I Hate Celiac Disease

Not only do I hate Celiac Disease, I hate how sensitive I am. Now, I am very, very careful about cross contamination. Our house is gluten free and I only eat at restaurants I trust. But even restaurants I trust aren’t perfect. I’ve only been glutened once before since I discovered Celiac was the cause of my digestive issues so I guess less than once a year isn’t bad.

This time a little piece of grilled onion ended up mixed in with my fries and I ate it before I realized it was there. The grilled onions at that restaurant are beer braised. Beer has gluten in it and so terrible things ensued. That was Friday. I’m already a lot better. The worst has passed. Now I’m just a little swollen and achy, but the weekend sure was miserable.

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Update on Ani’s Health

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?

Amazing.

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.

Lots of Planning

A month ago I got the flu. And then I got an ear, sinus, and throat infection and bronchitis. And then I got mild pneumonia. Fun times, I tell you.

But I’ve been very productive during my mostly sitting in my chair coughing state. I’ve been lesson planning and organizing school for next year like crazy. I even got a filing cabinet and hanging file folders (purple because it’s my favorite) and colored manila folders (orange for Cameron, blue for Fritz, yellow for Adrian, green for all of them together).

I’ve got the first four weeks of school almost 100% planned. Only 31 more weeks to go (those are all about 75% planned already so it’s not as bad as it sounds).

Physical Therapy

Yesterday Ani started at least a month of physical therapy 2-3 days a week. Her therapist is experienced with people with Ehlers-Danlos (really important to prevent further injury). Her neck issues appear to all be totally related to the EDS.

Physical Therapy

When she moves her neck, her vertebrae don’t work together, but instead twist in opposite directions. This equals pain. Her front neck muscles are much weaker than her back neck muscles. This equals pain. She has craniocervical instability. This equals pain. So much pain. Doctors laughed at her for saying her neck felt too weak to hold up her head. Well, the physical therapist isn’t laughing. Ani was right about that all along!

Physical Therapy

The goal of the physical therapy and (so many) exercises she has to do in between visits is to strengthen her neck and retrain the muscles to keep her vertebrae in alignment and moving properly together. The ultimate goal is to get her back on the mat training at taekwondo. For now, though, after her first two visits, her neck is really hurting. We are hopeful that in a few weeks it’ll be much better (me more than Ani to be honest – she’s pretty much resigned to being in horrible pain for the rest of her life).