There just seems like something’s wrong with our healthcare system when they put a note like this on the bill from your ER visit.
Yesterday I slipped on our van’s stairs. I felt and heard a definite pop. And then pain. So much pain. X-rays showed I did not break my foot. It’s just a bad sprain. But ouch! It hurts to put any weight on it. I have been reduced to hobbling. No walking for me.
My foot is bruised and up on some pillows to reduce the swelling. Every time I do any walking at all it swells up so fast and that hurts worse. So here I am instructed to do some Rest, Ice, (no Compression since that could damage my foot further), and Elevation. Things like this keep life exciting anyway.
One of the big arguments against socialized medicine is that it puts the government between you and your doctor. I find that puzzling because insurance companies already are there. And an insurance company is a for profit entity that 100% does not want to pay for stuff your doctor orders. Every visit, procedure, or medication reduces their profits after all.
We’ve experienced many denials by our insurance company dealing with Ani’s health. Apparently figuring out what is wrong with her and treating her wasn’t actually medically necessary. Or so you would think if you just listened to them and how often they overrode her doctors.
My doctor had to make a huge case for me getting the pneumonia shot “too young.” Eventually, with lots of evidence provided that I’d had bronchitis and/or pneumonia at least once per winter AND wasn’t immune to most strains included in the shot, the insurance approved of me getting the shot. Considering I didn’t get any respiratory infections this season for the first time in years, I’d say my doctor was exactly right even though the insurance company didn’t agree at first.
Well now we’ve hit yet another time the insurance company is getting between my daughter and her doctor. She has been on Lyrica for four years. In August, the insurance company changed from covering the brand name to the generic. It was a little annoying since we were paying $4/month for the name brand thanks to a co-pay card and have to pay $60/month for the generic. But whatever.
Well, it turns out the generic doesn’t work as well for her. She’s feeling the electrical impulses coming from her spine like she did pre-Lyrica. She’s in a whole lot of pain like she was pre-Lyrica. She’s constantly in a flare like she was pre-Lyrica. So the doctor ordered brand name only for her.
We went to pick it up and it’s $795 a month. The insurance company said we can’t appeal since it’s not a denial. They just aren’t covering it. They said she is welcome to keep taking the generic (which doesn’t work) or switch to something else, but unless we want to pay almost $800 a month Lyrica will not be what she takes. So she called her doctor and is leaving it up to him what to do next. Hopefully the insurance company won’t have a problem with whatever that is, too.
Three times a day Ani has to take medication. One of those times is just a half pill, but there are a bunch that she takes every morning and evening.
While we have to adjust her medication often, all these pills keep her relatively normal and functional so they are worth it.
Ani’s rheumatologist prescribed some new medications for her and once again we’re in insurance company limbo. So often the insurance company has decided they know better than her doctors and refused to allow her to have what was prescribed, sometimes demanding a different medicine be used instead. I just don’t think the insurance company people really know better than a doctor. But they certainly think they do.
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.
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.
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).
This week on Invisible Recovery Ani talks about mental health. It’s a long one, but worth watching all the way to the end if you or a loved one deal with mental health issues (related to chronic illness or not). She missed last week because she was procrastinating on editing this video since it was such a big job.
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.
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!
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).