It’s been almost four months since we started getting diagnoses for Ani. At that point, she was sleeping up to 18 hours a day and worn out all the time. She was so incredibly sick.
What’s wrong with her: Ani has Ehlers-Danlos Syndrome, POTS, Fibromyalgia, and Celiac Disease.
What we’re doing to treat her: Every day Ani takes a beta blocker to help control the racing heart from the POTS. She did an experiment trying various POTS remedies and found that Nuun electrolyte tablets work best for her. She takes one in the morning and one in the evening now. She takes Lyrica for the Fibro pain. Recently she had to up her dose because the drilling pain that she now knows is from the fibro started up again. Hopefully, we’ll be able to decrease it back down in a couple weeks. She is careful with her range of motion to avoid EDS pain and, of course, she eats no gluten so the Celiac is usually a non-issue. She has been going to physical therapy for her neck (side effect of the EDS) and that pain has decreased a whole lot, enough that she no longer takes Aleve regularly. She is getting better at watching her body temperature (she has trouble regulating her body temperature because of the general dysautonomia that includes the POTS).
So how is she doing?
She’s still so incredibly sick, but when I think of how my daughter was just a few short months ago, the difference is incredible and so encouraging. I’ll be honest. I did not think she would survive. She was getting worse and worse. I thought she was going to die. She thought she was going to die. It was bad.
In March, a friend asked if they could dedicate their monthly fast to Ani’s health. Her whole family fasted for Ani. She encouraged others to do the same. I will always believe that changed everything for my daughter. It was within days that we started getting answers. We found doctors willing to help instead of brushing her off. We got medication, we got a treatment plan to help her, we got diagnoses.
She still has bad days. Some are very, very bad. On the Fourth of July, we had a church picnic. It was hot. We live in Texas, after all. She got overheated. Getting overheated means she got sick. Very sick. She slept most of the afternoon/evening that day. The big difference is, though, that the next morning she got up and was functional. She didn’t need three days to recover. That is a miracle. She still gets exhausted relatively easily, too, and she never feels truly good. But it’s livable.
Over the last week, she spent several days being a substitute nanny for three little girls and still did her normal program directing at taekwondo and also babysat a little girl Friday night. These are things she literally couldn’t have done just a few months ago (though I think she might sleep most of today since she was so exhausted by last night). She’s got plans to go see Spider-Man with one friend and Wonder Woman with some other friends. She’s training at taekwondo and working toward her second degree black belt again. She’s actually being able to be a human. Most importantly, she has hope for a future. A sometimes painful, taking medication for life future, but still a wonderful, full, happy future.