Fritz, upon discovering today is the first day of spring, wondered just why we had spring break last week before spring started. Good question. Of course, living in south Texas the temperature has been quite spring-like since, well, January.
Last week was fun. Cameron went on Trek. This is a thing Mormon kids do to simulated being pioneers. They wore pioneer clothes (plus tennis shoes because we’re not that crazy). Slept outside. Cooked some of their meals on a fire. Were put in groups called families with a Ma and Pa. Pulled handcarts (and in the case of Cameron’s family, also pulled the chariot of their “sister” in a wheelchair). Got sunburned. Walked 26.6 miles over three days. Sang 99 Cartons of Milk on the Wall. Twice. And then sang 499 Cartons of Milk on the Wall. He absolutely loved it.
Wednesday Ani saw her rheumatologist and got some diagnoses and a treatment plan that is already helping a little bit.
Friday I took the kids to see Beauty and the Beast. We loved it. It was absolutely perfect. We’ll definitely be buying it when it is released on DVD (or, rather, digitally from Amazon because that’s what we do).
It’s been a year since we started redecorating Ani’s room. We’ve still got a few touch-ups left to do, but now we’re ready to move on to Cameron’s and the boys’ rooms. Saturday we went and got paint chips from Home Depot in pink (Cameron), blue (Cameron and Fritz), and yellow (Adrian) to choose from. Cameron and Fritz separately picked the exact same shade of blue.
Spring Break also included lots of reading (I’ve read 13 books so far in March), youtube videos, video game playing, and Cameron working at spring break camp at taekwondo after he returned from Trek.
Today we went back to school and everything went great. Everyone focused and worked hard and we even got all of our all together work done (rarely does that all get done in one day). Ten more weeks of school and then we’re off for the summer!
Ani’s fourth video is about the future and doing what is realistic and what makes you happy even if you have to totally revise what you thought the future would be like because of chronic illness.
We already knew Ani had Celiac Disease and insomnia. She was diagnosed with POTS last month. We finally got a copy of her upright MRI report. It was not good. She does not have Chiari, but she does have a totally jacked up neck. She has mild straightening of the neck, a 2mm subluxation at C4, multiple herniations C4-7, and narrowing of the cerebrospinal fluid space.
Yesterday she saw her rheumatologist. He is a soft-spoken, kind man. He read her MRI report and looked at her and said, “You are in pain.” He sympathized with what she has been through and promised he will help her get well.
So he added two more diagnoses. She has Ehlers-Danlos. It is likely many people in our family – including me – have it mildly. She’s having a lot of pain because of it because her joints are constantly going out of place. Her hips and shoulders are misbehaving the most lately. For that, she is to continue taking Aleve and use wraps, K-T tape, etc. She is also to do isometric exercises to help “teach” her muscles where to stop rather than allowing them to keep going as far as the joints will let them.
She also has fibromyalgia. For that, he prescribed Lyrica and wants her to do some gentle exercising every day. One day she’ll get back to training at taekwondo, but we need to fix her neck first. It makes sense that the Aleve was helping some, but not everything. Her fibro pain isn’t from inflammation so the Aleve was only good for the EDS pain and possibly her neck pain.
He said she really needs to get deeper sleep. We have noticed that when her pain is high she can’t sleep but when she can’t sleep her pain gets worse. It’s a vicious cycle. When her pain is really high she ends up with muscle twitching. So to help with the sleep, she is to take Benadryl every night. It is the only thing that will reliably knock her out. Melatonin doesn’t work for her and we tried Aleve PM and while it made her tired, she still sat staring at the ceiling until well past midnight every night.
On Tuesday she will be seeing the neurosurgeon to decide what to do about her neck. This has been a long, hard road to diagnosis. It is such a relief to finally be making concrete plans for helping her to live a normal life with limited pain.
Ani’s third video involves being ridiculously hyper and three grumpy pets. Our animals have been very good companions for her since she’s been so sick and in so much pain.
Ani’s second video went up on Invisible Recovery yesterday. This one is the ten things people say to her all the time.
(Link to video on YouTube: 10 Things People Say)
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.
Ani was tested for Addison’s Disease yesterday. The result was negative (yay!) so we can cross that off the very long list of what might be wrong with her.