Mamama


A couple of weeks ago, I had to see my rheumatologist. I was past due for my annual visit where he would normally tell me how I was a waste of time for him. He didn’t say that this time. Instead, he was focused on my lab results from last year.  These were results that had “positive”1 results for scleroderma-70, ANA, and SSA-Ro, or as the rheumatologist called them, “the lupus test.” No, I don’t have lupus…yet. He said I may never develop it or several other autoimmune diseases. He did say that I definitely have Sjögren’s syndrome. It’s not the first time he has said that, but it has been a while since he last diagnosed me with that.  Part of me knows not to trust that that’s the diagnosis, since he’s changed his mind before, but it’s still kinda scary. When you’re the grandchild of someone who died from complications of a disease, it’s hard to deal with getting that diagnosis. Mamama had 2 children, 3 grandchildren, and 4 great grandchildren, but I’m the one who drew the short straw in getting this problem. I want to ask why, and I want to scream and say it isn’t fair, but I don’t want another relative to have it. I don’t want them to suffer, but I feel selfish because I don’t want to have it either.  I want to cry.  I want to scream.  I want to know why I’m the one who gets the potentially fatal diseases.  Does being angry & sad make me a bad person? Does it mean I’m too whiny? Do I have a right to be upset? Any result that indicates someone could have a life-threatening or life-changing disease should not be considered positive. ↩

Eyes So Dry   Recently updated!


These pictures start in the late part of 1984 and go into 1985. They will include my first trip to see my dad’s first cousin Teresa, one of the few gingers in the family and one of the first gingers I ever met, in Atlanta, my first Christmas, and my first birthday.

Our Brown and Gold Album (Baby Pictures)






Well, I never mentioned how the rheumatologist appointment went. I guess that’s because it happened almost exactly as I a predicted. It was bad. How bad was it? It was so bad that I wish I could time travel to the past and let Rodney Dangerfield use it as material for some of his “How bad was it?/It was so bad” jokes. Everything was fine until the doctor came in. He half-listened to my complaint, said that anhidrosis isn’t a symptom of anything he treats, and told me that all that he ever saw me for was “loose joints” and pain. I told him that the family doctor said she thought my “loose joints” and lack of sweat were related. He said no. I said she thought he should treat it because he treats connective tissue disease. He went into a long rambling session about how my family doctor meant that he treats autoimmune diseases and that “loose joints” aren’t really a connective tissue disease because they don’t involve the immune system. He said that “loose joints” are a collagen issue and that they only cause problems in the joints themselves. I tried correcting him on his ignorance, but when I did, he repeated his rambling.  My mom asked if it could be from the Sjögren’s/UCTD. He said it was possible, but that those were connective tissue diseases & I didn’t have connective tissue diseases. She mentioned Mamama had Sjögren’s and he said it was possible that I inherited it from her. That “Sjögren’s is genetic” part of his ramblings was almost verbatim from the ramblings he made that time seven years ago when I tested “positive” for the antibodies related to Sjögren’s. He looked in my mouth and said it was dry. He asked about my eyes & I told him that the ophthalmologist had done the paper test years ago. He asked about the results and I practically rolled by sore, dry eyes at him as I told him that they’d been dry. He said he would test me again for Sjögren’s and that if it was positive he might consider putting me on Pilocarpine.  He then said something about Pilocarpine costing $95/month and insurance never covers it. You know, so I wouldn’t expect a prescription for it. The funny thing is that I knew he was bullshitting on that part. You see, I had been given a prescription for a medication called Salagen given to me by the UAB doctors a few months ago. They’d noticed my mouth dried out too much for me to talk. Salagen is the brand name of Pilocarpine. It costs $1.20 for 120 pills; 120 pills is a monthly supply. I left the appointment feeling like the air had been sucked out of my lungs. By the end of the appointment, I didn’t know whether I was pissed at him or myself. The longer he rambled, the more I felt myself retreating into the “doesn’t speak up for herself” zone. I started feeling incompetent. I started feeling like maybe I was the one who was uninformed.  But my family and my therapist wouldn’t stand for that thinking.  I’m not the one who: Doesn’t understand that connective tissue disease is an umbrella term for many kinds of diseases.1 Doesn’t understand that many autoimmune and non-autoimmune diseases can cause sweating to cease.  Doesn’t keep adequate patient records.  Doesn’t listen to the patient or their family.  Failed to prepare or educate myself before the appointment.  I’m not the incompetent one. He is.  My mom said I need a new rheumatologist. When I told Debbie about the appointment & about the phone calls, she said I need a new rheumatologist. Guess what I discovered in my search got rheumatologists who take my insurance?! I’m pretty much stuck with a doctor who doesn’t know what the hell he is doing.  I hate the phrase “fuck my life” but it almost seems appropriate here.  Photo credit: C_Dave via Visual Hunt / CC BY-NC Joint Hypermobility Syndrome & Ehlers-Danlos are connective tissue diseases. ↩

Call Me Janet the Divine. On Second Thought, Don’t.