When I was in 8th grade we went on a class trip. Not long before we were to leave my roommates dumped me for someone else. I insisted I wasn't going. My guidance counselor, who had long appointed himself my caretaker (seriously the man spent at least a year, maybe 2, watching for me in the hallway and every time my head wasn't up confidently I was sent to the other end of the school to walk correctly, then given a pass explaining I was doing a self-confidence exercise. Worked though and is probably part of why I am able to make better eye contact that most bipolars) told me oh no, I WAS going. There were 3 of us without roommates, a girl I'd always gone to school with and had nothing in common with, and a new girl who was attention seeking with overtly sexual actions, constantly. I continued to say no and somehow I wound up on that bus. Later I wound up in candystriper training with her, despite being frustrated by her frequent lies. Somehow, probably because I was a fairly lonely kid who didn't fit in and also had no idea when I was being manipulated, mistreated, or used, we became friends, of a sort. I never would have called her a "best friend"; I had those. We had little in common. I was not mature enough to see how she used me. She tried to duplicate everything I did/had, right down to once bursting into my counseling session with CPS to insist she had to talk to the LSW right then. I won. I'd develop friendships and she'd shove her way in as far as she could. She cheated on me with the only boyfriend I had in high school. She'd break things at her home and tell her parents I did it. She even went so far as to try to switch instruments in band to be with the trombone section, consisting of me and 2 of my best friends. Once she ran away and after days of being questioned, crying, stressing, I overheard where she was and reported it. She was home very soon after. She had a miscarriage when we were 15 but was pregnant again by January of our senior year. (Thankfully not with my ex-boyfriend). Somehow that was how we spent more time together again. She was living a few houses away from where I was cleaning out my grandmother's house after her death and so it was natural to be at her house, I guess.
Throughout college and grad school her out of control drinking resulted in many hours, often in the middle of the night, spent talking her down. By the time we were 20 she was pregnant again. I think it was about then that I talked her into seeing a therapist. It didn't last long. Soon after that I talked her into trying for at least an associate's degree. She did well the first year and was accepted into nursing. Sadly she also discovered the internet and suddenly all of my concerns about her drinking made her realize "oh, wow, there are AA chat rooms and some really filthy conversations!!!". She got so into that she failed nursing school. She did go to AA meetings for real and allegedly made progress, but well, one evening destroyed that illusion. She called and asked me to babysit so she could go to AA. Eventually it got so late I called my mom to tell her I wasn't coming home. I was getting really worried when the phone rang. It was a state trooper who franctically wanted to know where the kids were. She started sobbing. My "friend" had lied to me, driven hours to meet this internet AA person at a bar, and while driving drunk had a bad acccident. Her car seats weren't restrained the they had been looking for bodies before her ID surfaced and allowed them to call.
So, back to court-appointed AA. I think she maybe quit drinking for a little bit. It's hard to know as I moved 10 hours away. What I do know is that within the next year she convinced me her husband was hitting her (you'd have to know the man to know how unlikley; I've known him since I was 5. But anyone can be an abuser so I believed her). I found a shelter for her, helped her set it up, and then she went. Without her kids. This did tweak my antennae but for 2 days I believed her reasoning. The 3rd day the shelter said I talked to her to let her know she wasn't allowed back. She'd simply taken off. This led to phone calls from her husband, her parents (who accused me of lying) and the police. I had no clue. Nobody believed me. Months later the phone rang and there she was. She had gone to stay with random chat pals in NJ and was expecting everyone to accept her back. I did. But soon after the drinking, 3 AM calls and all the drama were too much. I said no more.
Several times over the next few years I relented. Each time I got hurt. The last time I heard from her had to have been about 8 years ago and did not go well. (That time she manipulated my email address out of my sister who was student-teaching her daughter at the time). After that I got kind of hard to track. She told me then she was diagnosed with borderline personality disorder (she is the definition of it) and bipolar.
Well, stupid facebook. She found me and messaged me. I ignored it. So she send a sad story to a friend of mine that she also knew in high school to get him to talk me into contacting her. No go. So she sent ANOTHER message today, this one referencing "the good old days" and applying a lot of guilt about how she's had 12 surgeries in a year, etc. Not once in any of this did she ask how are you, anything. So I was going to let it go but I know she'll continue to bug me. So finally I decided to say no. I made it clear that any attempts to message me would be reported as harrassment, that bugging my friends is harrassment, and that any attempts to contact me in person would result in a restraining order (since my page makes it easy enough to find me).
I feel crappy but I also feel like I did the right thing. I didn't let her keep going, I stated how it was, the end.
We'll see.
Monday, October 31, 2011
It's ok
I had my meeting today at work. I was scared but it was fine. We all agreed I can't do it yet. For me the deciders were having a patient ask why I was sad when I was riding along Friday, and how intensely hard and draining paperwork was. There's no way I can keep up with patients and they don't want me to try and fail because then it gets into discipline for missing too much work when I wasn't ready to be back anyway. So Dr. Brain and I worked out a very nice plan where I'll be off about 2.5 weeks, then have 2 3 days weeks because I'll start on a short week followed by Thanksgiving, and the next week is my sleep study so I'll be off one day and so that means a 4 days week that week. So I won't have a 5 days week until December.
This lets my body re-learn sleeping. Last night I actually fell asleep on my own without meds and slept about 8 hours. Tonight I suspect I'll need a pill; it was stressful day.
This was hard to admit to, I hate saying I can't, but I truthfully didn't have to think much. After months of little sleep and no quality sleep it's very hard to jump back in when I'm still so incredibly tired. And my brain isn't working as well as it needs to yet, which is probably partly sleep and partly askathesia related. My brain chemisty has been through SO much in less than 2 months, possibly more than any other 2 month period in my life, and that is saying a LOT.
So I'll be hanging out at home for a while longer, and glad of it.
This lets my body re-learn sleeping. Last night I actually fell asleep on my own without meds and slept about 8 hours. Tonight I suspect I'll need a pill; it was stressful day.
This was hard to admit to, I hate saying I can't, but I truthfully didn't have to think much. After months of little sleep and no quality sleep it's very hard to jump back in when I'm still so incredibly tired. And my brain isn't working as well as it needs to yet, which is probably partly sleep and partly askathesia related. My brain chemisty has been through SO much in less than 2 months, possibly more than any other 2 month period in my life, and that is saying a LOT.
So I'll be hanging out at home for a while longer, and glad of it.
Sunday, October 30, 2011
you've got to be kidding
I slept so long and well last night that I truly thought lunesta was going to solve things. I was even thinking about things like talking to work about extending disability through this week to let me sleep then reassess. Um, why do I remain eternally optomistic about sleep meds? I am having no sign of tonight's dose working. One night.
I don't know what God is telling me aside from never believe that any aspect of this stupid disease is resolved.
Ugh.
I don't know what God is telling me aside from never believe that any aspect of this stupid disease is resolved.
Ugh.
Saturday, October 29, 2011
If only
I usually don't take meds without reading about them. This Lunesta I tried years ago I knew I liked it then, plus I was so desperate it didn't matter what it did. However, I noticed early on that random things tasted really weird today. Like water. So I was checking that out and reading about it on rxlist.com when I saw this paragraph:
I remember that psychiatrist once talking about referring me to a neurologist with sleep specialization. Then he decided that he knew what they would found, and just sedated me. The "just sedate, antidepressants when needed" thing lasted for a long time before I gave in to long-term antidepressant use (unfortunately by then I was developing mania).
That psychiatrist wasn't the best, nor were the next couple, and there was a good long period when I was treated by family doctors for depression. I think ambien was considered so mild that nobody worried much.
I know that paragraph wasn't in the paperwork back then. I thought the kind of insomnia I had was normal enough; it had lasted my whole life after all.
I wonder if that would have changed anything for me.
Because sleep disturbances may be the presenting manifestation of a physical and/or psychiatric disorder, symptomatic treatment of insomnia should be initiated only after a careful evaluation of the patient. The failure of Insomnia to remit after 7 to 10 days of treatment may Indicate the presence of a primary psychiatric and/or medical illness that should be evaluated. Worsening of insomnia or the emergence of new thinking or behavior abnormalities may be the consequence of an unrecognized psychiatric or physical disorderMy history with sleep is complex as I have never been good at is since I was 3 days old. If I am depressed or manic it gets worse; when I do well and my meds are right it stays pretty good, or at least it has for the last few weeks. Back when I was undiagnosed and appeared to just have major depression that flared up with insomnia every so often I usually was treated first for sleep. That is how I've been on ambien so many times and at such doses that it just doesn't work for me. Maybe a few days, but that's it. I can't remember how many years it has been since ambien even worked for a week. To make this worse in grad school I convinced the psychiatrist to use ambien rather than antidepressants unless I was clearly depressed, not just in the early stage of it, insomnia. So I used it a good bit back then.
I remember that psychiatrist once talking about referring me to a neurologist with sleep specialization. Then he decided that he knew what they would found, and just sedated me. The "just sedate, antidepressants when needed" thing lasted for a long time before I gave in to long-term antidepressant use (unfortunately by then I was developing mania).
That psychiatrist wasn't the best, nor were the next couple, and there was a good long period when I was treated by family doctors for depression. I think ambien was considered so mild that nobody worried much.
I know that paragraph wasn't in the paperwork back then. I thought the kind of insomnia I had was normal enough; it had lasted my whole life after all.
I wonder if that would have changed anything for me.
In short
Mostly importantly, the zillionth pill we've tried worked and I slept all night and most of the day. I feel SOOOOOOOOO much better, although definetely ready to sleep more.
What I referred to yesterday and don't want to be too involved about right now because I don't wnat to leave the ultra-relaxed, gonna sleep soon state of now, is just that I have a meeting Monday with supervisors to figure out if I'm ready to work, what I can take on, and how to best handle this so I stay healthy because they don't want (ie I can't) go through the constantly sick thing of last year. So figuring out the right thing is going to mean my job. This last year has been unlike anything I've ever known, but they have no reason to know that except from my saying it. I don't typically take sick days ever. To make it harder, because of how far away I live from work there have been times I've relied on the ability to trade a day with a Saturday. That's no longer possible. This makes working so far from everything potentially difficult (means everything like dentists etc get hard to fit in). I have no idea what the solution is, or what they want. I also don't know if there are things that are going to come up that are things I've done wrong/screwed up b/c of sickness. I don't necessarily get that impression, and I know the options they are providing to help me transition are way above and beyond, but I also know that the hardest thing about this is that I can't say "I'll be all better in 2 weeks" or anything of the sort. Akasthesia isn't that predictable. Having gotten sleep I feel better but it's going to be a while before I'm done resting.
So, I'm anxious about that. I'll be so glad to get to Monday.
What I referred to yesterday and don't want to be too involved about right now because I don't wnat to leave the ultra-relaxed, gonna sleep soon state of now, is just that I have a meeting Monday with supervisors to figure out if I'm ready to work, what I can take on, and how to best handle this so I stay healthy because they don't want (ie I can't) go through the constantly sick thing of last year. So figuring out the right thing is going to mean my job. This last year has been unlike anything I've ever known, but they have no reason to know that except from my saying it. I don't typically take sick days ever. To make it harder, because of how far away I live from work there have been times I've relied on the ability to trade a day with a Saturday. That's no longer possible. This makes working so far from everything potentially difficult (means everything like dentists etc get hard to fit in). I have no idea what the solution is, or what they want. I also don't know if there are things that are going to come up that are things I've done wrong/screwed up b/c of sickness. I don't necessarily get that impression, and I know the options they are providing to help me transition are way above and beyond, but I also know that the hardest thing about this is that I can't say "I'll be all better in 2 weeks" or anything of the sort. Akasthesia isn't that predictable. Having gotten sleep I feel better but it's going to be a while before I'm done resting.
So, I'm anxious about that. I'll be so glad to get to Monday.
Too much
It's not bad. It's really probably entirely good. But like all things it's making me terribly anxious. It's not life or death and I will explaijn but once for Dr. Brain was about all I could do.
If you are a prayer person please pray for clarity for me and my supervisors and for Dr. Brain to surprisingly check email this weekend, and that if I need to say something I can say it.
Sorry for the mystery; I will explain when not so tired.
If you are a prayer person please pray for clarity for me and my supervisors and for Dr. Brain to surprisingly check email this weekend, and that if I need to say something I can say it.
Sorry for the mystery; I will explain when not so tired.
Friday, October 28, 2011
Oh.
Dr. Mind has said several times he thinks I have a variation of OCD. Today we were discussing how severe my anxiety has been and I said something about he had no idea, he hadn't heart the ice cubes story. I then explained that I have been unable to put any more or less than 4 ice cubes in each of a million glasses of water. He laughed but he said I do that. I had never seen the OCD THAT clearly; I thought before he meant more in my thinking patterns.
I was also good today. I have never mentioned this but there's a man at work who touches me. Not like pat your wrist or hey, you're back, here's a hug (which would still be inappropriate), but mostly my hair. It's really curly as I've said before and I know some people find curly hair fun. I, on the other hand, hate being touched on my head or neck, particularly when I don't even see you coming. I have a tendency to react to being touched when it scares me and surprises me by hitting. I don't think I can confront him. I'm still thinking but I feel like I'd have to wait for next time and that could be when I hit. I really don't want to do that. It's such an instinct for me that I smacked a patient's hand once. He had compulsive issues and would grab women's butts. He snuck up behind me and my immediate reaction was to smack. He was fine, ti's not like I hit him hard and I immediately told a supervisor etc and it was judged a reflex, but still, not my favorite moment. Consequently I think I'm going to talk to my supervisor and see if we can handle this not as a harassment claim-which I could and I suppose they could follow up but it's without proof and I don't want problems--but I will even confront him with support. I don't mind telling people I startle very easily (although he knows by now) and don't appreciate touching. For now I'm no longer wearing pony tails. My hair needs cut so badly but without ponytails it is harder to reach when I'm seated.
Today's big news is that I know what I am getting everyone for Christmas. I like to be done shopping by now so knowing is such a relief.
I was also good today. I have never mentioned this but there's a man at work who touches me. Not like pat your wrist or hey, you're back, here's a hug (which would still be inappropriate), but mostly my hair. It's really curly as I've said before and I know some people find curly hair fun. I, on the other hand, hate being touched on my head or neck, particularly when I don't even see you coming. I have a tendency to react to being touched when it scares me and surprises me by hitting. I don't think I can confront him. I'm still thinking but I feel like I'd have to wait for next time and that could be when I hit. I really don't want to do that. It's such an instinct for me that I smacked a patient's hand once. He had compulsive issues and would grab women's butts. He snuck up behind me and my immediate reaction was to smack. He was fine, ti's not like I hit him hard and I immediately told a supervisor etc and it was judged a reflex, but still, not my favorite moment. Consequently I think I'm going to talk to my supervisor and see if we can handle this not as a harassment claim-which I could and I suppose they could follow up but it's without proof and I don't want problems--but I will even confront him with support. I don't mind telling people I startle very easily (although he knows by now) and don't appreciate touching. For now I'm no longer wearing pony tails. My hair needs cut so badly but without ponytails it is harder to reach when I'm seated.
Today's big news is that I know what I am getting everyone for Christmas. I like to be done shopping by now so knowing is such a relief.
Thursday, October 27, 2011
uh-oh
So it turns out that being worn out and sleepy did not actually lead to sleep. And I am TIRED this morning. I tried to use my SAD lamp as that helps wakefulness but the cord is missing. I'm sure I put it somewhere handy last year.
I am going to check one more place then start trying to relax a bit before work. Today I feel a lot less confident that I can do this.
I am going to check one more place then start trying to relax a bit before work. Today I feel a lot less confident that I can do this.
One part of how my better day was achieved
Over the last few years I have been able to take less medication. That is not true right now and I got amused at the massive piles as I filled my pill box. So, here is what is making me improve (in part):
This is the full thing, minus breathing treatments and rescue inhaler. A few of these (1?) is PRN, but this is my set of bottles, boxes, etc. that I fight each week. I did not include valium even though I take it nearly daily right now too, nor are my mid-day Klonopin doses shown.
This is harder to name them all (repeat picture) but we'll try. The ball is acidophilus for my bowels. The two white oblong pills are Seroquel. The pinkish oblong pill in the corner is also Seroquel. Seroquel potentially has every side effect known to man.The clear oval there are 2 of; they are vitamin D. Safe. There's another orangish laxative The small white pill is Cogentin. It causes dry mouth like you couldn't believe. Beside it is the whole lithium; I take 1 1/2. Lithium has a zillion side effects as well. The green thing is klonopin, there are 2 of them. It's additive, sedating, and saves my life.Somewhere are also singulair and zyrtec, both of which aren't so bad. I'm sure I'm missing something. Point is, too many chances at side effects to be enjoyable.
Oh, and because it shocked the nurses, yes I do indeed swallow all that at once.
This is the full thing, minus breathing treatments and rescue inhaler. A few of these (1?) is PRN, but this is my set of bottles, boxes, etc. that I fight each week. I did not include valium even though I take it nearly daily right now too, nor are my mid-day Klonopin doses shown.
This is just the pills. Except not all because I'm not taking 2 vitamins I theoretically should be taking. See that little bottle send from the right in the first row? Almost $400 out of pocket. Hoping and praying my new insurance covers it.
I should have taken a picture of the pill box. It's impressive. This is one night's worth of meds, minus valium (I'm going to be alternating it with lunesta so I don't want to put it out and I take it later when I know I won't sleep.). It's also minus the vitamins, so there should be 2 more large pills. I also take miralax at night. My patch is changed differently different days. My red inhaler is morning and evening.
This is the morning set of meds. Not quite so bad. I actually have one more usually but my doctor wanted to see what a wean would do so I'm on one less for a few days.
People often think, even repeatedly accused me in the hospital of this, that people with bipolar stop taking meds. I'm sure that's true, but it also is hard to keep up with that. Not to Th that these meds mostly have a lot of side effects. Let's see, above: purple is nexium, no big deal. Orangish thing is a laxative. Clearly can be a problem. Green is synthroid, no side effects. Yellow is the med that's one a reduction trial. It is to keep electrolytes in my body when my kidneys dump them. The big white pill is blesing and curse. It helps me wake up which is good. It also can make me agitated, requiring klonopin several hours later. I have to check as I think I left one out of it is buried; Cogentin tames the akasthesia stuff.
Oh, and because it shocked the nurses, yes I do indeed swallow all that at once.
Wednesday, October 26, 2011
What a difference
I remember 2 years ago today. A week before I had been treating a patient who complained a lot and realized that I could only think "I want to die. I would rather die than do this. I want to die". This led to lots of phone calls to speed up my planned hospitalization. So on the 26th I loaded my things in my car, tearfully petted my cats one last time, and ran out the door before I lost my nerve. It was a beautiful fall day with lots of colorful leaves, blue sky and nice temperature and I was aware I'd probably not see another day like that until spring. I was so distractible that I was constantly not really listening to the Garmin and so I kept getting lost. I also kept drinking water because I was nervous and so I kept stopping to pee. Finally I got to the hospital where the psych unit I go to is located. (ha, I typed locked. That too). I remember texting Julia while registering because the man made me so angry by sarcastically asking if I live in my PO Box. No, but that IS my legal address....I also remember how surreal it was that after committing myself I was told to go wait for someone to take me up (this happened this time too. It makes me want to bolt just to see what happens). I got upstairs and one nurse took my things to the nurses station while the other got vitals and began asking me about 900 questions. Pages and pages of them. I started crying with "why are you here?", sobbing by "are you suicidal". They brought my things in gradually as they sorted them, informing me I should have only brought 3 days worth of stuff as they have a washer. Nobody told me that. So I later had to get them to let me into my suitcase for a bunch of random stuff. I cried that day like I never thought I could cry, but it was because I was finally safe and finally not responsible for other people.
Today was the opposite. Pouring rain, dreary, and the leaves were never pretty this year unless it was during the time i don't remember (likely I suppose).
One day down with work and it went fine. I got very, very tired but I loved being in the office. Lots of hugs. I did not love my computer training but it has to be done before I can see patients. I really need the slower pace to adjust too. I can't begin to say how tired I am right now. Hopefully tonight will be Jen sleeps, part one.
We'll see what happens, I have some pictures to share sometime. Tonight, in the morning. Just depends. I will be so glad when time makes sense again. I can't explain that, it's just all mixed up.
Oh, and I was a good person and apologized to Dr. Brain. I told her that I had been so angry at her and I because we have all these was to handle my bipolar in place and we didn't stop the akasthesia and I was terrified for weeks that this meant I would have to deal with illness all the time again. I really had kind of forgotten that we do not control this disorder humanely, that I just got too comfortable with relative stability. I told her I knew had been rude and I had been treating myself the same way, and thanked her. I think we're friends again.
I also think that she and Dr. Mind are going to force me to work on anxiety again. I got a hint of that from Dr. Mind the other day and the new thing were doing which is complicated to explain and I need to do it without totaling crying throughout to describe it but it's very hard for me, he knows that, and he's pushing. I think they are right. I know my brain hasn't been right here but I did manage to twist a lot of stuff into a lot of depression. Dr. Brain thinks not seeing Dr. Mind while I couldn't drive was horrible for me and wants me to continue twice weekly for a while. This happens this time most years it seems and we'll probably do it until after Christmas.
Anyway, maybe more later. We'll see.
Today was the opposite. Pouring rain, dreary, and the leaves were never pretty this year unless it was during the time i don't remember (likely I suppose).
One day down with work and it went fine. I got very, very tired but I loved being in the office. Lots of hugs. I did not love my computer training but it has to be done before I can see patients. I really need the slower pace to adjust too. I can't begin to say how tired I am right now. Hopefully tonight will be Jen sleeps, part one.
We'll see what happens, I have some pictures to share sometime. Tonight, in the morning. Just depends. I will be so glad when time makes sense again. I can't explain that, it's just all mixed up.
Oh, and I was a good person and apologized to Dr. Brain. I told her that I had been so angry at her and I because we have all these was to handle my bipolar in place and we didn't stop the akasthesia and I was terrified for weeks that this meant I would have to deal with illness all the time again. I really had kind of forgotten that we do not control this disorder humanely, that I just got too comfortable with relative stability. I told her I knew had been rude and I had been treating myself the same way, and thanked her. I think we're friends again.
I also think that she and Dr. Mind are going to force me to work on anxiety again. I got a hint of that from Dr. Mind the other day and the new thing were doing which is complicated to explain and I need to do it without totaling crying throughout to describe it but it's very hard for me, he knows that, and he's pushing. I think they are right. I know my brain hasn't been right here but I did manage to twist a lot of stuff into a lot of depression. Dr. Brain thinks not seeing Dr. Mind while I couldn't drive was horrible for me and wants me to continue twice weekly for a while. This happens this time most years it seems and we'll probably do it until after Christmas.
Anyway, maybe more later. We'll see.
Step One down
I slept 4.5 hours and am awake and ready to get ready when it is time. I am very pleased. Now to see what happens during the day.
Here goes nothing (ok here goes a few minutes of yoga after I write an email).
Have a good day.
Here goes nothing (ok here goes a few minutes of yoga after I write an email).
Have a good day.
Tuesday, October 25, 2011
I may be some time
However, unlike the explorer who said that originally I actually will be back. I just don't know how the next few days will play out. I know I won't be doing patient care quite yet which is a good thing. I have some back-ups in the works if it's too much. But my guess is that 1-2 days of this and I'll be a very different sleeper. It's just going to be painful.
I saw Dr. Mind today and talked a lot about how strongly led I have felt in the decisions I've made and how I have realized there is a huge part of this that has to do with I thought the 3 of us had control of my bipolar and therefore no more surprises would occur. I was wrong. Talking very direct about faith is hard for me but when Dr. Mind pulled this in it has been helpful. I also found out today that not only was a card I made where Dr. Brain can easily access it one I sent to him 2 years ago when he came in vomiting to see me had been on his desk for a very long time. And all that one said was "thanks". So I'm starting to learn to trust people care. It's a lesson that I'm not so good at.
So, don't worry if I don't write until the weekend. Tomorrow should be ok. But Thursday is Dr. Mind day again and I am fully expecting my sleep to rapidly flip flop as my brain realizes we're working. The next week or two is going to be tough with that.
While you are desperately waiting for me, because I know that's all you do, here's something neat. Julia was interviewed by someone who apparently is rather famous in blogland. It's an interesting interview about the ways the internet gives us support we couldn't easily find previously (I'm kind of modifying), but she talks about Gage and I and that makes me happy. I think Julia needs to come to Ohio after hearing that. The plus side Julia is that the wild animal thing is between Dawn and I and so you can imagine wild animals running around in the dark. It's a true ghost story, sadly.
And now I'm going to keep working on sleep.....
I saw Dr. Mind today and talked a lot about how strongly led I have felt in the decisions I've made and how I have realized there is a huge part of this that has to do with I thought the 3 of us had control of my bipolar and therefore no more surprises would occur. I was wrong. Talking very direct about faith is hard for me but when Dr. Mind pulled this in it has been helpful. I also found out today that not only was a card I made where Dr. Brain can easily access it one I sent to him 2 years ago when he came in vomiting to see me had been on his desk for a very long time. And all that one said was "thanks". So I'm starting to learn to trust people care. It's a lesson that I'm not so good at.
So, don't worry if I don't write until the weekend. Tomorrow should be ok. But Thursday is Dr. Mind day again and I am fully expecting my sleep to rapidly flip flop as my brain realizes we're working. The next week or two is going to be tough with that.
While you are desperately waiting for me, because I know that's all you do, here's something neat. Julia was interviewed by someone who apparently is rather famous in blogland. It's an interesting interview about the ways the internet gives us support we couldn't easily find previously (I'm kind of modifying), but she talks about Gage and I and that makes me happy. I think Julia needs to come to Ohio after hearing that. The plus side Julia is that the wild animal thing is between Dawn and I and so you can imagine wild animals running around in the dark. It's a true ghost story, sadly.
And now I'm going to keep working on sleep.....
How to give a cat a pill
I got fed up with not falling asleep last night and finally took a slightly higher dose of valium. I went through a relaxation CD and then as I finally slept around 2 my old cat with dementia had a very bad night. I think she forgets I've fed her, doesn't see the food that is out as new, fresh food, and demands more. I was probably up caring for her at least 6 times and eventually she went to the garage to play for a while (which she loves). But the worst part is I knew it would be a bad night. I just can't figure out how to medicate her. The vet gave me shots, but there is no way I can hold her for a shot. So then they gave me pills. She finds them in everything. I even got these treat things that you wrap the pill in; she won't eat the treat. I threw the treat into a favorite food; she ate everything else. I'm going to have to call the vet for instructions. I am hoping I can crush the stupid pills.
Today has a lot of things to do. I have to make sure I have enough scrubs that fit. I have a couple errands to do when I go see Dr. Mind. I have to get groceries, especially lunch stuff for work. And I'm hoping I can get my oil in my car changed. That really needs done but may be overly ambitious. We'll see. I have to get my TB test read as well.
Today has a lot of things to do. I have to make sure I have enough scrubs that fit. I have a couple errands to do when I go see Dr. Mind. I have to get groceries, especially lunch stuff for work. And I'm hoping I can get my oil in my car changed. That really needs done but may be overly ambitious. We'll see. I have to get my TB test read as well.
Monday, October 24, 2011
Gonna make it
The antidepressant increase is helping. Slowly but I am sure of it now. It has a long way to go but it is doing something. And this works slowly so that it fine.
I've had a lot of thinking to do and the ultimate outcome of that was that it's not just that I'm angry with Dr. Brain. I really am feeling a lot more like PTSD. A big clue was when I realized last week it had all started only 5 weeks ago. It feels like months. I feel like we have found the things to watch for to keep me healthy. And this came out of aboslutely nowhere and nobody reacted in the only way that would have made it not so bad because it wasn't appropriate to assume that. Yes, it would be nice if Dr. Brain has heard me say it but truthfully it might have saved days, not the entire thing. But remembering it is only 5 weeks helps me remember that I need to stop wanting things to be all better. It feels like 5 months but it is not.
So I just wrote a weird email explaining why I want to go back now, sleep issues or no and why. Essentially I don't think I can do anything that is going to make my sleep turn around. I have done so much without success. i think that being forced into my schedule is going to be the biggest thing that will help. And if it doesn't then in a month or so I'll come off work again and we'll probably have to change meds. But a few more days aren't going to do that much so I'm going to see what happens.
The other thing is, and I don't know if I wrote about this, but I'm being tested for sleep apnea in a few weeks. My pulmnologist has suspected all along that my muscles in my trachea were damaged by whooping cough and were floppy. Everyt time I see him he questions me about snoring, breathing during sleep, wakings, etc. and I keep telling him I am too sedated to know what I do at night. The only thing I really knew, which supported his theory, was that I have to be propped up and can only sleep on my side without feeling I wasn't breathing well, and it mainly has to be the left side. Well, since I was intubated I have been waking myself snoring and gasping for air at least every other night. So he is actually excited because if I have sleep apnea he believes this will help me sleep better, it will gives us a way to treat my breathing problems and probably decrease my asthmatic reactions. I can't say I'm excited to learn to sleep with CPaP but I keep wondering how much this affects my fatigue level since it's reasonably likely that I have it given the repeated gasping thing. So I also just need to get through that testing to see what happens.
Anyway, I'm improving, and you have made me smile as 2 of you have checked on me in the time it took to write this post, interrupted by pill time and getting the breathing treatment med from the kitchen.
I've had a lot of thinking to do and the ultimate outcome of that was that it's not just that I'm angry with Dr. Brain. I really am feeling a lot more like PTSD. A big clue was when I realized last week it had all started only 5 weeks ago. It feels like months. I feel like we have found the things to watch for to keep me healthy. And this came out of aboslutely nowhere and nobody reacted in the only way that would have made it not so bad because it wasn't appropriate to assume that. Yes, it would be nice if Dr. Brain has heard me say it but truthfully it might have saved days, not the entire thing. But remembering it is only 5 weeks helps me remember that I need to stop wanting things to be all better. It feels like 5 months but it is not.
So I just wrote a weird email explaining why I want to go back now, sleep issues or no and why. Essentially I don't think I can do anything that is going to make my sleep turn around. I have done so much without success. i think that being forced into my schedule is going to be the biggest thing that will help. And if it doesn't then in a month or so I'll come off work again and we'll probably have to change meds. But a few more days aren't going to do that much so I'm going to see what happens.
The other thing is, and I don't know if I wrote about this, but I'm being tested for sleep apnea in a few weeks. My pulmnologist has suspected all along that my muscles in my trachea were damaged by whooping cough and were floppy. Everyt time I see him he questions me about snoring, breathing during sleep, wakings, etc. and I keep telling him I am too sedated to know what I do at night. The only thing I really knew, which supported his theory, was that I have to be propped up and can only sleep on my side without feeling I wasn't breathing well, and it mainly has to be the left side. Well, since I was intubated I have been waking myself snoring and gasping for air at least every other night. So he is actually excited because if I have sleep apnea he believes this will help me sleep better, it will gives us a way to treat my breathing problems and probably decrease my asthmatic reactions. I can't say I'm excited to learn to sleep with CPaP but I keep wondering how much this affects my fatigue level since it's reasonably likely that I have it given the repeated gasping thing. So I also just need to get through that testing to see what happens.
Anyway, I'm improving, and you have made me smile as 2 of you have checked on me in the time it took to write this post, interrupted by pill time and getting the breathing treatment med from the kitchen.
Friday, October 21, 2011
So...
Yesterday was a tough day. I thought I might be feeling my antidepressant increase working which was good because I felt marginally better. I also discovered that my letter from my company had incorrect dates on it and my LOA ends sooner than I thought, basically meaning no matter what I'm going back next week. So I took some time and wrapped my mind around that. And then my session with Dr. Mind was intense. Very much so in fact. For one thing he pointed out something I am still confused about, but I had been sure I had cried for the whole hour last time. He says I did not. So after some discussion I cried because my memory is still not clear. We went over my feelings about going back and that my core fear was one that I belief is reasonable: that I'm going to lose my job because of sleeping problems. I also listened to myself and realized that I am very, very angry with Dr. Brain and that is making it harder for me to handle this. I know that I have a complicated situation and that everyone who has treated me has made mistakes at time. My mind has been stuck on the part where I TOLD her that I thought I knew what was wrong. I suspect she never got that email. That's part of emailing her, it's hit or miss. But regardless I wound up in very bad shape and in the hospital over this and struggled through a treatment I hated then am struggling to my my entire routine back together and it feels like she's adding pressure and not understanding what I feel are pretty clear issues: I can work feeling bad. Working while feeling bad AND fighting to sleep is really, really hard. And while really she did not do this to me she made decisions, believed to be in my best interest, that made recovering a lot harder. But it was a mistake. But the rules keep changing around and even what we're calling it all, and that frustrates me because if I was manic why was I hospitalized and successfully treated for akasthesia? If I can't increase my Seroquel then why suddenly can I increase it? Etc. I am mad because she made a mistake, the first time she really has made a mistake that hurt me in 8 years meaning I need to get over it, Iand I am mad because she nor I nor anyone seems to be able to just fix that mistake. Meaning I am spent waiting it out.
Then we did this thing that I will talk about later because today's goal (via me) is to stay very, very calm and go to sleep very, very early. It was powerful and made me cry so hard that I thought I was going to die because I couldn't find a place during this closed eyes, slow breathing relaxation, prayer integrated thing to blow my nose. At least it made it gel. I am scared to death to try work because I'm scared if I oversleep I'll be fired. Which leads to a whole mountain of things that scare me silly. And the reality is that yes, I've worked when not well before, or when not sleeping. And I can do it again. It's just the outcomes weren't so good. But I (and this is somehow a key) also realized that for the last few years the combination of meds I've been on controlled my sleep perfectly with adjustments up and down on Seroquel as needed. Well, I've been stuck without any of my meds I can usually adjust myself and without anything that had a clear "knock out a rhino" sedation like I am used to needing. It's the same dose as "usual" but my chemistry is different right now. As I pointed out I have been through a LOT in 5 weeks time. I am not supposed to adjust things without permission right now. However I also have been told a Seroquel increase is an option. I am going to go with that and go up a tiny bit. I can't wait for Dr. Brain to be back from 4 days off.
After all that I came home tired and yet unable to relax to sleep. I knew partly that this was because I had to face it; I'm going back with suboptimal conditions but at least we all know it and I suppose if I am struggling I will go back off. I also have kinder supervisors this time who may be willing to help make things work while I struggle with this last piece. I finally took valium, which I apparently am still tolerant to from that mess before, but when I slept this time I SLEPT. So since waking I've been trying to stay very calm and quiet and am hoping to start project sleep sucessfully tonight. I need to just do it once and I'll feel ok about it. I'm praying that is tonight. At this point I need to get off the topic, take some anxiety meds, and start hanging in for 9 PM which is med time (this doesn't deviate b/c my body hates deviation and so 9 on the nose it is except on rare occasions.)
So anyway, I'm going back next week. And I'm working on not being so mad at Dr. Brain.
Then we did this thing that I will talk about later because today's goal (via me) is to stay very, very calm and go to sleep very, very early. It was powerful and made me cry so hard that I thought I was going to die because I couldn't find a place during this closed eyes, slow breathing relaxation, prayer integrated thing to blow my nose. At least it made it gel. I am scared to death to try work because I'm scared if I oversleep I'll be fired. Which leads to a whole mountain of things that scare me silly. And the reality is that yes, I've worked when not well before, or when not sleeping. And I can do it again. It's just the outcomes weren't so good. But I (and this is somehow a key) also realized that for the last few years the combination of meds I've been on controlled my sleep perfectly with adjustments up and down on Seroquel as needed. Well, I've been stuck without any of my meds I can usually adjust myself and without anything that had a clear "knock out a rhino" sedation like I am used to needing. It's the same dose as "usual" but my chemistry is different right now. As I pointed out I have been through a LOT in 5 weeks time. I am not supposed to adjust things without permission right now. However I also have been told a Seroquel increase is an option. I am going to go with that and go up a tiny bit. I can't wait for Dr. Brain to be back from 4 days off.
After all that I came home tired and yet unable to relax to sleep. I knew partly that this was because I had to face it; I'm going back with suboptimal conditions but at least we all know it and I suppose if I am struggling I will go back off. I also have kinder supervisors this time who may be willing to help make things work while I struggle with this last piece. I finally took valium, which I apparently am still tolerant to from that mess before, but when I slept this time I SLEPT. So since waking I've been trying to stay very calm and quiet and am hoping to start project sleep sucessfully tonight. I need to just do it once and I'll feel ok about it. I'm praying that is tonight. At this point I need to get off the topic, take some anxiety meds, and start hanging in for 9 PM which is med time (this doesn't deviate b/c my body hates deviation and so 9 on the nose it is except on rare occasions.)
So anyway, I'm going back next week. And I'm working on not being so mad at Dr. Brain.
Thursday, October 20, 2011
I'm ok
I haven't said much today because I was trying to process a great deal of thinking/frustration/hurt/anger/fear/exhaustion/etc. I saw Dr. Mind and just got home. It was an incredibly intense session and I will talk about it more after I think more about it. But the chief thing is that I am ok, I have been honest with myself about many things that have had a bad hold on me, my "team" is working as a team at least on some level, my anger doesn't help anything, and I'm completely worn out from thinking so hard.
More to come.
More to come.
Wednesday, October 19, 2011
Not today (Updated)
(ETA: Great, more to worry about. I emailed work last night that I still don't have a positive return date, etc. Nobody responded. Now I'm freaked out, have no information that lets me know what to say, and am scared that they hate me at work. This makes me feel even MORE pressured to go back, not less, in case you are wondering. Maybe that is what I don't get here. I pretty much always face things head on. )
I am disappointed to say I did not hear from Dr. Brain. It is unlikely I will at this point although I've had late night emails before. Whether she gets emails can be kind of sporadic so it may take a day or two although the usual best hope is for her to answer soon after. ETA I did hear and will write more later.
Today has been a little bit calmer emotionally. Lots of doing nothing because I can't, because I'm so tired, and because I don't know what to do. It's getting harder to think clearly and I am glad to be seeing Dr. Mind tomorrow. It will be a relatively busy day as I have to get the 2nd in my sequence of TB tests, see Dr. Mind and get groceries--which needs to happen before I see Dr. Mind because of the crying factor. And since I grew up going to the place where all the wild animals were let loose (the town, not the actual place) because of some sewing store my grandma liked to go to I've been watching that horror show all day on my computer. When they say Ohio is lax about these laws, well let's leave it at I know 2 places within 120 (and I'm going very big to keep my general location hidden) miles of home that are like that place. One of them (unless it has closed) is actually very near here. One of the things that I keep seeing on national news is that there were camels and giraffes. There were not at this time, at least that I find in any tally. So I guess at least non-carnivorous animals were not killed. I hate it so much but know why they had no choice but to shoot to kill, and the one probably good thing is that while I realize all police/sheriffs/whatever are trained to shoot well, around here it is very likely most of those men had hunted. So while it had to be horrible no matter what I think that there is benefit as the animals were less likely to to suffer with experienced hunters shooting them versus people who had never shot an animal. That was my first fear actually, that typically gun-happy people of these hills were on a killing spree, but then I read enough to understand. One thing that is weird is that my mother drives through that area pretty frequently and has seen what she has called "weird animals" as roadkill. We assumed they came from the wildlife preserve relatively close by but as close to that road as this was I suspect it was a matter of time before someone hit a lion (and not just during the last 24 hours. 2 animals were hit by cars. Can you imagine that insurance report?) The saddest part of the whole story is that he set the situation up for this. The mind of someone who is ready to kill themselves is very messed up. But (I am trying to make a map in my head), I'd guess within 30 miles of there is a huge place where reclaimed mine land was donated to someone (the state zoo? Jack Hanna, who was the director of Columbus zoo, is very involved there.) but anyway, it's fascinating. They have recreated appropriate home for animals who are becoming extinct and run breeding programs. You can take a bus tour through it (in fact this is the first year I haven't in many years) and every year it has grown. That place wouldn't have been able to take all the animals, but I suspect they could have cared for most temporarily to permanently with the zoo helping with others, and he probably only had to make a phone call. In fact they have just been developing and giving tours through the beginning of their predator program in the last few years and therefore the lions and tigers (at least a few) might have been cherished. Instead I accidentally (this is why I don't watch the news) saw lines of bodies of gorgeous creatures. They are saying that they plan to bury the animals on that farm, which is a good thing and somehow seems somewhat redeeming.
I had to choose to not see my niece tomorrow. I can't mange that long of a day, I am not at a good place emotionally and I do not want her to watch me start crying for no reason. Making this decision kills me.I just want to start screaming LISTEN TO ME!!!!!! but my cats would only be horrified and listening isn't the issue anyway. I don't know what it is, but that's not it. Believe me? Make it stop? Don't let this happen.....I don't want to lose my job?? I don't know what to say. Worse comes to worse I go to the ER and request admission over the weekend. I can't imagine what I would hate more but I cannot do this force myself back to work on no sleep thing.
I just do not understand what is happening to me.
We'll see
After getting encouragement from people here and in my real life that I am not showing signs of avoiding my job as well as being awake until 3:45 AM (this is why I hate ambien; it works a few nights then stops and usually leaves me hanging), I emailed Dr. Brain today to ask WHY (and if since I misinterpret things a lot) she thinks I'm trying to avoid work and since nothing I am doing is helping how I am going to make this better. I included my feelings about the issue (ie I want to work. I just can't, and now I feel incredible pressure to be better by next week when everything I try to sleep on schedule or function fails) as well as that I had asked several people none of whom thought I'm avoiding things.I admitted that I may well have totally misinterpreted her because I am so sensitive and depressed right now. But I did confront the issue since it is making me miserable. I have no idea if she'll get the email or respond, but I'm trying and if Dr. Mind has not contacted her and I don't know what is happening tomorrow I'll see if he can get anywhere.
I have no idea if this will do anything but at least I am questioning the person who brought it up, not myself.
Tuesday, October 18, 2011
I have....been better
I am still here. I just cry whenever I try to talk, write, think, or do anything not involving sleep. I was crying by the 2nd sentence with Dr. Mind today and did not stop crying until the end of the hour. We talked and cried a lot (Ok, he talked, I whispered and cried) and I have at the very least let him know how sincerely terrible I feel right now. Because I wasn't on the embarrassing end of an emotional explosion I probably was a little more clear than with Dr. Brain. This was also easier because Dr. Brain thinks I am partially dreading going back to work and I don't think Dr. Mind does. I think that he accepted my (now thought out) response and Dr. Brain got a not thought out answer. My answer at this point is that yes, some tough things have happened every time I have gone back, but I WANT to go back and have no reason to believe there is a problem as opposed to the other times.The thing is that I feel more hesitant to talk to Dr. Brain at this point about this because she seems to really believe it and I was able to give her more reason to think it is true rather than saying "but I don't think so". I just feel so extremely depressed and I don't want to get out of bed ever much less shower, etc., plus I do not know how I can go back to work when I need to sleep 12 or more hours. And I truly have tried to sleep less. All that happens is that I feel like a failure when I can't. I can't see a way that feeling as I do now that I can get up by 6 AM in a week. Today I tried for 10 hours of sleep and fought to wake up at 12 hours. Which then makes me feel bad like I'm not trying when the truth is that I'm getting to sleep hours later than usual and I feel awful and sleeping lets me avoid that.
I haven't had time for the extra patch medication to get into my blood. So that's kind of step one, I need to back off of freaking about that. I have a while to go before a response is really expected there, I think. I forgot to ask how long. The other thing is that I have to keep remembering that the things that usually work fast (increasing my seroquel) can't be done because of the akasthesia. On the other hand, Dr. Brain is confusing me by saying it may not have been akasthesia. And if that's true I'm not sure what the point of treating it was an akasthesia protocol was. I also don't know why I would have responded to going off mood stabilizing meds and onto one that is ok for anxiety, sometimes helps depression and is typically given for akasthesia (but in no way that implies if you're on this you have akasthesia. It's just that knowingly putting me on a med that wasn't going to stabilize my mood if I did not have akasthesia is weird.)
I also have all these questions and can't really ask them. I don't have it in me to be confrontative with Dr. Brain in any way right now and I don't even know that I want answers. Finding out that she thinks going through the hospital and akasthesia treatment was the wrong way to go would be more than I can handle right now.
Mostly though it feels like there is this huge deadline in my face for one more week and while I want desperately to meet it I am not sure how. I think I'm going to ask Dr. Mind to talk to Dr. Brain. I probably should have asked that today and for all I know it has already happened, but I couldn't stop crying to do or say much of anything most of the time I was there. I know he is concerned enough to remind me to call him if I'm worse, which is funny since he doesn't work tomorrow.
I'm hoping to go spend the night at my mom's tomorrow and then go see my niece Thursday, getting back in time then go see Dr. Mind that evening. I am really going to push to do this, that little girl can make me feel better if it is possible. However, if my tears aren't a little more controlled I'll have to skip that one. However, I need it. I haven't seen her fully mobile with walking yet, or with her adorable baby pigtails that she wears because her hair incredibly fine, just like my sister's. It's just so much energy.
Anyway, not a lot more to say without just repeating myself. I feel lousy. I feel like I've never not felt lousy. I do know that's not true, but this has been a very hard year and I think THAT is the key to how I feel. I think this is the natural reverse side of all the agitation and manic stuff, and that it is being made much worse because it has been so long since I really felt good. I also am terrified at how hard Dr. Brain intends to push because all of my own pushing isn't getting my anywhere and she can push as much as she wants but if I am sleeping like I am now I am not going to be waking at 6 am.
I think I need to hear from her that she knows I may not make my 1 week deadline and that she knows I'm trying as hard as I can. I think feeling she doesn't think so is part of what is making the depression worse and worse because that feeling makes me put way more pressure on myself because I then blame myself.
I hope she is in touch soon. I am not this strong.
I haven't had time for the extra patch medication to get into my blood. So that's kind of step one, I need to back off of freaking about that. I have a while to go before a response is really expected there, I think. I forgot to ask how long. The other thing is that I have to keep remembering that the things that usually work fast (increasing my seroquel) can't be done because of the akasthesia. On the other hand, Dr. Brain is confusing me by saying it may not have been akasthesia. And if that's true I'm not sure what the point of treating it was an akasthesia protocol was. I also don't know why I would have responded to going off mood stabilizing meds and onto one that is ok for anxiety, sometimes helps depression and is typically given for akasthesia (but in no way that implies if you're on this you have akasthesia. It's just that knowingly putting me on a med that wasn't going to stabilize my mood if I did not have akasthesia is weird.)
I also have all these questions and can't really ask them. I don't have it in me to be confrontative with Dr. Brain in any way right now and I don't even know that I want answers. Finding out that she thinks going through the hospital and akasthesia treatment was the wrong way to go would be more than I can handle right now.
Mostly though it feels like there is this huge deadline in my face for one more week and while I want desperately to meet it I am not sure how. I think I'm going to ask Dr. Mind to talk to Dr. Brain. I probably should have asked that today and for all I know it has already happened, but I couldn't stop crying to do or say much of anything most of the time I was there. I know he is concerned enough to remind me to call him if I'm worse, which is funny since he doesn't work tomorrow.
I'm hoping to go spend the night at my mom's tomorrow and then go see my niece Thursday, getting back in time then go see Dr. Mind that evening. I am really going to push to do this, that little girl can make me feel better if it is possible. However, if my tears aren't a little more controlled I'll have to skip that one. However, I need it. I haven't seen her fully mobile with walking yet, or with her adorable baby pigtails that she wears because her hair incredibly fine, just like my sister's. It's just so much energy.
Anyway, not a lot more to say without just repeating myself. I feel lousy. I feel like I've never not felt lousy. I do know that's not true, but this has been a very hard year and I think THAT is the key to how I feel. I think this is the natural reverse side of all the agitation and manic stuff, and that it is being made much worse because it has been so long since I really felt good. I also am terrified at how hard Dr. Brain intends to push because all of my own pushing isn't getting my anywhere and she can push as much as she wants but if I am sleeping like I am now I am not going to be waking at 6 am.
I think I need to hear from her that she knows I may not make my 1 week deadline and that she knows I'm trying as hard as I can. I think feeling she doesn't think so is part of what is making the depression worse and worse because that feeling makes me put way more pressure on myself because I then blame myself.
I hope she is in touch soon. I am not this strong.
Sunday, October 16, 2011
Not sure what this means but who cares
I dutifully took ambien last night. And I woke up many, many hours later feeling I haven't slept soundly in months. There's no way to know if I have because I'm on so much other sedating meds (and since the hospital even more than usual) that I don't know when I woke up in the night much of the time. In the hospital I was taking ambien and sleeping fairly soundly once I was sleeping but even though I don't remember waking during the times they checked on me I probably at least did some because I am not a trusting sleeper.Regardless I'm hoping that these nights of using this med I hate will let me feel rested, something I didn't realize I wasn't. There has just been so much anxiety that it didn't sink in that I was TIRED.
Soon, after tonight's meds start to work I will take ambien again. I'm hoping to wake tomorrow again feeling like life has value.
(not to give the hated ambien much credit; this could aslso be because of being on less neurontin. I just took the last dose of that. Regardless, I am fairly sure that rest is the main thing I need so just so it continues.)
Soon, after tonight's meds start to work I will take ambien again. I'm hoping to wake tomorrow again feeling like life has value.
(not to give the hated ambien much credit; this could aslso be because of being on less neurontin. I just took the last dose of that. Regardless, I am fairly sure that rest is the main thing I need so just so it continues.)
Saturday, October 15, 2011
Perspective
Things are hard for me right now. I have to fight the suicidal stuff or I will be back inpatient. I have to pray that the med changes today fix things. And I have to feel weird about sharing even more raw pain with Dr. Brain, and I have to work on carefully analyzing my suicidal thinking this week with Dr. Mind.
But.....today is a day that I won't ever forget. Six years ago today I was at my mom's for our usual weekend take turns buying dinner out thing we did back then. I don't know what time it was. I believe it was early evening and we were home from dinner as I remember waiting there for a long time to be sure I didn't need to stay to watch the dogs. At that time I was working with patients with psychiatric illness, violent dementias and traumatic brain injuries.
The phone rang and it was my aunt. My aunt and my mom are very close, partially because they had 5 daughters in 3.5 years. We girls grew up close and their home was a truly safe place no matter how bad things got. My aunt was very accessible; my uncle was not, yet he was the one who made it ok to have fun. Never been on a rollercoaster? Get it line. In my family we'd never have been at the amusement park to begin with. Later, when my mom had left my father and we were facing the first year of Christmas in 2 places and my mom couldn't afford much my aunt made sure we had Christmas. So they are special in my heart.
My aunt and mother always talk on the phone on Sunday mornings. So when my aunt called that evening we knew something was wrong from caller ID. We had no idea how bad. My aunt and uncle and just recently gotten their kids through grad school and into home ownership. They were true empty nesters and one of hte things my uncle had taken up was motorcycles. He had taken courses, had a bike that was considered safe and the best helmet on the market. My aunt had not wanted him to do this but he really did want to. That afternoon he had gone to a state park to ride. My aunt has just thought about how he would be home soon and would like coffee so she started the pot. Minutes later the doorbell rang. She told my mom that when she heard that noise she knew it was my uncle. There was indeed a cop at the door and all she could do was say "is he dead?".
He was not dead. He was in critical condition and had been lifeflighted to a trauma center. Sadly it was not even close the level of trauma center he needed; we'll get there. My mom kept writing on the cover of her checkbook as she talked to my aunt, who really knew little and was waiting for my cousins to get there to head to he hospital, about an hour off.
My aunt got to the hospital where he was in ICU. He was on a ventilator and I suppose comatose although that word didn't pop up too much. The nurse did the cruelest thing possible and told my aunt (who is a nurse herself but obviosuly personally involved here) that he would be fine. That hospital believe his only injuries were to his brain, yet even then it took days to get an MRI because it couldn't be done without transporting him somewhere and there was a lot of intubating and extubating going on. Maybe a week into it he woke up and started talking, much to everyone's relief. About this point my aunt realized that he was not moving and that the care he was getting was not comprehensive. Overnight she arranged a lifeflight to a better hospital. From there he was transferred again to where his insurance was accepted.
Upon arrival there he was actually assessed. He had a broken jaw, some very slight difficulty with a few things from his brain injury, and a spinal cord injury. Hope was extended with this, but being intubated and extubated repeatedly at the first hospital undoubtedly made the injury worse. I remember my mom telling me how awful it was to sit and visit and see no movement even though my aunt was in denial and found every reflexive twitch hopeful.
Around then we heard the story of what had happened and the miracle he was alive. Apparently a nurse and paramedic were driving in the park, saw his overturned motorcycle and stopped to see what was going on. They found him nonresponsive and not breathing and had to decide whether to start CPR. Healthcare CPR training (and probably regular but I haven't had that kind in years) doesn't let you really decide unless it's unsafe; if DNR isn't on your forehead you will get CPR. So they did it and called it in and that's how they got lifeflight so rapidly. What is believed to have happened is that my uncle swerved to miss an animal or something, lost control and hit a sign. When he his the sign with this face that ultra-protective mask did a perfect job of protecting his face but because it didn't break his neck was fiercely thrown back, damaging the spinal word.
The end result is just so sad. My aunt cares for him nearly constantly. His cognition is normal and his body does little. He is severely depressed at all times and has aged drastically. People with injuries like his do not have a particuarly long long expectancy and he is entering the end of what statistically he'll have.
I hate when someone tells me something and then says "at least this isn't your situation". But in this case I tell myself that. In ways he is the one who modeled a good father to us more than anyone else. I remember that at my sister's wedding about 6 months before when the bridal party danced neither my groomsman nor I had a clue what we were doing, turning it into my laughing until I cried as we tripped and he nearly pushed me over and my shoes slid on the floor I looked over and my uncle was watching this with tears running down his face from laughing at us. That's how I'll already remember him, the last time I saw him well.
But today he deserves a post of his own. His loss has been indescribable. It makes my situation look like nothing.
But.....today is a day that I won't ever forget. Six years ago today I was at my mom's for our usual weekend take turns buying dinner out thing we did back then. I don't know what time it was. I believe it was early evening and we were home from dinner as I remember waiting there for a long time to be sure I didn't need to stay to watch the dogs. At that time I was working with patients with psychiatric illness, violent dementias and traumatic brain injuries.
The phone rang and it was my aunt. My aunt and my mom are very close, partially because they had 5 daughters in 3.5 years. We girls grew up close and their home was a truly safe place no matter how bad things got. My aunt was very accessible; my uncle was not, yet he was the one who made it ok to have fun. Never been on a rollercoaster? Get it line. In my family we'd never have been at the amusement park to begin with. Later, when my mom had left my father and we were facing the first year of Christmas in 2 places and my mom couldn't afford much my aunt made sure we had Christmas. So they are special in my heart.
My aunt and mother always talk on the phone on Sunday mornings. So when my aunt called that evening we knew something was wrong from caller ID. We had no idea how bad. My aunt and uncle and just recently gotten their kids through grad school and into home ownership. They were true empty nesters and one of hte things my uncle had taken up was motorcycles. He had taken courses, had a bike that was considered safe and the best helmet on the market. My aunt had not wanted him to do this but he really did want to. That afternoon he had gone to a state park to ride. My aunt has just thought about how he would be home soon and would like coffee so she started the pot. Minutes later the doorbell rang. She told my mom that when she heard that noise she knew it was my uncle. There was indeed a cop at the door and all she could do was say "is he dead?".
He was not dead. He was in critical condition and had been lifeflighted to a trauma center. Sadly it was not even close the level of trauma center he needed; we'll get there. My mom kept writing on the cover of her checkbook as she talked to my aunt, who really knew little and was waiting for my cousins to get there to head to he hospital, about an hour off.
My aunt got to the hospital where he was in ICU. He was on a ventilator and I suppose comatose although that word didn't pop up too much. The nurse did the cruelest thing possible and told my aunt (who is a nurse herself but obviosuly personally involved here) that he would be fine. That hospital believe his only injuries were to his brain, yet even then it took days to get an MRI because it couldn't be done without transporting him somewhere and there was a lot of intubating and extubating going on. Maybe a week into it he woke up and started talking, much to everyone's relief. About this point my aunt realized that he was not moving and that the care he was getting was not comprehensive. Overnight she arranged a lifeflight to a better hospital. From there he was transferred again to where his insurance was accepted.
Upon arrival there he was actually assessed. He had a broken jaw, some very slight difficulty with a few things from his brain injury, and a spinal cord injury. Hope was extended with this, but being intubated and extubated repeatedly at the first hospital undoubtedly made the injury worse. I remember my mom telling me how awful it was to sit and visit and see no movement even though my aunt was in denial and found every reflexive twitch hopeful.
Around then we heard the story of what had happened and the miracle he was alive. Apparently a nurse and paramedic were driving in the park, saw his overturned motorcycle and stopped to see what was going on. They found him nonresponsive and not breathing and had to decide whether to start CPR. Healthcare CPR training (and probably regular but I haven't had that kind in years) doesn't let you really decide unless it's unsafe; if DNR isn't on your forehead you will get CPR. So they did it and called it in and that's how they got lifeflight so rapidly. What is believed to have happened is that my uncle swerved to miss an animal or something, lost control and hit a sign. When he his the sign with this face that ultra-protective mask did a perfect job of protecting his face but because it didn't break his neck was fiercely thrown back, damaging the spinal word.
The end result is just so sad. My aunt cares for him nearly constantly. His cognition is normal and his body does little. He is severely depressed at all times and has aged drastically. People with injuries like his do not have a particuarly long long expectancy and he is entering the end of what statistically he'll have.
I hate when someone tells me something and then says "at least this isn't your situation". But in this case I tell myself that. In ways he is the one who modeled a good father to us more than anyone else. I remember that at my sister's wedding about 6 months before when the bridal party danced neither my groomsman nor I had a clue what we were doing, turning it into my laughing until I cried as we tripped and he nearly pushed me over and my shoes slid on the floor I looked over and my uncle was watching this with tears running down his face from laughing at us. That's how I'll already remember him, the last time I saw him well.
But today he deserves a post of his own. His loss has been indescribable. It makes my situation look like nothing.
I'll be ok
Dr. Brain was very kind but made sure I understood what we all know, including me when I calmed down about 15 hours later, that this had nothing to do with me, that she was not implying anything, etc. And that I have to feel better soon. So after discussing various things I will be totally off the neurontin I think Tuesday (I do have written instructions). That should leave my system fast and hopefully I'll get rid of my predominant "I don't care" feeling which makes doing anything hard. I'm going to increase my antidepressant patch every other day to the highest dose, one that the FDA doesn't love but which is apparently safer than previously though. The goal will be for a month of this. I feel like there is another change but I am so emotionally drained that I have no idea what it is. Again, she wrote things down. The other thing may be just consistent therapy visits, something I haven't have in a very long time. Oh, I remember. I'm supposed to use ambien for several nights. I hate that stuff but I need solid sleep and not to be awake half the night.
She partly thinks I have some anxiety about going back to work that is making it hard to feel good. At first I just kept saying "but all I want is to go back". And then I realized that each time I've been off coming back has had some unpleasant change. I've had 3 disability leaves and each time my job has changed drastically and I have either wound up transferred or quitting. I'm pretty sure that's not true this time, but there are also the doctors who don't even want me to go back because it's hard on my lungs. Yet I keep refusing because I tell them I'd rather have to do lots of breathing treatments than to do something I hate (nursing homes). And this leave had been so different that I had thought......I left 6 days early because of pain and needing continuous meds. That would have not been a big deal if I hadn't then proceeded to the psych stuff afterwards. Just when I should have been able to return I gave up sleeping and then we all know the story.
The good thing is that I came home, took my afternoon dose of neurontin and then slept soundly for 3 hours. I've been pushing no naps but this one I needed after all the driving and stress. I'm already starting to get sleepy again, right on time for bedtime meds and then when those start to work I'll take the ambien and that should help me sleep. Part of why I hate that stuff is that it only works a few days and I only have to use it a few days.
So it appears I'll survive and that again I have someone great on my side, which I've forgotten in the midst of all of this.
She partly thinks I have some anxiety about going back to work that is making it hard to feel good. At first I just kept saying "but all I want is to go back". And then I realized that each time I've been off coming back has had some unpleasant change. I've had 3 disability leaves and each time my job has changed drastically and I have either wound up transferred or quitting. I'm pretty sure that's not true this time, but there are also the doctors who don't even want me to go back because it's hard on my lungs. Yet I keep refusing because I tell them I'd rather have to do lots of breathing treatments than to do something I hate (nursing homes). And this leave had been so different that I had thought......I left 6 days early because of pain and needing continuous meds. That would have not been a big deal if I hadn't then proceeded to the psych stuff afterwards. Just when I should have been able to return I gave up sleeping and then we all know the story.
The good thing is that I came home, took my afternoon dose of neurontin and then slept soundly for 3 hours. I've been pushing no naps but this one I needed after all the driving and stress. I'm already starting to get sleepy again, right on time for bedtime meds and then when those start to work I'll take the ambien and that should help me sleep. Part of why I hate that stuff is that it only works a few days and I only have to use it a few days.
So it appears I'll survive and that again I have someone great on my side, which I've forgotten in the midst of all of this.
Friday, October 14, 2011
Thanks--and what I think
I actually did send Dr. Brain an email asking a lot of questions about what is going on, if things need to change please tell me but I never was aware there was a problem, and begging to not be switched to the earlier appointment (she schedules this herself as only a few people are accepted to this clinic date). The truth is that occasionally due to a cancellation I've gotten noon then she's added someone back in. The other truth is that I may go over but I also wait 45-75 minutes each appointment because of others going over. So she's not really picking on me, I think it was a friendly reminder that something was different. She knows I have a number of questions and concerns about what has been happening. However, after I finished the email for her, which I wrote in the subject line could wait for my appointment, I kept crying for a long time. I cried for hours pretty much solid between something earlier and this. And as I cried I realized that what I have hinted at with her and Dr. Mind both is that something is not right here. I am severely depressed, even more than I thought I was. I think the medication that stops the akasthesia is also attacking me worse than it is doing good. I have a long list of things that I'm doing that are not normal for me. Some of them further show how severe my depression is and how messed up my thinking and motivation have become. I am supposed to come off this stuff very slowly. I think that I probably need to get off it before it does more harm that good, as I realized I'm having vaguely suicidal thinking that I can control But the list goes on and on. I searched the freezer for the ice cubes I had refrigerated tonight. Basic hygiene is hard. I don't want to leave my weighted blanket. I'm a little paranoid. I have an don't care attitude about many things. Etc.
I suspect I'm going to be rehospitalized. I think that I'll need off this stuff faster than she can pull me while I'm home and already not functioning well and that something else probably needs substituted. I am reaching a point I want to go back because I know that I am not operating well at all and I need the support of nutritious meals, readily available. I need to have to do laundry and have someone know if I don't bother to shower or put on pants. I need to start to feel safe again. And I will be suprised if this doesn't mean another week in the hospital. Why not, I practically live there anyway. My guess will be that it will be Monday night or Tuesday. Weekends mean the dr. who accepts direct admits is off and also that there is much psychiatric care or even groups going on. Plus I don't know that insurance approval can be obtained that fast. So unless she forces me to go in via ER, whcih I don't think she will because I'm not a strong danger to myself and this could easily land me especially with my diagnoses on the typical floor which she has promised to keep me off of. I actually really feel that I probably belong there. I'm forgetting so much that I'm not the best person to be in charge of my pill box, or health and wellness or so many other things. It's a bit embarrassing going back so soon, but it's not my fault. (I am assuming here). I tried the standard treatment. It has not worked. Time to try something else and since that process can be ugly I probably need a safety net. I hope I'm wrong. I doubt I am. The only thing is that I do not want mean nurse. But whatever. Maybe she's grown nicer. If nothing else the person with her is one of the sweetest nurses ever and so I'll avoid the mean one as much as I can. As long as she doesn't try to run groups at night she's fine, I think and when she came back from vacation my last night or 2 she didn't do that.
I'll let you know tomorrow. I just know that I cannot go on living like this. I'm scaring myself. I pray I'm wrong and she can say "ok, well stop all 3 doses now and let's see". But I know that's not hte way it works, she told me this is a long taper. My guess is more like my daytime dose would go down to the next lower dose. And that doesn't help much in terms of working and functioning.
Just to give you all an idea, my list of issues thus far includes:
I suspect I'm going to be rehospitalized. I think that I'll need off this stuff faster than she can pull me while I'm home and already not functioning well and that something else probably needs substituted. I am reaching a point I want to go back because I know that I am not operating well at all and I need the support of nutritious meals, readily available. I need to have to do laundry and have someone know if I don't bother to shower or put on pants. I need to start to feel safe again. And I will be suprised if this doesn't mean another week in the hospital. Why not, I practically live there anyway. My guess will be that it will be Monday night or Tuesday. Weekends mean the dr. who accepts direct admits is off and also that there is much psychiatric care or even groups going on. Plus I don't know that insurance approval can be obtained that fast. So unless she forces me to go in via ER, whcih I don't think she will because I'm not a strong danger to myself and this could easily land me especially with my diagnoses on the typical floor which she has promised to keep me off of. I actually really feel that I probably belong there. I'm forgetting so much that I'm not the best person to be in charge of my pill box, or health and wellness or so many other things. It's a bit embarrassing going back so soon, but it's not my fault. (I am assuming here). I tried the standard treatment. It has not worked. Time to try something else and since that process can be ugly I probably need a safety net. I hope I'm wrong. I doubt I am. The only thing is that I do not want mean nurse. But whatever. Maybe she's grown nicer. If nothing else the person with her is one of the sweetest nurses ever and so I'll avoid the mean one as much as I can. As long as she doesn't try to run groups at night she's fine, I think and when she came back from vacation my last night or 2 she didn't do that.
I'll let you know tomorrow. I just know that I cannot go on living like this. I'm scaring myself. I pray I'm wrong and she can say "ok, well stop all 3 doses now and let's see". But I know that's not hte way it works, she told me this is a long taper. My guess is more like my daytime dose would go down to the next lower dose. And that doesn't help much in terms of working and functioning.
Just to give you all an idea, my list of issues thus far includes:
-crazy crying spells that I can’t stop
-can’t drive near taking it after being on it a pretty long
time
-fighting to handle hygiene, cook food (I have plenty) etc.
-memory problems still
-many messed up
emails
-ice cubes in fridge after long, panicked search
-difficulty with
remembering time, how long things have gone on, etc.
-concentration stinks
-I don’t care. Even
not getting disability payments when I have about $200 to my name is not
scaring me.
-want to sleep all the time.
I don’t let myself but I want to
-no motivation to do anything but hands still must be
engaged
-how easily one albuterol treatment messed me up completely.
-trouble following books even if I back up pages to try to
remind myself
-I have had cat puke ruined socks on my floor for about 4
days. I keep walking around them instead
of getting rid of them. Again, I don’t
care.
-misinterpret what people say
-can’t remember conversations and so keep asking the same
things
-I feel so lousy I don’t even want to go back to work and
yet I miss work so much. I just don’t
think I can do it well at all.
-increased fear, like being in an elevator with just a man
makes me nervous and wanting to be near the emergency button at all times even
if it’s just a floor or two
-some thinking about hurting myself that I can stop
-just picked up a sharp knife from the kitchen floor. Haven’t really cared if my always bare feet
stepped on it.
-thinking things like “this knife would hurt you”. “are you stupid? That did not work well before” so safe but
not ideal
-forgetting little things like fabric softener that I’m not
allergic to
-pretending to be ok a lot.
I am not.
-crying/getting way too upset way too easily. Yesterday I got the milk out of the fridge,
turned around, saw the milk sitting there and starting crying because I’d left
it out for hours. It had been out under
2 minutes. Missing logic.
-keep thinking people are upset with me. Usually they say they aren’t and why do I
think that?
-went to the postoffice with a shirt with a ton of holes and
unwashed looking hair
-don’t want to leave bed-aka don’t want to leave weighted
blanket
-I had a conversation about the pain in a couple rooms of my
house with my mother. 2 days later I
realized I had that conversation forgetting the true color. It has been that color for 15 months.
-I’m not drinking anywhere close to what I should be
especially with the constipation issues of late. I’m probably at about ½ the water I should be
drinking. Too hard to get it or
something. Maybe just plain I don’t
care.
-I cannot picture myself working competently. It’s all I
want to do and if I am completely honest I’m not ready. I’m scared of what happens at the end of my
LOA.
-panic attacks. I’m controlling
with breathing but I’m having them almost daily.
-can’t fall asleep until 12;30-1:00 most nights. Don’t want to take ambien because I have no
idea what it will do to my wake-up schedule and if I oversleep I don't feed my sick cat and I don't get meds in on time which throws the whole day of neurontin off.
Probably more will be added by morning, but that is not a list made by someone recovering well. I think that's what my hours of crying were really about, I want to ignore all this stuff and I don't think I can.
I think, in fact, that I need to face it headlong. In 60 minutes or less.:) (The thing is she says that but if it takes more than 60 minutes to deal with this she'll do that. Which is why I trust her, I just don't get this new thing).
I also should add that because she is having some final surgery at the end of November she really wants me better by then, whcih is another reason that going inpatient now is probably ideal.
If I go the hospital this week it will be one week less than 2 years from my first stay and 1 week less than 2 months from my 2nd. Weird, huh.
I just thought to look this up and basically this amounts to I am having a lot of side effects. It has a lot of psych side effects and I'm having many of them.
So that's the story. More tomorrow, hopefully from home with orders to be ready to leave soon.
All prayers appreciated.
What do you think?
I am usually Dr. Brain's last patient and she usually spends a lot of time with me. This is the way she has arranged it for years. When I saw her after the hospital she had them made a big point of emphasizing "ONLY 45 MINUTES". Tonight I got an email telling me there is someone after me so only my hour. This is hurting my feelings. Isn't she is charge of what happens? And if she is moving my appointment to 12 to control this it's really bad for me because I can barely get up, much less drive safely in the mornings right now. Really though if she feels I'm taking advantage of her time or something now is so not the time to do this, especially not in this way as I can't handle it. I feel guilty and like I've been doing something wrong for the last 8 years and well, like I said, she controls the clock. I don't even see the thing. Plus I think I am nearly always done out in about 75 minutes which is a long time but now I feel like I've been bad or something and I don't have time talk about it with her because we have to cover depression city here, back to work, these awful meds, and getting back to a life.
Is session time (which I often can't see the clock without turning awkwardly) my responsibility or hers? In my professional world it is my job to get out of there in a reasonable time frame. So why not hers?
And now I feel panic-attacky because I so did not need to feel this way. Probalby not her intention but I'm really not good and am easily made to believe bad things. And I'm crying. Again. Fabulous.
Is session time (which I often can't see the clock without turning awkwardly) my responsibility or hers? In my professional world it is my job to get out of there in a reasonable time frame. So why not hers?
And now I feel panic-attacky because I so did not need to feel this way. Probalby not her intention but I'm really not good and am easily made to believe bad things. And I'm crying. Again. Fabulous.
Thursday, October 13, 2011
Wheezy
So I didn't have enough on my plate apparently as I now am sick. This is my first upper respiratory infection since the asthma started and I'm pretty nervous about it. I coincidentally had a pulmonology visit today so the right person will be checking it out quickly, but this is so not what I needed right now. I am going to have to go through the whole "this is a very bad time for me to try oral steroids" thing.
The strangest thing is that this is like a cold but my nose is not stuffy or runny. My sinuses are hurting and I can hear them crack and pop, I have a somewhat sore throat, my tongue is sore (?), and I don't sound good coughing, but it's not really a cold. I have no idea what to call it. My mom says my sister has it too.
The other unfortunate thing is that today is busy and I can't just lay around and rest. I have Dr. Asthma at 4, but I have to leave extra early because of construction. So that means leaving at 2 and killing time. Then after Dr. Asthma I have a gap and then Dr. Mind. Then on the way home I have to stop and get my TB test read (has to be 48 hours from when it was placed which means it is too early to do it before then. I may just put that off and go tomorrow but I hate committing to that when I know I may not feel well.
I thought this might happen when I had an asthma attack after simply climbing stairs yesterday. I knew that wasn't right. At least I can tell myself "I told you so".
Wednesday, October 12, 2011
Lots of stuff
You'll have to forgive me. An asthma attack and need to use stimulating meds has transformed me into a shaky, manic version of my depression self. In other words, I'd like to sleep but I'm shaking. That was the first real attack I've had since I quit leaving home except for medical appointments. No idea what caused it. I did walk up some stairs but I do that all the time. Oh well, makes tomorrow's pulmnology followup appropriate. Plus I think I have sleep apnea. The dr. has implied this but since I was intubated/also since I've not been sleeping well, I wake myself with snoring and then needing air. Just what I need.
For those who haven't been able to comment this does seem to be working at least sometimes now. I'm going to contact blogger. I also will go back to the old format and see if that changes anything.
Today I saw both gynecological surgeons. I got good news. My doctor thinks that the fact I've twice had cramps but really nothing like a period means I may be not only in the 50% who stop periods on Mirena totally but I may be in the tinier percent that it happens fast. I may still get a period, I may get one per year or something like that even, but period is a big name for what seems likely. (Watch tomorrow turn into a blood bath :). They also think they probably can let this one stay in more like 7 years and that would probably get me to the end of menopause based on my mother. The only pain I've had in a long time is soreness in the same area if I overdo. The dr. confirmed this is just from having muscles cut there for one of the little incisions, then it also is why I was biopsied and that she poked around the most there. So she agrees, no problem.
I need to take back my hurt and bitter statement about my friend from the hospital. She did not unfacebook me, I just can't work facebook. And she answered my email today. I need to trust people more. Surprise!
I probably was given one of the drugs I was concerned about as a cause of my askasthesia during my surgery. I had to request the reports to go through but it was prescribed for after surgery so may well have been given during. I hope I can find it as this really affects what I will take in the future. And I want to know anything that can cause akasthesia. Aside from antipsychotics I am never taking a risky med again and those only because I'm likely to be safe with what I take. Well, that and I'm kind of crazy without them.
I got my statement from my surgery and hospitalizations. It comes to more than I thought. But imagine my surprise to find that not only have they still not correctly submitted the insurance claims from a bunch Dr. Brain visits, they also didn't submit my $634 visit to Dr. Pee, so they think I owe them over $2000 that is totally covered by my insurance. I am so sick of fighting about these claims. One thing that was past my having to pay anything and best stay there is that I was charged nearly $1800 for a respiratory therapist to come give me asthma meds while on psych. Since I handle my inhaler just fine at home and the nurses know how to use them I think that policy is a total rip-off. I had 2 breathing treatments then as well but again, nurses are fully qualified.
I'm starting to think my asthma attack may have been caused by a cold. My nose is dripping and the usual post-asthma attack cement is in my throat. I guess if I'm going to get my first cold before I go back is better.
I feel like I had some other big thing to post about. But now I remember that when I did this I wasn't going to post at all, I was about to email my sister. Sheesh. I can't wait until I am no longer um, lacking in concentration, to be kind.
I also can't wait until I see Dr. Mind tomorrow and Dr. Brain Saturday. I am really afraid of returning to the hospital with depression and they will both be seriously assessing me. Right now (this moment) that is much improved because of the asthma medication. But in another 6 hours or so I'll be as I have been. And that is not good. I need Dr. Brain to sort out what confusion is me and what confusion is medication too, as that may make me feel better.
And it is now time to take pills. Oh so many pills.
Re: [Master of Irony] New comment on She's Back! Michal is back!.
If this applies to anyone else PLEASE let me know!
On Tue, Oct 11, 2011 at 11:03 PM, Anonymous <noreply-comment@blogger.com> wrote:
Anonymous has left a new comment on your post "She's Back! Michal is back!":
Can I comment now too???? B.
You haven't been able either? I just assumed nobody had anything to say! I need to contact blogger apparently. If you have my "real" email feel free to use it and if you don't and want it leave a comment. If I know you you can have it. I just don't remember to check my MOI account much.
Posted by Anonymous to Master of Irony at 11:03 PM
Tuesday, October 11, 2011
She's Back! Michal is back!
Michal, super commenter, Bible study provider, and friend who blogger was rudely ignoring is back with us. And that is posting on top of some nasty exams. If only blogger let her have a name.......
In her last comment she said something I'm going to address here tonight because I like it. I am almost out of battery and left home without a charger so I'm paraphrasing. She said it takes 48 hours to recover from an acute sprain but 6 months to recover from acute psychiatric illness. That sounds about right. Obviously we're talking mild sprain but still, I like the analogy. I hate mental illness being compared to diabetes. This is much better.
The thing is that when I think about it when I've been very sick it does usually take 4-6 months to be back to normal. And this time is worse in a number of ways including my physical condition was less than optimal and akasthesia is about as physically draining as I can think of ever experiencing. I still am physically dealing with it and it still mamkes me tired. This time also is different because I have to go through treatments/meds I do not like because they are what heals akasthesia and I cannot take meds that would make me feel better until the risk of setting it off again is over. I truly am not kidding when I say that I am not yet sure I'm going to avoid being hospitalized for depression. This treatment is very hard because it doesn't really make me feel better aside from removing the worst of the akasthesia. And instead it has many side effects. I can drive, as of today. I think I've been home 2.5 weeks? 3.5? (ake that I can drive by skipping a dose of meds) It has been so long Dr. Mind called to see if I'm ok because I haven't seen him since I was on the way home. He had a cancel today and offered to come in on his day off tomorrow butI told them waiting for Thursday was ok. Then on the phone I only could talk about how bad I feel. I suspect he and Dr. Brain have been emailing. So whereever Michal's statistic comes from I think it is probably very true and at this point in the year not only is my situation complicated by not being able to adjust my antipsychotic (poor Dr. Brain is giving me control back over all these wimpy drugs because it is all I can control) there is also the seasonal affective disorder thing, the holidays are hard, the my childhood pet just died and I'm sad about that and the months of isolation. I truly don't remember much fo the last few months. But the one thing I do know is I've been alone a lot. I like being alone but I do not like being alone for months on end.
This has just been an incredibly hard few months. Right now it is hard to believe I am ever going to feel good again. For months it's been a battle beteween body and mind and I am so tired of that. I never really thought that there was a risk of a medication given when I was unconscious causing anything liek this level of psychatric symptoms; I felt that I was nearing hospitalization trying t cope with pain and work and training my assistant and all that. I never began to think a med nobody knew to hold could do this. Clearly I know now. But the last 2 motnhs (roughly) since surgery have been a form of psychiatric pain I've never been through. I felt depressed already. Then the akasthesia made me quite literally painfully manic. Now that is over and as is normal for me I feel like my mood dropped 24 stories in an unconctrolled elevator. Except it doesn't usually go 24 stories, more like 18. And usually there is a safety net about 16 floors into the fall. Well, the safety net is there but part one (Dr. Mind) I can't get to or he has his own emergency, and part two Dr. Brain and her fanastic med solutions is being tied up and sat upon by akasthesia and neurontin. Which I keep forcing myself to be grateful for but I do not like that med. It makes me so foggy. Skipping a dose to drive up for surgerical follow-up feels like just a few hours I get myself back, and then in 20 minutes the monster takes over.
I'll be honest. I am slated to go back to work 10/28 pending psych status but that was the "we're pretty sure" date. 11/08 my leave of absence expires.I 'm not sure I'll be well enough to work. Had it just been surgery the 2 weeks afterwards would have been plenty. All the psych is messing things up and I get less time to deal with it because of the 4 weeks of leave (3? No sense of time, really) that were for surgery and physical pain cuts into my psych healing time. I'm scared of 11/08; I don't know what happens then. I'm waiting to find out until I see Dr. Brain later this week. I want to go back so badly but I don't want to go back and then be off for another 2 months because I tried too soon. I also want to do things like sleep regularly, not need naps because midday meds make me tired, feel safe driving etc. And rather than being at that place instead I am still fighting horrible depression.
I don't like the need to be better than I am. It's scary.
And my battery is going to die very soon, so more when I'm home and have a charger.
I don't remember the title
Well, I wanted to say something. I pulled up the page. And it is now very much gone. Which is typical these days. I now sent my dr. an email without including the question. I'm a genius.
Monday, October 10, 2011
Oh for Pete's Sake!
I shared previously about my accidentally emailing Dr. Brain something intended for Julia, and my mom a line of gibberish. I did it AGAIN. This time is really great. Basically I emailed Dr. Body while in the hospital about the constipation I was coming home with, did he have any ideas? I totally forgot that email and toward the end of last week emailed again asking the same question with the addition of some specific drugs. He said something about "like I said I really don't have any answers but you can try really horrible, nasty liquid med for colonoscopy prep, that it was not great for electrolyte imbalances (which I am at right for) but it was becoming worth the risk.
So I spent some time very carefully apologizing for my repeated emails, explaining I was having trouble with concentration, memory, blurred vision, and that I had sent these other 2 embarrassing emails.
Today I got a very kind response along the lines of he's just sorry there aren't options for a valid problem and that hopefully I'll return to my "together" self soon and he's praying for me. I noticed the part I had written had some issues with crazy spellings, wrong verb tenses, etc. It wasn't until I started reading it that I though "huh? I don't remember this". Then I noticed in the outbox part another email from me. Which was the one I remembered. That's right, I sent Dr. Brain an email for Julia and Dr. Body got 2 versions of the same thing.
I hope this stops soon. Writing the same note twice for every patient when I am working may not be a fun idea.
Saturday, October 08, 2011
How?
I went to the grocery and the flooring store (must replace basement flooring because of molds after it flooded sometime before my surgery. Have to do it now because it's causing asthmatic reactions this morning. It is not cheap, nor do I want to prioritize it over upstairs. But whatever, do what you have to, etc.
My mother took me to the store, which I'm sure was good for her as well after the cat dying this morning. She so didn't want to euthanize and there just was no other kind choice by the end.
But the good news is that my eyes are crossing less today. It's not gone, but I'd say I can even drive since there's not been any point that I absolutely couldn't see. I don't have anywhere to go until Tuesday so hopefully by then it will be none at all.
I can't believe how tired I am. I also am experiencing a lot of questions about going to back to work in 2.5 weeks. I want to. I have absolutely no idea how I can do this though. Currently my depression is bad enough to keep me from wanting to leave my bed, much less my home. I know that leaving home will probably help that, I have to be certain my eyes will focus before I can do anything. And that has really messed things up; I had plans for pretty much every day last week that involved some time away from home. It turned out I had to cancel all but Dr. Brain. So no plans going into to this week except for going to Cleveland and seeing both surgeons for follow-up Wed (I'll be spending the night before), then returning on the 15th to see Dr. Brain. I have someone coming to install my new door on Tuesday as well as Dr. Mind and Thursday I have a pulmonologist appointment and Dr. Mind. Which counts as something, but I need non-medical. I have a lot of years that are very hazy in my memory. None were as hazy as immediately as the last 6 weeks. I have pts. complain about this frequently and I always tell them to be grateful as it's not things they want to remember and I still believe this. But I also feel so confused about time; I know the date of when I came home from the hospital and use that as a reference point. I do not though have almost any memories from being Cleveland for the CT and seeing the urologist until now. It's weird. Even the hospital is mostly blank although there are some memories. Somehow it seems like I should keep them active as I am scared I'll have to go back for depression. I know I won't but then again if you asked if I'd spend any time this year inpatient now is not when I would have chosen.
Great, NOW my eyes are crossing. I should have known to not say anything. (Really the typing screen or typing are about the most likely things to cause the eye crossing.
Gone
The cat died. My mom had to have her put to sleep this morning because she was becoming unable to walk, eat or drink. I feel so bad for my mom, she had a horror of putting another animal to sleep after doing it before, but she won't/can't talk about it. She was just such a funny and good cat, and while I cry my own funny and good cat is cuddling with me.
I'm so sad about something that makes no sense to be sad about; she lived a full and happy life. But I am.
Friday, October 07, 2011
Wow! and Oh.
I'm bipolar, I'm allowed to have titles with 2 emotions. It's how I live.
First, because otherwise it sounds connected to the rest, I just got brave and looked at my prescription med costs for the year. I'm at $3000 out of pocket, nearly $18000 total including what they paid. This isn't even accurate since I have one med that costs $400 that I buy every 1-2 months and that one the whole thing is my cost. I'm amazed.
Second, I realized that everything my body has been through chemically, and for all I know because it was in such a hyperactive state for so long, has made me depressed. I was blaming it on being in the house so much and not being able to drive, missing appointments with Dr. Mind, etc. And this happens after I've been mixed, as I definitely was, but this one seems to be really impacting me. I took like 3 hours to convince myself to shower and I really needed that shower. I never did change the sheets for that nice clean body, clean sheets feel (they've only been on for about 5 days so they're clean enough I just really like clean sheets.) This must be Dr. Brain's impression as well since I was to send her an update. I sent her akesthesia information and that my mood wasn't good. Later I realized I'd left out something she should know, including that it was hard to shower. I did not get to lower my meds. I did get gentle encouragement to shower. So I must actually be pretty depressed because we need to be getting me to a level I can tolerate for work.
I am going to talk to her about staying on Cogentin, the med for extrapyramidal syndrome (EPS). EPS is something that happens mainly from antipsychotics but from some other meds as well, including several anti-nausea meds that I assume I was given during surgery. I don't know if staying on it helps, but like so many things I appear to be easily put into EPS. The reason for this is that I've now had EPS 3 times. Twice akasthesia (with it being arguable that I've had it on a few antidepressants as well and I'd say my reaction to Prozac is 99.9% likely to have been akasthesia as well. EPS is not something you want because well, first it is miserable and second it can (if not treated quickly enough or if the meds don't work or I don't know what all) turn into something called tardive dyskinesia which is a syndrome of involuntary, repetitive movement patterns that cannot be voluntarily controlled. When I took Geodon I developed what would be called a dyskinesia (not tardive), just an uncontrollable oral movement of my tongue like a snake. I was pulled off it rapidly without any gradual wean because of the risk of that becoming permanent. If it is helpful at preventing EPS, particularly akathesia, I will happily take it daily forever. If it's not I want to know how to keep that from happening again. The scary and only answer is, of course, that's not possible. If we change antipsychotics I'll be watched closely. But surgery? Normal meds of life? Those things are impossible to control. And this all may be part of why I feel so depressed. It also still bothers me that I lost 4 days of my life in the hospital, 2 of which were nothing-ever-happens-on-the-weekend days. The others watched movies and visited with family. I walked about 200 miles, spent much of Sunday on 1:1 and when I wasn't 1:1 the nurses were spending as much time as possible talking to me, etc. to keep me from pacing so much. That was a huge blessing that they did this because staying distracted helped me not need to walk as much as long as my fingers were engaged in something. I know the hospital was good. I went in because I couldn't care for myself anymore and I need to remember that I can do that (although showers are still hard for some reason), and that I learned a great deal in groups and from talking to the others. I benefitted greatly from the time in there. It's just hard to think that I suffered for several extra days because of things beyond my control, like the resident trying to cut my seroquel even though even I know akasthesia is usually from antipsychotics but it does not have to be and it does usually develop after 4 yeras on the drug; then nobody could do anything to help me when I no longer could take the two meds that had been keeping me semi-calm; the covering doctor one day actually told me nobody has ever died from not sleeping and I did seem akathestic to her; I had reminder her that I had a huge dose of bendadryl and was taking anti-anxiety meds ever 2 hours so I did have my calmer periods. When I told her that she looked and said, somewhat accusingly "Well, you're on huge doses of those, MOST people would be asleep". I wanted so badly to say "yes, and do I LOOK asleep???" but I held my temper mainly because I knew she was Dr. Brain's friend.
I don't know. There's a lot going on I guess in terms of what my body has been through, which is not just surgery but my brain attacking me, many med changes in a short period, not sleeping for weeks, lack of time doing anything fun since about the end of June, worsening greatly the first week of August. But still that is 2 months that I've mainly been in my house with no reason to even get out of pajamas, aside from the 2 hospital stays, one 2 days, one 7. And those certainly weren't offering exposure to happy things. I suppose the way I feel makes sense and is ok, but I want it to be better. Now. I know we probably can't mess with my antipsychotic dose until I'm further out from the akasthesia. That may mean having to see what neurontin can do for my mood without making me too sleepy.
At least tomorrow I'm getting out of here to go grocery shopping. Since I HATE doing that this should tell you how cooped up I feel. I'm used to driving a thousand miles per week and now I'm not really allowed to drive a mile to go to the post office and back.
I am so tired.
Bad Mood
I'm feeling really cranky today. Partly it's that I want to go ANYWHERE and can't. Part is worry about my mom's cat, and about my mom dealing with the loss. Part of it is just exhaustion and being so tired of being in the so-called "healing process". Seems like we could have moved on with that by now, 6 weeks after minimally invasive surgery.
But now I have discovered even more fun. I never expected the hospital friends to necessarily really stay in touch. There's so much emotion wrapped up in that process that I didn't expect to see it necessarily go on. But rest of them continued into the intensive outpatient part of the program, something I can't do because of distance. But I did think there would be emails. And there was one. There was also a friendship on facebook accepted. But that person goes to the same program as the one who gave me fake information. I probably brought this totally on myself, but I had hoped reassure the person who clearly didn't want to have me in her life, so I mentioned that the one who was writing could tell the other one that it's ok, I understand and will not track her down or bother her ever. I also wrote about how much I appreciated having been accepted and included by the group even when I couldn't do what they were doing. Some acceptance. I've been unfriended. I do understand. We're in different places with different diagnoses. I just had hoped that for once I would get to bond for more that 5 days with other people with mental illness. Noneetheless it hurts.
I also have a hefty pile of depression symptoms. This is typical after a mixed episode, I always bottom out for a while. The difference this time is the inability to drive to get away from home. And because I feel like I've been a prisoner here for so long, broken only by prisoner on a psych unit (prisoner is a strong term for the unit but stuck on doesn't help either). There just is so much that is mostly related to I want to leave home, drive where I want to go, buy what I need, etc.
I'm just tired of everything right now. Forgive me. I have been waiting to be all better for 10 months now. I'm so sick fo knowing my dr. probably sighs when I send in a question, of emailing Dr. Brain over and over, of complaining on here.
I am just so very tired.
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