Burning, Yearning Feelin’ Inside Me

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

  1. Actually, I went on two solo walks and one Amy walk. 

  2. In part because it burned. 

  3. 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. 

  4. You love me anyway. 

  5. You know you love me. X-O-X-O, Clumsy Girl. 

Blood, Sweat, and Tears

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.

  1. 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. 

  2. 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. 

  3. Or she has acted like she understand this. 

  4. If she doesn’t support my use of the Wellness Center, then she’s being hypocritical. 

  5. The person who decided that I didn’t need the appointment for the norethindrone prescription was a receptionist with no medical training. 

Does my family doctor only work one day in a month?

from Twitter

February 11, 2016 at 04:10PM

Do You Even Medicine Bro?

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. 


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. 

  1. 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. 

Countdown to 32

There’s now less than a week1 until I turn 32. I’m not nervous about my birthday. Of course I’m having my typical I’m-getting-older-and-I-still-haven’t-done-everything-I-expected-to-do-up-to-this-point anxiety attacks. But I know now that those panicky reactions around birthdays are completely normal. 

Although this year will mark the sixteenth anniversary of my forgotten birthday. If you haven’t heard the story, on my sixteenth birthday, everyone forgot it was my birthday. I had had my birthday party the Saturday before, so the school friends were excused2 for forgetting. And I’ve mostly forgiven my extended family for forgetting, since Will3 was born the day after.4 But my parents will never live down forgetting their only child’s sixteenth birthday.5 

Next week will also be the fifteenth anniversary of this domain—cue the people mocking a 30+ year old person having a domain called fuzzypinkslippers.com.6 Assholes have to be assholes, since they don’t know how to function otherwise.

  1. February 17th. 

  2. For the most part. 

  3. I miss him & his creativity. I hope he’s still awesome. 

  4. Tell him “happy birthday” from me. 

  5. 🎶 It’s the stuff guilt trips are made of…  


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

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. 

  1. You know who you are. 

  2. There are so many things I could say about this person right now, but I won’t. 

  3. Because mom doesn’t suck. 

  4. 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. 

  5. 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? 

  6. 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. 

  7. You said you thought she was drugged, it could be that her muscles breaking down are causing her brain to be poisoned. 

  8. 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. 

  9. You know why this time of year is hard on her. 

  10. like with the part on attention-seeking 

  11. You were one of them once, too.