I am no longer allowed to play an at home doctor, not even on television, as apparently in failing to call for emergency assistance last Monday when I had the severe autonomic crisis and then treating the symptoms myself I could have very well suppressed my respirations to a point that when I finally fell asleep my brain could have "forgotten" to breathe. I had not considered the fact that all of the medications I took to treat the symptoms - pain medication, anti-nausea metication, medcations for spasms in my muscles- have the potential to suppress respitations in a normal and healthy body not to mention in a body in the midst of a hypotensive crisis. Have I mentioned that during these crises my thinking becomes a bit murky and not the most logical, probably because with a blood pressure at or below 80/40 the amount of oxygen reaching my brain drops a bit. My neurologist, my amazing and wonderful and incredibe doctor, pointed out my incredible stupidity to me, and in a very nice way. So now we have a plan for how to deal with these episodes and I have in writing a very basic procedure for any emergency care physician to follow should I need to call for emergency assistance. One of the reasons I did not call 911 was because I know that at the local hospital they have never treated anyone like me and I did not feel good enough to talk them through how to do so without killling me off. It is difficult being so complicated.
I also got in trouble for stopping a medication without permission because unbeknownst to me it is also used to regulate blood pressure in people with dysautonomia (that is not why I was started on it or was taking it) and so I was informed I am not to self adjust my medications anymore without explicit physician permission. Oops. Lets see, I also learned that it could take weeks to recover from that big crisis which may explain why I have been so fatigued, so much weaker, why the spasms have been worse, why I have been so nauseous again, and why I have had no appetite (although that does not seem to be slowing down the annoying weight gain - ugh!!). And that is as long as I do not have any more episodes - which I already had an average one last night that I treated appropriately where my blood pressure dropped to 90/38 and stayed in that range for about 3 hours. I pushed fluids, laid down, and monitored it with the plan in mind to call for help if I felt worse at any point. At no point did I feel like I was losing consciousness so it was not a horrid one.
We are also going to do pulmonary function tests since I have been more short of breath since the crisis, and it appears based on the asthma meter given to me in the hospital last December my lungs never returned to full function after that hospitalization. I do not have asthma, but my diaphragm was impacted by the severe muscle weakness. Other than that we are awaiting the results of genetic testing, I see the top specialist in the progressive spastic paraplegia in December, and after that visit I regroup with my nerologist who mentioned a possible assessment at an MDA clinic if we do not get a firm diagnosis from the PSP.
Today I go get my wheelchair, in just a few minutes we leave and I am very excited. Oh, and I also have to restart physical therapy because my legs are too tight - I can not straighten my knees anymore which makes standing hard and walking any steps harder because I rely on locking my joints for stability to walk.
I will update with info on my new chair and hopefully pictures later. I am such a dork excited about my wheelchair!