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. 

When Mom called from Nana’s house this afternoon, she said that Nana is still unable to get up and walk to the living room & kitchen. Nana is still in severe pain from the cramps. She’s scheduled for an appointment with her family doctor on Wednesday, but that’s as much info as my dad shared from their conversation. I doubt that’s all my mom said because, like me, she’s quite the verbose person—only she’s actually vocally verbose, whereas I’m prone to writing my wordage out.1 If I get to talk to her tomorrow that I need to tell her that the spinal stenosis can cause severe cramps that cause mobility issues. I also need to suggest that Nana see a rheumatologist because they can help in the treatment of the condition. Since they deal in inflammatory conditions, a rheumatologist might have a solution for her that other types of specialists didn’t think of when she saw them. I just am trying to find the best solution to lessen Nana’s pain. Fingers crossed, right? If anyone reading this is familiar with spinal stenosis and how to treat it, I’d love any ideas. I just can’t stand to see my Nana suffering so much.  Photo credit: badjonni via Visual hunt / CC BY-SA I’m not sure which is considered more annoying. ↩

The Harrowing, Narrowing Canal

If I had doubted the veracity of Nana’s claims that she is regularly dealing with severe pain, a trip to her house on Saturday ended that. I didn’t actually have any of those doubts though. I have seen her deal with mild and moderate pain before. This was something else.  She cried. She shook. She looked like she would vomit. She couldn’t walk easily or to the kitchen/living room area with any ease. She couldn’t even sit because it caused more pain in her legs.  She was suffering. She was in agony. I would have bartered my soul to stop that agony. It was excruciating to see her suffer so greatly, but I can only imagine that what she was experiencing was so much worse.  Before, when I would hear about others thinking she was making up the pain, I knew those people were wrong. Now I am sickened at the idea that they think she’s faking as a ploy to get their attention. It’s obvious that either they have never been there when she’s been in pain or they just haven’t paid enough attention. I hope they apologize for their assumptions. I hope they spend more time listening than passing judgment.  Right now, mom is staying with her. She’s getting her food and other things she needs. She’s also providing Nana a person to talk to. I hope Nana starts feeling better soon. Knowing she’s hurt so much so far hurts my heart.  Picture credit: Pixabay by nrebocho0

She Writhed About In Pain

On Saturday morning, we got a call that my Uncle Steve, Granddaddy’s last living sibling, had died. He had gone to the hospital with pneumonia last week and was transferred from the hospital to hospice on Thursday. His son, Grady, was driving from St. Louis to see him when Steve died. He was 91.1 I didn’t really talk on here about how much I loved Uncle Steve or how his lively spirit & weird sense of humor impacted my life. But it did, as it also impacts yours. Growing up, any time there was some weird or funny thing that happened, my mom would say that we needed to tell Uncle Steve. She told me his personality and jokes had shaped hers. Since my sense of humor became a lot like hers, I can say that it’s a lot like his as well. Anytime you laugh or smile at something funny or weird that I’ve said, you’ve been appreciating the world as my uncle would have seen it. Sort of.2 And now that he’s gone, any entertainment that my words or actions provide will honor his memory.  When people die, we can’t always say specifically how they touched our lives. Steve probably touched my life in ways that I don’t even know, but I do know how he changed me in this one way. And I will be forever grateful for that. And I take great comfort knowing that his unique spark of joy and humor will never die.   The obituary mentions 4 brothers and 4 sisters, but it is wrong. There were 8 kids in all: 3 girls, 5 boys. The first two girls and two boys were half-siblings. My great-grandmother remarried after her first husband died. She then had her last daughter, my grandfather, Uncle Grady—he died in WWII, and Steve. Her younger daughter from the first marriage died right before Granddaddy was born. If you’re worried about all of the personal details that I have shared, don’t be. Most of this information can be found on genealogy websites & Facebook, as well as military archives. You could probably even find some with Google by searching using an image of him. ↩We did differ on a lot of personal beliefs. ↩

A Generation’s End

On Monday afternoon, Nana called. She was in pain & couldn’t get to the bathroom or the kitchen by herself. She’d talked to the other relative.1 That relative gave her the equivalent of a verbal shrug.2 So Nana called mom.  My mom dropped everything & went to spend that night, last night, and tonight with Nana.3 And mom took Nana to the doctor. They’ve done tests to find out if Nana has rhabdomyolysis and we’ll find out either way tomorrow.4 It is painful and causes weakness & fatigue. Rhabdomyolysis is a serious and potentially fatal condition. Keep in mind that it’s the doctor who thinks it’s rhabdomyolysis.  Not to worry, the relative thought that the pain was all just a ruse to get attention.56 I don’t think she’s faking. If she’s got rhabdomyolysis, I know that would increase her pain level and decrease her ability to get around. It would also alter her mental status.7 Nana is at a higher risk of it being rhabdomyolysis because mom has had it.8 If she doesn’t have it, she could still be in pain or in a fatigued/weakened state for physical reasons. She could also simply feel that way because she’s depressed.9 And10 if it’s because of psychological reasons, we should still be paying attention to her.  I hope she gets better soon. She may frustrate me sometimes, but she’s one of the most important people in the world to me11 & I’m not okay with her being so sick. I know she’s not going to be as healthy as she once was, but I want her to be healthy enough to not be miserable or suffering every moment of the day.  You know who you are. ↩There are so many things I could say about this person right now, but I won’t. ↩Because mom doesn’t suck. ↩The National Institute of Health described ‘rhabdomyolysis‘ as: the breakdown of muscle tissue that leads to the release of muscle fiber contents into the blood. These substances are harmful to the kidney and often cause kidney damage. ↩A sample of two people exists. One person suck. The other doesn’t. If we’ve already identified the individual who doesn’t suck, and we have, then what person are we left with? ↩You know what? If Nana was just attention-seeking, then give her attention. She is almost eighty-three-years-old. She’s a widow. She’s had depression and mental health issues for decades. She has had so many friends and family members die over the span of her life. She loves you. You can give up a day or two to spend with her. If she wants me to come over to help her, I’ll do it. You can spend a night there. Or an afternoon. Or maybe just call her & listen. Let her talk. Let her complain. Let her have this. ↩You said you thought she was drugged, it could be that her muscles breaking down are causing her brain to be poisoned. ↩That means you could also be at a higher risk, too. If Nana has it, you need to talk to your doctor about your risk. You may hate me, but I don’t want you to end up with a preventable illness. ↩You know why this time of year is hard on her. ↩like with the part on attention-seeking ↩You were one of them once, too. ↩

When You Try Your Best, But You Don’t Succeed 

If you considering seven years a long time, then I’ve been using Twitter for a long time. Even if you don’t, that’s longer than most people have been on the site. It’s probably longer than the user @AdmForrestal has been using it, but he’s brought the weirdness in a major way. I would applaud his weirdness or laugh at it if it wasn’t so ridiculous and, to some degree, frightening. This racist human being1 has decided that I defend the opinions that I have so vehemently because I’m working for someone. That’s right. I have a particular opinion because I’m a shill for some company or government agency. Yes, just what any contrarian would do with their life: conform to a particular idea to make money. Because contrarians are all about the Benjamins and not about the whole thinking-for-themselves thing. Uh-huh. But really this guy claimed I’m a shill. @janersm You clearly have been told to ind this post on the internet and make shit up who do you work for? — JamesForrestal (@AdmForrestal) November 9, 2015 And why did he do this? Because he’s nuts. No, I shouldn’t say that, especially since I would chide anyone else who promoted stigma when they were encountering someone who behaved in a difficult manner. His reason was that he believed that I lied about my experiences in hospital emergency rooms. He said that patients don’t get visitors until they’ve been stabilized. That’s not always true. One of my examples of that not being true was back in July of 2012 when a mound of fire ants decided to make me their bitch. I was at the park with my mom and my dad waiting between doctor appointments. We sat under a shady tree because it was hot as hell outside and we happened to sit next to a fire ant mound. We didn’t know that my predisposed-to-atopy2 body had decided that fire ants were just so out of style and that it wanted nothing more to do with them, so it just had to respond with anaphylaxis. Clearly, no other reaction would have been appropriate for that situation. My parents, as witnesses to my fall and the first people that I mentioned the ant bites to,3 were essential to my care that day and to keeping me alive. They were the ones who told the doctors about my medical history. And they were the ones who eventually told the doctors about the ant bites. Before that happened, they thought that my fall and my two fainting spells were a result of the heat4. But the fainting, the hospital visit, and everything associated with that day was all clearly a part of a conspiracy to upset @AdmForrestal. When I mentioned before I “fainted” that we were hanging out at the Park, I was clearly just setting up this ruse. Dad decided we could spend some time under a tree at the park; so did the birds — Janet Morris (@janersm) July 24, 2012 The geese in the picture included with that tweet were clearly provided by PETA and were part of a liberal media conspiracy to upset this one random Twitter user over three years later. The original caption for that faked picture was “More lazy geese”, which, again, was all part of my clearly faked fall. No one in their right mind would ever insult geese by calling them lazy.5 My first tweet from the ER? Clearly, it was also a big old hoax. I know absolutely nothing about having anaphylaxis. Took 7 or so sticks to get IV started. Pulse being monitored. It was 139 at the park. — Janet Morris (@janersm) July 24, 2012 Obviously, I’ve never ever talked about being a hard stick over the last almost 15 years of having this website. And I’ve never mentioned that I have tachycardia. Those were all totally new occurrences and haven’t happened since. Except on that one day. That’s how you can totally tell that I’m a shill. Because that isn’t an ongoing issue for me. @janersm Idiot, the shock of hives and vomiting is not life threatening after stabilization them bringing them into a room after that haps — JamesForrestal (@AdmForrestal) November 9, 2015 If I did know anything about anaphylaxis, I would have vomited instead of just fainting, having my heart rate go up, developing hives, and being extremely dizzy. And my life wouldn’t have been in danger even when my parents were in the room with me. And when I mentioned that I hadn’t been tweeting during the rest of my visit? Clearly, that was me covering my ass. I must have needed some time to come up with the whole story. I wanted to update when I got discharged but my phone was completely dead, so it's been charging for a few hours. — Janet Morris (@janersm) July 25, 2012 When I talked that night about how hard my father took the trip, I was obviously continuing the hoax. When he had to be hospitalized the next day for stress that included that ER visit, I was also continuing the ruse on this poor Twitter user that I wouldn’t talk to for another three years. Other than that, I'm itchy, sore, have a headache, and have been trying to reassure my dad that it isn't his fault this happened. — Janet Morris (@janersm) July 25, 2012 When I talked about the people who helped me after I fainted, I must have been making that up, too. Oh, and when I fell the principals of Ed White & Hampton Cove did the first aid while Dad called 911. They also helped keep me from — Janet Morris (@janersm) July 25, 2012 getting up. I was stubborn enough that I kept thinking I was okay to get up. The four of them managed to keep me still. — Janet Morris (@janersm) July 25, 2012 I mentioned two random schools in Huntsville in my shout-out for shits and giggles. […]

A Conspiracy of Ants