Yellow pee

Quinn's transplant is over, she is resting, and it sounds like she did great. I've seen a picture of her kidney and well, you can see why it wasn't working so well. And I've also seen a picture of yellow pee! Which is a good sign things are going the way they should.

I couldn't believe how fast it went. I'm sure for her family it felt like forever, but it really seemed like it wasn't all that long between going into the OR and then after good reports on her progress she was out. I figured this was a many, many hour ordeal. It was if you considered the time to remove the donated kidney as part of the whole thing, but she was actually being operated on for much less time than it seemed like it should take to remove and replace a whole organ.

Please keep praying for them all, and take a moment to consider the incredible miracle that this is even possible at all.

Pray for Quinn, Cheryl, Gage, Julia, and Julian

About 2 years ago I was diagnosed with diabetes insipidus, and then had to undergo testing to find out why there is always blood in my urine, just to be sure I didn't have something else wrong. Ultimately testing showed I did not have the kidney stones my doctor expected; instead I have a large cyst on one kidney that has a blood supply that dumps blood into the kidney. When I started reading about kidney cysts online, trying to figure out if I needed to worry, I found a website, Kidneys and Eyes, which is about a family with 2 children with a rare kidney disease called ARPKD (autosomal recessive polycystic kidney disease). This is far from what I have, but at the time I started reading the older child, a boy named Gage, had just had a kidney transplant and was returning to school. I kept reading, mainly because of my general curiosity about medical things and because I knew little about transplants, despite having had several patients who had been through one. Over time I've come to consider the author, Julia, a friend. Gage has had a number of emotional difficulties from the trauma of being on dialysis then through a transplant at a very young age. He and I have some similar coping styles and have benefitted from similar things.

Now his sister Quinn is having a kidney transplant Tuesday, which is coincidentally her 8th birthday. She is receiving a kidney from an unrelated donor known to the family through church, Cheryl. It adds new meaning to church family, especially considering that Gage also received his kidney from a church friend.

To add to what they are dealing with, which is far more than any family should have to deal with, Gage has to deal with a lot of emotional pain that this is bringing back up from his own transplant.

So, please, during the next 2 days, take a moment and pray for this family, including Cheryl. I'm not comfortable posting pictures of other people's children without permission, so you'll have to check out their site to see for yourself, but these are 2 very, very cute kids who have been through more than any child ever should have to endure.

Until Quinn's transplant is over this blog will continue with this entry posted because what she is going through is much more important than me freaking out about the hospital. I need to try to have half the courage this little girl has; she'll be a good example to me during my own countdown. I'll post Tuesday night when I know she is all through and recovering.

I forgot the good things

I've been so overwhelmed by the great November scheme and trying to picture a psych ward that I cannot find pictures of (I found pictures of the main ward, but I won't be there. This place I'm going is newer and all I can find is a blurb. Oh, and a picture of a nurse and "patient" who probably has never been near a psych ward) that I forgot to share my exciting news.

I am now down officially 4 sizes, and I need to try one size smaller on the jeans I bought because they are actually a bit big and I may need 12s. Granted, these seem to be sized a little large, but still....the last time I wore size 12 was 2002. I was on lithium and a bit of depakote and had just started lamictal. I had a long, long way to go in the search for wellness. I'm now at 39 lbs down since January. I am living proof that diabetes can be influenced with weight loss. If I hadn't lost the weight there's a pretty good chance I'd be diagnosed with that by now.

Also, I need to say that I love this blog. I don't know most of you at all, and the ones I do know I know only via email, but it helps so much to have a place that I can say "hey, I'm going to be in the psych ward for a week" and get only kind comments and understanding. I have Dr. Mind, and he'll be all kinds of supportive, but he also gets to help me get comfortable with the idea and that's not going to be a small job. I'm ok about this but I need to be calmer about it or the next 6 weeks will be pure torture. I have friends, and they're great, but there aren't a ton of them I'll tell about this.

At some point tonight I'll be posting the last post about me for a couple days. If the system works an auto-post goes up at midnight tonight, and I hope everyone makes an effort to read it. Someone special (several someone specials) need you to care.

Hard

My mom didn't exactly get it. This is not surprising given that we don't go into the more difficult parts of this thing of mine. I don't think it had ever occurred to her that I might be placed in a psych ward. She doesn't seem to get the small relationship between person with a history of very severe depression+person who usually has mixed episodes whenever she gets sick+taking away her antidepressant=not such a safe place to be. Apparently suicide isn't something she's ever worried about.

Even with the explanations that this is a transition that is tricky and that I'm going to be in a very nice, small place for it, she still can't understand why I need to be on a locked ward. I'm not going to spell it out. I can't. This is a time I can only be strong for me.

She also doesn't quite seem to understand why this is necessary at all. I think she is afraid that this is going to screw up all my meds. I don't think she understands that it is somewhat dangerous to be relying on a med that the dose can't be changed if I need it to be. Ultimately, even if I didn't have SAD, I would be in a difficult place with no room to vary my antidepressant dose. It's true that my current combination of meds has been amazing. But it is certain to fail eventually and as I keep saying, possibly to convince myself, it is much preferable to control that happening than to wait until I inevitably get sick. I tend to get depressed at Christmas. I would much, much prefer to be in the hospital in November than to be hospitalized and in a very bad place for a time of year that is nearly always difficult for me to begin with. I cannot live a life where I am battling constipation so severe that it causes 5 lbs of weight gain and my belly is so tight half the time that my too big pants are tight. I cannot keep surviving on high doses of various laxative agents. That is just not good for my body.

She also doesn't understand the thing where the patient still has control. I will simply refuse to take any med I don't want to take. I will call Dr. Brain and complain loudly if someone messes with things like my Seroquel without her express permission. She won't be my doctor during that time, but she will help me. And a huge part of doing this where she is nearby is that she knows the doctor who will be treating me.

Another highly unhelpful comment? "You'll be so bored". Um thanks? It is not going to be much fun. However, I am not going to be sitting in a bed all day, probably even if I want to. That's part of the point. I can't say I look forward to group therapy, but I also am interested to meet other people in my shoes. I also am likely to be too sick to be bored. More than likely I'll feel very depressed, very tired, and very uninterested in doing much. Which is not great for being home. In the hospital I have to eat, I have to shower, I have to talk about it if I feel like dying. Dr. Mind is great but he doesn't live here (thank God). He can't do that for me.

It makes me mad that I'm ok with this, but I have to hear her negative comments. It's me who has to go through this. It's me who had to admit that this is needed. It's my body that is going to feel horrible. It's me who has to deal with feeling lousy, potentially for a number of weeks. It seems like it isn't asking too much to just hear "I'm sorry but I'm glad you're making the right decision for you.". I'm the one who has been terrified of having exactly this (hospitalization) happen for years, and I am the one who has fought and screamed and done all kinds of things to avoid it.

It's true I've known this was likely (although not a week's worth of it) for a few weeks. But ultimately, if you have a child with serious mental illness it's fairly reasonable to assume this kind of thing may happen. Any other chronic illness wouldn't horrify her if I needed to be hospitalized. So why is this different?

The first worst part

In a few minutes I'll be off to explain what is going to happen to my mother. I dread this more than anything else. It's hard for her to handle this kind of thing, and reminders that I still have a serious illness even though I've been doing well are tough. I also am going to ask something that she is not going to understand: I do not want visitors. I don't want others to see me in that environment. I don't want that to be part of anyone's memory of me. I also don't want her to see what I believe would be shocking to her: if she saw me there she'd see me with other people equivalent to me in terms of disability at that moment, and I think that would be hard for her. The other reason, and this is maybe the biggest, is that I do not have a support network of real-life people with this illness. Where I live is so rural that the nearest NAMI meeting is 90 minutes away and I don't really feel comfortable going to one anyway because I don't want my diagnosis to be known in my professional life. I've never been able to sit in a room of other people with mental illness and talk about it. I'm anxious to be able to do this. This hospitalization offers me the first opportunity I've ever had to be real about this and how I feel outside of the offices of my doctors and the internet. The rest of the time I walk around with a fake smile and fake "see, it's not so bad" attitude. Which I do not want to have to pull out during that week. If I have to go through this I want to go through it without pretending. I also just will not be feeling social and will be spending a lot of time being made to be social in the various groups and activities and therapy and testing and frequent nursing assessments. I will be through enough by the time I taper down to a low level in the next few weeks. I don't know the taper rate yet, but I'll have to be pretty low the last week I work. So I already will have been forcing myself to be ok for a while. Plus, if my doctor tells me I'm going to feel pretty bad, I'm going to feel pretty rotten. If she says I need to be in the hospital then I'm going to be bad for a while. This is the doctor who has done everything in her power to keep me out of the hospital for many years, even when Dr. Mind has been strongly advocating for it.

So, hopefully I can do this without hurting her. That's not the plan, but I also know that this is a time that being a bit selfish in my wants is ok. She who has to choose to make herself sicker to get better and who is choosing to be locked up and kept away from shoestrings gets to be a bit selfish. It's my new rule of mental illness.

Here goes nothing.

It's gonna happen

I'm officially going to be admitted to the locked psych ward in November. It will probably be for a week. I should be able to be on the small section reserved for people with mood disorders, and that will mean a quieter, more peaceful environment, only 10 patients at a time, and a nicer environment. I'll even have email access, so I'll be able to post blogs through my email. That has to be something a bit unusual; I've read a lot of blogs and have never seen anyone post from a locked ward.

As soon as I explained the situation (see below post) to Dr. Brain she agreed that we needed to plan this if I wanted to avoid having it happen out of control. Planning it also allows things like an enhanced chance of admission to that particular area, and hopefully in the controlled environment I can actually start the Emsam while still taking a tiny bit of the current antidepressant, so that I don't have to totally bottom out.

At first she asked if I wanted to be hospitalized and I said I thought it likely but didn't want to commit to it. But as we talked it was clear she wants me there.

It's also a longer process than I'd hoped. I don't get to come off the antidepressant cold-turkey, which I'd hoped but not expected. In fact, I'm going to make the first taper later this week. And it will take a bit to work, so I need to be off work for 2 weeks. That is bad because this job doesn't include paid vacation, so that is 2 weeks without income. I won't exactly be spending much, at least much that won't come as a hospital bill, but I'll need to be saving every possible penny from now until then.

Knowing I'll be in the hospital is both good and bad. It's good because I can plan ahead for things like care for my cats, the need to have clothes I'm comfortable with that meet safety restrictions (including some kind of shoe or slipper without ties; I'm going to get slippers since mine are totally worn out, but it's something that preparation is a good thing.) It's bad because that is a long time to think about it. If only I could just see pictures it would help, but there aren't any. She described it, so I have an idea what it will be like, but I didn't think of some questions that are important to me, things like since it is a tiny unit are there still semi-private rooms or will I get to be alone; can I bring my weighted blanket so I have a ghost of a chance at sleep; can I bring my own toiletries; and who knows what else. I didn't even think to ask if I can be admitted on Saturday to get it over with ASAP. She's probably going to be sorry I have her email address.........

At least this can pretty well ensure I don't run out of things I'm afraid of to discuss with Dr. Mind anytime in the near future.

So this is what it's like to have money

For the last 7 years I have wound up with 10-25% of my income going to healthcare. I have been on many very expensive meds, had many expensive appointments, and a lot of testing. And the last 2 years I have no worked full-time, reducing my income further.

I am now working full-time, making quite a bit of money, and my medical expenses are far less. I'm only getting labs 2-3 times per year, my labs are minus depakote levels, which are expensive, and I only have to see Dr. Body when I'm sick or for 2 check-ups each year for thyroid and diabetes insipidus follow-up. The last few years I've seen Dr. Kidney as well; I refuse to see him again so hopefully that will be one less visit per year, although Dr. Body may want me to see someone else. In that case I'll probably see a Dr. Kidney that Dr. Brain works with who is used to psych patients' needs, rather than the former Dr. Kidney who came across as totally clueless this year and then tried to put me on a low potassium diet even though my potassium was fine because he thought it was high (it was at the high end of normal, which is completely in line with the fact that most of the foods I eat are high potassium). I'll still have big expenses, and if I have to change antidepressants I'll be paying more for that. But realistically my meds are so cheap now that another small increase is still better than it used to be. At one point I was paying $250 or more for meds each month. Now it is about $90, plus about $15 of over-the-counter meds for bowel issues.

All this is to say that I'm suddenly a lot better of financially than I have been since I first got sick. I've been able to save money. And so this morning I was able to wake up, realize how much my bed hurts, and I bought a new one. I've been preparing to do this for the last few weeks. I knew what I wanted and that I was going to do it this weekend. I just didn't really know if I could make myself do it. I did, and in a week or so I will have a new bed that isn't totally worn out.

In a few minutes I'll be leaving for my montly appointment with Dr. Brain. It's a big one; see below. But on the way I get to stop and do something I normally hate with a passion: buy jeans. This year though I'm excited because the reason I'm doing that today is that I do not have a single pair of jeans that is not 3-4 sizes too big. I have to exchange some shirts I bought because they are way too big as well. I have just now gone down a shirt size and it caught me off guard. I also need to start changing out my pants to the next size down. The ones I have now still kind of fit, but I keep a lot of stuff in my pockets at work and they slide off my hips.

The appointment with Dr. Brain is a big deal because it's time to make a big decision. I want her to make it. The antidepressant I'm on now has worked for me for a long time. However it has a big limitation in that I have a very narrow range of dosage that is effective but doesn't cause mania. That range is 70-80 mg. I was on 90 for a few months this summer when I was pretty depressed and I had to come down because I got manic eventually. At this point I'm ok on 80. I'm not depressed although I am dealing with a lot of anxiety. But 80 is causing the great constipation battle of 2009 and it is not going to be a battle I can continue indefinitely (why do I always misspell that word?). So, I need to go back to 70. Seventy has worked fine for many years. The trick is that right now is the beginning of the 4 months per year that I am highly vulnerable to depression thanks to SAD. Ideally we wouldn't be lowering my antidepressant now. But because of my limitations with dose, I need to be back to 70 even if I could tolerate 80 to give me leeway for increases with SAD, which happen most years. However, I am not really willing to go back up to 80 because it just isn't worth the discomfort and reliance on bowel meds that are unpredictably useful. (ie sometimes I need all the regular meds for this plus one dose of Miralax, sometimes 2 doses of Miralax, and sometimes Miralax is too much. There's no predicting, and to make it worse Miralax really needs consistent use to work right.)

So, that leaves me in a predicament. If she thinks I can make it through the winter on 70, I'll start weaning to it now. That at least lets us know if that works in the next few weeks. If she thinks there's a good chance 70 won't get me through the winter then I want to discuss changing to Emsam, which is a MAOI patch. The reason I'm not just doing that is that the switch includes a week of no antidepressant at all, which scares me silly. But there are distinct benefits to the switch, particularly the part where it shouldn't cause constipation. And the removal of 8 pills per day from my life. So if it is likely that this switch may happen I want to stay on 80 for the next 5 weeks, which gets me to the end of this contract. At that time I can easily take a week off work to make the change, allowing me to feel bad in peace and to be hospitalized without drama if that is needed. If I make this change I want to know that hospitalization is a ready option if I start feeling very bad. If it's going to cause me to feel seriously crummy I want to know from the start there's a safe place.

And that leaves me with a decision that is going to be made on the basis of Dr. Brain's guessing. I trust her, she has known me for nearly this entire journey and has known of me (she supervised my therapist) since I was first diagnosed. Since that therapist didn't have much experience with this Dr. Brain has actually been pretty involved since the very beginning. She has tended to be pretty accurate with her guesses, so I'm comfortable making this decision based on a guess. It also helps a lot that I know that this has a good chance of happening, and if it does I'd very much rather do it without disrupting my work and having to explain anything to my company or someone I'm contracted with. The problem with telling someone "I can't work because I'm going to be in the hospital" is that they are sure to ask if you're ok, what's wrong, etc. And if I lie through that they may want to visit or send flowers or whatever, and I obviously won't want them knowing where I am. Avoiding that would be a good thing.

It just doesn't make me feel very calm about this visit.....

And then....

I had a very stressful morning dealing with a patient situation and a very concerned (rightfully) assistant. Then I was under huge amounts of stress to get through the rest of my day in time to see Dr. Mind. I ate lunch in the car; thank God I had an apple in there. It wasn't a very good apple, but it was lunch. And I made it to Dr. Mind a bit early. Unfortunately he was running a few minutes late, so I had a lot of time to watch a squirrel outside the window of the waiting room. I always sit in the same chair, so I have spent a lot of the last 3.5 years watching the seasons change through that window while waiting. Usually I don't really mind the wait because it gives me a few minutes to change gears, which used to be a big issue with my visits after work, which was part of the decision to work part-time for the last few years. Now I don't seem to have that issue; since I started this job we've been working on some of the hardest stuff ever.

So I brought up the gun thing again at the beginning of treatment. I explained that the hint of a memory is really annoying me. After much discussion I have been convinced to try not remembering. If I do remember I remember, and if not, well I think the point is that it is obvious something very traumatic happened involving a gun and that since there aren't a ton of choices in what happened it's safe to assume that I saw someone threatened by a gun. I think that's what he meant anyway, and we proceeded with a discussion that had a lot to do with what I probably saw. Which is weird, I much prefer to deal with facts, but I've known all along with this that my brain says not knowing is better for me.

I also realized for the first time that some of the fear is that I do not trust myself. Most of my time now I'm far from suicidal. But I also have been there enough to know that when I feel that way and also feel impulsive I can be pretty dangerous to myself. Which means that I have learned to take action to keep myself safe all the time, regardless of how well I feel at that time. I am careful to not wind up with huge accumulations of pills I'm not using. When I have bad times we switch to 30 day supplies of meds (which is how they come now anyway with this insurance). I have been told I can give pills to Dr. Mind to lock away. I have a glasstop stove that needs a razor blade to clean it if something gets burned. I keep only what I have to have available and will throw them out if needed. I'm glad that I cannot legally purchase a gun because of mental illness. Even if I weren't terrified of them that would be true. I understand too well the reasoning. Yet while I was a suicidal teenager, which is a volatile combination, there were guns in my house I could get into without even looking up. They were loaded too, and even I know it's pretty reasonable to have been afraid of that. One impulsive moment and something very bad might have happened. Dr. Mind tells me that the finality of that kind of act may have kept me safe from it too, but I am so angry right now that I wasn't allowed to have tylenol in my room because when my mother found out I was suicidal I was collecting pills slowly, but I could have picked up a gun simply by walking downstairs.

I also realized I'm angry because I can't even ask my mother what happened to scare me. She remembers almost nothing bad. I don't know that I would if I could, but it is frustrating that the one person who could answer that question can't be asked. And not only does my mother not remember many things and freely admits to that, she was told by a very, very stupid mental health professional that if I didn't talk about being molested (which my mother knew about because I told her at age 2) that I didn't remember and it should never be brought up. I never forgot. In fact, it did not stop. My mother refuses to believe this, and has no idea that my sister who wasn't even born until later remembers being molested as well, and that I was present with her, which proves that my memory isn't made up. I don't remember my sister being there, and from what we know it seems that it was much, much worse for me, but she doesn't have clear memories.

So, there it stands. I still have a lot more work to do on this one. And just to make it all the worse, after I left Dr. Mind I was driving along when either a stone somehow hit my passenger window or a car backfired, and scared me half to death. 60 minutes of working on believing that just because someone has a gun doesn't mean they plan to shoot has been totally lost.

I'm sure lots more is coming on this. It's not one I'm good at putting away even though I really need to do that.

Conversation

Co-worker: We just got a new admission. He has...I can never say this...dyskinesia...is that right?

Just Me: Yep.

Co-worker: But what's the other word? T-something....

Just Me: Tardive. Tardive dyskinesia.

Co-worker: Are you sure? I always get that one wrong.

Just Me (thinks): Hmm......Is this a good time to point out that I have had extra-pyramidal syndrome, a precursor to TD so I know it all too well? Nah...........

Such weird moments when these things come up.

I also have a patient who is, well, difficult. She refuses adamently most things we try to do. During the eval she made a huge point of telling me in great detail about being molested for 2 years by an uncle and all the ways it still affects her. As it turns out she was kind of making some of this up, not that it happened or that it still is a problem, but she is not always the way she made herself out to be.

She made me think a lot though. While no two situations of this sort are the same, and the context of our lives is different, one of the things that is helping me gain acceptance of who I am is when I encounter people who may have had terrible things happen to them, but not necessarily to the extent that I've been through, and when I see that the things they experienced affected them, it makes it more ok for me to be affected by the things that were bad in my own life.

Worse childhoods than mine exist. But I also survived one that is pretty awful compared to most. I've lived through some really bad things. I don't know why I'm just now coming to accept that it is ok for those things to have an effect on my life. But I am. Talking as much as I have on this blog lately about things I've experienced is kind of a weird feeling because in general I don't talk about it, but I'm finally becoming less ashamed of the experiences as I am more comfortable with the idea that they may have been bad things, but I've survived and handled them fairly well considering. I used to think I could move on and live a life totally separate from my past. Maybe that could have happened if I didn't get sick, but I did. Getting sick meant that my mind has looked at things I was afraid of and them worse. My brain has also taken things that I'm partially ok with and imposed new and harsher rules. I am just now realizing that some of them make no sense. For example: I spend 60-90 minutes per month with Dr. Brain. I have been seeing her about 6 1/2 years, so that means at most I've spent something like 120 hours with her. In contrast I have spent an hour per week to 2 hours per week with Dr. Mind for almost 4 years. That would be a minimum of 210 hours, and it's really much more than that, probably closer to 250 hours. So about twice as much time. Both of them have seen me cry and shared my heartache at different times. I literally trust both of them with my life. However, when it comes to sharing intense details of things that I've talk almost nobody or nobody, Dr. Mind has gotten far closer to me. Yet where am I much more relaxed? With Dr. Brain. Simply because she is a woman. It makes no sense, but apparently with me gender is worth major points. Another example on the same theme: Thanks to what I've been through gynecologist visits are torture for me. Because I have pretty much no risk of problems because of my lifelong abstinence program and since I've had testing for nasty diseases passed on by child molesters twice and been clear I only have to do that every 3 years. I still have 2 1/2 years to go. Already though if I think of it I dread it. My gynecologist I actually liked moved away a few years ago. I got a referral from Dr. Body and asked for someone skilled with trauma patients. It was awful. She was totally uncomfortable and her nurse asked a totally inappropriate, gossipy question that I found really offensive. (Yes, my brother had serious health issues at birth. But if you want to ask about that you need to choose ANY method besides "so did your brother die?" as the only question asked, when the issues he had have absolutely nothing to do with my health). I don't want to go back. I am very, very comfortable with Dr. Body. I trust him as much as I trust any man; more really since he's allowed to touch me. I also trust his nurse who would be there, and between them they would keep me totally in the right place mentally. He could do those exams. It makes sense to try. But he's automatically excluded because of being male. It's like they are a different class of human instead of a different gender. Instead I'll probably wind up with a referral from Dr. Brain and a huge drive for a stupid appointment.

I'm falling asleep sitting here and I'm probably not making any sense. I certainly forget my point. So I'm going to go to bed; tomorrow is bust-butt day so I can see Dr. Mind. Finally.

Angry

I've now moved on to feeling frustrated and angry about this entire memory-I-can't-quite-access thing. I know why the brain shuts certain things down. I'm glad for this in many ways. There are things I'm sure that I never will remember and that I am glad I don't remember. In fact the memory that is annoying me now is probably one of them, although I think I will remember eventually (I just don't know that I want to).

The reason I'm angry is that the memory is close, like having words on the tip of your tongue that just won't come out. It's making me not sleep well, which means it is making me tired. It's making me sensitive to anything that is close in any way to whatever it is. (And unfortunately my current book on CD that I listen to during my commute is about guns, and the only other selection I have right now is too).

This is the time when I really hate PTSD. In many ways PTSD is a good thing; I know that I don't want to know everything. In that sense it is protective. However, it is also very frustrating because of this kind of thing where I remember pieces but not enough to know the whole story. And then, in many cases, I've ultimately remembered everything and I have handled those things and in at least some cases been able to get past some of the fear/distaste involved. For a reason I'll let you try to guess at (I doubt it's hard) I have a thing about vaseline that extends to many slimy things (I will not touch vegetable shortening and avoid using it so much that I just threw out the first tub I ever bought, which was in 1998, and it was mostly full). That one I hadn't really forgotten, but refused to acknowledge the reason for the fear. Eventually I did, and while I still hate that feeling, the appearance of it in a jar, and even the slight smell of it, I can stand to use ointments, I have used shortening occasionally, and when I had laser surgery on my birthmark I was able to handle having a layer of bacitracin covered by a layer of Aquap*hor for several weeks while it healed. Which just shows that understanding and remembering lets me move forward, and right now I feel stuck.

I suppose I have to go to work. I'm so tired, I really want to just sleep today. Oh well, maybe I can manage to leave early. I've got an hour coming to me....

Things I DON'T like

1) As I wrote before, I love my Danskos shoes. I wear one pair 4-5 times/week and the other usually at least once. The thing I don't love is the insides of the really expensive pair have no cushioning. I bought insoles for them that worked great for 6 weeks, but then wore out. I replaced them with more expensive insoles, the Dr. Scholls gel-massage kind ("I'm gelling!", a commercial even I recognize and I have not had television for a year now). I HATE them. They bunch up all the time and it hurts. A lot. They give no additional padding whatsoever. So I ordered another pair from the internet. But today the Dr. Scholl's things hurt so badly I bought yet another pair, a pair that I'm 99% sure will be too hot because they are memory foam and don't have a liner. But I don't care, at least I doubt they will hurt me.

2) This stupid gun thing. I didn't sleep well last night, and while I don't remember nightmares I'm fairly sure I enjoyed a few. I was so anxious this morning I called to try to get an additional appointment with Dr. Mind, but he didn't have anything. Which is ok in that I'm very tired, but at the same time I now have to wait until Thursday to talk about it for sure, and it's really bothering me. I know that if I let it go I'm more likely to remember than if I try, but it keeps popping into my head. Really wishing that can of worms didn't get opened, even though I also am glad it did because I needed to know this was more than I was willing to admit.

3) Having so many prescriptions. I was so proud of myself for remembering to pick up the med that I had to have ordered last week, and also for being organized enough to take along 2 more scripts I needed filled. Too bad I just assumed I had the right one. I didn't. I was really surprised that Provigil cost $10. Sadly, it didn't, what I got was more antidepressant and since I'm not sure I'm going to wind up continuing this antidepressant too much longer I may have wasted $10. Hopefully I find that I'm out before I see Dr. Brain Saturday, but that would be too easy. I hate having leftover drugs, because I need to hang on to them for a while in case I have to go back on them, but eventually I'll find that I've stockpiled them in a drawer I don't open often, and at that point I will realize I have 270 pills that are lethal in overdose and I have to toss them because part of my keeping myself safe at all times is to keep temptation far away. On the plus side I FINALLY have the med that keeps me from peeing every 15 minutes. And that is a HUGE blessing.

I guess it is good though that the don't likes are far fewer than the likes.......

I want to know

A few days ago I posted about my fear of guns. I don't think it's something I've ever mentioned before to anyone; growing up in Appalachia guns are a normal part of life and being afraid of them would be considered pretty weird. And after I left that world it just hasn't come up. It wouldn't have come up now except that it had some minor relevance to what I was actually telling Dr. Mind and he was surprised I'd never mentioned it before, which led to asking why I'm afraid and while I had an answer even I could hear it was flimsy and didn't make total sense. Which means I partially know.

This has now started to drive me crazy. I want to know what I don't remember. The more pressure I put on myself to remember the less I will remember. But there is something, sort of a part of a memory that isn't enough to make me know anything, that keeps rubbing at my subconscious. I just want to know.

This is why I hate this kind of memory. I have plenty of scary bad memories. I choose not to acknowledge most of them. But the ones that my mind has refused to give me a choice about at the ones I hate. Some of my other fears involve very scary things. For example, I have a deep fear of basements. This goes so far that I chose my house based on the basement being one I could handle. Another house I really liked had a creepy basement and I'll always be glad I chose to avoid it because I'd never have felt safe. Even with the basement I have it has taken me 6 years to feel safe there without every light down there blazing. I don't let it be dark when I'm there, but it can be dim. I know why I'm afraid of basements. When I was very young, maybe 3, a person who molested me took me to a dark, dank, unfinished part of a basement and made sure I knew that if I ever told what he did to me that he'd keep me there. I have not been ok in a basement the 30 years since that. I can't say this is a memory I exactly manage to avoid; I don't. But I also don't give it a lot of power. Yes, I avoid basements. But I also don't let it totally control things; I do go in my basement all the time, I can spend time down there, and I'm not afraid. I also am ok in my mother's basement (which is really part of her house) and the basement of the last house she was in actually was finished and I lived there for a very short time, without issues. I even went to see my sister's basement when she bought a house. On the other hand, I will not return to her basement, and I am never relaxed in any basement. And really that's ok with me. I have reached a level with this fear that I can function. I'll never have a home with a scary basement (defined as such by me), but big deal. I know why I'm afraid, I accept that it's a good reason, and I have moved on.

In contrast, something like the gun thing I have no way to apply logic to this situation. I don't know why I'm afraid, so it's hard to accept that it's ok. I can live in most parts of my life without this being an issue, but at the same time, I also need to not be terrified of police. I need to be able to handle guns firing on New Year's. But it's hard to argue with a fear without being able to rationalize. "I don't need to be afraid because this is not the same circumstances as _____". "Most people would never lock you in a basement." "Just because ________ did ________ with a gun doesn't mean the nice policeman will". Except I don't know what those blanks are.

I'm hoping Dr. Mind has some magic trick to make me remember. I know he really doesn't, but I can hope all I want.Until then I'm just wishing I knew how to push it out. I had a patient yesterday who carried on a pretty long conversation with her poop. Perhaps something like that is the key?

Best Poem EVER

At one of my nursing homes a bunch of children from some school sent pictures and poems and signs about grandparents for grandparents day. These are hanging all over the place. In a place of honor in the elevator is my absolute favorite poem ever:

Grandparents are great

so there's no need to hate.

And if they have a pet

You don't have to fret.

They are usually tame

and you should know its name.

So don't be afraid

but when you need an aid (sic)

Your grandparents will be there

even if they have no hair!

By Zachary Wilson

Facing Fears

I'm working very, very hard in therapy right now on trust and trying to get over being eternally afraid of everything. This is harder than I can explain. Just working on it requires a level of trust that is beyond anything I've ever done. It requires a lot of either talking about hypothethical situations and what is a reasonable reaction versus what is my fear based reaction, then talking through why, and it also involves a lot of discussing scenarios where I've trusted or struggled to trust people.

It also seems to be making me talk about a lot of things I'm really afraid of. Some are things I've always known, some of things that I know I shouldn't be so afraid of even though I have good reasons, and the worst are fears that I have and know I have, but which I don't know the exact reason. This means I'm facing memories that either I've been ignoring for a long time, since I learned that it's ok to acknowledge some of the things I've experienced but then move on without them being so big, and some are things I know I'm terrified of and I have some reason, but I am also left with a pretty strong suspicion that I don't remember something that happened to me that was a very big deal. Last week mid-discussion I remembered why something upsets me. Makes perfect sense now. Today we talked about something I never exactly realized was a fear I have out of proportion. I knew I was afraid, but not that I was excessively afraid. Or I never wanted to bother analyzing it. The thing about this is that I remember things that are reasons for fear. However, listening to myself talk about it I knew that what I was saying was only part of it. My reasons were too logical, too adult, to be the full reason for the fear. And I was raised in a culture where this particular fear would be unusual due to cultural exposure. (I don't know why I'm talking around this. Well, I do know why; publicly admitting that this is something that I'm fairly sure I had a scary experience with as a child means giving you a somewhat better idea of how horrible my childhood was. I am terrified of guns. Not in the normal sense, the commonsense way, in the way that it was very difficult for me to be near the policeman who helped me get into my locked house the other night, because he had a gun.)

I had a really, really hard time last winter when I had my car accident because the officer had me sit in his car to take the statement and do the paperwork and so I was in a tiny space with a strange MAN with a GUN. I'm unreasonably afraid and have been for a very long time; I remember actually what I know now was my very first panic attack. And it was caused by being near a gun being fired. It wasn't done unsafely (other than the person with the gun was far too unstable to own guns), I was just supposed to be watching target practice and I believe I was going to learn to fire the pistol that day. Instead I completely panicked, long before I'd touched the thing.

And now I'm wondering why. I hate the knowledge that I don't remember something traumatic. Partly I hate it because it means that memory can sneak up on me, and partly because I hate the mystery. It's my life, I just want to remember it. I also fear the memories I don't have, because since I do have good recall of many truly horrible things I've lived through, the ones I don't can sometimes be really bad. This one carries the logic as well of if something happened that caused this kind of fear it was probably really, really bad. I listened to myself talk and there very clearly is something missing in my story. I know Dr. Mind seemed to suspect the same thing I do, that at some point I saw someone threaten someone with a gun. I suspect that I even know what gun, because I know that there was one gun I was much more afraid of than others, and I am definitely more afraid of handguns than other guns. (Hence the terror of cops).

The thing is, trying to remember will never work. And yet it's kind of hard not to wonder, now that I've started. I was rather surprised in fact by my intense lack of curiosity about this one. I don't think I've ever talked about this with anyone, simply because I've made it a non-issue. Except that a disportionate fear is not a non-issue when it stops me from being ok in normal situations. Which it does; even knowing that Dr. Mind owns a gun, something that isn't really a surprise, bothers me to some extent.

So now I just go on for the next week, trying to relax enough that this memory might come out. Kind of hoping it waits until I'm with Dr. Mind. Sometimes these memories I've forgotten can be a bit intense. In college I had some literature course that had required attendance at movies once a week. We were tested on the movies so it was important to know what happened. I was in the middle of one that I actually found boring when suddenly I was hit by a panic attack that caused me to run out of the movie and all the way to the opposite side of campus to my dorm room. It was really unpleasant because I had to admit to the professor that I couldn't watch it at that time and give some explanation, then I had to deal with the memories, then eventually I had to watch the stupid movie so I could pass. And as it turned out I could have skipped it; there were minimal questions about it on the test. I was pretty frustrated that the professor couldn't just tell me that I could easily pass without the trauma. I have no idea what upset me now, but I sure know what I remembered.

For now hopefully I can sleep. Tomorrow is a very big day.

Question

This may sound like I'm complaining. I'm not. I am, however, curious about something.

Several months ago I thought about closing this blog. There were very few hits and even fewer returning readers. I felt like people didn't bother reading after I wasn't so sick and there was less drama.

Then I was fired. Drama. And my hits went way, way up the whole time I was off. I also figured out that if someone reads the blog in a reader I don't know about it, so that means my numbers might be a little more depressing than I thought. I also realized that I need this blog. Not because I want people to read necessarily, but because it is something I use as a way to fill the gaps in my memory when I'm not well. It also lets me have a record of what I've been through. Since I don't remember much of the last 15 years, anything that gives me clues helps.

But......I'm working again. And there are suddenly a lot less hits. Something like less than half of what I was getting. And while I'm not going to stop writing because this really is more for me than you, (and thank you nasty anonymous commenter for letting me really understand that), I do want to understand. What is missing when my life isn't falling apart? What would make me interesting the rest of the time? I'm not going to seek out drama. I like it when things stay calm in my life; I've had little of that. But it also feels weird that people only seem to want to read about the bad things. Is that really true?

I didn't quite tell the truth

I said I'd be talking about something important tonight. But a few things have happened. First I had my dates wrong. So that topic needs to wait a few days. Then, I had a tremendously crappy day and I'm just tired and whiny. And I got a flu shot and my arm aches, probably mainly because I'm so tired. And the biggest reason? I had to beg a policeman to help me break into my house tonight. And that just was the crowning glory to a crappy day. Thankfully he was really nice and just laughed, but it's still a rather unique experience. And least I know it's not easy to break into my house now........

More later.

I hate meds

As I've discussed at different times, I have struggled with significant constipation for years and it has been much worse since I have been on Seroquel. This was controlled by meds until I started taking the extra antidepressant in July. It has been murder. About 5 lbs. worth of murder. I hoped last week when I decreased the dose that this would improve. It did not. I've spent all of today in substantial pain, and I'm becoming bitter. It's not like I'm not doing my part; I have been taking 5 times the usual stool softener dose, 1-2 doses of vegetable laxative, 1-2 doses of Miralax (which I admittedly had stopped as it seemed I didn't need it anymore; this is what my dr. warned me of.......I never do this with mood stabilizers, but apparently I have the typical bipolar issue with bowel meds), and high doses of fiber daily. And all that seems to have happened is that all that stuff has turned into a very painful blob that isn't interested in doing anything but causing me pain. Oh yeah, and I've also done a wonderful job of mixing in what would technically be an overdose of GasX. Which has not helped the pain, at all. It's just about time to make a meal of spinach. Generally if I can eat about a whole can of spinach I'll feel better. Unfortunately I am not all that hungry because my entire gut is full. I even stopped for decaf coffee.

Oh, and if you ever are tempted to dump a dose of Miralax in grapefruit juice, think twice. You have to drink the whole glass, and if you accidentally eat something sweet you'll be very, very sorry.

Also, work is stressing me out. Bleck.

Check back tomorrow evening for a very important post that actually has nothing to do with me. (Hear that old anonymous who says this is a self-centered blog.............. :)

9/12

I'd fully intended to post this yesterday. Then I worked over 30 hours between Wed., Thurs., and Friday. I went to bed as soon as I got home last night. I couldn't have been coherent.

So anyway, today is when I'm going to say what I wanted to say on 9/11.

One of the things that is both frustrating and a blessing in regards to the last 10 years of my life is that my memories are somewhat limited. I have very, very clear memories of certain events and then absolutely no memory of others In many ways the other memories I have are the things recorded here and in other writings I have saved. I have been trying to recover knowledge about some of the things that I should know.

A month or so ago I realized that I didn't remember as much about 9/11 as I should. So I started reading and watching YouTube. I was amazed at what I'd forgotten. I have, just like most people, astonishingly clear memories of parts of that day. I know where I was when I found out and what I was doing when the first plane hit the World Trade Center. I remember too clearly what it was like to work in a basement that did not allow tv, radio, or cell phones to work. We knew only what we found out and shared with the rest of us as we went upstairs to fetch patients. I was writing an order at a nursing station when the 2nd tower fell and saw that on tv. I remember hearing and believing for most of the day that the capitol building was hit by a car bomb. This actually was a rumor that was quickly dispelled, but we had such inconsistent information that it was hard to follow. And more than anything I remember those blue skies with no planes, in an place close enough to the airport to never have no planes visible.

Anyway, when I started doing this I found out so much that I had no memory of. Or I would read something and remember that I'd heard this but hadn't even processed it as an individual horror. And there were things that were totally new to me that most people have been exposed to and remember. The biggest shock was the phone call of victim Kevin Cosgrove's 911 call from a very high floor of the World Trade Center. If you've not heard this and you are an adult who is feeling emotionally strong you should google it. If that does not apply to you, don't. It is one of the hardest things I've ever heard and I'll give away the ending by saying that it never occurred to me that the people in the towers when they fell knew that it was happening but they clearly did. The tape catches his scream and then ends. I had a vague memory when I read about it of them still finding remains 5 years later but it was now I was well enough to understand the horror of that.

There was so much that I never registered. I forgot more than most people, but sometime I'd highly recommend reading wikipedia about the day and each flight, watching videos, and reading links. It's not easy, but I suspect that even though we all were so adament about "we'll never forget" that most of us have.

I have a tradition that each year around this time I re-read a book I have about one of the survivors. From now on I will also make all the other memories as real as I can.

Defective

I've had an extremely long, intense week. I worked until 9:15 last night (started at 9 AM) and today I worked a record 8:30-10:00, with an hour and 15 minutes off to see Dr. Mind. I actually was having a terrible time with Dr. Mind because things got intense, I got teary, and I simply couldn't let myself cry. So we had a lot of quiet time while I got myself together, about 6 times. He'd kill me if he knew how late I actually worked. Hopefully that will never come up. I only got a few hours of sleep last night because I was so anxious about today. I told them I may be in a little late tomorrow because I'm exhausted. I didn't take Seroquel last night and I did tonight, so I'll sleep, but I took it way later than usual and that means waking will be harder. But I have to sleep. I was so tired today that at one point I tried to say "what's wrong Margaret?" and "what's Margaret wrong" came out. That's not real good when talking to people with dementia.

I worked with the most precise patient I may have ever met tonight. I got her ready for bed. It took an ETERNITY because everything had to be done a certain way, often not remotely the most effecient way. And everything had to be so specific. I had to put a certain amount of soap on the washcloth. The water had to be a certain temperature and the washcloth had to sit under it for a certain amount of time. I still smell like her soap. In fact I itch from her soap; I have a lot of soap allergies and should have put on gloves but I was just so, so tired I forgot about my allergies. I had to pat her back with the washcloth, not wipe it off. Don't know why. At the end she told me I was good for someone who hadn't done this before. Um, let's see. I started my full-time clinicals 9 years and 4 months ago. Not my first bath.....Not my hundredth bath.

During the time we were working earlier in the day she noticed my birthmark. I've mentioned before but not for a long time that I have a large portwine stain (this kind of birthmark Gorbachev has on his forehead) on most of one hand and in spots up my arm. This kind of birthmark ages and while mine was lightened a tiny bit and the progression seemed to slow after a couple laser treatments 9 years ago (done to stop bleeders. I think I'm now back to or past where I was pre-treatment as the bleeder things are back, although not bleeding. From now on I'll have localized treatments of bleeders only. Probably should do it proactively but ick.) Anyway it currently is a color that is more vivid than before, the reddish purple is darkening to more of a maroon. It has always looked like a very bad burn, but right now it does more so. People ask me if it's a burn probably daily and I have such a routine answer and I show them the whole thing and it's over in 30 seconds unless they ask questions, which I encourage. I learned a long time ago that it's best if people are totally comfortable with what you touch them with and they deserve an explanation because of this. One small part looks rashy and that also is why I'm totally honest. Plus, I've been answering these questions since I could first talk. I can't say I love it, but I seem to separate patients from rude other people. (if you're not my patient you are rude when you ask, fyi. Even if asked with concern you are asking because you're curious and it feels like staring. Also not appreciated: "At least it's not on your face" (or any variation---I'm glad it's not there but nobody cares that extremity vascular birthmarks have their own problems and can in fact be painful at times); "Why don't you have it removed?" (it hurts and doesn't work); "You shouldn't worry about that." (um, you wake ONE time covered in blood all over your face, arms, shirt and legs because a little capillary on your finger busted. Repeat a few times. It's not the cosmetic thing I care about.); "Laser surgery doesn't hurt" (said to a woman with 2nd and 3rd degree burns covering 80% of her dominant hand, who hasn't been able to pull up a pair of pants without contortions or wear anything but overalls for 2 weeks and sees no end in sight (total of 3 1/2 weeks in 4 pairs of pants); "At least it's not something that hurts" (actually, it does sometimes. I wound up with one terrible case of tendonitis in grad school because of the overgrowth of my hand tendons. Also it hurts with cold and I've spent my life finding the heaviest gloves I can, and it affects how I hold pends) and others that maybe I'll edit in here someday when I'm not so tired.

Anyway, she got the standard answer. She is very, very gossipy and has a partner in gossip. Who witnessed this conversation. So they then had dinner together and I think talked about it. As I said, I encourage discussion because patients deserve to know and some are afraid of hurting me. But she was one of the 1:400 people who went TOO FAR.

Later she said something about it and I answered matter-of-factly. And then she decided that it was good to say "your poor mother. It must have been so hard to have that happen to her". Yeah, after years of infertility my mom cared a whoooooooooooooolllllllllllllllllllllllllllllllle lot about what was then a hot pink area of skin. And then on and on about how awful it was and how awful birth defects are. I was fuming by the end.

(And keep in mind I'm so sensitive about how people feel that I had one patient in psych who was terrified of it. I wore layers of gloves, then colored gloves, and kept my dominant hand behind my back for 30 minutes/day while treating him for several months. It's ok if it's weird to you. It's rare, it feels different than regular skin (mainly it's hot), but it's still part of me. And it is NOT a tragedy. For that matter, mental illness turns out to not be the tragedy I once thought either......)

This seems wrong/This seems RIGHT

So I just was filling out the paperwork for my new life insurance policy. In general I like to keep enough that my house could be paid off if something happened to me. With this policy if you get over a certain amount you have to go through underwriting. Underwriting is a word that makes me sick. And this one was so very bad that I am getting half the insurance I wanted.

Questions that I think are a bit ridiculous:

"Within the past 5 years have you received medical advice or sought treatment for psychosis, internal cancer including melanoma, leukemia or Hodgkin's disease, ALS, muscular dystrophy, angina or had heart surgery, heart attack or transient ischemic attack?"

------Um, psychosis is like cancer?????? Psychosis is not a terminal illness. And since they don't pay if you kill yourself, it seems to have little effect on insurability to me.

"Within the past 10 years have you received medical advice or sought treatment for epilepsy, nervous mental or emotional disorders, paralysis, skin, bone, muscle, back, knee, neck or joint disorder, muscular or neurological disorders, fibromyalgia or chronic fatigue syndrome. If so, list condition, medications, dates of treatment, treatment received and recovery, physican's/hospital's name, address, and phone #."

-----------First off, 10 years? I actually stopped even trying at this point because I'm not about to list 10 years of psychiatric treatments, meds, and outcomes. I'd have to spend about 3 hours trying to accurately sort that out. Then there's the simple fact that I had some PT on my knee a couple years ago and that's not even worth mentioning, nor can I give any real info on that because it was minor and I don't even remember what was wrong. (Concurrent mixed episode). Secondly, once again we're combining very serious situations with not so serious. Really, I do know bipolar is serious. But equivalent to paralysis? Neurological disorders? Again, even if bipolar is FATAL they won't pay. So why do they even care?

They also ask if you've been convicted of or plead guilty to a misdemeanor. Ok, that's a somewhat reasonable question. But what qualifies? Do they have to know about my speeding ticket? It is, after all, a misdemeanor.

I do not see why any insurer has the right to ask what they are asking. Especially when it is for a group policy and if I submit accurate answers my employers have a way of finding out the details of my medical history and that I've had psychosis, take anti-psychotics, etc.

On the other hand, I realized something amazing today. For years I lived with the knowledge that when I was honest with myself I did not care if I lived. I made a decision that I would take lithium despite being at higher risk for side effects that would damage my kidneys. I made that decision knowing that I could change my mind, and also that I really didn't care because I felt the quality of my life was so limited. Which it was. Today though I was listening to a book on CD and it said something about a character dying at age 37. And I realized that I want to live beyond 37. For the first time, maybe ever. That is incredible. It really shows how far I've come in one year. (Not that I'm loving life so much that I'm willing to give up lithium, but I'm aslo not ready to give up the monitoring that makes it safe.)

Scary

I realized after my last post that Sunday wasn't the only time I've been cranky lately. So I did some thinking and realized that while I do not feel manic, I also am showing clear signs that it is coming. So, after consultation with Dr. Brain, I'm lowering my antidepressant.

I've known this was a likely event ever since I increased it in July. The point was especially driven home when I tried to go up a little bit more and felt manic symptoms within hours. Plus Dr. Brain has clearly not wanted me on so much.

The thing is that I'm not 100% better yet. I am still fighting with some depression. It's a lot better, but it is there. I'm working on something in therapy that is beyond difficult (trying to learn more appropriate reactions than trusting people too much so that I get hurt when they weren't the right people to trust to start with versus not trusting people who I have every reason to trust. I cannot think of a way to emphasize fully enough how BAD I am at this. I'm working on learning, but it is as hard as anything I've ever tried. Which makes it less than ideal to be making changes.

This would be ok, just something to stay aware of, except that I'm once again on my last really good option for a med. Thanks to misdiagnosis I have been on nearly every antidepressant out there, most of them at high doses. Thanks to this we know that many of them make me very manic, a few I'm allergic to or have rare but serious side effects for me, and none ever worked well until this one. The only thing left is Emsam, which is a MAOI and as such it has precautions. A few are food restrictions and while I'd miss some of the foods they aren't the biggest issue. The big issue is that you have to be off all antidepressants for a week before starting Emsam. And that thought terrifies me.

I know that I just have to hope that I'm fine at this lowered dose. That's certainly possible and if mania is even starting that may mean the depression is lifting more than I'm aware.

Regardless, I have that horrible feeling of being afraid of the future. I really hate that.

Didn't see that coming

I just blew up at a telemarketer. No clue why. I didn't mean to. Whatever they are calling for though, they call repeatedly and they aren't calling for me. I've told them before that the person they are calling for had this number well over 6 years ago. They inevitably go away for a few weeks then start calling again. And this time I'd had it. I started to just nicely tell them AGAIN and halfway through the sentence I lost it and ended with "AND QUIT CALLING" and hung up on them.

That scares me. That was strikingly like a manic temper loss and I haven't do that in so long I can't even remember. Yes, they frustrate me. Yes I'm tired of answering calls for this Gina person after having this phone number for so long, especially because I get calls for her from bill collectors (what I suspect this is) and once I had to sort something out with her bank, who apparently she'd not updated that she had a new number and were calling to tell her that her new checks were ready. That was about a year ago. So for all I know she gives this number out still.

But I had no reason to get so mad. Generally I ignore this kind of call; I have Caller ID. But I did answer knowing that they'd keep calling. But I just don't lose my temper like that..........

This is where it is scary to be bipolar. What does it mean? And all I can do is wait and find out.

I can do it.....just not here. And the potty dance.

I'm really tired tonight. I've had a physically demanding few days with more full-body lifting required than usually happens in a week. I have no idea why everyone has been challenging, but it makes for quite a week.

Then today was nuts. I had to have a minor repair done to my car. I specifically scheduled it so that it wouldn't disrupt my life much. The plan was: drop the car off at 8:20 this morning. The rental agency was to pick me up at 8:30 and take me to get the rental. Then I'd go to work, arriving around 9 or a few minutes after. This would get me done well in time to return the rental and pick up my car before closing. I was to be off early today so that was even better.

So, I did my part. I woke up with my sinus infection back, which caused annoyance because I was to finish the strong antibiotic I was on today. The car was at the dealer at 8:20. I was waiting at 8:25 for the pick-up. At 8:35 I called in. They said someone would be right there. The dealer is 4 minutes away if traffic is heavy and you get the main light. At 8:51 they showed up. I was livid. He asked how I was and I told him I was fine until I was made late for work. Then I was very terse with him as he tried small talk. I would have relaxed had he apologized but he kept trying to ignore the fact that I was furious. Then he tried to excuse it as "we ignore the things that say pickup because the internet orders all say that." Which I might have understood had I not specifically called them to confirm all of this yesterday. So I got to work around 9:45. Then I had to rush and both my evals were difficult and my discharge visit involved trying to explain why someone can't safely go home. It included one of my least favorite and yet very common conversations:

Patient: I want to go home. I can be home. I did fine before.

Just Me: Well, I know that's true. But things were different before. You hadn't be so very sick. And you've worked extremely hard and you've come a huge distance. When you were first here you couldn't do this that or the other. And now you can do this, this, and this with some help.

Patient: I can do it without help.

Just Me: Ok, but there are things you aren't able to do at all right now. You've not even wanted to try to put on pants. Which is fine, that's your choice but to go home you'd need to be able to do that.

Patient: I can't put on pants. I get too tired and out of breath. But I can do it at home.

Just Me: But how? If it's tiring here it would be tiring there. And I don't think you want to go without pants.

Patient: Oh shoot. (Experiences loud bodily function which makes him laugh and distracts him, THANK GOD.)

I have this discussion several times/month. It never is less painful. There are several conversations I have so often I know what all possible responses to my statements might be. The one that nobody has ever completed to my satisfaction though is the one surrounding toilet safety.

Just Me: Ok, I want you to lock your brakes on your wheelchair. I'm going to put this safety belt on and tighten it. This helps me keep you from falling. Now, put your hands on your armrests and push up to stand. On the count of 3. One...two...three. (Just Me helps the patient stand with varying degrees of physical effort. ) Now, I want you to hold the walker/my elbows and turn so you are facing me and in position to sit.

(Inevitably at this point the patient does what the aides tell them and tries to pull up with the grab bar. Inevitably I explain the entire above sequence again. Sometimes I have to explain why doing it my way is important and that I need them to do it themselves to be able to go home.)

Patient: (nearly always) Now pull my pants down.

Just Me: Well, first you have to get turned all the way around. Then YOU can pull your pants down. I'm here to help you do it for yourself as much as possible. But FIRST YOU HAVE TO TURN. (that's emphasized because about 90% of patients, especially female patients, want to turn with their pants down).

I cannot figure out this turning with pants at half-mast thing. It truly drives me nuts trying to figure it out. I even tried it and all that happened was I nearly fell. It does not make any part of going to the bathroom easier.

Anyway, getting back to the real story, glimpses of my inner life aside....

I also discovered this new therapetic strategy today and I used it shamelessly. I don't know what it never occurred to me before. Probably because it is slightly evil. This woman wouldn't move her arms because it made her hip hurt. My standard explanation that hips and arms aren't connected and do not pull on one another just by simple anatomy (and yes, this is a converation I also have routinely) failed. The woman refused to do anything because...here it comes....she could do it if she wanted. Never mind her broken hip. If she chose she could do anything. Although even my touching her leg made her hurt terribly, much less moving it. She kept refusing to do anything and getting mad if I asked her. She had a dab of peanut butter on her shirt. I made a fuss about it and made it seem worse than it was (I could have wiped it off easily), got her to change shirts and then shamelessly told her she had peanut butter on her face and needed to wash it. She didn't, but she did do as I asked. Evil therapist.....but it got the job done.

I then flew through work, got no lunch break because I didn't have time, and scurried through patients. I suddenly realized while finishing paperwork that I had to get my car NOW and that I hadn't gotten out as early as I'd hoped thanks to getting in later. So I called and paid the dealer over the phone. I then made sure to pocket the paperwork from the rental agency because I had every intention of calling customer service tonight.

When I got to the rental office there were several people waiting in chairs. The guy asked me how it went. I said "well, after you all made me late for work and caused me to have to give up my lunch it wasn't a great day". I was nice and clear so everyone heard. They asked what happened and I told them. I pointed out that I had trusted them to keep their part in my plan for a tightly squeezed day and they violated that trust. Ultimately they gave me 50% off, which is why the name of the agency is not being plastered all over this blog. That was fair and I appreciated this guy who was nice about it.

In the meantime I'd given the wrong street for the pharmacy I wanted (wrong cross street). So my new antibiotic was called in to a pharmacy I used to use which isn't really convenient down here. I had to get that, plus a $15 OTC medicine and since I still hadn't eaten I nearly starved. I also was totally puzzled as I had a message from the doctor to take a small dose of something that as far as I know it TOTALLY forbidden for bipolar patients. (Sudafed. Makes calm people hyper. Last time I took it I wasn't diagnosed but sure was manic. I know why this was suggested, although I suspect it was either by a med student or nurse rather than my doctor specifically, it's because my infection doesn't clear easily because I can't dry things up. But unless Dr. Brain says it is ok, I'm ignoring that suggestion because nobody who has not been in a mixed state for months on end is allowed to tell that there is an acceptable amount of mania, or an acceptable risk. For someone who avoids caffeine totally (it's now been over 2 years since I had a cup of real coffee or a real Coke or iced tea in a restaurant) taking a stimulant in any way is a little bit more than it would be for someone used to this. My reaction to just about anything that causes a bit of adrenaline release proves this. Anyone who has been around my dental office when I've had numbing knows; I have to take 1 mg of ativan before any procedure, not because I need the sedation but because the epinephrine in the shots causes me to shake head to toe for quite a while. When this first happened the dentist himself had to get my ativan out for me because I couldn't work my purse or pill container. Now we know, and prepare. Even with all that ativan though (and that's a good bit for me since I'm pretty sensitive to it) I still always have to wait for probably 20-30 minutes after the shot before they can do anything in my mouth safely. By now we just have a routine: I get the shots. The dentist sees about 5 other patients. (Not really, although he does sometimes do a filling or two). He pops in and out and checks my vitals a bunch of times. Someone usually stays with me most of the time to keep my company and I think to keep me calm since it's a rather frightening sensation. And then when I'm not shaking we drill.

Regardless I'm tired and I think it's about bedtime. I don't even know what my point was tonight. Welcome to the ramblings of a very tired, somewhat stressed woman who at lunch at 9 pm.

Sleep. Heavenly sleep. And rambling b/c I'm still sleepy.

I've now been sleeping normally for 3 weeks. I've gotten to the point now where I simply go to sleep. No relaxation tape, nothing. Last night I fell asleep while trying to stay awake just long enough to read to the end of the page. When I woke up for my 4 am meds I had (uncharacteristically) not only fallen asleep with a light on in the bedroom, but I must have had plans to get something from the living room because that light was also on and I am a person who turns out lights on the way out of every room.

I can't even begin to explain what sleeping like this feels like. Dr. Mind compared it to finding out that Santa Claus is real, and that seems about accurate. I have never been able to sleep this way. I didn't even sleep well as a baby. As a child I slept ok but my sleep was easily disturbed, I had a lot of nightmares and I was/am a sleep walker and sleep talker. It's been a while since I know I was walking in my sleep, although that doesn't necessarily mean much because I usually get back to bed and find out in the morning when I discover I locked the cat in the basement/garage/other place cats don't belong and where I would never intentionally stick her. I still wake myself up talking/yelling in my sleep. I did that last night, in fact. One of my more embarrassing moments is a sleep talking story. When I was a camp counselor every year during the training week we did a camp-out up the mountain at the outpost site. (Because it was a place for kids with special needs we didn't exactly "rough it" the rest of the time. We had electricity, comfortable beds, a real bathroom with a shower in each cabin, an air-conditioned dining hall, etc. to best meet a huge range of medical needs. Even out camp-outs were a lot less intense than a more traditional camp; we had A-frame structures that kept us dry if it rained and which were more comfortable than the ground.) Anyway, the 3rd year I worked there I had as much seniority as anyone else, including the camp director who was a counselor with me the first year. Seniority gave you a few rights plus the advantage of knowing what was a good thing when you saw it and how to manipulate the system (ie, always order extra supplies on s'more night and the counselors get free candy bars; specify koolaid flavor for snack or you get green; specify koolaid or you get water and everyone hates you; if someone's info sheet says they are a picky eater avoid that kid's table like the plague or you'll be making 3 PB&J sandwiches per day for the next 11 days. Pizza casserole day is McDonald's on break day.) So my 3 friends and I grabbed the one tent that was available. We got it up without problems (go us!) and jammed ourselves in to sleep that night. At some point very late at night I, the other women in the tent and everyone in both A-frames (which were not terribly close to the tent) were awakened by my screaming about something. And of course whatever it was that I screamed was somewhat embarrassing. I don't remember what, but I sure heard about it a lot that summer.