ehlers_danlos

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. 


About Janet Morris

I'm from Huntsville, Alabama. I've got as many college credits as a doctorate candidate, and the GPA of some of them, too. I have a boss by the name of Amy Pond. She's a dachshund. My parents both grew up in Alabama.

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