Pain


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. 


I think I broke my toe/foot on Thursday afternoon. I’m not sure how, but I think I kicked the side of the pool yesterday afternoon when I was in it. I know it started hurting around that time. And I had trouble putting my shoe back on when I was getting dressed.  At first, my just seemed sprained, except that the pain wasn’t going away. I iced it and that didn’t help. I decided to try and ignore it, which also didn’t help.  Moving it is next to impossible and, like I already mentioned, it’s swollen. The pain has been pretty bad, but I really am trying to ignore that as much as possible.  The big thing is that the bruise started worsening. It was one spot, but it is now my whole little toe, plus spots on the toe next to it, the top of my foot, the side of my foot, and the bottom of my foot.  But the bruise spreading so much could have something to do with the 2.16 miles I walked today.1 Broken bones have never really done much to stop me. Sprains, sure. Fractures, nah.2  I am going to take the next day or two off from exercise, but that’s mainly because I’ve exercised for five days in a row.  And I’m back to religiously taking my Vitamin D.3 Which I’m using to mock some body-shaming trolls who think that overweight & obese people are lazy. Middle fingers always up to those lovely human beings. ↩My orthopedist used to have to replace  or reinforce casts I wore for the foot I broke three times. I would bust the bottom out of it from walking too much or doing ballet for a dance tryout with it on. ↩It was dumb of me to not take it for several months given the severity of my ongoing Vitamin D deficiency. ↩

I’m Not Lazy, My Mother Had Me Tested



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



I’m taking the day off from exercising today and I refuse to feel bad about it. I have exercised every single day this past week. My last day off was last Thursday, March 3rd. I actually should have taken one sooner. Had I taken one off, my heel probably wouldn’t have started popping last night. Several of my pool exercises involve going onto the ball of my foot. I must have strained a certain tendon.1 Anyway, I am taking the day off to keep from inflaming it more or, worse, actually rupturing it. I’m trying to be responsible after being a bit callous with my body’s limitations.  Speaking of limitations, the cardiologist has sent a letter to the UAB doctors to have my tachycardia-related exercise limitation removed. The echo was normal. I just have a heart that beats more quickly than the average heart. Because of my absolutely normal blood pressure the tachycardia can’t be treated with medicine, so the main solution for it: exercise.  Except today, obviously.  Photo via Visualhunt Yep, the one from mythology. ↩

Earned It


I had therapy yesterday. No worries. It was just my monthly visit. Things were kinda wonky there. The computer system went down for one receptionist before it went down for EVERYONE. There were therapists complaining their computers were frozen and secretaries complaining that they couldn’t schedule anyone. Patients were also complaining because there was no way to check everyone in. Debbie ran a little late calling me back, but that had nothing to do with the computer situation. She ALWAYS runs late. I think it’s a Social Worker thing. I was a little more anxious than usual. I still get nervous seeing Debbie, even after knowing her since my freshman year of high school. She’s been my therapist for almost a decade, which is the longest I’ve ever seen a therapist & I worry sometimes that one day she will leave or something. I used to expect therapists to drop me all the time. I actually worry about that sort of thing with anyone—doctors, therapists, friends, family. I feel like I always have to be prepared because people leave me so easily. It makes it a wee bit harder for me to trust people. I guess everyone has their baggage. I went to the pool a few hours ago. I did some walking & other exercises for about thirty minutes. When I got out, I was a little sick/overheated. Standing out in the rain helped some. Then, like a lot of people in Alabama, I voted. Unlike most, I voted Democrat.1 My leg still hurts from exercising on Sunday. It’s gotten a little better since I got out of the pool this afternoon. I think it is just an overuse sort of thing, since it is just achy pain and not injury pain. The muscle just feels tired. Oh, and I’m still smiley about other things from Sunday.2 But I just want to say that even with the injury and even if Leo hadn’t won his first Oscar, Sunday was a good enough day that my mood is still like really good. Happiness for multiple days at a time is weird for me, so I’m celebrating that.  I may go work on organizing clothes & books in my room some. I’m not even dreading it if I do because, like I said, I’m in a good mood.  To paraphrase Sheldon Cooper paraphrasing Spock: Live long and suck it, GOP. ↩I am being deliberately vague here. ↩

Busy Ginger Is Busy




As I’ve mentioned quite a few times, I have hypermobile joints. This is due to faulty production of or structure flaws in collagen. It’s something I inherited. It’s something that can’t be cured. It’s something that impacts my daily life. It’s also something that isn’t always well understood by medical professionals. Case in point, the family practice clinic of UAB understands little about the condition in general. As it relates to me, they understand next to nothing.  The Wellness Center sent a medical release to UAB for my doctor to fill out. I’ve been working with my doctor to figure out how the condition impacts my health & daily life. Was it my doctor who filled out the medical release? No. And did I get the medical release? No.  I did get a call from the clinic telling me that the release was denied because I have a “skin condition” that causes my skin to “tear so easily”—an aspect of the disease that isn’t that bad for me.1 It’s an aspect that isn’t really in my chart at their practice, so I figured that they googled it and went with what Google says it is known for; ignoring that the most common form mainly involves joint hypermobility. I told the person who called that I was joining to continue to practice my physical therapy exercises. I’m essentially going to treat the disease and to attempt to prevent future surgeries.  I know the types of exercise that are safe for people with Ehlers-Danlos: low resistance, high repetition. Recumbent stationary bicycles, regular stationary bicycles, pool exercises, Pilates.  More importantly, I know my own limits. I have to. My safety, my life depends on my ability to recognize what my body can go through safely.  But a doctor who I have never met, who has no familiarity with my condition or my history has decided that I can’t do something that I need to do. Oh, but I can get a new release form from the Wellness Center & I can schedule an appointment with my doctor to get the release approved. Of course I have to call back at a later time to do that because they couldn’t transfer me to scheduling. In the meantime, I get to pay for something I can’t even use.  Fun.  Oddly, yesterday I was happy that someone unfamiliar with my chart was making calls on my care.  Yesterday, I tried to schedule an appointment for another 3 month prescription for my birth control pills. Because of my increased risk of clots, they require high risk medication appointments for the prescription. They decided to call it in instead of see me.  I thought the idea of appointments every three months was silly to start with, so I assumed that they’d changed their minds on it. Now, I’m guessing that someone didn’t review my chart properly.  I guess a high risk of blood clots is safe to ignore, but if I might tear my skin or, more likely, tendons & ligaments, then must be stopped. Something that could literally kill me is safe, but something that could happen if I just walk across the room is too risky. Welcome to Bizarro World.  My skin does tear more easily than it does for people without the condition, but my level of skin involvement is mild compared to many who have Ehlers-Danlos. ↩

Do You Even Medicine Bro?



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 


In just a few hours, I get to find out if my months of physical therapy are actually coming to an end. They should be, but the way that Brant talked on Tuesday makes me think it might not be.  If it is: I am planning on going to the Wellness Center to sign up to continue my rehabilitation on my own.1 If it isn’t: No trip to the Wellness Center will take place. I will come home as usual and continue my appointments. I will try not to be too cocky about the possibility that it may happen, but I will also try not to be disappointed if it doesn’t.2 I mentioned the possibility of changing family practice physicians the other night. It looks like that won’t be happening. The billing folks at UAB have written off the appointments. Apparently, they were all assigned to an attending who only briefly worked there. He never became certified with our insurance company. They seemed to be as frustrated with anything related to him3 as we were. So, yay, no new doctors!4 Anyway, I guess that’s all for now—except that I should point out how fucking awful Nazis/Neo-Nazis are. If you follow me on Twitter, you’ve probably seen my “conversation” with a self-proclaimed Nazi5 lately. They aren’t just bigots, they are assholes. No, wait. Assholes have the potential for good feelings. Nazis are the feeling lactose intolerant individuals get when they’ve just consumed massive amounts of ice cream, cheese, milk, etc.6 They. Are. Awful. And this guy is no different. They’re also incredibly boring, as there is only so much they can actually manage to say.7 And they piss. me. off.8 And I keep wanting to walk away from the arguments, but that ignoramus says something even more grotesque and my brain just goes into “must tell him he’s a racist jerk” mode. I should just walk away and maybe I will this time or the next. Just curious, but how would you interpret this picture?910       Oh well. I better go twiddle my thumbs11 for a while until it’s time for therapy.  My insurance plan covers a membership at the Center. ↩I am fairly certain that it will happen. ↩Re: He caused more problems than he solved. ↩I think I hear Handel’s “Messiah” playing in the distance. ↩This is where he’d go “@janersm *National Socialist.” But fuck it, he’s a fucking Nazi. If he doesn’t like being called such, he can stop being a fucking Nazi. ↩If you aren’t lactose intolerant, imagine the worst attack of nausea, fatigue, wooziness/dizziness, headaches, gas and either constipation or diarrhea you’ve ever had. Now multiply all of that by about 100. Voilà! ↩Blah, blah, blah. Jewish conspiracy. Blah, blah, blah. Lies. Blah, blah, blah. White is right. Blah, blah, blah. Holocaust? What Holocaust? Blah, blah, blah. I’m a pathetically ignorant shitbag, but I’ll never admit that. Blah, blah, fucking blah. ↩Considering how much time I’ve spent trying to learn about why & how the Holocaust and other bigotry has happened, this should come as no surprise. ↩@Bobasnotdead is the Nazi you’ve been looking for. ↩^ See what I did there. ↩Sleep. ↩

Hours Feel Like Days