Friday, February 29, 2008
That depends. They need a release (sometimes releases, one for each) signed by you. They also have to be willing to put in the time to do this, which good doctors will be.
I strongly recommend doing this, even asking one to contact the other, because it is very beneficial. Mine talk rarely now, maybe every 6 months. Prior to Dr. Brain changing jobs she worked with him more routinely and they spoke often. Especially when I've been sickest this has made a big difference. It's also allowed Dr. Mind to be a buffer; about a year ago I cancelled an appointment at the last minute because I couldn't stop vomiting. The message was sent to her without explanation, just that I wasn't coming and to please call me. That made her mad because she goes out of her way to see me on Saturdays and so she didn't call, thinking I was being passive-aggressive. Dr. Mind called to tell her I was becoming seriously depressed and needed more antidepressant and calmed the situation down.
I also have encouraged a very open relationship between my family doctor (Dr. Body) and Dr. Mind. Anything Dr. Body does potentially messes up my stability, and the main problems he treats me for are the result of taking lithium. Both my thyroid and now my kidneys will do fine with him treating (and possibly the nephrologist in the background).
When all this was new I didn't want them to talk. I felt like they'd be "talking about me" and that was uncomfortable. When I knew something was horribly wrong and couldn't express it remotely clearly, Dr. Mind saved me by letting Dr. Brain know I looked like I had toxicity. My level was so high at that point that a few more days and I might have had some bad things happen.
Now I'm never comfortable, because I know there are surely ways I irritate both of them, but it's worth it.
Thursday, February 28, 2008
Over the past 5 1/2 years since I first ingested lithium I have had approximately 2000 blood draws. Between levels for both lithium and depakote needing done every 6 months plus every time the dose was changed, the clinical trial I was in requiring very frequent (every 2 weeks for 6 months? I don't remember) bloodwork, insanely frequent bloodwork for weeks after my lithium toxicity, bloodwork to diagnose and monitor my thyroid, the frequent testing last spring and summer as we attempted to figure out what my body is actually doing with the meds that prevents them from working well, and now frequent monitoring of my kidney functions and electrolytes to be sure my kidneys don't dehydrate me, there have been few months that people didn't poke me. I don't even notice needles anymore, although it helps that my favorite lab woman uses butterflies out of sympathy for my ridiculous history.
So it was bad enough people wanted blood all the time. But now we've hit a new low. Up to now it's only been blood and urine a few times when I was nauseous from lithium toxicity but we hadn't figured that out. Oh, and a urine test for pregnancy before I started the clinical trial. Now, everyone wants my urine. I've had 2 or 3 samples for the doctor and one for a work drug test. And when I got labs today I got the surprise news that has me all smiles: 24 hour urine collection. So I got to come home with 2 jugs (in case) and a biohazard bag. They didn't give me the usual thing that fits over the toilet seat; they gave me instead a specimen cup. I am pursuing other possibilities there because I'll be a wreck if I spend an entire day cleaning up spilled pee. (Don't cry over spilled milk seems much tamer in comparison).
So I'm spending Sunday peeing and refrigerating. I am SO LUCKY....
Wednesday, February 27, 2008
Work is hard. As I said yesterday it's a weird situation to walk into. There's a problem with middle management that has caused a lot of issues. The aide may quit tomorrow, in fact. I also have seen some back-stabbing, although that was very much from one person who gets on my nerves. I like all the other therapists, but this one guy triggers my bipolar signs, and is loud and overbearing and even in 3 weeks I've had a patient complain. The rehab team is great and the level of care in rehab is fantastic. The nursing care is not so fabulous in some ways. It all has a complex mix that winds up "great" or "I'm furious about this".
I'm noticing that after this last episode of illness I am more sensitive to words than I used to be. While I still use "a bipolar" and have no problem with "she's bipolar" being used to describe me, I am realizing only certain people have that right. I'm also finding I am less and less tolerant of people making constant "oh, that's psychotic" or "that's retarded" comments. I was irate about a nurse doing this tonight and I sincerely hope something comes of my complaint. It won't due to politics, but it better end. This facility takes a certain number of psychiatric patients. This means they need to committ to treating them respectfully.
What I wish people could understand without going through it themselves is how scary psychotic symptoms are. And I'm saying that based on mild ones. I've had a few times I've had some non-existent additions to my world and once it almost made me wreck my car. But generally I'm pscyhosis free. However, I have mixed episodes if I'm going to have episodes. When I was first diagnosed I was considered BPII for a few months, but the mixed episodes made it BPI quickly. I was having moderate episodes and didn't really understand why a mixed episode was the equivilant of a psychotic episode. When I had my first severe mixed episode I realized that there is nothing worse (I was working with psychotic patients so I could compare). With pscyhosis you aren't reality based enough to realize how bad things are. With a mixed episode you know and your brain won't regulate.
Regardless when people are so insensitive like that I really start wanting to either fight back in some way, force them to listen to me babble about it, or start hurling insults at them. That's not productive, of course. But once again, I wish people knew how often the person they are talking to has psychiatric issues or another hidden disability.
I do plan, by the way, to reveal my bipolar eventually and I am hoping that I'll get to do it in a way that embarrasses those who have irritated me without appearing for it to be planned. :)
Tuesday, February 26, 2008
But I wanted to note, to all those who are coming here because of links about quitting my job, I'm sorry. I was pretty open about it, but I'm certainly no expert, nor am I probably even useful.
The stress level is going up some this week. There are some difficulties that concern me a bit. And when I was hired I agreed to go to other buildings "if it was a major need but rarely". I've been working 2 weeks and already they tried to divide my time between somewhere that isn't really that far away from home, but if added to the additional driving to where I work would make for too much driving and not enough time in the day. No way am I driving. I'll find another job first. Various other things also are occurring, but that's part for the course, I guess.
We'll see. Really looking forward to Thursday off.
Friday, February 22, 2008
For the first half of that summer I had worked in a therapy room where the PT kept a radio going much of the time. It bothered me, but not so badly I couldn't stand it when there was other noise. However, when music was the only noise, like in my car it was intolerable. Far too loud and concentrated. I started listening to audiobooks in the car on my commutes and that has not yet changed.
However, over the last while I've started to tolerate music again. At first it didn't bother me anymore. Gradually it got so I actually paid a bit of attention to it. And today I found myself enjoying a song for the first time in 4 years. It's stuck in my head some, which was part of the previous problem (it is way worse than the typical stuck thing) but not so badly I want to rip my ears off.
Anyway time for bed, assuming my neighbors quiet down. One has been revving an engine for hours and the other I think has kids sledding. Fridays......
Thursday, February 21, 2008
Tuesday, February 19, 2008
Of course differences are noticed. I am not making it in much before 10 and people see that and ask, especially since I have a 9 hour day (I work 4 9s and have a day off). I just use my typical "I take very strong medicine for sleep" explanation. But they even notice things like how much water I drink. I drink over 70 ounces minimum during work, and the only real breaks I take involve me walking down to the water cooler for 30 more ounces.
But today I found I may have to speak up sooner. And for a reason I didn't expect. I think I've been too unwell for someone to feel comfortable making this kind of joke around me for a long time, whether I was telling them or not.
We got a new patient who has a very severe anxiety disorder. I had a difficult time evaluating her because her anxiety is causing physical symptoms and it's hard to convince someone that their physical symptoms are under cognitive control. (This is probably God's idea of a joke, that I who have so frustrated my own therapist with similar issues now is dealing with it).
I was explaining the situation to another therapist who I really like, and she said "so she's psychotic?". I said "no......." since she is NOT psychotic and I am anti-using that as a category for all odd behaviors, because I know from personal experience how little fun psychosis is. And then further psychosis jokes were made.
If that kind of thing continues I'm going to be telling at least some people sooner just so that I don't have to hear jokes about something I dread, and with every right. Psychosis isn't funny, it is the nightmare that can take away all that I have. I know perfectly well that every day now is a gift and that in all likeliehood I'm going to get sick eventually. I also know I can be pretty content with this time, because I'm getting to experience so many things I've never felt well enough to do as an adult, and I can enjoy them more than the average bear would.
But this was a reminder that all will not be well forever. That and a family that made me angry. Which has nothing to do with anything but sheesh.
Must get to sleep. One more day in the big 3 days.
Monday, February 18, 2008
However, I was not perfect with it. I occasionally ran out of something and didn't get it filled for several days. Or I would forget to take pills until too late. Or I would skip some of the heavier sedation if I needed to be up earlier, rather than trying to take the pills earlier. I would fall asleep in the early evening and wake up too late to take pills, and then repeat for several days.
I got away with that. I doubt my doctor suspected how much I played with the pills. But I wasn't as sick then (even though I wasn't really stabilized I wasn't out of control) as I was the last 2 years. I had good days and bad days. Most of the last 2 years was just bad days. The last 2 months has been nothing but GOOD days.
In the last 2 years I had to go back on my meds rapidly and forcefully after my lithium toxicity. I can't describe that week I went from no meds to full doses. I thankfully don't remember much of it as I slept a great deal, but it was unpleasant.
Since that time (May 2006) I have barely missed a dose of anything. It's possible my errors for 2 years are less than 10, as long as you don't count dropping a pill which happens from time to time. I am so incredibly compliant with those meds that I deserve to be called one of my doctor's most compliant patients, which she called me even BEFORE this happened.
Compliance is being rewarded now because instead of making me quit taking lithium while the diabetes insipidus is figured out I am being allowed to take a medicine to help my kidneys and waiting for the nephrologist appointment, which is in April. Normally I would have been told no more lithium because of the potential for harm and a fear that I wouldn't do what needs done to take care.
Last night I needed to bring a new bottle of Seroquel back to my bedroom. I forgot, and it was too late to take it when I remembered. Not a big deal really, aside from not wanting to mess with how well Seroquel works for me. However, I found it so much easier to get up and get to work this morning. I was thinking about how great this was and how my flu must FINALLY be letting up when I realized it was probably just that I wasn't drugged as much as usual. That was a harsh reality.
It's just never going to be perfect. But it's so close.....
Sunday, February 17, 2008
I can't say there's a lot to say. But in a good way. I continue to fight some serious fatigue from the flu and the newness of my job. Change simply is hard for me. I'm also not feeling great. The constipation has reached peak severity again. Now my belly is so distended that I get nauseous if I eat. It's a lovely cycle. If I can't go by Tuesday I'm going to have to go to the doctor and I imagine get an Xray because I can't even remember when I last went.
I need to get more water worked into my job. I have to take time to make sure I'm getting my 3 jug things each day during the day. The change in routine is contributing to this.
I weighed myself today and was really excited to see I've lost 6 or 7 lbs. With the extra weight in my belly that's pretty good. I think that's about a 2 week loss, since my thyroid med was increased. It's good to know that some weight loss is possible on Seroquel and Depakote. My new insurance rates are lower if you participate in some wellness program and you get discounts. One option is WeightWatchers and I'd like to try that in a few more months.
In a few more months is the tag line around here at the moment. After we are well past winter, in April or May, I'm cutting counseling sessions. I really think I could be ok with bi-weekly, but at first we're doing 3/month and the 4th week will be Dr. Mind.
I started a med last week to protect my kidneys. It's complicated but it is actually a diuretic that (if I understand this myself) works by controlling what I have out of whack and therefore triggers a more proper amount of urine. I don't know if it's helping yet or not. What I do know is that it makes my urine smell funny and the animals are attracted to smelling the toilet after I use it. Fabulous. (Although one of the funniest side effects ever).
I feel like I should have some deep insights into this point in my life. Friday I was told I've done a good job. I haven't heard that in a long, long time. My gut tells me I've found home. It's far from perfect, but it's much better than so many places. I have a feeling that sometime down the road when my illness comes out it will be ok to be bipolar.
I guess the best news is that I am not finding much to say. Much of my life right now is so transitional I don't know what to say, and the rest is good. I can't remember how long it's been since I had a day that was bipolar-colored, but it was around early-mid December. Two glorious months, and what's more they used to be the worst months of the year.
More later, unless my belly ruptures...
Friday, February 15, 2008
I'm sorry I've been incommunicado. Between still feeling tired from the flu I started getting 2 weeks ago, the stress of the new job, trying to communicate with Dr. Body about my kidneys while he wasn't in his office which stresses me out, trying to adjust to my new 9 hour day schedule and the major snowstorm we had here this week it's been a challenge. I've tried to read and comment more than write on here because I need time to process before I say too much about the job. Hopefully this weekend. Although if I do everything I said I'm going to do this weekend I won't sleep and we know THAT'S not happening.
I'm also very sorry if this is double-spaced. Blogger is being weird.
Anyway, I just got off work, got the best pizza I've ever eaten (possibly because of how hungry I was) and got home to battle with my computer. I think I have some disrupted files, and I have a new Ipod that I can't get to work properly which I think has further messed up files, and it just took about 15 minutes to get it started.
I'm now going to go to bed. More later.
Monday, February 11, 2008
Everything went well. I like everyone, the benefits package is good, (more expensive but better coverage except for my therapist), and the control freakish attitude of the previous company is GONE. I have to find my own way of organizing things. That's actually going to be a bit challenging I think because I know what I have preferred in the past but I don't want to totally impose an entirely different structure on the people who've been there. But the way the prior therapist did it is confusing to me.
The best part? I was done a bit early. I went to my mom's and had supper and then realized that I was going to run out of lithium tomorrow and with bad weather forecasted I should fill it because I HAVE to get a level done this week before I have further kidney testing. I don't think I wrote about that yet; I saw my psychiatrist Saturday and she'd talked to my family doctor. (I've finally had it with the formal names; from here on out they are Dr. Brains and Dr. Body respecctively.) He'd told her he next wants me to have something called a water deprivation tests, which when Googled sounds unpleasant. Remember, my body is desperate for water at its' best, and this means, well, no water. For hours. During which I have to lay still except for peeing once per hour. So Dr. Body called today and tomorrow I'll talk to him and see what's up. The good news was that the bloodwork last week showed good kidney function, which is a huge relief. Anyway, I'm sure that needs scheduled soon, if for no reason than to get it over with, and that means a lithium level Thursday. So I went to Walmart near my mom's and got that plus a few other things, drove home and got the trash out, all before 9 pm. That's a miracle. I did stuff after work and still was home earlier than my usual Monday (for the last 2 years Mondays have been Dr. Emotions night; that is now a Thursday afternoon thing).
So all in all, one good day. I've got lots to learn and figure out as this is a new position but I'm excited.
Friday, February 08, 2008
Thursday, February 07, 2008
The author has reached a point of having tried everything and has had a number of rounds of ECT. She is bordering on stable on a list-ditch drug attempt. I have always assumed that like me she has been totally unable to tolerate the various meds in the past.
When I say unable to tolerate I mean that I have had rashes, toxicity, no response, hypertension, severe edema, extrapyramidal syndrome, etc. I've never really just refused a med because of not liking a side effect. If something was unpleasant we've always tried to push until we were sure I couldn't tolerate it and that nothing else was going to reduce the bad effect.
I've gained 80some pounds. Size 6 to 18, all because of meds. (Presumably; I have a very small build and my family are all small people, so I assume I would have stayed small). But I never would think of refusing any of my meds over this or any side effect that isn't potentially seriously harmful. If a med works I take it.
I don't love the side effects. I miss my thyroid gland. Diabetes insipidus turns out to not be a lot of fun. I wish I felt small and pretty again. But small and pretty doesn't matter one bit in comparision to not feeling suicidal, to having my mania controlled.
I'm not referring to what happens if the first thing offered fails. I'm talking about what happens if you have been on some drug, lithium for example since it's one I fight with a lot, and you know it works but you don't like the weight gain. You also know nothing else has worked like that for you. Do you continue to refuse to take lithium?
I just can't imagine that. Whether it is because I've convinced myself that some medicine magically works or because I just can't imagine choosing to feel like I do when my meds aren't right, I am horrified at the thought of refusing a med that works for a non-life-threatening reason and then facing life.
What do you think?
Leaving my job Tuesday was odd. Partly because of people being sick, partly because of other things nobody seemed to really care it was my last day. That actually happened at both places.
One of the things at that job that happened a lot that made me not like my job was that my assistant tended to be sort of self-centered. Ok, very much so. Unless I made a huge fuss and took time the night before to divide the patients and assign them she would take all the people who were easier and more interactive and I was left with the people who had less ability to communicate and who needed things like splints and wheelchairs. I really like doing those things, but nobody wants to do them 100% of the time.
For whatever reason the manager didn't really enforce that it should be otherwise and made a lot of excuses for my assistant. That came up a number of times in my vocational rehab evaluation report, that my assistant was being allowed to do things I wasn't.
It took months before the assistant quit doing another thing that I hated, which was she'd be told to treat 7 hours. She'd add minutes on to her patients, treat exactly 7 hours and leave me with an entire extra treatment. The often happened on days I had to be someplace after work.
On Tuesday she did the reverse. She got her full hours by dumping all the sick people onto my caseload (I only got 4.75 hours).
And then her crowning show of selfishness: She left and didn't even bother to tell me good-bye, good luck or anything else. Not even a note.
That's helped a lot. I truly don't feel sad with this move. I'll just be glad to get going.
Yesterday I had my drug test (they've not fired me so nothing must have shown up :), and was fingerprinted. I had the distinction of being the first person the lady had seen with skin so dry my fingerprints wouldn't show. Partly that's just natural, partly it's from healtchare, partly it's from wearing gloves more and washing even more than usual the last few days, partly it's from using Purell, and partly it's dehydration. For a while they thought the machine was broken, but it was only me.
Who knows what the future holds? I have always worried about that. For the moment though I am trying to just enjoy today, something I've never succeeded at. I'm having a very relaxed few days, eating what sounds good (justified by not eating almost at all for days while sick), napping, reading, etc.
I really hope I can keep going this way. I like it.
Tuesday, February 05, 2008
As I mentioned a few days ago, each of my facilities has had an illness and I got to have some of both. I'm feeling about 10% better today but where I was the residents sure weren't. Stomach flu everywhere. Nobody leaving rooms, no activities, and it was dead quiet. Nursing home quarantine is a weird thing.
I wound up with a reduced caseload so I left way early. Conveniently, since I had to get some labs done for the diabetes insipidus thing. More on that later.
I am now going to bed. I can't believe how tired I am.
But it is OVER. I am officially not-really-employed for the next 5 days!!!!!!
Monday, February 04, 2008
I'm having trouble even eating because food tastes icky. Even water tastes wrong and that's a major issue.
I went to TWO urgent care centers tonight. Both had waits nearing 3 hours. That would have gotten me home at 11 or later and I couldn't even get a script filled. So I will try tomorrow.
I've never seen anything like this crowd. HUGE. And we all had the same thing. The coughing noises were atrocious.
My doctor called me today and left a message about how we need to talk about testing that will need done for the diabetes insipidus diagnosis and some medication (yay, another med. Just what I was hoping for! I knew I couldn't get something that didn't require meds). I think he meant talk on the phone; I am going to beg for all I am worth for an appointment tomorrow.
The good news is that I have only one more day of work this week. I have fingerprinting for the new one Wednesday, but no work. And today went pretty well. Aside from my face hurting and the coughing.
I was found by a search for diabetes insipidus. Don't use me as a reference for that! I know what it is and unfortunately I'm pretty sure from my reading I know what tests the doctor is referring to and I won't like them. It's too new to me and apparently to my doctor as he admitted in the message that he is reading about what to do.
No good way to end.
Sunday, February 03, 2008
The respiratory one is, according to google, viral bronchitis. And much fun it has been. I believe that this is likely influenza tamed by the flu shot, especially based on how badly it has been going around. Regardless, I am exhausted and pale and still feverish.
I MUST work the next two days. I'm not so sick that this is impossible, but I am sick enough I'm going to be slowed down. After those 2 days I have the rest of the week off. Yay for that, at least.
I will say that Zicam and EmergenC seem to be very, very useful supplements. I'm due for more Zicam right now in fact.
Anyway, the next few days aren't likely to involve much talking from me. Lots of signing my name, lots of last projects. Little extra stuff. Not much of a problem except I'm not likely to be feeling super along with it being the last 2 days.
Back around Wednesday.
Friday, February 01, 2008
About 2:00 I started coughing. Then sneezing. Then my head hurt, except that happens every day, I think from dehydration from the diabetes insipidus, so who knows about that one. And now my throat is starting to hurt. I already cancelled my hair appt for tomorrow morning because I know it's not going to happen.
I stopped on the way home for back-up. My sister has told me EmergenC is miraculous, so I am trying it and Zicam, which my mom tells me is great. I'm up for anything. Colds are a bit easier now because I'm allowed a certain form of Mucinex which doesn't help a ton but does help a bit. After years of nothing that a lot.
I experimented today and learned I literally desperately have to pee every 45 minutes. How this escapted recognition is beyond me. I also realized that my theory I've always held that I didn't care if my kidneys had signs of damage didn't include this particular problem; there is no way I can go long term having to pee so often, not to mention all the problems that go with perpetual dehydration. My tolerance for the severe at times constipation (yesterday I broke blood vessels in my eyes straining) is limited. As it should be.
Anyway, I didn't get home until 10 (didn't go in until late today thanks to ice) and I really don't feel good so I guess it's time for meds and sleep.