other than infertility (PCOS) and chronic uveitis.
AND I have been told by numerous other doctors that 40% of uveitis patients never develop additional disease.
In my mind all of this means that I do not have lupus or scleroderma or mixed connective tissue disease or vascular disease or blah blah blah (the most recent disease tested for). Also, a pretty significant percentage of the population has a positive ANA and no disease, and chronic uveitis isn’t all that rare. So saying I have “disease” seems so…. overly doom and gloom.
Am I at a higher risk of developing a disease? Sure. Should I be monitored and make sure nothing changes. Sure!
So, dear doctors, how about we exercise a little positive spin and drop the “Your going to die soon” song and dance and lose the “lupus” title until I have enough markers to actually definitively diagnose me? K. Thanks. Bye.
Ok, end of that rant.
So I went to the rheumy two weeks ago since I’m pregnant and gave them the update. I told them about the hematoma and the doctor FREAKED OUT and insisted “It’s the LUPUS!” and ran a zillion new tests. She also thought it was VERY suspicious that my shins have always hurt and then said that perhaps I have Mixed Connective Tissue disease and ran a few tests for that.
“We’ll call you in about two weeks to discuss your results,” she said and then sent a quaking Belle on her way.
For two weeks I have obsessed again about my health, albeit not as badly as the pre-Prozac obsession. (Thank God for Prozac.) Two weeks of worry about tests coming back positive and forcing me to make terrible choices for my baby. Two weeks of pestering the Professor, “Does my skin look ok? Is this a rash? What about this bump in my throat?” Two weeks of stress that the Chicken totally did not need.
This morning the doctor finally called with my results – everything was negative. Nine vials of blood, two weeks of agony and stress and nothing is wrong. Again.
Don’t get me wrong, I’m so happy that my tests keep coming back negative, I just wish the doctors were not so intent on labeling something that is not label-able. I wish they exercised a little self control in the scary words they utter and used the tiniest bit of bed side manner as to keep me from worrying myself gray.
Anyways, so there is my latest Rheumy update. I go back in January for more poking and pestering (sooner if I lose this baby before then). Perhaps I’ll up my Prozac for that visit….