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Thursday, January 15, 2015
So, that is what this thing is called: Stiff Person Syndrome. Weird name for a weird disease. I don’t want to have this. I want it to go away and never come back. It scares me. I scares my husband. It scares the rest of my family. I was running (and winning) fifty mile trail races less than a year and a half ago, and today was the first day in several weeks that I plodded through some “jogging” like steps, and only the third time in months that I’ve tried that at all. I have gone from fairly functional (at least able to walk around and look normal) to having to use crutches to get to the bathroom in less than 24 hours on several occasions. Along with all of that, I am taking major narcotics, benzodiazipines, anti-seizure medicines, and a host of immune suppressing drugs just to function at all.
It has been hard. I don’t really know how else to say it. You see, I think that I have come to realize that physical fitness is my vanity item just like good hair, or flawless skin, or big boobs, or whatever like that is to someone else. And, I have had it taken away from me for right now. And, that has been very hard. I don’t want other runners to “see” me like this. I went through a period where I didn’t want anyone to know that anything was wrong at all, so I feigned injury and said that was why I had to jog along slowly. That started in August of 2013. My physicians, after looking back through my medical records and taking my medical history and all that other crap, think that I have been developing this since at least 2009. I have an episodic nature to my disease. I think that made it harder to diagnose, but it allowed me to continue racing and running at a high level for a lot longer so I am thankful for that.
The other night, Saturday night to be exact, I think I ate some bad fish and that cascaded into a terrible episode that ended with an Emergency Room visit and an episode in the car on the way to the ER where I was certain that I was dying.
I awoke about 1:00am Sat night/Sun morning, felt fine, went to pee, bg 98, ate two bites of a Clif bar just to be sure, and went back to sleep to await my4:00am alarm to take my “pre-meds” for the day (if I take this concoction of meds at 4:00am and then go back to sleep until it is time to get up, I awake feeling fairly normal). But, I awoke at 3:45 am and realized that something was wrong; I didn’t feel right. I checked my blood sugar and it was 40, so I ate two glucose tablets and tried to decide if I should take my pre-meds then and go back to sleep. But, I felt weird all over. Everything hurt and my abdominal muscles kept trying to do that “I just woke up and need to stretch out” kind of stretch.
I woke Bob up and told him something was wrong. After he got past the confusion of being awakened out of a sound sleep, he turned on the light and came over to my side of the bed. My muscle spasms worsened at about that time, mostly in my abdomen, but some in my quads, glutes, lower back, and hamstrings – but mostly quads. So, he helped me check my blood sugar again – down to 32. Okay, two more glucose tablets … and, less than a minute later Bob had to run for the bathroom trash can so I could puke up all the fish I ate the night before … and the glucose tablets that were going to help with my low blood sugar. We tried again …. same result. Then we decided to try to take my 4am meds because the muscle spasms were getting bad enough that the pain was rising quickly. Puked those up, too. Great. We could try glucagon, right? I have it in the drawer of the nightstand. But, I had done a four hour workout on the elliptical the afternoon before, been puking everything up, and probably had zero glycogen stores … anywhere in my body. The glucagon was probably not going to help and would also increase the puking.
We finally decided to leave for the ER. I needed an IV with dextrose in it. Nothing else was going to work. By the time we were driving to the ER, I had been going for about two hours at least with my blood sugars between about 30 and 50 and I started to develop the low blood sugar headache that I have only heard about. So, it is this frontal lobe headache that makes your head feel like it is literally about to split open. It makes you certain that if you do not have some kind of aneurysm, stroke, clot, bleed, or something, that you have a brain tumor that just ruptured a vessel or something terrible like that. I don’t usually get headaches, but I can tell you that this was a straight morphine headache – it hurt that bad.
I couldn’t talk, I couldn’t see really, all I could do was lay back in the seat and roll back and forth a little bit and make unintelligible sounds. And, then I opened my eyes and looked through the front windshield; I noticed that it was getting light out and I could tell about where the sun was going to come up over the tree line. I suddenly got this very, very, very vivid image of a field of sunflowers that a farmer had planted a few years back in a fallow field about four miles (running) from my home. And, if I left the house at the right time with a flashlight, I would be running up about a one mile long hill beside the field of sunflowers just as the sun came up over them. I ran that run almost every single morning that summer. So, I had this very vivid image of that field, couldn’t really see anything else except the bright spots in front of my eyes, and Bob sounded so very far away in the distance. And, then, I thought, “I’m dying.” I thought that was it, the vivid beautiful image, everything falling off into the distance, mu body felt like it was completely spent; I was certain that I was dying. I tired to say something to Bob and he said he couldn’t understand me.
I think I may have drifted out of consciousness for a minute or so there and woke back up when Bob made a sharp turn that slammed me into the car door. The rest of the trip to the ER was a blur, but I do remember the radar detector going off and thinking that we must be passing the fire station at that point.
I did not know that one person could vomit that much over and over and over again. And, finally, of course, the dry heaves started. But, the food poisoning and low blood sugar combo problem was only part of the equation. It began an auto-immune reaction in my abdomen. At the ER, they gave me some IV Zofran for the nausea. That is flat-out a miracle drug. As soon as I could get something down and not throw it up, I took my SPS meds – I guess, in retrospect, I should have asked for them IV but I wasn’t thinking straight, neither was Bob, and SPS is rare enough that the ER doc wouldn’t have though of it. And, of all the things that I was first able to get down and keep down: black coffee. Thank you Bob!!! After they got two bags of fluid in me, and I was able to drink a soda, eat some nutter-butter cookies, and not throw up, they finally let me leave.
And, all of this had happened on the heels of the Lantus fiasco of Friday night (see previous post).
And, of course, I have a whole heap of students, each thinking that I am their professor alone and that no other students exist -oh come on, we all felt that way in college, admit it. I never tell my students when I am sick or give any reasons when something is backed up or late, except to say that there were some unexpected administrative things that threw me off track and I apologize. They have their own life problems and do not need or want to hear about mine. And, I don’t think that it’s fair to do that to students.
I am feeling a lot better today … finally. I am hoping that the trend continues. I plan to stick with my doctor’s medications regimen from now on. I’ll try not to think about the logic of medications and dosages and my size and my level of symptoms and …. I’ll just take the meds and keep on keeping on until my next appointment … or until the next time the clinic’s nurse or fellow calls to see if I’m following instructions.
I don’t know why my auto-immune “stuff” progressed beyond just simply Type 1 diabetes. I worry that something else will be next, something after this SPS, and I wonder what that will be. Honestly, at times it makes me worry that I am dying. It makes me worry that some horrible process has started that is irreversible and that my immune system is just going to kill me from the inside out no matter what we do. Intellectually, I realize that is highly unlikely, but there it lurks in the recesses of my mind. When I was only months earlier a world ranked fifty-miler and then I can’t get to the bathroom without crutches in the middle of the night and have to take high potency narcotics among other meds just to function, and someone has to drive me everywhere because of all my meds … it lurks there, whether I want it to or not.
So, as I have been writing this blog post, I am eating Cheetos. At least, they are the organic ones from Trader Joe’s, but I better stop and check to see how badly they have damaged my blood sugar. I justified it by telling myself that it was something on my bucket list … in case I’m dying or something, you know. Of course, Cheetos have to be on a bucket list.