Ehlers-Danlos


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 got another call from the nurse of the family medicine doctor today about the lack of sweat. She (the doctor) is still of the opinion that the rheumatologist is the best option. When I told the nurse what happened, she suggested that I just wait until the next appointment so I could tell the doctor. When I told her that my next appointment would be in around four months, she was a little less comfortable with the idea of me waiting. When I asked if she thought the family doctor might have an idea for a referral to a different specialty, she said that they wanted it going through the rheumatologist. So I decided to wait.  My mom, on the other hand, decided that the weather that occurs in the southeastern United States during the summer was too dangerous to risk that long of a wait;12 she called the office to talk to the nurse.3 Guess. What. Happened.  The nurse said I’d talked to the doctor on Wednesday.4 She said the doctor recommended I go to a walk-in for a potentially life-threatening condition.5 She said that nothing I see the rheumatologist for could cause a lack of sweat & that they don’t treat anything that causes that.6  My mother wasn’t having that, so this nurse said that she would talk to the rheumatologist, if he was still at the office,7 to see what he thought. Within an hour, she got a call back.   He still didn’t think anything he treats me8 for, but that he will reevaluate me in two weeks. He doubts there’s anything wrong that he treats me for, but he will check to see if there’s anything new wrong with me. Not to worry, when he checks, absolutely nothing will be wrong. There’s no possible way for me to actually be sick because I just have “loose” joints and need to get more sleep. This isn’t me being a defeatist or cynical. It isn’t me wanting to trash some well-meaning doctor who actually gives a fuck about what’s going on, but who I’m maligning for no good reason. This is me realizing that my rheumatologist has a tendency to be lazy asshole when it comes to actually treating me. This isn’t just my interpretation of his behavior. Anyone who has accompanied me to the appointment and met the man has the same assessment of him. He is dismissive. He is abrupt. He is out the door before I’m able to open my mouth and get words out.9 So I’m not anticipating any change in my condition any time soon.  Photo via Visualhunt From the Mayo Clinic: Anhidrosis is the inability to sweat normally. When you don’t sweat (perspire), your body can’t cool itself, which can lead to overheating and sometimes to heatstroke — a potentially fatal condition. ↩From the U.S. National Library of Medicine & the NIH: An abnormal lack of sweat in response to heat may be harmful, because sweating allows heat to be released from the body. The medical term for absent sweating is anhidrosis. ↩You can’t be surprised by her lack of boundaries. ↩Nope. ↩He may have told the nurse this. He did not tell me this. If he had, I’d be even more distressed by a doctor wanting me to go to a walk-in for something so serious. ↩I’ve come to the conclusion that my rheumatologist doesn’t bother to actually treat anything. ↩His hours are like four hours a day, two days a week. ↩Treats means a yearly appointment that he spends three to five minutes in max, ignores what I say, tells me to lose weight, ignores anything I say about dryness or subluxated joints, says soft braces and plenty of sleep will fix issues that end up requiring surgery, and prescribes another twelve months of Flexeril, even if I tell him that it’s not even working. This has been going on for years now. ↩Anxiety makes actually speaking about what’s wrong very difficult. If I can get a doctor or anyone else to give me a minute to adjust, I can actually talk to them to some degree. I can even stand up for myself sometimes. ↩

I Can’t Live, If Living Is Without Sweat



I’m not sure how much I’ve talked about this on here, but here goes. I have trouble regulating my body temperature. I don’t sweat enough to cool down. I don’t exactly know why. It’s probably due to one connective tissue issue or another.  Not sweating can be dangerous, especially when exercising,12 so when I saw the family practice doctor today, I told her. She said I should talk to my rheumatologist or his nurse. I called the rheumatologist’s office & the nurse told me that she’d never heard of anhidrosis/hypohidrosis34 and that I should call: (a.) my endocrinologist,56 (b.) family doctor,7 or (c.) go to a walk-in clinic.8  I asked was she sure that Sjögren’s/UCTD couldn’t possibly cause a person to not sweat. She assured me that lack of sweat has absolutely nothing to do with either condition.9 And I’m sorry, but who goes to a walk-in clinic for an issue that even a speciality clinic is saying they’re unfamiliar with? Why would you even recommend that?10 If you’re going to recommend calling a doctor, why not recommend a dermatologist or a neurologist. I no longer have either of those, but at least skin and the nervous system have something to do with a lack of perspiration.  I called the family practice clinic back and asked them to leave a message for my doctor. They said she’d call back. She didn’t. I guess maybe it’s been queued for sometime later, but I am not going to hold my breath on it.  I am frustrated that some offices don’t take real problems seriously.11 And I am even more frustrated that I cannot change to doctors/offices who/that do care because of insurance.12 Photo credit: Kullez via VisualHunt.com / CC BY On the 18th, when it was 80°F outside, I went for a 45 minute walk & a 18 minute walk. I came back when the left side of my head felt like it was being destroyed by some very angry person with a hammer. I was nauseated, had some gross intestinal issues, my muscles were cramping, my skin was bright red, and I had one or two drops of sweat on my face. The rest of me was dry. It took 3 days to recover. ↩I tried a short walk this week in cooler weather with similar outcomes, but recovered in hours. ↩the actual terms for the issue ↩I used lay terms while describing the issue. ↩I don’t have an endocrinologist. ↩Sweat glands are part of the exocrine system anyway, not the endocrine system. ↩The one that said to call her. ↩Yeah, really. ↩That’s why NIH has 14 pages of journal articles on Sjögren’s and anhidrosis. Because there is absolutely no link at all. Ever. And why it’s actually something that has been known to impact patients with Sjögren’s, Ehlers-Danlos, UCTD, MCTD, Fibromyalgia, Dysautonomia, etc., which are all treated by…rheumatologists! ↩And when it’s a condition that can be fatal? No, you don’t ship someone to a doc-in-the-box when you can’t be assed to understand potential symptoms of diseases you treat every day. ↩And, in case someone wants to launch into some rant about how they think I’m making this up, go talk to a wall. It will give you all the attention you deserve. ↩The American medical system is super fucked up. ↩

Can’t Sweat Any of the Stuff


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


I don’t run. I can’t run. I shouldn’t run. I have asthma, Ehlers-Danlos, chondromalacia, arthritis, a murmur, & tachycardia. Running, even jogging, isn’t recommended for me. Actually, that’s putting it mildly. A more accurate statement would be: pretty much any doctor, physical therapist, or other medical professional would rather I be murdered than have me running or jogging. The same goes for how my parents feel about it & how my body feels about this. So I don’t run.  Except I did.  This afternoon.   Because I’m a lot more competitive than I usually will admit to being, I decided I wanted to beat my time from my walk earlier in the afternoon.1 I decided it would be totally safe to jog a total of three or four feet. No big deal, right? Anyone can do that.  I. Was. Wrong.  I didn’t fall. I’m pretty sure I didn’t tear anything. I didn’t stroke out or have a heart attack or an asthma attack. My knee is a little bit swollen & red. It’s not really sore or anything. Just some overuse. I’ll take the day off from walking tomorrow or I’ll do some short walks—something that will let me recover.  I need to remember that I have to be careful with my body, even when I’m feeling super-competitive.  And I totally did. ↩

Jog, Janet, Jog



After yesterday’s appointment with a family practice resident, I have a partial medical clearance to exercise at the Wellness Center. The clearance will be reviewed next month. At that time, I may be given an expanded medical clearance or I may have to wait another month.  The doctor yesterday wasn’t sure why it was denied last week for the Ehlers-Danlos. But he was concerned that it wasn’t denied or limited for other, more dangerous aspects of my health. Specifically, he was worried about the tachycardia and asthma.1 I will be limited for the next month on exercises I’m allowed to do while there. I’m allowed to do pool therapy exercises and walking. The resident and attending aren’t sure my heart and lungs are healthy enough yet for unmonitored/unguided aerobic exercise. The resident hinted that he thinks I may need to see a cardiologist since it has been so long since I’ve seen one.2 At least the whole your-heart-may-not-be-ready-yet reason makes more sense than your-joints-that-sprain-even-when-you-don’t-move-could-sprain-if-you-exercise. Though I am a lot more aware of when my body can handle exercise than people who aren’t me.3  Convincing doctors that I know my body and its limits is next to impossible. Another example of this is that the doctor started to tell me the warning signs with asthma. I’ve had the disease since I was around a year old. I knew the mechanics of asthma by five. I literally had a children’s book that explained the parts of the respiratory system, how allergy triggers work, and why I needed to understand why I couldn’t be around smokers, flowers, dust mites, etc. at that age.4 I don’t smell flowers, go in businesses that allow smoking on the premises, or ignore my unique5 symptoms. I also knew, without him telling me, that I was not supposed to run.6  I don’t want to seem completely ungrateful. I am grateful that I got any release at all. It’s just frustrating to have someone think I don’t get what’s going on. I may seem naïve, but that doesn’t mean I’m not informed.  Oh, I finally got the inhaler prescription that I’d been trying to get for months. I had tried to get other doctors to understand that I needed an inhaler that hadn’t expired two years ago, but it just went in one ear and out the other.  Tachycardia and asthma can be complicated by or occur with/as part of hypermobility issues, including Ehlers-Danlos Syndrome. ↩There is no good reason to do so. The cardiologist said he didn’t think there was anything he could do because treating the tachycardia could complicate other health issues, i.e. my typically low-ish blood pressure. ↩For example, if my heart is just at 100-115, starting to exercise is fine. 120 is okay if it’s very, very low impact. 130-140 is no exercise, relaxation techniques need to be started. 140+ is hospital-worthy. ↩When I was four, I was admitted to the pediatric unit of Huntsville Hospital with my asthma. Lung and allergy doctors, as well as my parents, decided I was old enough to understand my disease. ↩I have cough variant asthma, which means I don’t wheeze and may have no other symptoms besides coughing, even mid-attack. ↩I’ve never really run in my life because I’ve had asthma since I was a baby. ↩

Rápido


1
I went for a walk today.1 As I went to step down from the blocks we have between the door & the porch, I didn’t step out far enough. I didn’t fall, but I almost did. I could feel my the ligaments in my ankle start to pull and stretch. Imagine a rubber band being stretched. You’ve almost gotten it stretched to the point where it will snap. Everything feels tight, but you can also feel the weakness. That’s how my ankle felt.)) Itdefinitely didn’t feel pleasant.23 It’s still tender twelve or so hours later.  It does better if I’m not stretching my foot out. That probably sounds like something simple that anyone could avoid doing, but I tend to do weird stretchy/hypermobile stuff while I’m just fidgeting & burning off nervous energy. And if it’s something uncomfortable or slightly painful, that might make me do it more. I know, I know. I’m a bit fucked up.4  Anyway, I won’t be limiting my walking/exercising unless it worsens. I’m propping it & may ice it some, but I’m pretty sure that everything is 100%.  Just don’t tell the UAB doctor that has to sign off on my medical clearance for the Wellnrss Center that I almost sprained my ankle while attempting to exercise. That will tank my efforts. And that would seriously suck.  Okay, my nighttime medicine is kicking in so the words on here are starting to look all kinds of strange. Goodnight, all.5 Actually, I went on two solo walks and one Amy walk. ↩In part because it burned. ↩It was also unpleasant because it felt like it would snap right that second. If it had, there probably would have been a fracture or two as well. ↩You love me anyway. ↩You know you love me. X-O-X-O, Clumsy Girl. ↩

Burning, Yearning Feelin’ Inside Me



Well, I scheduled the appointment with a family doctor. Not mine. Mine isn’t on the schedule for the rest of February and they don’t have her schedule available for March either.1 I don’t know the doctor that I will be seeing. I’m not anticipating anything good coming from the appointment, but I knew I had to make it anyway. New doctors and me don’t really mesh well. Actually, doctors in general don’t mesh well with me.2 My doctor has had some cringe-worthy moments, but she does listen to me. She understands that I am trying to take care of myself and I’m not trying to do something that my body cannot handle.3 And she’s encouraged me to exercise in the past.4 I’m hoping that she can talk to the doctor who will be seeing me or leave a note in my chart explaining that I’m not a complete masochist who wants to die from falling off a stair-stepping machine. I sent her an email explaining that I needed her help. I need a medical clearance for the Wellness Center to continue my physical therapy exercises on my own. A form was sent one to you, but I was called this morning & told someone else denied clearance because of the Ehlers-Danlos. Specifically, they mentioned skin involvement, which is mild for me. I know what exercises I can and can’t do without hurting my joints. The only things I was thinking of adding in were Pilates and pool exercise, which are both considered safe for people with Ehlers-Danlos because they’re low resistence, high repetition. I’ve never met the doctor that I’m supposed to see, which is hard for me because I tend to be intimidated by new doctors & feel like new doctors don’t always listen to me. I’m scared if Dr. ******** refuses that the strength I’ve built up since last summer and especially since the surgery will disappear. I’m worried that without continuing to do the exercises I will end up having more surgeries. Can you help? Hopefully, she’ll be able to do something. I also sent her one letting her know that I did try to get an appointment for the mini-pill prescription. I tried to schedule an appointment for the Norethindrone prescription, since it is a high-risk medicine for me, but the prescription was called in without an appointment. I thought you might want to know that I haven’t had any signs of clots while I’ve been on it. I also haven’t had any excessive bleeding while on it. Dr. ******, my hematologist, said that being on birth control is going to give me another year without infusions, but that I will probably need one this coming December or next year sometime based on my ferritin levels. I want her to know that I am trying to do things that I’m supposed to do to prevent future health problems. I’ve been by past doctors accused of not trying to take care of myself. I refuse to be blamed for these things. I refuse to let doctors, nurses, and random office workers5 who don’t know me and who don’t care about my overall well-being sabotage the progress that I’ve made and risk my life in the process. UAB Huntsville is prone to this sort of “well they aren’t on the schedule” and “oh, we don’t have a schedule for next week or next month available yet” thing. They do it to every patient, no matter what is wrong with them. No matter how dire the situation. And I’m not saying my situation is dire, but they’ve done it with my mom when she’s tried to schedule appointments for diabetes and blood pressure. ↩When you have a soft voice and you cry easily, doctors walk all over you. When you have a soft voice, cry easily, and chronic illnesses, they walk all over you while wearing heels that have Lego blocks on the bottom of them, bumpy side down. ↩Or she has acted like she understand this. ↩If she doesn’t support my use of the Wellness Center, then she’s being hypocritical. ↩The person who decided that I didn’t need the appointment for the norethindrone prescription was a receptionist with no medical training. ↩

Blood, Sweat, and Tears