Ya know how everyone asks "how are you?" when your sick. Well if you really want to know, keep reading but if you are just being curteous the my response is "I'm alive," as I ponder whether or not I really am.
Yes I think it is highly likely that I will be completely wired to the point where I can't sleep even for one minute. Last night I was lucky to get one hour of sleep which was nice because it felt like four. I'm so used to waking up every five minutes when I do sleep that when I saw I had slept an hour I was happy, and sad. Suffering. An hour is not long enough to sleep. Sleep will always eventually come to save you from your Nightmare life. Most of the time sleep lets my brain take a break from the chronic annoyance of the pain I feel everywhere. Even the most terrifying dreams bring relief as they completely distract my mind from the physical, emotional and mental anguish.
Oh Happy Easter!
After my one hour of sleep yesterday I woke up and took my long list of medications and went to Church. It is so hard for me to sit through church that it feels like im becoming an Easter/Christmas only Mormon. I barely made it from the car to a pew and that's when I knew I was herxing again, after two weeks of iv rocephin a few days of doxycycline, valtrex, diflucan. Will soon be starting mepron and when I gain a few pounds I have to start the antibiotic from outer darkness; Erythromycin. Today has been my second worst day of herxing, falling behind to my herx after taking erythromycin. I have three witnesses of that herx who will attest that I was inches from death that day.
Back to Easter though, I went to church seeking something. Probably hope. And to get all the welcome backs and cheek pinching out of the way. I just moved back into the ward I spent 18 years of my life in so I thought that for sure I would be stuck in the chapel for an hour saying hi and shaking hands with people who had prayed and fasted for me. Luckily I must have looked physically awful and people understood that I was in no shape to chat or have my hands swell up from bone crushing hand shakes. I can barely open my chapstick by myself so I'm not going to shake hands firmly with anyone. I was grateful because people acknowledged us and smiled and knew that we needed to get home. I really appreciate that kind of respect to someone's privacy. I was coherent about the first fifteen minutes of church and as we walked in I saw my non blood brothers mom, looked at me and could tell I was not well then she smiled and got up and bore an honest testimony about sorrow and misery, betrayal and guilt. She has lived in hell and darkness and I think she bore that testimony just for me. She would never be the type to sit me down and say all those things, but I still knew she was talking to me.
I went to church seeking something. Something is what I got, but I could never explain it because even I don't know what I think that something was.
Her testimony is about all I remember, except a few people saying hi as we slowly left the building as I creeped back to the car. One guy even had the nerve to poke me as he shouted "hey, good to see you."
Oh man did that hurt especially with this herx. I immediately responded "you can't do that to me," as I grabbed my side in agony.
I got home and laid out in the sun(with long sleeves and pants) even though I know the sun is not great for me right now it just feels so good to be warm sometimes. So I get really warm as I try to protect most of my skin with clothing.
After roasting in the sun for awhile I stumbled back inside and plopped onto the big blue couch where I remained for the next 4 hours before I absolutely could not bare the joint pain even with strong medicine and strong anti anxiety meds as my skin was crawling like I was going to live through another opiate withdrawal.
So I crawled up the stairs and soaked in a hot bath and read. Finally a little joint pain is leaving my body.
I got into bed and continued reading and I could not concentrate so I laid in bed unable to sleep in a half coma, aware of everything around me but having absolutely no thoughts running through my mind. I stayed in bed for four hours this way before my wife shook me out of it and I was able to get up and take more pills and try to eat.
Some nice friends of ours in the ward brought us dinner and I held it down!
Not much else has happened since then, just been trying to layer natural sleeping aids hoping eventually ill find some rest. Pretty sure I will make it 48 hours with no sleep for the second time in two weeks, in your human time. Feels like two decades to me.