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Apparently Nottingham is a boring place at night because my number one stalker felt the need to comment on my blog again. As you can see, one of its residents, who claims to be named Roslin, is so bored that she felt the need to tell me: I will say something. All you do is take, take, take – you want money, you want people to come and do repairs for free. You and your parents do nothing but take and expect and whinge and moan. You are home all day, every day, do some repair work yourself because we all know you are not really sick! Interesting. It’s amazing that someone who lives across the globe from me knows not only my health status, but that of my parents. Apparently she missed a few weeks back when my mom was in the hospital with respiratory failure and kidney failure, or that her kidney failure has gotten worse; something I posted about rather regularly on Instagram. And she must have missed all the posts I’ve made on Twitter about my father having dementia and going through all the fun that that entails. A post shared by Janet Morris (@msjanersm) on Jan 21, 2017 at 4:38pm PST A post shared by Janet Morris (@msjanersm) on Jan 23, 2017 at 10:15am PST A post shared by Janet Morris (@msjanersm) on Jan 25, 2017 at 11:26am PST Almost. A post shared by Janet Morris (@msjanersm) on Jan 27, 2017 at 9:55am PST Signs at the hospital are confusing. A post shared by Janet Morris (@msjanersm) on Jan 27, 2017 at 9:57am PST Apparently dad had a panic attack at the grocery store with mom, when she went to get something w/o tell him, today. #dementia — Janet Morris (@janersm) August 3, 2016 Now he thinks his phone is trying to keep him from saving appointments on it. #dementia — Janet Morris (@janersm) October 4, 2016 Dad’s EEG & Doppler are tomorrow/later today. #dementia — Janet Morris (@janersm) October 20, 2016 Anyone know if this also can involve anger & threats of violence? https://t.co/Aa1xviG2AY #dementia — Janet Morris (@janersm) January 16, 2017 The GP/FP said with his memory & behavioral issues and his family history (at least 4 blood relatives with #dementia) that it was needed. — Janet Morris (@janersm) March 7, 2017 Yeah, parents who have organ failure and parents who are put on dementia medication are so healthy. I really hope that Roslin is never responsible for the healthcare of anyone. Maybe she isn’t a doctor. If she is, then I bet her patients will all die very painful deaths because she’s clearly not good at this kind of thing. I know that Roslin has missed out on my health issues, which have also been discussed on various social media outlets and in private entries on here, but that’s not new. In fact, that’s kind of her shtick. She’s always wrong about my health. I know that Roslin of Nottingham once went by the name of Rachel Cooper. That time she was so wrong that she, in her rush to judgment, didn’t realize that I actually had something wrong with my knee that would require surgery and months of rehabilitation. In fact, bringing up Rachel’s failure at diagnosing me became a bit of an ongoing joke. I tend to laugh at pathetic little trolls like Roslin/Rachel. That’s all you really can do with them. Well, that and pity them. Poor little sociopathic babies. I think that she may also go by “Rachel Clarkson”, the person from the United Kingdom who decided to send me a snarky tweet last week within a day or so of my posting the link to GoFundMe. Who knows what her real name is? I bet that her internet provider does. In fact, I’m hoping that they get back to me on my inquiry into it. I hope Roslin/Rachel realizes that people who are chronically ill and who are caregivers of people who are chronically ill have a tendency to whine and moan about their lives because having health issues sucks. Not only does it make your life painful and stressful, it drains your finances and any little bit of energy that you might have. People like me complain because life is not something anywhere near pleasant, and part of that is because I have to regularly deal with people like her. Roslin/Rachel isn’t the only person who acts like this. People that I know offline do it. Distant cousins have done it, including the ones who submitted my name and video to a comedy show so that I could be mocked. Total strangers, ones who aren’t sick enough to stalk my blog for two years so that they can harass me, do it on Twitter; at least 3 times a week lately, I get an unkind message from someone. Their favorite thing to tell me is that I’m selfish or spoiled or that I suck somehow. Oh, or that I need to get a job or that I deserve to die or that my grandmother deserves to die. There are a lot of little variants of deplorable messages that people send. And you know what? I have a right to complain about that part of my life, too. I don’t have to keep it all bottled up because some random asshole on the internet can’t deal with the things I say. If they’re that chickenshit, then they need to find a hobby or get some therapy because clearly they have too much time on their hands and have something going on that’s ‘causing them to be inhuman assholes. I pity them and their fucked up existences. I may be poor and disabled, and I may end up going to jail and being homeless for having a dilapidated house, but at least I’m not a horrible human being who gets off on trying to make other people as miserable as them.

And I’d Be Like, “Why Are You So Obsessed With ...




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.