A Pile of Crazy

I am still sick. This flare has been so nasty with the fatigue. The vertigo has gotten better, but I am still dealing with trigeminal nerve pain around/behind my right eye, shy bladder, weakness in my right arm, and weakness in my left leg. My walking is worse. Stairs are getting pretty sad!

My left leg is so much worse today. Spastic, painful, weak. I thought it was going to give out on me.

My left ear is getting better! No stabbing today for two days, just aching. However... Over the weekend, my right ear got sore. It has not gotten to stabbing, but when I realized there was junk coming out of it, and the junk smelled nasty, I started putting drops in that ear, too. I did not even go to the doctor. I was not about to miss work and pay $35 for it. I know the clinical study would like me to do that, but they will have to get over it.

Another issue is my idiot brain. My brain is seriously so dumb lately.

Case in point, I ran out of my reflux medication a week ago. I looked for a new bottle but could not find one. So... For some reason, I did not go to the store. I thought I had gotten the medication and lost it. I did not know what to do about that, so I did nothing. It took a few days for the lack of medication to affect me, but by Friday night I was really feeling it. I am ok as long as I am sitting up, because the problem is hiatal hernia. If I lie down, my stomach acid spills right out into my esophagus. Saturday night I had some trouble falling asleep. Sunday night I took two hours to fall asleep and then woke up every hour or two. No!! Not again!! Then last night I took four hours to fall asleep and woke up every half hour. I got four hours of sleep... not four hours straight: four hours total.

The problem with not sleeping enough is that it makes my brain dumber, and it makes my body not work as well. Bad cycle.

I was sort of unmotivated to take the reflux medication, because it is a strong drug--I did not respond to several other meds. Figures. I have been on it for three years, and I do not want to take it forever. My internist wants me off it. But the esophagus is not made to hold stomach acid, not to mention what happens if it escapes the upper esophageal sphincter to heads into my lungs. I looked up YouTube videos on how to cure hiatal hernia. I think I can do it, but it might take time.

Meanwhile, I need to sleep. I decided to renew the medication. Hope that I was remembering wrong and had not already gotten it and lost it. Beg the pharmacist to give me more.

About 5:30 this evening, I remembered the medicine. Problem: I could barely walk, and I was exhausted. My best friend asked if I wanted her to drive me. I could not decide whether to go or just forget about it for another day. (Idiot brain, see?) While I laid there trying to make my brain work, trying to understand the choices and the consequences of the choices, my friend got my shoes and pulled me up. So I went to the store... and found that I had called in the prescription 8/31 and had not picked it up! I guess my brain was dumb then, too.

But I am not sure the reflux was the only barrier to sleeping. Maybe stress, too? But not being able to sleep makes me stressed. I sure hope I can sleep tonight. Of course I took my reflux medication the minute I got it, but I think it takes a few days to work. I cannot remember--I have missed maybe two pills in the last three years!

Sleep... I need sleep...

Oh, church. I was able to handle the piano thing better. Of course, I prayed. Things went much better, because the regular music leader was back, and she loves to talk. I think she also loves to sing, but she definitely likes talking better. That worked out great for me.

I forgot to bring a pad for the bench. Hard surfaces increase my pain and can make me lose feeling in my left foot. So every surface in the Primary room is out. Maybe I will bring in a chair from the RS room. Or maybe I will just rest on the floor--that is what I did last Sunday. After I had recovered from music time enough to get up. All that effort made me tired and dizzy, so I just closed the piano and put my head down after singing time. It was nice. I am back in a corner, so no one is paying attention.

I tried Nuvigil again yesterday. That might have something to do with my sleeplessness last night. I don't know. I was exhausted by 8:00 pm, so I am not sure. I made notes on the day. Data! Since my brain is so dumb, I need to make a lot of notes if I want to remember things. It does not matter if it is something I am really interested in or was really good or bad, I may forget.

9/10/12
9:15 am: Took 250 mg
10:00 am: Felt a bit more energy
12:15 pm: Dizziness began (maybe my usual fatigue?), heaviness--fatigue
12:45 pm: Came home to rest
1:00 pm: Dry mouth began, continued until
2:00 pm: Anxiety began. Feeling of heart racing sometimes but not sure it really was.
2:30 pm: Back out to work. On edge with anxiety.
3:00 pm: Still have somewhat more energy than usual BUT legs tired, harder to walk. Shaky/jittery feeling, esp. hands.
3:30 pm: Anxiety worse, dry mouth worse
3:45 pm: Home again. Can't do any more--feeling shaky, tired/heavy limbs. Still anxious but tired at the same time. Feel like I want to cry or freak out, no particular reason.
6:00 pm: More tired
6:30 pm: Headache but not as bad as last time
7:00 pm: Feeling much worse. Dizzy, fatigued, a little nausea--wearing off and I'm feeling "normal" again?
7:30 pm: Dry mouth a little better. Fatigue worse.
~1:00 am: Dry mouth went away
*I was able to move around more to follow my students. But the difference was not marked. The anxiety was not constant--it waxed and waned from 2:00-6:00. No hunger again today but I knew to watch the clock for when I ought to eat. Ate lightly because not hungry.

So I have to decide if Nuvigil badness is better than the usual badness. The jury is out. Plus there is the risk of dependency--addiction scares me. But I am going to try this drug again on Thursday.

Clinic appointment this Friday. Nine months on the drug. It is absolutely not working, but I remain hopeful.