Tackling New Chronic Health Problems
It has once again been more than a year since I posted about my chronic health problems on this blog. That happens when I have made no meaningful progress, and therefor feel like I have nothing new to write about. I do occasionally vent or rant on my personal Facebook profile, which is also where the latest developments to my health unfolded in the public eye.
At 10:30pm on April 1, 2022, I got the worst kind of April Fool’s gift. My body broke, very suddenly and dramatically, forcing me to start anew with addressing my health from another angle. All I did was stand up from the toilet when I was preparing to go to bed, felt a tiny pop at the base of my spine, and suddenly I was engulfed in level 9 pain based on the Mankoski pain scale. Thanks to my extensive experience with very high pain, I was barely able to manage taking some NSAIDs and eventually hobble my way to bed. I expected to feel a little better in the morning, but instead I felt worse and could not walk without assistance, even for very short distances within my home.
Seeking Help at Hospitals
Saturday morning, with great difficulty and much assistance, I was maneuvered into the car and taken to the nearest emergency room, where to my horror I discovered that the hospital an ambulance would take me to from my home was a completely and utterly useless shitshow.
My partner was not allowed to stay “because of covid risk”, but I sat for the next three hours, trapped in a very painful wheelchair, with no assistance and no social distancing, in the same exact waiting room as antivaxxers who were waiting for their covid test results before visiting people staying in the hospital.
When I finally was taken into the emergency room I was placed in a broken bed, given a CT scan that predictably showed absolutely nothing, and generally ignored even when I yelled for help because the broken bed was making my pain even worse. I asked for water multiple times, was told no problem, but only brought water once. I asked for assistance using the restroom multiple times, but that didn’t happen until I was about to be discharged and my bladder was about ready to pop.
I was in that hospital for a total of eight hours, had pain medication shoved at me, and was sent packing because they refused to do an MRI. Opiates were, of course, the first thing they tried to give me, but I refused to take them because they make me sick, and violent contraction of my abdominal muscles plus vomiting on myself because I couldn’t make it to a bathroom unassisted was definitely not going to help my situation. So, they gave me a very large dose of valium, had me walk a short distance in a walker, declared their efforts a success, and sent me out the door.
I did not have a primary care physician because I had changed insurance carriers right before covid hit. Since I live in a heavily covidiot area, I was very nervous about going into any doctor’s offices while the pandemic was completely uncontrolled, and honestly had not gotten around to taking care of that since being vaccinated. I started the process of finding a new PCP, but I knew it would take at least a couple weeks to find one that took my insurance and get an appointment, let alone get any tests or treatment.
Over the next two days my condition continued to worsen. With tremendous difficulty I was using two canes to get myself between my bed, the bathroom, and the livingroom, and I was uncertain how much longer I would be able to manage that much. So, I checked for other hospitals in the region that took my insurance, and got a ride to the UC Davis Medical Center ER on Monday evening.
I went from just about the worst possible care to the best, just by being particular about what hospital I went to. I still could not walk without assistance, and only very short distances with assistance, and my pain was steadily in the 8-9 range. They immediately ordered an MRI, and offered non-narcotic IV pain medication that helped take it down one notch while I waited my turn for the MRI.
My diagnosis was degenerative disk disease in the L5-S1 verterbrate.
As it turned out, there was nothing more they could do for me other than offer Meloxicam (a very strong NSAID), but at least I went home with a clear answer as to what was causing the pain, so I could more effectively calm the current flare-up and seek long-term treatment for this new chronic condition.
Chronic Complications
This diagnosis did answer some puzzles in the past year or two of my longer-term chronic problems.
My bloodwork has been improving, especially in the last year, which implied that my chronic symptoms should have been improving. Instead, I was experiencing the opposite. I was having worse tremors, more frequent seizures, and increasing frequency and intensity of high-pain episodes.
It is very likely that the chronic symptoms were both masking, and being aggravated by the new problems developing with my spine. I have known for a very long time that when I experience pain because of physical injury, it will spike the chronic pain that is neurological in nature. Basically, my body, which overreacts to just about any little thing anyway, sees that there is something to genuinely deal with it, and instead of just dealing with it, does the equivalent of freaking out and making everything worse than it needs to be.
So, it is extremely likely that when I experienced less severe flareups of pain from the disk degeneration, it was creating those flareups of the chronic pain.
I cannot say for certain, but I suspect that the pain levels from the disk degeneration on that flareup were so intense because of the interaction with my longer-term chronic pain.
But, no amount of awareness is going to change the fact that pain exists, or that my longer-standing chronic problems exacerbate everything, so this month has been occupied almost entirely with being careful of my body or trying to get medical treatment.
Once I am able to get this new problem fully managed, hopefully through physical therapy and pain clinic, I am hopeful that the longer-term chronic problems will also ease up.
Adjusting to New Chronic Problems
The very good thing that came out of the second ER visit was that I could specifically make accommodations for myself that would help calm the current flareup, and set the stage for long-term management. From a spiritual perspective this is not unlike starting over again learning how to deal with a new disability. I may be starting over from experience, still carrying all the problems of the preexisting chronic illness, but I am having to approach things from a fresh perspective.
It did not escape my notice that the flareup, and subsequent diagnosis, started on the eve of April Fool’s Day. The Fates definitely do have a sense of humor.
I ordered a back brace made specifically for my problem, and am seeing about buying a couple corsets that actually fit me, so I can have comfortable and strong back support. I am being careful not to lift much, and as infrequently as possible. I’m taking pain medication as needed, including lidocaine, Meloxicam, Tylenol, and high-CBD tincture, to help make it a little more bearable. I’m also avoiding riding in a car very far, since the vibration of the car as it drives makes the pain worse.
It took a couple weeks to get that flareup completely under control, I had about one week of feeling almost normal (for me) pain levels, and then I overdid it while trying to be careful and created another flareup that I am dealing with today (as I write this, and likely for the next few days at least). Thankfully, this flareup is nowhere near as intense as the one that sent me to the ER. I’m at about a 6 on the Mankoski scale as long as I am sitting and wearing my back brace, and using lidocaine, meloxicam, and a high dose of CBD, but it spikes to a 7-8 the moment I stand or move wrong, and I have no doubt it will return to a 7 background when the pain medication loses its efficacy in the next couple hours.
Insurance Problems
It took a couple hellish weeks of phone calls and internet searches to find a new PCP that took my insurance and get an appointment. That appointment went well, and several referrals were promised, including physical therapy and pain clinic. Unfortunately, the referrals all fell through because of insurance problems. None of the offices I was referred to take my insurance, so now I have to go through another round of phone calls and internet searches for each type of office, until I find ones that take my insurance, so I can pass that information back to my doctor’s office, so they can issue new referrals.
That means I have absolutely no idea how many months it will be before I can get appointments for physical therapy and pain clinic. I don’t know how long it will take me to find offices, and then I have to wait for the doctor’s office to send the referrals, then it will take approximately a week before I can make the appointments, and then it could be as long as a few months before an appointment is available.
I am not willing to wait interminably on the “health care” system in the USA.
So, I went to YouTube and looked up physical therapy exercises for the lower back and pelvic floor. I have some issues with weak urination, which combined with some high inflammation in my low back muscles shown in the MRI, implies that strengthening my pelvic floor in particular may help my body compensate for the degeneration.
I am, however, being mindful of the fact that I ideally should start any physical therapy under the supervision of a physical therapist. So, instead of starting with a handful of exercises, I am starting with one and making sure I have it down before adding another. I expect to take 1-2 weeks between adding each exercise, and am doing the exercises 2-3 times each day. This will give me the ability to know how each exercise is impacting my body, so if I do run into problems I won’t be wondering which specific exercise I am doing wrong or isn’t helping.
This is the video I am specifically starting with, and so far I am only doing the very first exercise, the pelvic tilt. I am not noticing any difference in my condition so far, but I am getting a feel for how those muscles move and how to isolate them for the exercises, which I consider very important for successful management of my condition.
Impact on my Writing and Sigils
Today is the first day I have managed to do any writing, and I felt it was important to inform all of you about why my blog went so quiet again so suddenly. I am hopeful that I will resume creating sigils and writing new articles in the coming weeks, but of course I cannot promise anything.
I have been continuing to publish Toxic Blood every week because I prepped it in advance. All I have left that needs doing on that project is the last four videos. I had not intended for it to dominate my blog, but nothing else is currently ready ahead of time, so that is all I have been able to manage. It is a limited project, and about half-way published.
I also sent in my regrets to Between the Veils, that I will not be able to attend or present at the conference this August. It is a shame that covid prevented the conference from happening in February as originally scheduled, because I would have made it on the original dates. While there is a very slim chance I will be up to attending in August, that chance is so slim that I do not want to risk leaving them hanging. Not only am I uncertain if I will be physically capable, the money originally intended for hotel and other expenses during the conference is going to needed accommodations that are, of course, not covered by insurance.
Since my tickets were purchased before I ever applied to present, my best hope right now is that I will manage a day trip to the conference, but even that is iffy at best.
Crafting and art projects are almost entirely stalled out right now because the extremely high pain levels are triggering seizures and increased tremors. I did pull out my black and yellow corset because it is the only one I have made for myself that fits me at my current size, but it needs some work. The way I rigged the bust to hold it in place did not work well (it wanted to fall forward, and was creating peek-a-boo moments on my nipples), so I will be hand-stitching straps to hold it in place. This is something I have wanted to do for years, but never got around to. I am currently motivated to get it working so I can wear this corset as a back brace.
I am hopeful of being able to do other crafting projects, if I am very careful about ergonomics and lifting, but we will have to see how that goes. With increased pain, I have less energy and less mobility. I also have medical arrangements taking up some of what little energy I have. So, I have to take each day one hour at a time.