Nocturnal Musings #19: The Things You Learn

Nocturnal Musings #19: The Things You Learn

I’m awake since I feel a bit sick right now. Nausea has become a fairly common occurrence during my days now, likely from all the salt tablets I’m ingesting…and all the food I’m not ingesting. I really don’t care, either.

So, it’s been a bit since I really updated at all because I’ve been reblogging my endometriosis-related posts this month to spread awareness. But what else have I been up to?

I was diagnosed with an “unspecified connective tissue disorder” by the geneticist. He said the main reason he’s not putting me down as a full EDS-HT diagnosis is he doesn’t want to “burden me” with such a big diagnosis now. Really? With all I’ve been through, I think I can handle it. But when it really comes down to it, it’s just a matter of semantics. I have Ehlers-Danlos Syndrome Hypermobility Type, albeit a mild case. I scored a 5/9 on the Beighton score (both thumbs, left elbow, left knee, and touching the floor.)img_0923 I really think if I had been more relaxed, he could have subluxated my right side as he did my left, which was an odd feeling, but one I’ve felt before, so maybe my joints have been meandering out of place. I had one “major criteria” from my shoulder injury, which occurred in 2004, and it counts because the mechanism of injury shouldn’t have caused an injury (I gracefully raised my arm and my acromioclavicular ligament snapped. I’m fairly certain it was a type II injury: “Rupture of the acromioclavicular ligament and joint capsule, sprain of the coracoclavicular ligament but intact coracoclavicular interspace, minimal detachment of the deltoid and trapezius.”) Basically, doing this caused the injury:

Ballet GIF - Find & Share on GIPHY

But the diagnostic criteria for EDS have just been revised for the first time in 20 years and will be released on March 15th, so we’ll see what happens.

I’ve discovered the need for rest days. I mean, I generally take it easy anyway since I don’t want to do anything to make myself worse. But I spent a long while cleaning and doing four loads of laundry last Sunday. When I woke up on Monday to get ready to go to an appointment with my cardiologist, I discovered I felt so sick it was impossible for me to even get out of bed. Even the thought of just being able to go to my appointment sitting in my wheelchair wasn’t enough for me to be able to rouse myself. It’s hard to explain what I mean when I say I feel “sick” other than kind of flu-like and sort of unable to move, while simultaneously feeling like I’m about to lose consciousness…while already laying down. So I missed that appointment. I spent the next three days pretty much in bed, with strict instructions from David to be on bed rest Thursday because I had multiple appointments Friday.

As a result of resting for four days after my overexertion, I was able to make it to two of my three appointments on Friday. First I saw my ENT for a final follow-up after my brain surgery six months ago (has it really been that long already?) He was running about 45 minutes behind and I almost started crying in the waiting room because my hospital phobia was rearing its ugly head. But as far as my exam went, he said he could barely see where they had cut my skull open in the back, so everything was good and healed. Yay!

Next, we saw my neurovascular surgeon’s nurse practitioner for a 4-month follow-up after my stent placement. She was a bit flabbergasted at my deterioration, since she was the one we saw when my POTS symptoms started and we thought it was anemia. She said they’ll contact me in October to schedule an angiogram (no overnight stay this time) to make sure the aneurysm hasn’t re-bled.

We skipped my last appointment for the day, which was supposed to be a cardiac stress test, because I felt so sick just from having been sitting upright in my wheelchair for 2 hours by this point. So we went home and I went to bed. We learned a new rule: no more than two appointments on the same day. And since I spent pretty much all of yesterday in bed due to my exertion on Friday, another new rule is no appointments two days in a row. I need at least two days in between to recover. Which is truly pathetic.

Such is life for me now. I’m learning new things about myself that are painful and sad. But I press on, even if it’s from my bed. What else can I do?


0 thoughts on “Nocturnal Musings #19: The Things You Learn

  1. When I was going to the Children’s Hospital of Phili, I’d see multiple doctors there. Whenever I’d need a new appointment they’d try to make it easier on me by scheduling my appointments on the same day and by the end of the day I’d be DEAD. lol

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