Monday, November 30, 2009
Dr. Brain is still out. I have an appointment with her Saturday, but I need to be on the patch before Saturday if I can resume it. Otherwise I need to be in the psych unit about Saturday (keep in mind not only have I had no antidepressant, I have had no psych meds at all except a partial dose of seroquel last night. Tonight I'm taking them). I can't just start another antidepressant; it would be 2 weeks from stopping before anything else could start.
I called her secretary, and her secretary was extremely unpleasant. She refused to just listen to what I was saying, and kept telling me that I needed to contact the doctor who prescribed the med, that it had nothing to do with Dr. Brain, and that Dr. Brain couldn't help me. I couldn't get her to listen that Dr. Brain did not actually write the prescription, but Dr. Brain did put me in the hospital to get put on it, immediately before she got sick, that it is definetely a Dr. Brain med, and that I do not HAVE another doctor who could do anything about it and that the Dr. who put me on it is NOT my doctor, he is the hospital doctor. She finally agreed to put a note to call me ASAP, but noted about 15 times that Dr. Brain won't be back until "sometime this week". I swear she was ENJOYING not telling me specifically when. I pointed out that since Dr. Brain is the only one who can make this decision I just have to wait until she is back, but that when she is this is important. However, I suspect Dr. Brain will not get a message that says what is wrong and will assume it can wait until I see her Saturday.
So Dr. Mind is calling tomorrow for me. Hopefully his "Dr." designation will get actual respect. This happened once before and she treated him sweetly after being mean to me. This woman is a dragon. She has yelled at me for things like calling for a refill I didn't notice I needed several days after an appointment. Yes, I should check and usually do. But Dr. Brain has a list in front of her that says when I need refills too, so it wasn't all my fault. And today she made me so mad I raised my voice, something I never do. I swear she hates psych patients and thinks we're all manipulative. I understand that she's trying to protect the doctor and that this is her job, but there are ways to do that without being mean, and she could simply listen.
Plus, it is not my fault that I was sent home from the hospital without any alternative doctor to call in a situation like this. My family doctor has gone above and beyond, but he can't do what he isn't comfortable with. The hospital was stupid to not do that, and so my plan is that if Dr. Mind doesn't accomplish anything then I will call them and demand that someone do something.
So, now I potentially could be facing an appendectomy AND a psych stay. How lucky am I?
AND, not only that, but I get to collect a sample of a very icky body fluid, one which I had available in abundance an hour before I knew I shouldn't have washed those clothes. (The only good thing is that makes me think appendicitis is less on the table).
On the other hand, I've eaten 2 pieces of toast. And I'm going to go to take my zofran now, and then eat one more with my psych meds. I was given a med to totally neutralize my stomach acid, essentially, and while it was gross (it's a powder form of Nexium and you mix it with a tablespoon of water, let it thicken, drink it, then have to rinse what stuck to the cup out and drink that. I don't know how it tasted, but the let it thicken part is disgusting and it looks like a tablespoon of chicken fat), it really has helped. The hope is that it will let my meds stay in, even though they are a lot more challenging to my stomach than toast or cheerios, the only foods I've had since Friday.
So, I'm very stressed, but it's looking a bit like I might live, hopefully with my appendix intact.
-Dr. confirms-I'm really sick. Off work til Wed. Work unhappy. Never mind I've not eaten in 3 days and may have appendicitis and am off psych meds they don't know I take, they're mad.
-I may have atypical appendicitis. It's under clear suspicion and I have the following situation going: I had more bloodwork today. If it shows worsening of infection then I'll see a surgeon ASAP. If any pain increases or I get a fever, I'm back at the ER. If I'm not eating and more normally digesting by Thursday I get a CT again and see a surgeon.
-I got more nausea meds. This part is good.
-This is the part I simply can't go into right now. I am now at high risk for allergic reaction to the patch, if I didn't have an allergy already that was what flared up Saturday. So I can't take it until Dr. Brain clears it, if she will. And that has turned into a huge disaster.
More on that part later. It may be much later, after I see Dr. Mind (this is so upsetting I'm driving all the way BACK to the city to see him tonight), depending on who I talk to when.
Sunday, November 29, 2009
Tomorrow is a visit to Dr. Body, which I'm praying I don't have to beg for. He'll see me, it's just matter of having to talk to the nurse to explain my situation if he is booked. I'll be calling at 9:02. I actually think I may need one more thing of fluids. I can't get enough in to make up for what I lost plus my extra needed for the diabetes insipidus. Plus I think I have a UTI. And I need to know when I can put my patch back on. I'm getting really worried about being off psych meds so long. I don't like it. They said no last night but I can see blood in my urine. Lots of it. I also have trace amounts, not visible. I also am supposed to see Dr. Mind but that depends on timing and if I still feel contagious. I probably will cancel; this is too virulent to risk it even though I need to see him. No point in making him sick so he misses appointments. That I'll decide in the morning.
At least I should make it through the night at home. I ate Jello because I finally felt hungry, then it made me nauseous. Not as much as it has been though and everything has stayed put now for 12 hours.
The doctor's office will be fun. I'll have to wear a mask and use sanitizer and I bet everyone will stay very far away. I don't have H1N1, but the rule there is nausea=mask and I'm nothing if not compliant. I hate masks.
Anyway, I think my laundry just finished. Time for rinse 2 with vinegar, which I pray disinfects as well as the internet claims.
I just took one of my many anxiety meds that is benadryl like, so I'm hoping that will help with the nausea and itchiness, which is reduced.
I'm going back to the ER. Horrible pain.
Saturday, November 28, 2009
My mom took me to the ER. I didn't think I could drive. I was going to go to the one in the city connected to my doctor, but then once we were moving I remembered that the crappy hospital had a new ER, staffed by drs. from the city hospital, and that it had a new gero-psych unit that meant it would be able to do my labs and understand my condition.
Thank God I did because it was a very good ER experience. They were rather freaked out by my rash, which included glowing red ears and face and was covering every inch of my body by the time I got there and someone in registration was alarmed enough to call a nurse. They suggested my patch might be concentrating due to the dehydration. So I pulled it off and very soon at least quit breaking out. They gave me 2 liters of fluid, IV Benadryl and IV Zofran, a script for Zofran, and I'm home. I'm now splotchy, not glowing, and much less itchy. I'm also much less nauseous and have peed for the first time in around 12 hours and am swallowing teapsoons of water happily. I'm going to take some tylenol for my headache/fever and some valium to sleep and try to get over this, as soon as I've relaxed a little. And hopefully gotten warm. I spent the whole time in the hospital shivering. Tomorrow i will have to go fill my script for Zofran, and then I suppose I'll have to see Dr. Body this week for lessons on not getting that dehydrated.
It turns out that my dehydration had gotten serious enough for me to get a little confused and so I didn't make the best decisions. The rash was actually a blessing because it made me realize that no matter what the level of dehydration I needed attention NOW. The rash still frightens me because I have no idea when I'm safe to put my patch back on, but it won't be until there's a lot more liquid in me.
The 28th of November? One physically horrible day.
Chances were pretty good that I was going to get sick. I nearly always get sick after/during any major episode. Since this started in July and the only time I was sick was a sinus infection, I was due. I was actually a bit afraid I'd get sick in the hospital, simply because the sickest I get mentally is usually when I get physically sick.
Funny coincidence? I checked back. June 28? I was home from work with stomach flu.
I'm a bit worried here since my niece/nephew is due on the 25th and what if that's the first day I meet him/her? It could hate me forever.........
Just yesterday we had at least 2 (maybe 3) go out with this to the hospital. And another has chosen no hospital transport, so essentially that person is probably just going to die from it at the nursing home, or fight it off on their own.
This is a horrible bug. I spent the whole night in horrible pain in my belly and body aches, vomiting and diarrhea and a high fever. I still have a high fever; I have my furnace on 75, I have on sweat pants, a t shirt, a sweatshirt, wool socks and I'm underneath a heavy down comforter, 2 lighter down blankets, my weighted blanket (which is made of 2 thicknesses of a very heavy fabric), at least one more blanket and 2 down throws. And I'm shivering still.
I truly thought most of the night and until about an hour ago that I was going to either wind up at the ER or at the very least calling Dr. Body's answering service, because of the danger of dehydration with diabetes insipidus, and I couldn't tolerate even an once of fluid until 2 hours ago. I even had decided what hospital to head to (it gets tricky. The local ones suck. There is a slightly better one 30 minutes from here where I had a HORRIBLE experience several years ago, when I was treated absolutely when I had a med complication. There are 3 in the city, but if I go that far than it becomes questionable whether I should just head to the major hospital where Dr. Brain is and where more than one person may have heard of DI. This time I was heading for Dr. Body's hospital. Really, really need to get this clarified with him.......)
Anyway, this has been a terrible experience for me. I can't imagine it for my elderly patients, and I have no doubt there will be several deaths because this is vicious. The fever alone is something else.
So please, if you pray, do so. This is a bad bug, and not only is it really bad when the patients get it and suffer, but they'll also suffer if staff get it. Hopefully that won't happen and I'll have gotten it because I have been so very sick lately that my immune system wasn't working great, but if staff get it then there are either shortages or staff who don't know the patients, and either way care declines. This also can/will cause quarantine if it gets much worse, and that means no visitors, no patients out of their rooms, and it is thoroughly depressing for the patients, especially at this time of year.
I just now took tylenol, so hopefully my fever will come down, and I've at least had a little to eat. Now I need to get something with electrolytes in me. This part gets tricky because I am so sick that looking into the fridge makes me ill. Enough so I'm about to get my ginger ale out of there and put it in the garage.
Friday, November 27, 2009
Thursday, November 26, 2009
So anyway, when I woke up that morning I knew that I was firmly hypomanic (at the end I'll say I was mixed. I was mixed as that just means depressed and manic simultaneously; however I was calling it hypomanic because that was the horrible part, just as the week before the mixed had been called depression. I'm rarely having an episode that isn't mixed, so mixed isn't a very good descriptor for me). I had suspected it the night before, but now it was without a doubt. I can tell from my handwriting now that I was hypomanic; it changes drastically.
I wanted to leave. Immediately. I was so very overstimulated I couldn't tolerate it, and I knew that it would be worse to stay another day and than it would be to wait at home to see Dr. Mind. I needed quiet, I needed to get away from the lights, I needed space.
I talked to the social worker very early that day because I had wanted to know when I would be seeing Dr. Brain so I could be sure I hadn't scheduled something else that day, as I'd scheduled a bunch of therapy and a Dr. Body appointment over the next days, and a Dr. Brain appointment is pretty much an all day committment. She was irritated at me for asking and for setting up those appointments. Which is idiotic, I knew I needed to be seeing Dr. Mind twice a week and I know (and she doesn't) that he doesn't work full-time and that his appointments can fill quickly and that I needed to schedule ahead or I wouldn't see him as much as I needed to.
So that's when they decided it was time to tell me Dr. Brain was off for a month. They thought. She'd make sure, but she thought it was some medical leave. I'd be set up with someone else. I was rather horrified at the whole thought of that, but said nothing. I just hoped to be set up with Dr. Inpatient. I also wrote a resentful paragraph about how tired I was that every time I called Dr. Brain by her first name, which I've been doing for something like 7 years and which many of her patients do (and not only is this ok with her, but it's got to be remembered that I have an unusual relationship with her. I have seen her or spoken to her on the phone every month at least once, without missing one for 7 years, until this month. Plus we email a lot. It's just the nature of my illness and what I have needed. But every time I called her "Anne" I'd get a response about "DOCTOR BRAIN". Like I was wrong. It got really annoying, especially from the social worker who I was already mad at for telling me I was wrong to set up my own appointments with Dr. Mind.
I think the next paragraph of my journal says a lot:
Well, today I think I no longer can say that I've never had a normal result. One month ago today I entered the hospital. One month ago this minute I was sitting in room 620, trying to find things to do until the last group of the day, and trying to gather the courage to ask for my pajama pants and weighted blanket, which had been taken. Without looking back at the blog or journal I remember little of that day already, mainly just crying for hours and feeling lost and so confused that I saw no doctor, had no med changes, and had nothing different than the day before except I was locked up and someone drew blood.
They said Emsam would work slowly, and indeed it has. I know the hospital doctors wouldn't have wanted me on the increased dose until now, and I've been on it just over 2 weeks. That is however the dose that works and I couldn't have survived 2 weeks longer on the low dose. But for once I've been on something for the typical amount of time to be feeling better and I am. Not perfect, I'm still reacting more than I should to the baby news, and I still am tired, and I still am more anxious than ideal, but I'm so much better. I'm not needing valium anymore and suspect I'll be down to one Klonopin a day soon as well. I'm starting to sleep very well without being knocked out which is the first step to backing off the Seroquel, which I want to because it is harder to keep my weight off.
Anyway, it's been quite a month but it's a month that the ending is positive. I know now that not only do MAOIs work for me the dietary restrictions don't bother me that much and I can handle them as well as like them.
Wednesday, November 25, 2009
At first I tried what I'd read, to clean the area thoroughly with an astringent before applying. So I used witch hazel pads to clean. No luck. Then I started trying different lotions on the broken out area. It soon was obvious that the best choice was diaper rash cream from Aveno, but that is white and thick and not attractive since some areas I'm treating are visible. I then just bought a lot of products and tried them, and if they seemed to work I started adding them to a mixture, which now seems to treat the patches fairly well, at least well enough for me to have a new site each day.
And the mixture is: Aquaphor, Balmex Ointment (not cream or it won't be clear), and glycerin. I don't know the ratios, but what I've been doing is putting regular lotion on after a shower, then treating any really red areas with the mixture at night. I don't treat it all at night because the stuff doesn't wash off easily and I can't put a new patch on it. So then in the morning I put on the new patch and then any red area is treated with a nice coating of this mixture. And it's working. The red areas are not so bad now, and they go away a bit faster.
I suspect this mixture will work well for dry skin and other irritated areas as my hands generally are so dry from washing at work that they crack and bleed and sometimes need prescriptions meds. This year I'm using alcohol liberally as well as washing even more than usual and my skin is less dry than I remember any year of working, so apparently this stuff helps that too (it's on my hands every morning and I wipe/wash it off so it's not slimy but it is there).
Anyway, that's it from me today. I overslept until 3o minutes after I usually leave, and now I just want to eat and sleep.
Tuesday, November 24, 2009
In July I stopped taking Depakote, a medication I had relied upon a very high dose of for many years, and which took 7 months to taper off. Before I had a chance to know how I really was doing without it I lost my job. As I recovered from that I had to go through the realization that Emsam had become my only real option. (I'm now working hard to remind myself that this is not exactly true, I know MAOIs work for me and if the patch fails I can do another one orally. It's just that there would be a 2 week wash-out and I don't know if I could survive that. I think that would be 2-3 weeks in the hospital and oh my.) Then I had to decide to make myself sick, and go through the last 2 months. Now I'm recovering from that, getting closer and closer to feeling good, and I got news yesterday that you need to read the whole paragraph below before you think I'm an awful person.
For the most part, this is wonderful, happy news. I'm going to be an aunt for the first time in the summer. This will be a much wanted, much loved baby with parents who will be so incredibly devoted to it. It's a chance for my mom to FINALLY be a grandma after 45 years of parenthood. And I will love the baby dearly.
However, I can't say "I'm going to be an aunt" without crying. I can't think about how in not that many months I'm going to be holding this tiny person and seeing some signs of our shared genes (curly hair? my sister and I both have a type of birthmark not supposed to be genetic but too rare to not be in our case? funny toes?). I'm so excited.
I'm also hurting. A lot. I've known since the day I started lithium that I couldn't have children. You can't while on lithium, and I wasn't on it very long before I knew that I was bipolar,and I decided a very long time ago, when people first threw the idea around and I refused to accept it, that if I was ever diagnosed I would not have children. I knew that for one thing, for me it is strongly genetic and I will not pass this to a child, (and to be totally clear that is not true for most people with bipolar. My family tree however is weighed down with it, and my sister even did research on the genetics long, long before this baby was conceived). Mostly though I had to accept that I would never be a good mother. I am too sick too much of the time and after growing up with a bipolar parent who was unmedicated, I knew that even though I am excellent with meds, it wouldn't matter when I was sickest. And of course until the last year there was no sign I would ever live a life that looked normal to begin with.
Of all the things bipolar has taken from me, this baby is a reminder of the ones that hurt the most. Because the truth is that my sister, who I love and am not being mean about, has gotten to have so many of the things I wanted in life. It's not that I'm not happy with my life, it's that most of my dreams died a very harsh death, and she hasn't had the same experience, which is wonderful for her, because she has had to deal with many of the same horrible childhood experiences I have.
The truth is, I seriously doubt I will ever marry. The simple reason is that emotionally there is too much damage for me to even want to try to work on the things that a physical relationship would require. That may change, but I'm actually very comfortable with that idea. I'll never have a child, and I'll never be pregnant. Yet of the two of us, it was me who spent hours daydreaming about the perfect nursery and naming my unborn children while I was a kid. My plans after college very clearly included a PhD; that will never happen for me, while my sister is working on hers as I write.
And there's another point, one that I just realized after being too stunned by the news I'd just learned to really talk to Dr. Mind about it: there have been two other times I've been "Aunt Just Me" and both those times I've wound up losing all contact with the children I let myself love. This was first true with my high school friend's children after her alcoholism made me unable to be her friend anymore. Breaking the bond with the children was worse than breaking off the friendship, and that was not an easy thing. The 2nd time was with the friend who decided my illness was the work of Satan. Needless to say it didn't take a huge amount of her thinking that to not want me to be with her child, and so I went from Aunt to "awful person".
I know this baby will never not be my niece or nephew. Yet I'm scared to love any child like that again. When you can't have children and then people encourage you to love theirs and then take them from you it becomes ever more scary to try again.
And so I'm happy. But I'm also grieving my own losses, and angry again at my illness.
Monday, November 23, 2009
First, she's right it is probably pretty hard to follow the meds I'm throwing around if you're not familiar. I sort of work from a disadvantage because I am medically familiar with medications, and then I've been on so many.
So, first, a glossary:
-Seroquel-An antipsychotic. It does a lot for me. Obviously, it takes away the hallucinations I had sometimes. Importantly, it takes away paranoia. This was extreme (I was afraid to shower for 2 or 3 years and alternated sponge baths and 60 second showers followed by washing my hair in the tub with a pitcher; I was paranoid about people, etc. Now it's mild or gone, depending). It also is hugely helpful with anxiety and sleep. I'm taking twice what I was before I went to the hospital and it's a good amount for me now, although it's a high dose and the goal I'm sure will be ultimately to wean it down.
-Imipramine (Trofanil)-the antidepressant I had to come off of that I took for years
-Klonopin-an anti-anxiety med. I take it twice daily. I'm on a kind of high dose so I won't be shocked to be weaned at least down on this sometime.
-Vistaril-an antihistamine that is used for anxiety. I take it as needed. Sometimes not at all. Today once, and if I don't get sleepy in 30 minutes it will be twice.
-Valium-self-explanatory probably. I'm taking a pretty tiny amount. He prescribed a mid-range dose but told me to cut them in half at least. I actually take 1/4th, although tonight I'm taking more like 1/2 because I'm kind of upset (I'll explain later when I'm done thinking). It takes away enough anxiety to let me really SLEEP, and also gives me a way to function with a constant stream of the stuff I need during the day (Klonopin). Yes, it is addictive and so this is short term, but for now needed.
-Nuvigil/Provigil meds that help overcome sedation and let me wake up normally (aside from getting up to take them at 4 AM). They also boost my antidepressant. I'm on Nuvigil now but have been on Provigil for years and still take Provigil if I run out of the other since I have a tiny supply.
-Amelirode the medicine that controls my diabetes insipidus. Essentially it it is a diuretic that controls how much electrolyte you pee out. This keeps my electrolytes inside where they belong.
-Synthroid-again, a med most people have heard of. It treats hypothyroidism, which for me is a lithium induced problem.
-Emsam (aka the patch)-I refer to it as the patch mainly because this is one rare drug. More people have heard of the antidepressant patch briefly when it came out than as it is sold. It is not something marketed to the public and never will be. The hospital I was in is one of the top 25 psych hospitals in the US, and they put less than 10 people on it per year. I have discovered it is extremely hard to find anyone on it online even.
Lithium-again, self-explanatory. Although i guess I do take it slightly differently. I have something called rapid cycling where my moods go everywhere in short periods. Lithium at a tiny dose slows this. Lithium at a higher dose is great for me but I can't tolerate it anymore after toxicity.
Also, she asked what hypomania is. That's harder. Hypomania is technically, an increased mood less than full-blown mania. But that's kind of meaningless. And for me to answer is even harder, becuase my full-blown mania is generally not just that but what is called a "mixed episode" where I'm manic and severely depressed at the same time. Hypomania for many people feels good, like a lot of extra energy that is often creative that lets you get lots done without feeling an effort. For me it's when suddenly I'll attack projects like "let's peel all the wallpaper off the store room wall" at 10:30 PM, or "let's rip up the basement carpet (which is glued down), all alone!". Full mania on the other hand has been shown in projects such as canning insane amounts of veggies (we're still working on them 2 years later), staying up for nights on end doing this that or the other, or whatever. Full mania is when people go spending crazy, or make choices they'd never normally make, or when paranoia, hallucinations or delusions occur. Hypomania is "lesser mania" but it can still be unpleasant. for me it is a warning that I need to get in control fast or I'll be out of control in a matter of hours to days. The thing is that when feeling good is a relatively new sensation it's very hard to distinguish too good.
I'm too tired to type. Hopefully this says what I wanted. If not I'll try in teh morning. valium is working.....
I was happy for Monday simply because it was the day with art therapy twice. Art therapy helped me so much. Enough I'm still doing art projects at home. But then I was sad because the morning one was cancelled.
I had extreme anxiety again that day and needed my PRN earlier than usual. I think a lot of that had to do with discharge and wanting to know what was happening, some was because I hated that others were leaving and I wasn't well enough, and part was the beginning of hypomania. I don't think it helped at all that between the anxiety meds and the higher dose of Seroquel I was very, very sleepy. I also was scared about asking to stay until Wed., even though I knew it was psychologically better.
When I saw the dr. he was fine with the Wednesday discharge. He did make sure to remind me I couldn't become too dependent on the safe environment, but I pointed out that I had never been a suicide risk like the last week had been and that I know pretty well how to judge my own safety because I've been doing it a long time, and only a few days after wanting to hurt myself was not a great deal of time. He was fine with that.
I spent time that day reflecting on the week and how different it had been from what I'd thought. It was (and still is) so odd to think that I drove up there on a beautiful fall morning, felling tired and sad and wanting to die, 15 minutes after arrival the door locked behind me, and I proceeded to totally fall apart and then start to recover. In 7 days. I also thought about how wrong my expectations had been. When I discussed this with Dr. Brain we didn't get too specific. Partly this was because she didn't know precisely what would happen since I didn't do this the way the manufacturer suggets. Partly we were supposed to have one more appointment before I went into the hospital. But I had thought that I would go in, start Emsam day 2, have everything else stay the same med-wise, and walk out in a week feeling much better. That wasn't quite the story. I had no idea how scary and horrible it would be to come off the med completely.
I also felt impatient that day. I'm used to pills that you take 4 days and can increase the dose, or whatever rate. Because of my sensitivies I generally am started on the lowest possible dose of things and raised gradually, as fast as allows my blood to stabilize. With the patch that can't be done. You have to wait it out for what seems like forever. I did increase after 2 weeks, but the hospital doctors wouldn't have allowed that.
I spent time on the phone that day making arrangements for things like Dr. Mind appointments (lots) and a Dr. Body appointment. I made a list of things that needed to be picked up on the way home. I also continued to feel very pressured and manicky, and realized eventually that I was hypomanic. I started wanting nothing but to go home. Oddly, along with my hypomania I was exhausted and had to fight to stay awake for the last group.
I was on a regular diet that day, but still they kept vegetables from me and once sent me creamer but no coffee or milk. I decided at that point that dietary hated me.
I wrote on and on about things I was tired of. I won't bore you. I was very upset that evening, and it was the first time it hit me that I really should have been talking to SOMEONE for therapy 1:1 while I was there, and that I was really upset this didn't happen. I almost sound panicky in my need to talk about it.
The final straw in my decision to discuss leaving on Tuesday after all was a new guy. Again, I don't want to say much about other patients. But he came in with this attitude that it was stupid and not what he wanted (yet it was a voluntary unit) and made lots of comments about HE had things in his life that were important and that HE didn't let things mess up his life and HE was functioning fine, just hadn't been compliant with his meds (which I don't think he saw as a problem). I hope he didn't realize how terribly insulting he was being, because he clearly saw the rest of us as a group that he viewed negatively and judged. I already knew I was hypomanic. Listening to him made me realize that I needed away from people and that I was losing all patience rapidly. I was so angry at him...
And that was the last full day.
Sunday, November 22, 2009
The thing is that it scares me. Having so much energy suddenly means I have to think about hypomania. It's a big risk on the MAOI, and I've already had enough to require treatment while in the hospital. It's also why I'm on so much Seroquel and so many anxiety meds.
I'm used to being exhausted. Ever since July I've been dealing with some level of depression and it was exhausted depression from the start. Prior to that I was feeling great, but also I was using so much energy driving 90 minutes each way to work in a situation that was stressful and which made me put unreasonable demands on myself. Plus I had just completed my Depakote taper when i was fired, and Depakote made me tired all the time. Even on low doses it made me tired. So this is the first time I've been working reasonable hours and feeling better (I want to say good but I'm not really "good" yet) in so long I can't remember. Therefore what I've accomplished may be reasonable but I have not idea how to judge. This has been a long time problem for me, feeling good as been rare enough I need help to figure out good versus too good.
Dr. Mind and I shall have a lot to talk about tomorrow.......
Well, today came along and I had energy again. So I took advantage even knowing I shouldn't. I scheduled carpet cleaning (seems like a good idea after the furnace installation), I have cooked a little, done more laundry (more to come and I need to iron tonight to stick to my stress management plan). I also put up plastic coverings over my patio door, inside and out. Shrink wrap is fun. When I realized how bad the door is I also used that spray foam stuff to seal some of it because that door must be replaced in the spring. In fact, not only does the door have to be replaced so does the linoelum (too bad, I HATE what is there). Oddly I think the neighbor children were calling me "Olivia" and getting upset when I wasn't responding. I love that name, but it isn't close to mine. Nor have I met the neighbor kids in question. And I'm still needing to do several things. Like make dinner. And hang (and please God NOT iron my kitchen curtains). And clean up a few things since the furnace people come tomorrow. And change my sheets. And I'm tired........
And to make it more interesting, I was correct and apparently it is much easier for a hip patch to fall off, because mine did, despite being taped down when it came loose.
I can't believe I've done this to myself. At least Thursday is the holiday. I may work Saturday, I still don't know, but I offered since I don't get paid for Thursday. I'm actually hoping not though.
I'd better check those curtains. I hope they can just be hung.......
Saturday, November 21, 2009
Eventually (and of course later than any other day blood was taken), the plebotomist (thankfully not the one who made a crazy joke on the psych unit) came and took my blood. Unfortunately she didn't put the pressure dressing on correctly and well, there was a messy incident.
I then went through a mess with meds that was ridiculous. I take a med called Nuvigil. It boosts my antidepressant and helps me wake up. It's a new version of an old med called Provigil. When I talked to admitting before I went to the hospital they said to bring med bottles so they could verify that things were written as I said. What they didn't tell me was that they'd also use my meds if they needed to. And with Nuvigil knowing that turned into a $450 loss on my part. What happened was that I only had about 5 when I went in. I didn't worry about calling Dr. Brain to be sure she'd gotten my insurance approval for me because I knew I'd see her within a few days of getting out and I'd be fine on those 5 until then. So I ran out, the hospital had none, and they seemed to have no clue what to do. Finally I gave them a script I had from Provigil that I still had in my purse and hours later I got a dose of that, which I think caused the hypomania we'll talk about tomorrow. (The reason this cost me $450 is that after discharge I had to get something and without prior authorization I had to pay. The hospital sent home a Provigil script which I also didn't have prior auth. for so I paid $136 for 10 pills, just so I had something. Some of the $450 I may be able to get back. A lot, probably not.)
Sunday was mostly a repeat of Saturday. Same awful group. I'm a Christian and I am a big advocate for Christian therapy and the role of faith in healing, but I was pretty upset about this group because she made it far too faith based. I felt that the psych unit, a place where people are so easily influenced, is not a place to talk about your specific beliefs. (Hers and mine weren't the same, but even if they were I wouldn't have thought it appropriate. Religious thoughts can be very distressing to some mentally ill people, and very confusing. Plus, that's a time you need to believe what you believe and be left to it.) Partly I feel like this because I know that I felt so confused and odd during some of that time that if someone had tried to teach me to follow the tenets of the Mayan faith (random example) I might have, despite that not being my belief system when well. I still have to talk to Dr. Mind about this part; we're approaching it but it's hard for me to say.
I again made a collage all afternoon, wearing my sound blockers. Being out was so exhausting. I wrote quite a bit that day about how I was so unsure I would be able to handle my noisy job in only 2 weeks.
I wound up napping that afternoon and a nurse had to wake me to eat. I shouldn't have bothered. Despite my doctor's attempts to help the diet, I was given 2 grilled cheese sandwiches that day, one for lunch and one for dinner. And I most certainly did not order two of them. I had been given a choice of broccoli, which is not on the MAOI diet but was listed as a thing I couldn't have on my card. I really wanted that broccoli. And they didn't give it to me. Nor did I get another food item. So I had an applesauce from the snacks, and spent another bit of my life very upset about this. Now that I'm home I'm still having a hard time figuring out what I can/want to eat. I still have a pretty limited number of things I'll eat, I just have figured out what I can eat that will supplement the calories a little on a day I'm not hungry, like today. I've also figured out some combinations that help, like egg beaters with a little breakfast sausage (can't have other sausage) and some safe cheese. I eat that a lot and it's got plenty of protein at least. Dr. Mind told me today that this symptom may hang on for a while. If it does I truly blame it on the hospital. I was ready for the diet. I was not ready to have a random set of restrictions even my doctor said I didn't need enforced. I was not ready to have every food that I might eat taken away from me immediately after being scolded for not eating. And I'm even more angry that I didn't get a dietary consult about the diet after requesting it, because now it's going to cost me $.
So dinner made me cry. Sunday was a harder day for me. A lot of people thought they might be going home Monday and I wasn't going to be going until Wed. or Thursday. I was a bit afraid of being alone, or being there alone with this one patient who....I don't want to say much about other patients......let's just say the high functioning unit was a stretch for her and if you want to know why I had a hard time look up "learned helplessness" and then consider she wouldn't sit near me at meals because with my special diet she couldn't copy my choices. Or the time I took a shower after her and had to spend 10 minutes cleaning up her dirty washclothes, dirty towels, the bottle of soap she'd spilled all over the clean linens, and her slowing spilling tipped shampoo bottle. That was not when I exactly felt like taking care of other people........
I was really surprised still at that point by how emotional I was. The crying about dinner (again) wasn't like me. The inability to accept that my diet was really screwed up and that what I was trying to fix that was ineffective was too much for me to accept. I also cried when I found a hair from my cat on my pants.
I worked more that day on being ready to leave. I called Walgreens and asked them to have patches available and was reassured they would. I asked the nurse for the tiny amount of guidance of what to do if a patch fell off. That answer was all the training I got in patch care and it's what I blame for my experimenting in treatments for broken out areas. (I know I'm obsessing about this, but the thing is that if an area breaks out I obviously can't patch it again until it heals. But what I learned last week is that I also need to avoid the area around that red area. And that gets tricky. On the other hand, I mixed up something that I think might actually be helping the hives even, and if it's better in the morning I'll mix up a good size batch and maybe that will help).
I had a lot of anxiety about when I was leaving. I'd been told anywhere from Tuesday to Friday. At that point Tuesday had been mentioned as hopeful. But I felt that it would be better to return to a support system, which meant either being scheduled for Dr. Brain the day after discharge, which wasn't ideal since it's a 2 hour drive each way, or going home Wed. to see Dr. Mind on Thursday. I was very worried about the fact that 2 days before I'd felt impulsive enough about hurting myself that I had to get rid of the one thing in my possession that might hurt me (paperclip).
This was also the first day my notes really complain about being there. I will discuss this a lot as time goes on (and may have some already), but I needed to be there. There is no doubt about that, and I got there just in time. They did what I was there for and I'm better and I was kept safe and mostly they were kind. It was certainly a better place for me than a general psych unit. However, for a unit set up for bipolar and depressed patients only, it wasn't all that appropriate for me. I was the only bipolar patient, and aside from my meds being different, nobody treated me differently. Nobody considered that my issues might differ a bit and if I tried to express that usually I was discounted. I also did not need to learn huge amounts about depression. For one thing, after as many years of therapy as I've had (ignoring my degrees and profession) I've been through this. For another depression is not the worst part of my illness and nobody ever talked about that part. This is where I am very bitter that I did not have anyone to talk to individually. I felt that a lot of it was very boring (partly it was because it was done in a way that did not help 6 severely depressed patients focus on the topic so nothing was ever connected nor was it enough sharing that we could help/learn from one another). I also felt a lot of groups were condescending, like "ok, this thing I downloaded from the internet says you all feel ______ and this is how you fix that". We might have been hospitalized but I think most of us could verbalize about how we felt about some topic all by ourselves. Generally I didn't feel anything like they said I should. Which was infuriating by the end. My final annoyance about groups was because the nurse I disliked, who was responsbile for the worst, internet based groups, felt that she could compare her frustration about having to go outside to smoke in the rain because of the law to our feelings about being trapped in various situations. You simply don't complain to a bunch of people who are locked up, missing the last week of fall weather and pretty leaves, about not enjoying your time outside. Thanks to the way the windows had heavy mesh on them, then blinds that nobody could control, we couldn't even see outside much of the time.
I had a long talk in the evening with another patient, the one I liked the most and who I was most upset about leaving on Monday. He was new to all this, so he had a lot of questions for me about my experiences, etc. He also told me how much better I looked that day, so much less haunted. That was such a good word for how I had looked. I literally was afraid to see myself for the first 4 days because the look in my eyes was bad. If Dr. Mind had seen me look that way he would have had me inpatient without hearing one word. I was so glad to find out that a lot of my frustrations weren't just me, including this nurse I really disliked (more on her eventually too).
That was a lot of writing. I think that shows how much better I felt; I could analyze the day and how I felt. Finally. I also was conversing by then, which was a big deal. I still don't feel like I can have any conversation I might want to because saying things isn't always easy. But that's just the thing where this takes more than 3 days.
Friday, November 20, 2009
But it was a very busy day and much of the energy I had in reserve is gone. I also forgot an anxiety pill. I remembered but couldn't take it and just never did and when I realized it wasn't good timing with driving. So that's not helped a ton.
Tomorrow I have an appointment with Dr. Mind and 2 patients to briefly see. I volunteered for it, I shouldn't have, but there's not enough time in the day.
I know I wanted to write about something tonight, but I have no clue what by now. Maybe I'll remember. Sleep may help.....
Thursday, November 19, 2009
But I got home a bit later because I was taking care of something at work, and then my furnace pilot light was out. I've never had to do that before and I'm very proud of myself. But it took my little "free time".
I'm working so hard on my relaxation routine that to post more than this would be violating a rule. And the rules are working.
So, let it just be said that:
-I fixed a furnace
-It really hurts to kneel on a completely black and blue knee to fix a furnace
-Dr. Mind agrees I'm getting a lot better. He says I'm not all better yet; I feel so much better than the last few months I don't care.
-For the first time in forever I didn't have to report any suicidal thoughts.
-I mentioned to a patient that I'd lost 55 lbs and would bring in some old clothes for her to try (she needs larger things). I didn't even cry when she essentially told me I'm still fat. I'm a size 12! That's pretty average I'd think.........Plus, it's 6 sizes smaller than a year ago. And she is no size 12 herself. So there.
Rule broken. Time to read.
I started feeling dizzy from time to time from some minor blood pressure changes. This was expected and hasn't turned into anything major.
I ate my whole breakfast for the first time. I didn't get the sausage I'd ordered (totally legal on the MAOI diet), but I ate the rest. This turned out to be good since they substituted my whole lunch with a grilled cheese sandwich.
I talked to the doctor about the diet. I showed him the list I'd been given and then told him about my food card saying no broccoli, cauliflower, parsley, or spinach, none of which are on the main list. Then we talked about my not even really needed the diet and he said he'd modify it. He did ask me to watch soy intake, so no veggie burger, but otherwise I should be ok. He did write the orders, but nobody followed them all weekend because the dietician wouldn't change it but instead left a note in my chart that the doctor said made no sense, saying she wouldn't be responsible, etc. I asked to speak to her so she could explain the diet and a request was put through. She never did come back and now that I really do have dietary precautions I don't know entirely what they are. Nice, huh?
The doctor also increased my Seroquel dose to 600 mg per my request. He also said I probably could go home Tuesday, a day sooner than I'd last been told. I thought about it and realized I'd rather go home Wed. so that I could see Dr. Mind the next day. I wrote that down to ask the next time I saw him.
We had a group I was very disappointed with. Br. Brain had told me all about this one person who did weekend activities and everyone always had so much fun with her, etc. Well, she decided to do yet another "read aloud, lecture, and don't really discuss" group. This was on guilt. She bothered me also by bringing in a personal example from her life. This is normally fine, but this was something very sad and kept getting teary because I wasn't handling sad. It was the most boring 30 min. ever.
Then we were supposed to have a group on med compliance/management that I wasn't looking forward to, but nobody mentioned it. So from that point on it was an unscheduled day.
I spent 4 hours that day out of my room. I wore my sound blockers and made a collage. I was so tired of tan and green by that time that I made the most colorful collage I could come up wtih. It took a lot of focus since we couldn't have scissors without direct supervision, so the whole thing was torn and pasted. I also played cards with another patient for a while. It was good to do something different. Because I couldn't tolerate the noise I spent most of the time I wasn't in groups in my room, trying to read or doing very simple crossword and logic puzzles. Which was ok, but not enough options. By the end of the day though I knew I'd overdone it and I was really tired and anxious.
I also did laundry and changed my bed. I love clean sheets and clean pajamas.
The most disappointing thing was when we were paged for the last group. There was one nurse I'll write about eventually who I did not like, partly because of her condescending, long, boring groups she subjected us to when the group was designed per the other nurses to be just a time to talk about what happened during the day, something that was actually USEFUL. That group wasn't on the weekend schedule. When it was called I was as frustrated as I'd been since I was admitted. Thankfully the nurse who would be in charge the next night asked what kind of group we wanted so Sunday I got to look forward not having condescending group.
Saturday was the first time I was well enough to feel sad that I didn't have/allow visitors (event though it as the right decision), and I started to really miss my cats. They are so calming and I really needed that.
It also was the first day I was well enough to begin to see how horribly, frighteningly ill I had been. I think if I hadn't gone when I did Dr. Mind would have had to put me inpatient at my appointment I would have had the day I was admitted. 48 hours after I walked in there I was more out of control and dangerous to myself than I'd ever been before.
I also started thinking about how it is great that this works, but that an MAOI change to any other antidepressant would need a washout period and would put me back in the same place and that I need to talk to Dr. Brain about alternatives because I cannot ever go through another washout like that.
And that was day 6. Can you tell I was feeling better when I wrote about that day?
I was weighed and had lost 6 lbs since admission. I was somewhat surprised because since I wasn't eating I had been adding calories where I could, like using 2% milk, drinking pop, that kind of thing.
Wednesday, November 18, 2009
So the last few days I've had it figured out exactly how to feel ok. I had the meds precisely timed and felt so much more able to cope. Right up until I took a header in the parking lot of the nursing home. I'm ok and very fortunate; I have a badly bruised knee and random bruises elsewhere and I'm going to really ache tomorrow, but the worst thing is that I'm now worried about taking the benzos. Which I then didn't take one dose, and I wound up so anxious I had trouble coping with bieng in a store and making simple decisions.
I'll fax Dr. Body in the morning and see if he's got ideas, but I think safety wise this is going to be a no.
I just want easy. Just once. I'm sorry for whining, but I feel like I've been through ENOUGH in the last 2 months and just tolerating the meds until I felt better (which I suspect is coming soon) is just not fair.
I'm also definitely having patch site reactions. I can clearly see the sites of the last 2 patches and one is a little itchy. I've tried many things; tonight is Balmex. But I need the dr. to give input there too. I HAVE to have this work......
I forgot about this last night, but yesterday was the first day my food restrictions kicked my butt. A vendor brought us lunch and an inservice. Lunch was Olive Garden. I love Olive Garden. I can have things like lasagna if I cook them and substitute a little, but I can't have their cheeses. Nor can I have salad dressing from there. So I had a plate of salad and thankfully I'd brought in a bottle of salad dressing for cooking group weeks ago and had that. Nonetheless, it was depressing and now that I think of it I want to make stuffed shells. Huh. That's the most substantial food I've wanted. We'll have to see if that lasts through the day.
I can't remember what I wrote last night (still groggy from valium), so I won't repeat myself.
Have a good day. I have to do a home eval today that frightens me. The patient is going to make it tough. It may be a long afternoon........
Tuesday, November 17, 2009
So I decided to space out what works differently.
I took Klonopin when needed it, about 9 AM. Then I took a vistaril when I got a little edgy, about noon. Then I took my 2nd Klonopin of the day about 3:30, and then valium (1/4 tablet unless I'm not sleepy in 20 minutes) when I took my night meds, which is right before the essential oil bath etc. starts.
I'm exhausted, but I'm not wanting to climb walls tonight. And I got a few things done after work. Which is also good. I'm really excited actually about one thing. I am literally doing anything to relax right now. I remembered last night that I had an old one of those massaging seat covers that I got on clearance after Christmas maybe 10 years ago. I dug it out and found the plug, but not the car adaptor. So I was disappointed, but used a coupon to buy a cheap (much less nice) model today, figuring that if they weren't compatible that I could just use one in the house and the new one in the car. They were compatible, so I can now work on relaxing while driving as well as all the rest of the time.
I'm going to have to shut up now and sleep. I have so much to say, but I'm so tired I didn't even do most of my nightly painting. Which is pretty tired since that's a firm part of the relaxation program. I wish I could draw; I'm really getting into watercolors. I see abstract art in my future. Not for anything but just to do it, but it is so relaxing.
Anyway, more tomorrow.
It is, however, soooooooooooo nice to be calm. I just wish there were a slightly more moderate way to get here. (My plan for now is to take it once/day with the amount depending on how late it is. I may move my bedtime Klonopin to a mid-day Klonopin to see what that does, because Klonopin is the best drug I'm on (even though valium sure is effective......)
In some ways I haven't felt this good since mid-July. Too bad it's gonna fade.
Please forgive typos. I've fixed a lot, but being this sleepy isn't so easy......
Monday, November 16, 2009
I made it through the day. I saw Dr. Mind at lunch and he could tell I was already very tired, and it got a lot worse, but I made it without tears or a panic attack.
I got a script for low dose valium for the next few weeks. I think everyone is worried that this anxiety is going to be dangerous because I'm still on rather tight suicide watch, I get a reminder every single session with Dr. Mind of what to do if I feel out of control, and nothing has really helped.
I took 1/4 of the valium and I thought it didn't help but now I'm thinking maybe it did something. I need to take the rest of my meds and sleep now.
More later. Neat new thing with Dr. Mind today, another really good reason for Christian therapists. It's a guided imagery with prayer thing and I actually relaxed enough to almost fall asleep. I will be recording this technique.........
Sunday, November 15, 2009
But when I started ironing today and putting away clothes and sorting things to make space for my size 12s I just couldn't stop. And boy do I have a funny looking closet.........And a cleaned and newly organized for patch care bathroom sink........
OK, time for a patch break. I think. Getting sleepy, will give it 10 minutes.......Hate wasting any part of a $20/day habit that I so far haven't been reimbursed by insurnace for...........
The thing is, when you're bipolar (or at least when you're me because I cycle so fast), getting a lot done all of a sudden can mean bad things too. And one of the riskiest times for mania is when an antidepressant starts to work. THey said in the hospital that my risk was lessened when I wasn't instantly manic, but......
I don't think this is mania. I think this is nervous about work. But I have no way to know for sure.....
My new theory of anxiety is that if I'm anxious I take something, spacing out 2 hours as much as possible (but if something is not working and I feel worse in an hour I'm taking it then). I'm tracking all of this and will fax to the dr tomorrow, but if the only way I can be comfortable is to take a ton of meds, then so be it. I also need my thyroid checked. They lowered my dose a bunch in the hospital, and when I saw Dr. Body he said that it may not work because they looked at TSH, the normal indicator, and for me my TSH can be relatively ok but my T3 or T4 isn't. And I'm suddenly full of hypothyroid symptoms.
I bought a number of different things to try to better protect my skin from the patches. Of course I got home and my skin looks much better, but I'm prepared now. I'm going to operate under the assumption that the patch really dries out out my skin, so when it comes off an area that area gets lots of moisture. By the time I hit that site again it should be free of all moisturizer, assuming I bathe occasionally.
I got a new winter coat today. I had one I thought would make it at least until after Christmas, but when I put it on it was clearly 2 sizes too large. So I have a new one. Again. I just got one last January for my birthday, but that one is about 4 sizes too big, at least.
It's going to be weird to not be posting quite so much now after I go back to work. It's possible that the next few days are going to be totally exhausting, so don't be surprised if I don't say much. Previous return-to-work weeks have involved a lot of sleeping very early.
Anyway, tonight's plans include ironing and I'd better get on that. Ick, but I know it will help me get through this week.
Unfortunately that didn't last long. I've written before about the dietician who thought that if I was too depressed to eat the best thing to do was eat things that sounded worse than anything ever had sounded. Well, she was about to make my life a living hell.
That morning I had eaten a reasonable amount (an omelet) for the first time in weeks. I had picked something for lunch I thought I might try. My stated goal for the day was to eat one serving of something at every meal.
So when I got my lunch tray and not one thing I'd ordered was on it, I was pretty upset. With no warning or explanation I was sent a chicken breast on a bun, something I'd specifically told her I wasn't able to eat. I think I got some vegetables, although now what I asked for, plain mashed potatoes, and a bunch of kinds of juice. Because juice is filling. I was so upset, and asked the nurse. At first she didn't know why, then remembered they'd decided to put me on the MAOI diet. I said I understood that, but that the dose I was on didn't even require a diet, and the diet for Emsam isn't as strict as oral MAOIs, and that this is insane. I wasn't even allowed soup because the broth might be made from aged meat or something. I was horribly upset and all they would say is the doctor ok'd it and they'd look into it.
I was able to pick at my dinner enough to feel like I'd at least tried, but it too was not what I ordered at all.
Aside from being very upset about the food, that day was actually slightly better. I was given a tentative discharge date of Wednesday, maybe Thursday, and I spent some time talking to the other patients. I even wrote that I laughed twice. I started participating in groups a little more (ie I was saying things before I was forced to).
I also noted that day that I was becoming extremely frustrated that nobody was bothering to read my chart to know why I was there. Everyone knew I was bipolar; I was the only bipolar patient. But with 6 patients, 2 nurses, and a tech, along with support staff, I felt that by day 5 there shouldn't be ongoing questions about what signs I had missed that caused me to need to be hospitalized, what medication errors I had made, and what changes to my support system might help me. The first couple days I understood these questions, but by day five I was getting petulant. "what did you miss that led to your admission?" "My doctor told me to quit taking my pills and I did, and I was admitted when I realized I was about to miss the only way to keep myself alive". "Why did you stop your pills?" "Because the DOCTOR TOLD ME TO".
I know it's hard to know all about each patient. I also know that at any given time I'm responsible for 30 to 50 patients and I know at least the significant reason they are seeing me, usually much more than that. It's not like there were constantly different nurses; they kept staffing pretty consistent. So I felt there was no excuse. This also was enchanced by my anger at being called by my first name, which is not the one I use, no matter how often I correct people. Again, 6 patients, learn my name. They were doing this with half of us.
NAMI (National Association of the Mentally Ill) came that day. I was disappointed because it was scheduled during a relaxation training group I actually would have benefitted from. NAMI is a good organization, but it is very not local for me, and listening didn't help much. I also was very freaked out because we were given paperclips while they were there and I couldn't stop thinking about how I could hurt myself with said paperclip. I finally threw it into the heating register thing to get it away from me. I was too embarrassed to ask the nurse to take it, even though it would have been smarter. I did later admit to several people that I'd had trouble with this.
My biggest accomplishment that day was changing my previously scheduled appointment with my family doctor to a much sooner day (thank God I did that given that without him I'm pretty sure I'd be back in the the hospital right now). ---This is a total tangent, but I just realized finally why nobody wants to give me enough Klonopin to just take care of it. Duh. I totally forgot that not only am I on suicide precautions verbally for what feels like forever, the doctors aren't going to risk me having enough meds to hurt myself. Oh.---Anyway, I also left Dr. Mind a message cancelling an appointment I'd miss while in the hospital, asking for extra appointments to be set up for a while, and letting him know I was surviving. I really wish he had a private voicemail box, because I wanted to tell him how much it meant that the staff at the counseling center were praying, but I wasn't ready to announce that to the world. I still need to tell him that.
That was also the day I found out I was switching doctors. I'd not seen my "real" doctor until my 3rd day because he had flu. Then I saw him 3 days and he was out of town. So I saw this other doctor really more. It didn't matter, I liked both. The second must have wound up my dr of record since my online chart lets me set up an appointment with him. I thought I was going to have to, but now I think I can make it a few more weeks.
And that was the week. There's still more days to come, but oh they were boring days. We had 1 30 minute group each morning that was supposed to be leisure but was awful, another group didn't happen either day, and the dreaded final group of the day that wasn't supposed to happen did. Otherwise it was very boring. More on that later.
Saturday, November 14, 2009
I made myself join an online community where I can find others with Emsam.
I played with watercolors. (New hobby).
And I ate a few things that were different. Slightly, more variations on a few things I will eat, but with more textures. I haven't wanted textures; it's like chewing is too hard.
So, we'll see what happens next. But at least today was ok.
Friday, November 13, 2009
I'm logging my use of anxiety meds and plan to fax that to my dr. about Wednesday. Since I'm taking all this and still am hideously anxious, he needs to know. I figured I'd get a couple days of working in there as well.
I just need reassurance that this is normal, and that it can be managed. That is the hardest thign I think, if I only could see her I suspect she could get the anxiety controlled. That is whereI need her knowledge so much. So, 17 days until I can call and I think probably I'll see her that week. Please God. I hope I can find words to tell her how amazing she is.
This morning I woke up and thought "hmmm, about time for pills, and a minute later the alarm went off". I never wake easily for those 4 AM pills.
Then I went back to sleep and woke up to a nightmare so frightening I had to take anxiety meds to settle back down.
And eventually I woke up feeling down. I guess I missed today's good part.
I am doing something I think is fairly important for me psychologically. I'm making a list of the things I expected that did not happen in the hospital. With that comes the reminder that I have a lot of complaints, but overall it was a good thing. I just feel like some very important things were left out and often they were things that seemed so basic I didn't expect that it was even possible they wouldn't occur. Hopefully if Dr. Brain sees it she'll be able to help me be more prepared next time.
I'm so tired. I think I'm going to try to nap a while. I do not feel good today and I'm not in the mood to deal with anything.
Thursday, November 12, 2009
I have posted many times about how important it is for me to be treated by those caring for me as if I am a professional. I realize I am a psych patient and when I act like a psych patient then I need to be treated as such. On the other hand, I am pretty aware of what is going on, and I need to know precisely why a change is being made with my meds (the doctors were good with this), I need to know what tests are being done and why (they were awful with this; the one and only time I knew why they were taking blood was when they woke me up at midnight to tell me I couldn't have food or drink, then I got concerned when I had water with my AM meds. Then I was told what the test was for. I also was then aware I could have had water, which is a very big deal for me.) Even when results came back nobody bothered to tell me, even if they adjusted my medication as a result. I think my thyroid is screwed up because my dose was changed after he looked at one number. Dr. Body looked more closely because this has happened before, the lithium damage to my thyroid means that it's less my TSH affected (as is normal) than my actual levels of thyroid hormones. And while I'm scheduled for a check soon, I am probably going to have to move it up some because I'm starting to be symptomatic. Had I been asked I might have been able to say "please look at the whole picture".
I'm so used to managing my own meds. If I take an anxiety pill and it doesn't help, I take more. I have limits I've been given, but I know what helps me. In the hospital and until I saw Dr. Body that was just not true. And I didn't even know in the hospital to be more pushy. On the dreadful day 3 I would have given anything for a shot of ativan or something to make the horror go away and let me settle. But that wasn't an option, it wasn't in my chart, and I didn't know to ask. If there is a next time I will be asking for that to be a standing order. I'm also used to beling listened to about how things are working. Yes, Emsam is slow. But all antidepressants are slow and I know perfectly well that I've never been forced to hang out at a low dose until the whole initial time was up if I was responding slightly. I suspect the hospital doctor wouldn't want me on the 12 mg patch I've been on for 2 days now because it is "too soon". But the choices are push the dose a bit or make me suffer.
Seeing Dr. Body really brought all the out. He listened, he gave me all sorts of freedom, and he told me he trusted me because of my history of doing what I should, and because he knows I'll call with problems. He did not have to do any of the adjustments that he did. There was nothing stopping him from saying that needed done by Dr. Brain. But he knows that she lets me make decisions and they're comfortable together, so it was ok.
I've written before, I was treated over and over as if I'd gone off my meds for no reason. Nobody bothered to read the part of my chart where this was done intentionally and under my doctor's supervision.
I also keep thinking about how so much was designed for these groups that affected us in such variable ways. And that would have been fine if only we'd been encouraged to share what our experiences were in different levels. Instead it was all about clumping us together and treating us as a whole rather than 6 people with 6 very different problems.
And there is the trauma. I went to that hospital feeling awful, but feeling like ME, and I left and still am trying to reclaim me.
I had an ok start to the day. I didn't feel like interacting with people and I felt like the anxiety was going to make my head explode, but I was getting used to that. The morning group, art therapy, which was the only one I liked, was cancelled. During that free time I emailed my boss to let her know that I didn't think I would be ready to return to work on the appointed date since I was going to be in the hospital longer than hoped for and I was really not doing well. I just wanted to know what the plan was, etc. About an hour later I checked my email and had something rather non-specific from her, and a 2nd email from HR about being sorry about my resignation, here were the details of my last paycheck, etc. Needless to say I panicked. Another patient got the nurse and after we talked a while and I had an ativan they brought me me cell phone to allow a private call. The doctor came in before that call was made and we talked about it too. We also increased my Seroquel yet again, to 500 mg. Finally I was able to call and it was a clerical error.
The "minor" error had me drugged enough to be pretty incapicitated most of the day and I had a very hard time coping. I had no interest in talking to the other patients. I know we had some sort of a therapy group that day but I don't think I participated much. There was also one of the very boring, let's read a worksheet groups about defense mechanisms or something.
After lunch the dietician came in and we had a horribly circular conversation about my not eating. I'd talk about how repulsive food was, she'd insist I try something that sounded awful. She refused to accept I wasn't eating because of the depression, that I had this problem long before I got to the hospital, and that I actually was trying my best to eat. She didn't get what I was saying.
By that evening I did at least participate in group without being forced. I think I volunteered a sentence even. I actually felt the smallest bit better, probably because I'd had more anxiety medication. I also had eaten some pudding, pretzels and a serving of cereal by the time I went to bed, which had to help.
I think that day 4 was when we were given the journals. I didn't actually write about things day to day for a few days after we got them. Mine starts with a list of close to 200 points I wanted to remember or think about. Eventually we'll get to those, at least the ones not covered already. I had a very hard time with the journals because they tell you up front that your room is searched daily and until I saw what a search involved I didn't want them to flip through and read about my thoughts on C., the nurse from hell. I may someday write a whole post on her, because she taught me a great deal about what I do not want to be as a healthcare provider.
That night I had a message that Dr. Brain had called when I was in group and said she'd try to email me. That email never came and I assume that is when whatever happened to her occurred. I still don't totally get why I couldn't be pulled from group for my doctor, but whatever. I just would have appreciated the reasurrance of her voice. But that just wasn't part of it I guesss.
And that's all I remember of that day.
Decisions like that are so ridiculously hard because I feel terrible and scared in the evening and wake up better. It's getting close to time for a med for anxiety, but I've been up 4 1/2 hours. It's almost like the patch works best for those few hours, but it's not, because I wake up feeling ok and don't change patches until later. So maybe it's the tail-end of the patch that helps. Who knows?
Today's patch is going to be hard to keep on. I thought I'd be all smart and add another site across my upper chest. Unfortunately every time I move my arms it pulls on the patch and risks pulling it up. So it's taped down and if you look closely you can see the tape at the top of my shirt.
It's cold today. I need to wash my coat. Better get on that, in fact. At least during this part of the day anxiety gets things done. I have so far: showered, filled out my part of the insurance form; wrote a new version of my complaint to Walgreens and sent it to 3 places; gone to the bank to cash a check and start a Christmas Club account, worked on some clafications regarding work, and typed this blog.
Now, needless to say probably, it's time for some medication........
My mom is going to come along and we're going a couple places looking for Christmas presents for my sister and brother-in-law. Hopefully this will be a gentle enough activity.
Wednesday, November 11, 2009
But right now I just don't know if I can do this. I'm so tired and so extremely anxious and I've had a ton of anxiety meds and lo and behold the dose increase didn't do anything in one day. Which it shouldn't, but it's just so hard to be patient.
I'm keeping a countdown of how long it will be before I see Dr. Brain. I can call in 18 days now. So about 3 weeks. I have it in my head she can make it all better. I doubt this, but somehow it is what my brain has latched onto.
I don't know what to write. I don't know what would hlep. I just need to get through this time and that's so hard. I know I did the right thing, the only thing that made sense. But I keep questioning if I could have tolerated the other med if I'd tried harder.
I hate everything right now. It does me no good, but I just can't find pleasure in much. I know sometimes depression feels worst when it's starting to imporve. I'm really hoping that is thte case today.
Sorry for such an obnoxious post.
Now I have learned to do so, and to ask for help. I've learned that I can increase my appointments with Dr. Mind if I need and that I'll do better sometimes that way. I've learned to contact Dr. Brain as needed. I've even managed to call the hospital twice since I left. I still hate it, but I do it.
Since I left the hospital last Tuesday I've seen Dr. Mind 4 times. Thursday, Saturday, Monday and Tuesday. He then had to go out of town for a while. He arranged for me to be able to see someone else if I needed. I decided I didn't want to just make an appointment. That was a bad move. As today has gone on and I've reached my bad time of day (evenings) I have decided I need to talk to someone between now and Monday because of the anxiety. So I just called and requested to see someone tomorrow. It seems like the only things that help this anxiety are meds (hit or miss), talking, and sometimes writing. And since Monday I go back to work I'm not really thinking I want to have spent days feeling like this.
I don't even know what to say on here. Dr. Mind thinks (I think) that a lot of what I'm calling anxiety is the depression. I don't know. I just know it feels awful.
But all it took was hearing him say he felt a little better and I lost it, totally.
I started crying, which at first I didn't pay attention to because I'd been crying a lot. Not only was I dealing with severe depression I was going through a lot of biochemical changes from coming off the one med, and probably starting more from the new med.
But then I couldn't stop crying. The tech came past doing rounds, saw me crying and asked if I wanted to hear a joke. Lesson one if you want to work with psych patients: a joke is not going to distract someone who is crying so hard she can't breathe. I cried and cried, thinking he would get a nurse. After a while I realized he wasn't, so I wandered the halls sobbing looking for someone, even him, who could let them know I was in trouble. I couldn't find anyone. I think they were involved in another person's discharge and maybe on break. So I cried for another 30-45 minutes before I heard a nurse's voice. I knocked on the nursing station door and told her I couldn't stop crying.
At that point I'd had it, and I curled up in bed to sob. The nurse came in and told me I couldn't have more ativan so she'd paged the doctor for something else or an emergency dose. It took another 30 minutes before they had that med. I took it and then they let me sleep for a long time.
During those hours is when things were so scary that I'm dealing with trauma from them. I've felt suicidal before. It goes with the territory. I also have a lot of coping techniques developed over the years that have convinced me I was pretty safe. I was wrong. I never considered the impulsivity factor. If I had been able to hurt myself that day I would have. There is no question because I remember sobbing for quite a while over knowing I had nothing harmful anywhere near me. Learning that when I'm being treated as a suicide risk it is for an actual reason and not just to look good on paper was a terrible shock. Enough of a shock I apologized yesterday to Dr. Mind for fighting him so hard for so many years because what I thought I knew about this wasn't the whole story.
I went back to being on 15 minute checks. Not that they tell you, but it's fairly obvious when someone carries a notebook past you over and over making a notation.
After I woke up I had a headache from crying, so I took some tylenol. I then spent the rest of the evening dazed. I only talked if forced to. I was forced to particpate in the last group. I have no idea what it was or what I had to participate in, because I don't remember it and that's what my notes say, but I'm fairly sure that it was the nurse I hated, who printed off stuff from the internet and then read it to us (badly).
That night I started the increased Seroquel dose, and combined with everything else I think I slept a bit better. Which was the only good thing of that day.
I also learned that next time I'm in the hospital I want them to have an order for an injection of something, because I don't ever want to feel that worked up and then have to wait for more meds to come. I'd kind of assumed that was a typical thing, but it wasn't and not having that option led to quite a big more trauma.
I read this and there is just no way it is explaining the terror and panic of that day.