I’m still here, which constantly amazes me. I have not been engaging with social media but that doesn’t mean that I’m unaware of what’s been going on outside the confines of my apartment. Sometimes, it’s better to observe and learn, or wait with as much patience as one can muster, depending on the situation. Lately, I’ve been doing nothing but wait. It’s taken a large toll on my mental health, which is why I’ve been in observe-and-learn mode versus action-and-disseminate-info mode. I’m so stressed by what’s happening in my personal life that I have very little bandwidth for anything outside of my own health.
To summarize, I’m still waiting for the surgeries that were pushed back by covid19. I still don’t have dates for either, but I’m told I may have dates next week. They say that pretty much every week, though. On May 29th I had a minor procedure while sedated and then on June 11th I had another procedure with general anesthesia.
I have undergone sedation or general anesthesia so many times in my life. 12 times since 2008. It’s shocking that I didn’t put the pieces together until last week. I always thought I was having rapid cycling bipolar episodes that refused to respond to medication. But no, emotional side effects of the surgical medications affect 1-10% of people who receive them and I’m sensitive to medication; I tend to have side effects from everything I take.
The below are “only” the side effects that I have experienced with each sedation and doesn’t include other possible side effects.
- Propofyl, which causes the onset of sedation, has the side effects of elation and euphoria.
- Rocuronium, which causes the onset of temporary paralysis, has the side effects of hemiplegic migraine, anxiety, agitation, restlessness, disorientation, abnormal dreams, depersonalization, depression, emotional lability, and euphoria.
- Sugammadex, which reverses the paralysis caused by rocuronium, has the side effects of insomnia and disordered sleeping, anxiety, depression, feeling sad or empty, loss of interest or pleasure, irritability, restlessness, trouble concentrating, and sleepiness.
- The pain reliever fentanyl, which my insurance wants me to on around the clock instead of non-addictive pain medication, has the side effects of fatigue, lethargy, irritability, malaise, abnormal thinking, anxiety, dysphoria, depression, and insomnia.
- The pain reliever lidocaine has the side effects of nervousness, apprehension, euphoria, confusion, agitation, disorientation, restlessness, excitement, ringing in the ears, dizziness, and lightheadedness.
None of these were side effects that had ever been mentioned to me by any surgeon or anesthesiologist. Until last weekend, when I suddenly became dangerously depressed after two days of euphoria, I had no idea. But this time, having undergone two sedations in two weeks, I became suspicious. I called the hospital and the doctor on call gave me the names of the medications they had received. Then I looked them up — and promptly got in touch with my psychiatrist.
There’s nothing I can take to counteract the side effects, which explains why medications haven’t worked after my past procedures. So, I’ve been dealing with the mood fallout from the two procedures, plus knowing that I have two major surgeries coming up — and trying to figure out a safer plan for anesthesia for those procedures.
I still don’t know when these procedures will be, which is stressful enough — not being able to make plans. But on top of that, I still don’t have the paperwork I need with my lease to have a caregiver stay with me. The accommodations I needed made to my apartment were finally approved by the unit owner, but it turns out they’re going to take at least another week before they can be implemented. My health insurance’s case manager was reassigned and the new one hasn’t returned my calls. My local courts keep pushing my divorce hearing back due to covid and my lawyer has stopped communicating with me. My Social Security advocate suggested postponing my Social Security hearing (that would have been in May), so I did — and now my advocate has quit, saying that he’s retiring.
I’ve also been playing go-between for two of my doctors, as my neuro-uro-gynecologist has declared that I don’t need my spinal cord detethered (which would be performed by my neurosurgeon, who says I do need it) and that I need to get a neuro-stimulator implanted on my sacrum instead. My body has rejected every implant I have had, so I’m a bit hesitant to get the implant, especially when my neurosurgeon says I need the surgery before considering the implant. They’re supposed to communicate with each other sometime between last Thursday and next Thursday. In the meantime, the neurosurgeon’s office has started the paperwork to get the surgery booked in July — but I need to have the reconstructive pelvic surgery first and that office still isn’t booking surgeries.
For each surgery, the hospital has a no-cell phone policy because the signals interfere with the equipment. I’ll be in the hospital for a minimum of three days for each surgery and because of covid, I won’t be able to have visitors. Also because of covid, I won’t be allowed to bring any personal items into the hospital with me. Three days minimum, each time, of lying there in pain with no distraction. I’d rather chew my arm off, frankly, but the alternatives are grim. The longer the spinal surgery is delayed, the further my paralysis progresses. I already have to catheterize myself, so I’d rather not make the situation worse if it can be avoided.
Additionally, in May of 2019 I had esophageal surgery. At that time, the endoscopic grading of my gastroesophageal flap valve was a I (low, normal). I had a hiatal hernia corrected then, too. The procedure on June 11 of this year revealed that my hiatal hernia is back (which I can feel, so it was of no surprise to me) and that my gastroesophageal flap valve is now “floppy” — a grade II, just at the cusp of III. The test I had yesterday, June 19, showed that my esophageal motility disorder has progressed.
All of this means that the esophageal surgery I had in 2019 — a Toupet fundoplication — isn’t working. Not surprising, given that Ehlers-Danlos can cause everything in the body to overstretch. But if my esophagus continues to jump in grading and the dysmotility of my esophagus continues to worsen, I may eventually have to have 90% of my stomach removed and a permanent gastrojejunal feeding tube put in, as the prior preventative surgeries have failed.
Between the very real possibilities of one day needing a stoma to get nutrition and a stoma for urinary diversion (the latter of which is particularly possible if the paralysis gets worse), I’m trying to hope for the best while mentally preparing myself for the worst.
I can’t catch a break, unless you count the continual breaking down of my body. So, yeah, I’ve been rather quiet, keeping to myself while Nero fiddles, hoping for a break in the fires.
In case there was any doubt, I am 100% on board with police, prison, and institutional abolition. But I can’t contribute to any of that very important work right now. I’m trying desperately to support my own needs and am falling short every day. If I had more of me to give, I would, with every bit of passion that I have. Right now, I just don’t have it and that pains me to lengths I can’t begin to describe.
We often are told, “put your own air mask on before helping others.” Right now I’m still trying to find my air mask. When I finally have my own shit covered, I’ll be back to being a pain in the ass of more than just my medical team. Until then, I hope there are folks who know I want to be with them while doing the (very needed) work. It’s been a long time coming and it can’t wait any longer.