Rheumatologist


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!


A few days ago, I decided to give in to my curiosity about the lab results my super-awesome1 rheumatologist ordered when I went in for my sweat hiatus.2 The checkout slip had my login details for that office’s EMR on it, so I went to check it out.  Aside from finding out how truly abysmal the office’s record keeping skills are—my medicine, surgery, & allergy lists were inaccurate, he claimed he prescribed my Effexor, he was consulting with a doctor I haven’t seen in 6-7 years about my case, he had 4 visits total listed, even though there have been at least 12-16 visits, old lab reports were missing, old prescription data from drugs he’d prescribed was missing—I found out that he had a “plan of care” that revolved around telling me how fat I am3 and how I need to start exercising.4 I also found out that he thinks I’ve been on my Flexeril too long. I’m fairly certain that I pointed that little issue out about two or three years ago when I asked him to try something else because the Flexeril had become ineffective. But hey, it’s just my body, what do I know?  I would claim that I felt incredulous,5 but I can’t fake my disbelief over his ridiculous & somewhat terrifying antics. Seven years of this same old bullshit just wears a girl out.6 But this isn’t supposed to be about his incompetence. This is supposed to be about lab results. Tell me what your first reaction would be to these results.  Notice anything odd about them?  There are no units of measure listed on the ANA test. And the way the “normal range” section is phrased sounds like anything above 120 or below 100 is bad. Think again.  I had to search for an explanation of these results harder than a Disney prince has to search a magical forest for a barely legal future wife to take home to his dysfunctional family.   And I found one. Sort of.  Apparently, the range should read like this: Negative: Below 100 Equivocal: 100-120 Positive: Above 120 So I tested positive for the ANA Qualitative Test, the SSA (Ro) antibodies test, and the Scl-70 test. That could indicate: Lupus, Sjögren’s, Scleroderma, MCTD, UCTD, etc. It could also be a fluke because truly healthy people can have positive readings on these tests, and people diagnosed with them can have negative ones. So I’m not worrying too much about that.  I’m a bit more concerned with my CBC because my platelet volume was almost too low, while my platelet count was close to the upper limit. Combine that with an increase in red blood cells and you’ve got a warning that the anemia isn’t far from striking. I guess that explains why I’ve felt more down & out, and why my body has gone into the “I’m dying” feeling that accompanies the anemia. I’m going to get the rheumatologist to forward that part of the labs to my hematologist, to make sure waiting to the end of the year for my tests + infusions is still safe. I really dread the infusions, but they’re part of my life now. I will just have to deal.  Anyway, you know how I restarted my Pilocarpine/Salagen after the last rheumatologist appointment. Apparently it’s started helping because I have, drumroll please, started sweating. You never really can appreciate sweating and its purpose until you’ve gone without it. When I noticed how sweaty I was getting, I was ready to do backflips, except that I can’t do them.7 Another thing that I noticed is my mouth hasn’t been as dry, which is really strange because I’ve had dry mouth issues since I was a child. But I’m thankful for the saliva, too. It’s amazing how little things that most people take for granted or get annoye or disgusted by can make me want to do a happy dance.  at forgetting ↩The thing that’s potentially fatal, but that my rheumatologist is all blasé about. Who needs sweaty pits and tits in 90-100°F humid, summertime-in-Alabama weather? Oh, right, everyone. ↩16 points of a 23 point list ↩Because telling a doctor that you’re concerned that a 45-minute, 1.8 mile walk in 85°F+ didn’t cause you to sweat and that the overheating was limiting your exercise choices doesn’t get the message across that you’re actually exercising. ↩Not a Disney movie title adjective, though it could be. ↩A girl has no name. ↩I never could, unless I did them accidentally while falling. ↩

Bad Positives



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.