For other zebras, days like these sound very familiar. My zebra, like many others, has several other health issues that are found more commonly in EDS or are part of her EDS. So on top of the EDS itself, she has Neuropathy, Secondary Adrenal Insufficiency, Autoimmune Thyroid Disease (aka Hashimoto’s), and Gastroparesis. Thankfully the latter is controlled most of the time, but there are flares when she can only handle liquids. Sometimes they last a few days. Sometimes up to a few months. You never know. Managing all of the conditions and their accompanying symptoms, meds, pt/ot, appointments, etc. can get a bit overwhelming.
Take the other day for example. We had an appointment with her PCP that morning to check in, get refills, etc. While we were there we had labs done for her Endo to see if her thyroid levels were better after the med increase. The Endo is two hours away, so they often send orders for routine blood work to her PCP. While they were at it, they took an extra vial of blood because her veins are such a pain. (Veins are connective tissue, so hers roll and blow like nobody’s business.) It’s a good thing, too, because there was still a standing order for a BMP from her last Gastroparesis flare. They literally could not get a sample to check her electrolytes.
Once out of the lab we actually see her PCP. I asked if Brian, the amazing radiology tech there (who we’re on a first name basis with because EDS and imaging go hand in hand). He checks and yes, Brian is there and so is the ultrasound tech. Great! Because we have that order in for an ultrasound to check on her thyroid nodules. It’s our lucky day as there is room on the schedule, so we head downstairs and knock one more thing off of our list while we’re there.
The ultrasounds worry her, because she’s had to have on biopsied and we have to keep an eye on it, and check it every six months. Obviously, any time there’s even a slight change the “C” word can come into play, it causes some concern. I reassure her that if it ever changes over, we will catch it quickly and deal with it. I tell her all the stats and how she would be okay. Still, she’s a teen and it’s scary. Shoot, it’s a little scary for adults.
After she cleans the ultrasound goo off of her neck, it’s time to head to PT. It’s her tenth round. We came to a new place and really like her new guy. He knows his stuff about EDS (which is not the norm). It’s the hardest she’s ever worked in PT, but in a good way. She does WORK. And it hurts. But she never complains. Right now she’s working to get back into her skates. She misses her Vanilla Code Red skates like Little Debbie would miss sugar in a shortage, so she’s working as hard as she can to get back to the rink.
The problem right now is that the latest joint to slip on out of where it should be is a facet joint, or Z-joint, in her back. It’s kinda jamming into the one above it, which causes bone on bone pain whenever she stands, walks, or sits unsupported. She did have a five-minute max on those activities until she got her back brace. It goes in at the waist like she does and helps support her back. Now she can handle 10-15 minutes, depending on what she’s doing.
That works out okay for around the house unless a knee or something also is out. Then it’s Eddie time (her chair, affectionately named after her EDS) since her shoulders and fingers also dislocate so her forearm crutches do more harm than good at this point. So we’re working on making the house as handicap accessible as possible and using Eddie for most out of the house activities. She can still get from the car to a seat at the movies, or a table to eat, but a trip to a store without him? Forget about it. Some people don’t understand part-time wheelchair use, but that’s another post for another day.
So back to PT. She does her thing, puts her brace back on and off we go to pick up various meds at the drugstore. Then it’s home for OT time and her gratitude journal. (Who wouldn’t need one with all of this going on?) Then we knock out school work from her online private school. It’s a godsend, albeit an expensive one, for her to have the schedule flexibility. She missed way too much school in the traditional setting and it was hard for her to keep up. This way, if she feels bad all day, but is up at 2 am (which she often is since her sleep is horrible) she can knock out some lessons. Ours has a great curriculum, great teachers, etc. I just help out with the day-to-day.
After school is done we spend a little time using the TENS unit. It doesn’t really help with the back pain as she’s laying down when she uses it so the bones aren’t hitting each other, but we’re hoping the stimulation will help with circulation and keep the muscles from going into spasm around it again. (Thank you, two-week round of Flexeril for relieving that!)
It was a long day for her and for this zebra mom. There are a lot of long days in zebra life. There’s always the day-to-day management, fatigue, etc. Then the pop up stuff, like a shoulder or knee popping out and dealing with that. It can get overwhelming. Sometimes she’s just had it. Other days my poor hubby has to talk me down from the edge, so to speak. Keeping up with all of this, housework, my non-zebra teenage son (who is amazing by the way), and working a 40 hour week is wearing me pretty thin. Having a schedule with four ten-hour days in a row is just too much right now. Including my lunch, I’ve put in 11 hours before I’m off work to do everything else. And you’ve seen what my days off often look like just from this post. So it may not be surprising that it was a bit of a meltdown that pushed me into finally bringing this page to life.
I’m hoping baring my soul a bit helps me cope with everything. I’m hoping that reading it helps others cope and feel less alone with their own struggles. I’m hoping it raises awareness on EDS and the day-to-day challenges people who have it face. Like everything else with EDS, I guess we’ll have to wait and see.