Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:13

Monday, November 14, 2011

Makes sense

I ...ah, interrupted as I am DAILY about this time, the hardest time of the day right now when I have to keep myself awake for med time to stay on schedule, by a call from my graduate school.  I know they want money.  They got plenty and I don't like them much.  So I don't answer.  Yet they keep calling and one day I will lose my temper and answer and it will involve me holding my breath trying to say I don't answer (and pointedly hang up on you often) because I don't want to talk to you.  Go away....

Anyway, before that, I had a sudden realization last night. Friday night I was horrified to realize that my increased asthma symptoms were because I had never yanked my steroid maintenance inhaler out of my bag after my sleep test so I went about 5 days without it, which is bad.  Yet I realized something else....steroids tend to agitate me.  I get very little systemically through the inhaler and have not had trouble in the 9 months or so I've been on various steroid inhalers.  (Steroid pills are what I fear).  Yet there was a strange "coincidence" last week.  No steroids the same week that I finally, after multiple treatments over several months, started sleeping deeply and long.  I now think that when in the wrong position I can be sensitive enough to be effected by my inhaler.  It doesn't matter, I have to use it and probably always will, but it's good to know that we may need to consider it as a probablem sometimes.

Today I didn't nap and slept around 12 hours.  We'll see how I feel by Thursday (tomorrow and Wednesday are busy-ish) but the goal is to slowly come down to normal sleep.  Right now I could easily go to sleep except I need a shower and have to wait for the washer to finish using hot water.

I had a call on Friday with a message left to call a specific person at my pulmonologist's office to set up a time to come in for my sleep study results.  I called today.  At first their computer systems were down, but she called near the end of the day to offer me the "first cancellation we have", which is Wednesday.  I suspect this means I'm a sleeping failure as they seemed very interested in getting me as soon as possible and if I did fine this wouldn't matter as no treatment would be involved.  If, though, I stopped breathing every 5 seconds, they'd want to fix that soon.  I hope they can get the Cpap started now so I don't have to deal with that as I'm trying to go back to work.  I really, really hope.  I want to whine about the Cpap thing, but I won't until Wednesday.  Ugh.

I got an email from the girl I was in the hospital with.  She said the one who gave me fake information asked about me.  I think she was telling me that as a way to help the hurt feelings.  Which was nice.  I feel so different about that now though.  Yes, it was not nice.  But why I expected much different from someone I was in the psych hospital with is another story.  It's called the psych hospital for a reason.  I was not at my best and can hardly expect that anyone else was either.  I took too much out of my friends' being kind to me and continuing to include me when I couldn't do normal things to mean I was totally one of them.  And I wasn't.  Partly it was because I was highly agitated and manic until I was drooling, couldn't see and was slurring my speech, partly it was because my disease isn't the same.  The one who gave the fake info asked me why I focus so much on monitoring things.  Good question; they work hard to teach the depressed people not to do what I have to do to function.  I live my life around monitoring and watching for parameters.  3 nights without 5 hours of sleep, notify the dr.  Mood swings that I feel are growing, get to dr. Mind ASAP and probably increase sessions for a bit so he can watch. Etc.  Part of why I got so extremely sick this time is that I did not do the "THIS IS SERIOUS" thing and call Dr. Brain and leave a message.  I don't know why I hate doing that so much, but I will be much more careful from now on.

Anyway, it's about pill time which also means fighting to put clean sheets on (I am truly bad at this, I do it wrong several times every single time) and taking pills and then a shower.  Hopefully the washer is about done sucking up all the hot water.  It's an HE machine and it really doesn't use much hot water, but (I hope this ends with a hair cut tomorrow) I have been having a problem with large amounts of hair falling out and tangling terribly.  The only way I can control it is to put on a ton of conditioner (hint:  Suave has come out with these "professional" conditioners that cost about $2 and work as well as the expensive stuff and when you are putting about 1/4 cup of conditoner on your hair daily that's important) let it soak in for about 5 minutes and then comb out all the dead hair and the knots it is tied in.  If I don't do this my hair is absolutely impossible to comb dry.  But my hair hasn't been cut in so long I'm embarrassed to go in, especially since I've cancelled at least twice during this nightmare and while that's understandable it's hard to explain:  my anesethesia made me crazy and the med to treat that made me crazier are so "the dog ate my homework" of missed stylist appointments".

I sort of hate to do the sheets because it means moving Old Cat.  She sleeps 99% of her life away in a bed purchased for my much larger cat and therefore very large for her on an eletric pet warmer.  It helps her arthritis.  Except the last 2 days the other cat realized he'd like HIS turn in the big heated bed and so he's been kicking her out about now.  She spends the rest of the day hissing if he comes near, but he sneaks in while she eats.

And oh crap.  We have a tornado watch and high winds just started and I need to to find flashlights etc.  Just as I wrote that the power blinked......




2 comments:

Jean Grey said...

I really hate that self-monitoring- but at times it is necessary. My first few years of relative stability, I adjusted meds constantly- and did well, at the price of sometimes being overly aware of my symptoms. I think that now that my brain has some years of stability, I don't have to watch it as much. And I try to accept more negative feelings (DBT and Acceptance and Commitment Theory). But that said, I do use prn's occasionally and just recently had to add on wellbutrin for a depression- so I'm still more interventionalist than I'd like to be with my moods in terms of meds, but becoming less so. By the way, I recently came off of Abilify due to akathisia.

Just Me Jen said...

Abilify was my first diagnosed askathesia. I had one before that but without a doctor as I'd fired mine and not found a new one so I stopped the med (Prozac) myself. I only took it a couple days before akasthesia and a complete inability to balance and stand up without falling stopped it. It was nasty although this last was much worse because of all the ways we tried to treat it since I had no reasonable med change to cause it, until the reglan idea hit.

I agree I monitor a lot less now but am also expected to have kind of a daily quick inventory. Partly this is so that i don't analyze too much unless there is no way to take data to Dr. Mind. Generally i collect information, and we discuss where that puts me and then I contact Dr. Brain as needed or if I decide to change something (except now). That keeps me from worrying much of the time because I used to be terrified of every big shift until Dr. Mind helped me see how often those occur and that I'm nearly always fine. I have a lot of meds that I used to have freedom to adjust that I can't for several more months akasthesia-free. I have 150 mg of Seroquel to play with (normally). I have 2 PRN mgs of klonopin with one generally taken as a scheduled when working. I've had some amount of vistaril but don't know if i'll be able to take it again or not as I got very hyper on it in the hospital. I usually have sleeping pills in the house but rarely take them. I have valium for sleep or panic attacks but have built up a tolerance to it in this nightmare. So I have a fair number of ways to react fast if i need to. Or I will once we're past this precautionary period in 3-5 months. Well and that's when I come off meds for akasthesia so probably longer until we're sure I'm ok.

ACT is one of my favorite treatment strategies that has been used with me. Funny thing is that the person who treated me with it hadn't heard of it and sent an email several years ago about look at this and tell him what I thought. I thought it was precisely how I was treated. He's a bit disappointed he didn't publish it first...:) I've not done DBT although I think Dr. Mind uses some parts sometimes. We have a very whatever works approach.