A couple weeks ago I suggested Ani start a YouTube channel to talk about and support people (particular teens) with chronic illnesses. She made her first video where you get to see her for a few seconds without make-up and see just how bad she usually looks.
Warning: My daughter is really perky. If she’s this upbeat sick, she’ll be scary healthy, if she ever does get healthy. She was on the good drugs when she recorded this, the ones she got at the hospital that she’s been taking extremely sparingly when the pain is at its worst, so that may explain her perkiness.
She’s got lots of great ideas for her channel, Invisible Recovery, including interviews and talking about what it’s like dealing with all this. She plans to post one video a week. Honestly, just planning this and thinking about helping other sick teens not feel so weird and alone has given her such a big boost. And, apparently, I will be one of the interviewees one of these weeks (I made her wrong, you know).
As for how she’s doing right now… Not great. She hit her deductible for the year on February 4th so that’s pretty awesome. 10% for the rest of the year! She’s in a lot of pain and while the doctors at the hospital said she’s a zebra, no one seems to want to figure out just what type of zebra she is. They are reasonably sure she’s not dying or at least not from something they can figure out. Our insurance company is playing doctor right now and so she can’t have the pain medication her doctor wants her to have until she tries two others. At least the one she’s on right now is working better than Aleve. Her next appointment is in 2 1/2 weeks with the rheumatologist and then a few days later with a neurosurgeon.
She’s found two things that make life a bit better for her. One is drinking pickle juice. She told me she wanted the pickle jar and a straw. I thought she was joking. She wasn’t. She drank all the juice in one sitting. It really helps the POTS because of the salt. It makes her drink more water and also helps her body hang on to that water increasing her fluid volume. That helps her heart rate stay stable when she changes position and so decreases the unpleasant POTS symptoms. We should just buy her the pickle juice. In quart bottles, preferably.
For years Ani’s been complaining that her neck feels too weak to support her head. It’s gotten progressively worse. That’s where a lot of her pain is coming from. So we’re wondering if she has some craniocervical instability going on. We had a neck pillow for use on airplanes so Ani decided to try it as a makeshift neck brace and it helps so much. It reduces the pressure she feels at the top of her spine and helps a lot with the neck pain. It looks pretty silly, but it works, so we’re going with it.
It’s wonderful to see her excited about something again. Really, the only thing that truly has been giving her joy lately has been her job. Invisible Recovery has given her something to think about and plan. I think it’ll be just as good for her as it will be for other people.