I am aware that I am less than some people prefer me to be,
but most people are unaware that I am so much more than what they see.
— Douglas Pagels

Sunday, February 11, 2018

Things are bad at the moment.

I'm not going to go into major medical detail right now, but I have had a pretty bad episode, and I have been bedridden for several days. The pain was a 10 on the pain scale for a little while, as heard by my screaming and probably scaring the neighbors (hopefully they didn't hear me, but that's unlikely). I had my thumb on the button to call for an ambulance for a few hours, but I didn't go through with it.

I am, however, having to sedate myself to escape the extreme muscle pain I'm in. Most of my episodes are paralytic in nature, but sometimes my body surprises me with an episode of myotonia. This is what happened, which nearly resulted in passing out because of the location of the muscle; a vertical muscle running down the back of my head, neck, and shoulder blade. I haven't been able to turn my head since late night Friday. As of this morning, I can turn it about an inch. I have been successful in shuffling across the hall to the bathroom, and to pour water to take pills. Swallowing pills has been a battle...I'm amazed how challenging that is when you can't move your head at all. At any rate, I eventually get them down. Otherwise, I'm in a crumpled pile of agony on my bed, alternating between lying on an ice pack and a heating pad.

This episode is in addition to the bout of gastroparesis that was already making me sick. Gastroparesis is digestive paralysis, caused by a number of conditions. In my case, I assume, it's a result of muscular dystrophy (primary periodic paralysis, if you're new here). I ate a few pretzel chips yesterday. I'm drinking protein drinks today. That's all I've been able to do. My digestive system is a huge issue, and sometimes I think it's going to kill me way before MD does.

The medications I am currently on to deal with all of the above are making my body weaker (as I have complained about in previous posts...most medications aren't very safe for MD patients), but it's either take the meds right now and hope for the best, or find someone to put a bullet in my head. That's where I'm at. I'm being as cautious as I can, and it is a well-proven fact that I am safer at home than in a hospital subjected to protocols that don't acknowledge the risks of my rare disease.

In summary, some parts of my body are contracting too much, and some aren't contracting enough. If you know anything about that, you know that means absolute disaster. Thanks for thoughts or prayers or whatever it is that you do. I don't know when I'll be back, but I'll be back.