Daily Archives: May 21, 2016


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. 


Dear Amanda Lauren, It still disgusts me that you were so cruel in your @xojanedotcom piece about someone you once considered your friend. Not just to her, but to her family, to her true friends, to people with schizoaffective disorder, to the mental health community in general, and to the people who have friends or family with mental health issues. To claim that you were doing it to boost awareness is frightening. You didn’t boost awareness of anyone or anything except yourself or your hunger for fame. You clearly crave drama. Your other pieces seem to indicate this, as did, let’s not mince words, cyberstalking your former friend. You didn’t need to see what was being said about you. You chose to either because something in you felt more alive with this young woman as your adversary or you felt like her hate justified some level of hatred you have for yourself. The Internet allows people to give into self-destructive urges like that. You should work on that because it will not only be potentially harmful to your career, but it will push away people who make up your support system. You should apologize to everyone harmed by your words, especially the family of your friend. I hope they didn’t read your piece, but if they did, then I can only imagine how that impacted them. Did you even think about them? Did you bother to ask permission to memorialize their loved one as a lost cause? Or were you too busy concentrating on the fame and drama this kind of story might get you? Whatever your reason, it was the wrong thing to do. You should be ashamed not of sharing your name but of hurting people so viciously. You shouldn’t try advocating on behalf of people who have chronic illnesses who you see as being undeserving of life because they’re sick. Your words were not wanted and your advocacy is unneeded. Apologize. Learn from your mistakes and don’t do this again. The attention you got was not worth it. from Destigmatize Me via IFTTT

Dear Amanda Lauren



I don’t know why I needed to know her name, but it didn’t find long to discover it. A few details and suddenly this woman who had been dehumanized by someone who was once her friend had her name and history restored to her. She was whole again. I know a fake name was likely meant to “protect” the privacy of her family, but it just seemed like a way to further diminish her.  “Leah” deserved more respect than Amanda Lauren gave her. She was more than her disease and she deserves to be remembered for more than her mental illness. She was a person. She was also a daughter, sister, friend, writer, actress, yoga instructor, and graduate of Tisch at NYU. She was loved. This is how we should remember her.  In the obituary, her family asked that donations be made to the Stella Adler Studio of Acting at NYU-Tisch. If you want to do so and can afford to do so, then I think that would be an awesome way to remember this young woman. 

How We Remember