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

Sunday, February 28, 2010

123 Days

October 28 was quite possibly the most ill I have ever been with bipolar. It was my 3rd day in the hospital and my first on the new medication. I had slept poorly the night before, mainly because the stupid nurse who I came to HATE (Cynthia, a name I'll never forget), gave me Seroquel when i asked for ativan and she thought it was too early. I found out days later that I actually had ativan ordered just as it had been at home, on a "up to 4/day" basis rather than "every 6 hours) but she interpreted that as every 6 and since I wasn't due she told me to take the Seroquel. I mumbled something about that making me tired anyway, took it, and got ready for bed. By the time 8:15 group rolled around I was passed out. It's important to understand that because sleep has been so dicey for me and sleeping pills don't work for me that I have been taught through every method needed to drill it into my brain that when the Seroquel makes me sleepy I am to sleep. I am not to finish the page, not to finish the show, not to finish writing the blog post. I am to sleep. You'll notice I end blog posts abruptly sometimes, referring to getting sleepy. That's the reason. During the months I was learning to sleep again both doctors questioned me routinely on whether I was doing this, every time I had a bad night. After I learned I wasn't going to get away with it I just stopped trying and now I drop everything for sleep. But Cynthia was having none of that, wouldn't even let me explain. I was so groggy I couldn't get my shoes on, and then I was forced to sit in a group and pretend to listen when I was so drugged I couldn't think, and that made me cry and then she made me talk and I couldn't get words or thoughts out so I just cried harder, and I proceeded to cry for hours. After group she came into my room and tried to calm me down and I told her that she made me feel like I did something bad, that I misbehaved, when all I was doing was following the instructions of my doctors, and that because I had missed out on the sleepy window I would now have a bad night. She just lectured and insisted on it all being related to my condition at the time. I think she thought it wasn't THAT much Seroquel, it was a middle-sized dose, but for me it was enough that I had no business anywhere but sleeping. Anyway, after she left I cried myself to sleep finally, waking multiple times with nightmares. One of them was so horrible that I still remember it.

So I started the 28th feeling horrible. I got my first patch and everyone was talking to me about it. The art therapy student felt I was being too negative about it because I wouldn't say I was happy and expecting to feel all better in a short time. I got so angry at her, ultimately telling her after she'd been on 40some psych meds and had the severe reactions and non-responses that I'd had, then she could tell me to be positive because the one thing you learn from going through what I have is that you never, ever get excited about a med working until you are both certain it is and will continue to do so, and that you aren't going to be allergic. I wish now I'd been well enough to tell her about lamictal. I was on it during the clinical trial, but it made me throw up constantly so after a year we stopped it. A few years later my med options were very limited, almost down to none, and so I agreed to try it again. I only vomited a few times, and I did respond to it. Gradually, but definitely, and I was on a very, very slow dose increase plan. After 8 weeks the risk of developing the rash is negligible. I finally let myself believe in the med. At week 10 I noticed one Monday that I had a small itchy area on the side of my cheek. I realized eventually it was a tiny rash but never even thought of lamictal. I took that night's dose and woke the next day to 1/4 of my face covered in rash. I saw the dr. that afternoon and by then it was 3/4 of my face. Ultimately 100% of my face, part of my neck, and even my ears were affected. No more lamictal. So much for the safety zone. I was an outlier, as I've been many times before.

Anyway, that fight with her didn't do much for my mood. I talked to the doctor and told him about the night before. He suggested not taking meds that I knew would knock me out. I pointed out that I had no way of knowing that I wasn't allowed to miss group because I was sleeping if my bedtime meds were given early. He agreed and talked to the nurse, who after that refused to give anyone anything scheduled for bedtime early. I also got him to give me more Seroquel to try to help me calm down. What I didn't know to ask for was something to calm me that day; I thought ativan still might work even though it didn't seem to be doing much.

The result of that mistake was very clear a few hours later when I was sitting in my room trying to read or do a puzzle. My room was near the patient phones, so I got to listen to most conversations. There was a man there who essentially was just there for stabilization when he just couldn't take trying to wait for a med to work anymore. It was his first episode, he was miserable but about 8 times better than the really sick 3 of us (we were kind of divided, 3 of us really sick, 1 who I think really belonged on gero-psych with dementia and depression who was in bad shape but who never tried to get well, making me unwilling to classify her with the sickest which may be unfair of me but she was in the wrong place and I resented her because she acted like everyone else should take care of her and I was incredibly sick and cleaning up after she made a huge mess in the shower and having her copy my meal choices (until she realized I wasn't eating and then was on the crazy diet) , and the other 4 people there when I was for some period of the time were more moderately sick.) Anyway, he mentioned that he was feeling better and all I could think was that he came nearly 24 hours after I did and he was getting better and I was feeling only worse and had only just then started my new med. That made me lose it and I cried until I was finally sedated and put to bed.

That day was terrifying. I was not me in any sense of the word and I was so afraid. I knew, and this was part of the needing to be sedated thing, that if I were anywhere else I would have killed myself that day and the only reason I didn't was that I had no access to anything to try. I never expressed that clearly to anyone although I did explain it some, buying myself more time on 15 minute checks than the others had. Even a few days later I was still so afraid of that intense desire to hurt myself that being given a paperclip scared me and I had to throw it into the heating unit to keep it away from myself. Which got put into my records not as "patient so afraid of using anything she can get her hands on to work as hard as possible at killing herself that she is afraid she'll try to open up her veins with a paperclip" but as "patient expresses desire to cut using paperclip", and THAT was the part of the records they chose to send to Dr. Mind. Who was really rather freaked out, as I am not and have never been a cutter. He was concerned enough to give me the records to read so that I could explain.

But all that's over now. 123 days and I'm in remission and am learning what normal is for the first time in my life. It's very odd as I try to re-connect to who I used to be and to try to pick up life where I left off. I don't even know where I left off exactly. At 14, my first diagnosable episode? At 18, when I finally started getting help? At 21, my first significant mania? At 24, the age when things started to crumble? At 26, the age of diagnosis? Not then, I was far too sick by then. I guess I'm probably going back to 24 in a lot of ways, as back then there were still periods of normality. But there are other ways I've never experienced life normally and I can't tell you how weird it is that I am now.

123 days and I'm so far from that traumatized, haunted, scared, and anxious beyond all description waif that shuffled the halls of 6 North that I scarely can believe that was me, that I didn't just read it in a book.

(Truthfully it's already so blurred that I thought that yesterday was 4 months from admission. Turns out I went in on the 26th, not the 27th as I've been sure for a long time now. That's how much I've already forgotten.)

And to add to the happiness, I found out where Dr. Body is going to be working and he is on my insurance. Thank God. From the direction he pointed I was afraid he was going to the HMO-based hospital nearby and my insurance doesn't cover them, which would have meant out-of-network fees because I won't change doctors.

Now I get to request my records be sent from the old place to the new, and you have no idea how happy that makes me. I'm still very angry with that practice about some of their billing practices. A few days ago I got a bill for a co-pay I paid while at the doctor's. I called and told them I wasn't paying twice. Two days later they called me to inform me they still had a $28 bill from 2 years ago. Now clearly I haven't been billed for it, at least not in recent memory, and I have no clue why I'd owe that since I should have just had a co-pay back then, but it's not like I memorized my policy forever then, so I just paid it and told them that their billing practices were precisely why I was leaving them. (not that Dr. Body had anything to do with it, but I have repeatedly called there and asked if I had paid everything and been told I had only to turn around and have them try to deny services on the basis of unpaid bills, or of bills I'd paid that they didn't mark paid in their system, then let me overhear them saying it was their fault but they'd call it a "miscommunication" which it wasn't because nobody let me communicate. I won't miss that).

And this is one long post that I thought would be just a few sentences...

Saturday, February 27, 2010

Waiting (and the best explanation you're likely to get)

I want to have this next talk with Dr. Mind about oh, yesterday. In a perfect world I would try to see him Monday for an extra visit, because the current burden is a lot, but work is so insanely busy that I already know that both Monday and Tuesday are going to involve a lot of hours and a lot of insanely hard work. And that means waiting until my scheduled Thursday appointment because I at least have work trained that I don't do extra that day.

I made the decision that it was time to talk about this stuff. I am ready. Part of my session with Dr. Mind was him telling me at first that I could choose to talk more about it or not. But after we discussed that for a few minutes he said we needed to talk about it more, did I want to bring it up when I was ready or did I want him to initiate it next week. He's to initiate, it's all I could do to do that once. (Pulling out the papers from my purse when he asked what we needed to talk about this week was one of the hardest things I've done in the last few months. I must have looked so unsure because he asked if I would have done that if he hadn't started off that way. I would have, I didn't want that burden any longer, but I can't be that brave again.) Obviously I could say no. Except I don't want to. I think that the reason I've so adamantly stuck to what I told him in the first month I saw him, that he was not allowed to talk about this unless I brought it up, was because I was too sick to think about it. I'm not now, and so this is probably a huge thing I need to do.

What I'm most afraid of is that I will remember more. I want to, in a way, but the memories that I have just sorted out indicate that more memories may contain some scary things, and that things that I have only had these vague memories of that I hoped weren't real are probably real. I don't know what else it's going to be time to remember, and at this point I don't care what I do or don't remember because I know for sure I can handle it. However, it feels like taking the first steps into a very cold ocean. The thing is that while the result of this is good, there is nothing pleasant to be remembered.

I won't be going into details here. Because that seems somewhat unfair when you are all so supportive and I usually follow a fairly open policy when writing here (why I'm fine writing about suicide but not this is a question I'm asking myself), but here's the basics. I was molested from a very young age by my grandfather. I have many memories of this that are unquestionable because I have always remembered them, and it occurred for the entire time he was alive until he developed a number of horrible health problems all at once and died soon after when I was 10. As a very young child I told my parents something about it. A lot of yelling happened and threats, but the ultimate outcome was that I was supposed to never be alone with him, yet continued to spend much of my time at his home, alone with him. At that time, and especially in that place, there just wasn't much information available about such things, and very few resources. There was no way to prosecute on the word of a child my age, and culturally these things may be a bit more accepted in Appalachia. I never talked about it and so nobody else did either. I had a tendency to completely freak out in school during "stranger-danger" education, which was done a lot when I was in grade school, and I'd wind up with a guidance counselor, but I didn't talk about it there either. The reason I would freak out is that it was not until we watched this movie that I remember in intense detail in 4th grade about what to do if someone tried to molest you and it hit me that "that isn't supposed to happen?????that's a BAD SECRET? And I've never told! I'm an awful girl" and from then on all those things did was induce guilt and make me feel sure I was wrong because I kept letting it happen. Ultimately my mother talked to some psychologist who told her if I didn't talk about it that I didn't remember and that she should never mention it to me. I was 22 when I talked about it to her. Even then she has no idea of much of it, and is convinced that it stopped when she found out originally.

The other thing that happened was that my father, who was physically and emotionally abusive, was also a pedophile in his free time. We know of several girls he molested, and mostly I've remembered a lot of things that he did to me that were very inappropriate and definitely sexually abusive, and I've got a store of bits of memories that support the idea (also supported by logic) that he also molested me in some manner. I even had some psychologist, one of the ones I dumped, tell me that more than likely he molested me. Which while likely to be true, she shouldn't really have said because the ultimate result is that no matter what I remember I always wonder if I'm just filling her prophecy or remembering. What I referred to yesterday means I did experience more serious abuse with him than I've previously known.

In the long run this is not earth-shattering news. I actually am very glad that the memories that I put into context yesterday finally are not what I told Dr. Mind "this happened and something is missing that makes it worse but I don't know what", but are more facts. All memory is suspect and memories like this may include me filling things in, but to be honest after having mushed 2 memories together for years it is a lot easier to understand what made it seem wrong. I've developed a pretty good ability to sort what I remember into "definite" and "this memory may not be totally as I recall", and so I'll go into this labeling things accordingly.

Regardless it's not easy. Partly this is because it is so hard for me to to say the words that parts of this involve, and so I'll probably be writing down things from time to time. Partly it's because that feeling that I was wrong because I didn't know to tell never fully goes away. I know better, but it still is there.

On the other hand, it is such a relief to not have this be my burden alone.

Friday, February 26, 2010

I talked. Now I learn more about the truth

Dr. Mind has now been given my list of why things like urologists are bad for me. I gave him a 3 part list that included things that molester 1 did, things molester 2 did, some of the "this is the reason that I ________", and the few facts I did know about consequences and that give some picture of what occurred. (ie mainly things I've learned from gynecological exams that give some picture of a sort to my experiences).

Honestly doing that wasn't that hard. I was ready, and to be honest the thing I thought would be worst, sitting there while he read it (twice or 3 times) was kind of the part that helped the most. Because although he tried to keep it very understated, as I was, I watched him read. And although he was mostly successful at keeping a blank face, I could also see him struggle at points, and I also saw that he was angry. I'm sure he has no clue, but he spent a good portion of that reading time clenching and slightly opening and clenching a partly raised fist. And while I do not need an over-blown, I'm so sorry this happened you poor thing reaction, that was precisely what I needed. Without intending to do it and without saying a word (and with telling me later he was careful to not react in any way that would annoy me or upset me more) he showed me, again, that he cares, enough to be bothered by what I told him. Granted, it's a list that you'd never be able to read without feeling something, but horror wouldn't help me at all and knowing that he was sad and actually struggled to control that for a minute and that he was very angry helped. If he'd said it it wouldn't have helped as much as reading his body language when he was unaware did. He tried to keep me from seeing much reaction by turning his back and trying hard to keep his face without expression, but given that I threw that at him with absolutely no warning whatsoever he didn't succeed 100%. I'm sure he was expecting me to do as I have been for a long time now, just talking about the issues that you face when you meet real life for the first time at my age. I've been avoiding difficult things because I've been luxuriating in feeling good, and because there truly is a lot of adjustment to this. It's an adjustment I'm glad to make, but it's still big; my whole ability to handle life is about 100% different than it was 6 months ago. I've gone from suicidal to scoring in the normal range of psych testing in the last 4 months. It's great, but it is also confusing at times.

Anyway, so my decision to tackle the one and only thing I've told him he never could talk to me about had to have seemed out of the blue. It wasn't and he knows why now, but I'm sure that if he listed 25 things I'd bring up that wouldn't have been close to on the list.

So I did it and it went well. Now, however, I'm in the strange position of talking about it making a couple memories that weren't clear before sort themselves out into something that makes more sense. Since I didn't talk to him about these things in any way that he could have put an idea in my head, what I now remember (which also makes total sense in context now that I finally realized I'd been combining 2 events into one that couldn't possibly have logistically occurred). I have a much more complete memory suddenly of something that has bothered me for years as something I had only pieces of, and while it doesn't answer the ultimate question of "what happened specifically" it answers a lot.

So, that's my big stress. It's making me want to sleep a lot. So, good-night.

Wednesday, February 24, 2010


I talked to Dr.Body today. He called in some antibiotics for me and called to thank me for telling him about the awful urologist. Apparently he doesn't know her, just knew she was the only female locally in that speciality, and he didn't know much about her. However, I was correct (as I knew I was because the whole point of him making the appt etc was to make sure that I was treated sensitively) that much of the 2 pages he had written out for her very specifically said that I had been sexually traumatized and could only deal with this exam if given with significant sedation. So she had no business arguing with me over it. And now she not only lost me, she probably lost a potential referral source because he said (and he's right) that what happened there is just not right. The part where I'll have to pay some of her fees because of an insurance glitch also isn't right since she did NOTHING but argue with me, that whatever. Medical bills just run together at this point.

Hopefully the antibiotics help. I'm so very tired and it hurts to cough or swallow. I've had a busy week and I just want to get done early the next 2 days and sleep.

And tomorrow is "tell all" day with Dr. Mind. Oddly I'm really not all that nervous. I don't know how much talking there is going to be, it could be that the info will be enough. Not likely, but I can hope.

Being sick has wiped my appetite out further. Now all I want is cinnamon toast, tea, and occasionally yogurt. At least yogurt is on the list since I'm on a strong antibiotic for a week.

Falling asleep. More tomorrow.

Tuesday, February 23, 2010

Post 1001: Whining

I'm sick. I'm not as sick as I'll probably get, as this cold/influenza (what I think it really is) takes a few days to build up. But I do not feel good. And I'm so, so, so tired from it. I am achy and had a low temp I think, and all I wanted was to get my patients seen and go home on time. Instead I did my 2 evals at one building, drove to the other, and found that my assistant had changed the schedule because she thought I might get there too late to see these people (not that you can't reach me by cell or text easily or anything), and so she just changed things. And the way she changed things meant that she scheduled me for every single patient to be one on one. Which added to there being 3 evals in there and that as per usual I had more than hours of patient care plus 45 minutes of travel time in the day, plus these extra papers to fill out, meant that I worked 10.5 hours. Now, she is sicker than I am. But she also had yesterday off and she doesn't work overtime every.single.day. I am not complaining, I need the $, but I also need a break. I'm exhausted and getting sick and my schedule is not going to let me take a day off sick until about Friday no matter how lousy I feel, and if I take that off then I don't get paid and I'll just make Monday miserable for myself. Plus, if I worked that long today i want paid for it.

I hate days like this. I wind up short-changing people, which isn't fair to them but I have to get time to go home somehow. (There are all these rules about who can be doubled up).

Mainly though I'm frustrated because while I know my assistant doesn't feel good, neither do I, and I don't screw with her schedule, ever. And she doesn't want overtime so she never, ever works it, while I get little to no choice.

And I'm so achy. It hurts to cough, and I'm not even really into that stage yet. I'm also fighting with losing my voice. Which would be a problem.

And I ordered stuff to finish this big thing I've been making my sister and somehow the order didn't go through, and that's frustrating because now it's unlikely to be done this weekend.

I'm just so worn out. I'm probably going to request antibiotics tomorrow from Dr. Body, because urgent care is always a disaster with these things, he knows that if I get a cold I'll soon have a sinus infection because of my med restrictions, and he's changing practices next week so I don't have a lot of chance to do anything else. I just do not have time to go see him. I couldn't manage it without having to work nightmare hours and I'm already doing that.

Also, there's a big difference between working 42-43 hours and 47-4 hours. Just an observation. And when I've said overtime is ok I was thinking more in the 42-43 hour range........

Sorry for the grumbling. Nobody to listen here. And talking doesn't feel so great. Typing doesn't hurt.

Sunday, February 21, 2010

One thousand posts, One Million Thoughts

This is post 1000. Technically I reached that milestone several days ago, as there have been numerous posts I have deleted, but for the posts that haven't been banished, this is number 1000.

Four years and one month ago I got serious. I'd set up the blog a few months before I actually wrote on it because it took a while to get the courage. I started out with all these ideas about what could go on it, and really planned to limit what I told of my personal life. Instead, I found that writing about my actual experiences and sharing that with others who stumbled into this for various reasons was healing. During the first 9 months I was writing this my life fell apart in one of the worst explosions I've experienced, and was slowly glued back together as my relationship with Dr. Mind grew. Those months were when I finally had to face that I was doing better than might be expected, but that I still was very ill with precisely what one would expect of someone with my disorder. During those months I had to learn to let go of the idea I could control the entire thing, because I couldn't. I had to learn to let the Drs. Mind and Brain be in control. And truthfully, that is what this story is: learning to give up control then re-learning how to manage my own life with the illness included. Prior to that I had been essentially trying to live as Don Quixote, tilting at windmills without asking why what I was doing wasn't really working. More simply, I had to learn to believe I could live differently and well. Then I had to learn how to do it.

That theme has been repeated over and over as illness has thrown me to the floor over and over again. Each time I've had to return to letting my safe people guide me through the storm, and then restoring a sense of control to my life. Certainly that has been the theme of the last months, as I first had to choose illness that left me clinging desperately to Dr. Mind, then hope as the new med started to work, and now I'm moving on to starting to trust a life I thought I had no hope of living. It's weird when I think about how now sometimes the greatest frustration I have in a day is finding foods I can and will eat, when mere months ago the smallest frustration I had was that I was afraid of all the ways my life was spiraling out of control despite my having made the decision for that to happen. (I think I believed that if I decided to do it that it would be easy. I was very wrong).

This blog has been my best friend though many of these 49 months. There aren't many places I know of that I can go and talk for hours in great detail about every single minute of every single day I spent in a relatively long stay psych unit and nobody will judge me. The people in my life who know where I was and why mainly refuse to acknowledge it, so that it is just this uncomfortable zone I don't mind talking about but everyone else does. I have told every detail pretty much of that time, I have been explicit about life in a psych unit and the time leading up to it, and the recovery from it, right down to and including my taking large amounts of rather controversial drugs (ie taking 2 benzos together, high dose antipsychotics, etc) and I have not had one negative comment. In fact, in all these posts I believe there have been 3 or 4 comments that have been hurtful, and those came from the same 2 people. Considering I write nearly daily about things that our society prefers to ignore, I find you readers amazing.

I've come a long way from "keep it all hidden" Just Me, to "the only blog I can find with daily posts from the psych ward", much less the only blog I can find with the details I've given about it, and here's my real name and an idea where I live. And I haven't come that far because of me. I've come that far because of all of you, who have let me be who I am and have encouraged me beyond my ability to even comprehend. I find it interesting that we live in a society where mental illness is to be hidden, and yet this blog has gained the most interest since I took down all barriers between my experiences and my writing. I still am "Just Me", but I'm also Jen, the mentally ill occupational therapist, and I like that they are now the same person.

Thank you so much. Each of you, whether you speak up much or not, has let me grow and become a better person because you've let me relax and live a life as I am, not as who I think I'm supposed to be.

I can't wait to see where we are in another thousand posts.

I did it

Well, at least part one. I have a written list for Dr. Mind of what happened to me and some notes about this. It's.......clinical. But that's ok, he'll know. And when he can ask questions I can say more.

I wish I had the things I wrote in college. For months I wrote in detail about my memories. I didn't talk much in counseling then. I couldn't say what needed to be said, so I spent hours writing and then he spent a decent part of the session reading and we'd talk about what I wrote. With Dr. Mind I have, until now, forced myself to use words and talk, resulting in my reaching the end of a session about a year ago and sobbing "I've never SAID that before". This I just can't say and I'm not going to go through making myself when I cannot see a value in that. So we'll re-visit the old way.

Part of the trick is that I've worked hard to put away memories. So I'm missing things that might be important. If I only had what I wrote so many years ago I would have more memories. But I threw that away long ago, and doing so was valuable. And he doesn't need to know everything.

The plan is to give it to him in a sealed envelope. I'll explain what it is and why. And that he can ask questions but I can't just verbally volunteer this, but that I know it's time for this to be important if I'm going to make it through this urological thing. (I found a urologist who doubles as an ob-gyn. I'm going to be seriously considering her.)

And now I'm impatiently waiting for my sheets to dry. I did nothing all weekend and I just want more sleep. It's crazy how tired I've been, but I've been working way too much and combining that with driving zillions of hours in the snow. It's not been an easy few week. But, just 3 weeks and I'll be on vacation for a few days! (YAY)

Did it again

Way back in the years I worked in psych facilities, I noticed that a lot of my patients on anti-psychotics had extremely high pain tolerances. I didn't really know if that was from meds or from the disorders and from what many of them had undergone in the name of "treatment" prior to the development of more humane medications. At that point I hadn't spent more than about 3 months on an anti-psychotic thanks to bad reactions.

About 18 months ago I had 2 fillings done. They were replacements of old fillings, one of which had been done wrong and which had a very deep cavity around it. My dentist told me from the outset that this tooth might need a root canal eventually. I put up with it aching for 2 weeks since I knew it was a deep filling. But finally I went back because the pain was worsening. It was just a constant ache, it wasn't keeping me up at night, I could stand it, but it ached. After an exam he told me that he thought it was ok but because the chances of it needing a root canal eventually were high that I could choose to get it over with if I wanted. I said yes. When he opened the tooth up it was horribly infected. I was within probably a day of sepsis. It took something like an hour for him to clean it out, and he was having to flush it was lidocaine because the nerve root itself was infected. When he finished he talked to me for a while about my having just shown that I have an extremely high pain tolerance because I should have been in desperate pain and I called it an "ache". He then mentioned his observation that people on anti-psychotics tend to have higher pain tolerances. Bingo. Theory confirmed.
So one of the side effects of my ankle injury is that my other foot also has tendonitis. It is the direct result of standing oddly for weeks. At this point it is much more painful. So I ordered some treatment things, one of which is a strap on support for my arch. It felt so good that I didn't notice any problems except that I had to loosen my shoestrings toward the end of the day because my foot had swollen a bit. When Friday finally ended I realized that I really was a bit sore, so I removed the arch support. When I did I discovered a huge blister on the top of my foot, possibly the largest blister I have ever had.

One day I'll learn to pay attention to these things.....

Saturday, February 20, 2010

What you don't want in a urologist/Or, the next hard thing

For the last 4 years I have had blood in my urine. Really I've had it longer than that, as urine tests from grad school show it. I've known I needed a test called a cystoscopy, which inserts a camera through the urethra into the bladder. I have refused on the basis of this being far too traumatic for me after the sexual abuse. They need to be sure I do not have a tumor or anything in my bladder. For a long But it has gotten worse in the last year or so, and when I was so very sick and dehydrated in November I had to give a urine specimen that was frightening looking. It was full of chunks of blood and clots, and if it had been something I saw in a catheter bag I would have been searching for a nurse ASAP. At first we all assumed that I'd test positive for a UTI and the pain I had could be explained, but no, it was just blood. When I saw Dr. Body we talked about and the fact that 36 hours later I was still peeing clots and large amounts of blood. He basically told me that there was nothing he could do, nothing worth even doing a urine specimen for him, if I wouldn't have the cystoscopy because there was no way to know what is wrong without that.

I thought a lot about it, and the next time I saw him, a whole 2 weeks later thanks to my ankle sprain, I told him that if he found someone who would knock me out and make sure I do not remember anything from the pre-op room until I leave the hospital I would do it. He told me something about that being possible and that there was only one female urologist in the area. I should have realized that this was not a rousing support of this woman or her ability to be helpful to me in the emotional sense.

So I was already a bit put out by this practice when I was sent to gather test results from 2 hospitals in a snow storm with 24 hours notice they were needed. And then Wednesday I saw her. She was horrid. She never bothered to even introduce herself. She showed me my cyst, never said anything about what it might be or what importance it might have, asked what the nephrologist said ("see a urologist") and then sort of scanned the 2 pages my doctor had written out. But she didn't care, and so she immediately began to try to argue me into doing it without sedation. She never asked about my experiences or what I needed or why. Then she made a big fuss about doing it sedated if I INSISTED, since "30 year olds do get bladder cancer". Thanks a lot. I tried to talk to her about meds and she blew me off, telling me I had to talk to the anesthesiologist, but nobody would explain how or when that would occur. Essentially she totally refused to let me have any control over the situation whatsoever and she lacked any and all compassion. She also never bothered to examine me or explain the procedure whatsoever. So yesterday I mailed 2 letters. One was to Dr. Body telling him that I did NOT chicken out but that I will be getting a referral through Dr. Brain to someone at Cleveland Clinic where who is compassionate and used to psych patients. ( I feel pretty certain this doctor was very uncomfortable with that. Many are not. I just don't return to them.) Dr. Brain keeps an awareness of other specialists who are better with psychiatric patients and who bother to consult her about her patients and things like that. There are only 4 women choices there, but she'll find someone outside the Clinic if needed. The other was to the urology practice, saying that I felt that Dr. Bladder was unable to meet my unusual needs at this time.

But then I talked to Dr. Mind about this. And I realized through our conversation that it is time for him to know even more about my past. It is time for Dr. Mind to know more specifically what the sexual abuse I survived included, because it's going to be hard for him to help me through this without that. I think he's been subtly trying to tell me that for 2 weeks and this week the subtly actually sunk in. But I cannot do this out loud. I can't speak those words. So tonight or tomorrow I'm going to be making a list. A list that is undoubtedly going to feel way too short, but clinical terms leave out so much. But it's clinical or not at all, and if he has the list and asks questions I can talk more. But what an ugly list. And what fun to dig through painful memories for ways to describe it all.

I can't wait to have this over.

Friday, February 19, 2010


During the years I was constantly extremely ill I really screwed up my credit score. Making payments was just too hard to keep up with. So I didn't. I also over the last several years have been forced to put medical bills on credit cards at times, which means my credit card debt is way too high, especially combined with student loans. So my credit score has been bad.

I've been working very hard over the last year and a half to fix it. Today I ran my free annual credit thing and then got credit scores. And I'm finally up to an average score, and I'm in the mid-range for that. Two years ago I was at the lower end of poor, headed toward extremely poor. This is very important since I need to buy a new car in the next few years and need decent credit. If I can just keep doing well I will be up to a good within the next year, I hope. My credit card debt is about to lower by a big chunk as my furnace is on there, waiting for taxes and my tax $ should come today.

So now I have one less thing to really obsess about. :)

Monday, February 15, 2010

I surrender

I've kept up with the snow shoveling as best as I could for the last months. Today we got another storm, and apparently another is coming at the weekend and I reached a point that I can't manage it safely. there's too much, there's nowhere to put it, and it's unsafe for me to be trying.

Tomorrow I hire a snow removal company. I'm going to pay them extra if I have to to shovel out a walkway as well, something better than my current little path.

I'm also planning to move north, as the last 3 or 4 storms have been worse in the south. Tired of the south.......

Sunday, February 14, 2010

Crediting myself

Yesterday I wrote something that isn't really true. I wrote that I don't deserve much credit for what has happened to me, because mainly I was along for the ride.

There is degree to which that's true. But it's not true to not say I'm immensely proud of myself. In the last 18 months since I started responding to meds I have done some extremely hard work in therapy. I have spoken words aloud that I've never spoken, just written. I have faced fears and hurts and gotten stronger each time I did so. I've talked about the hardest parts of my life. I've gotten comfortable enough that I'm even at least able to answer specific questions about the sexual abuse, even if I can't just talk about what precisely happened without that impetus. I've come to accept that I have limitations, some from illness, some from what happened, and I'm finally speaking out when I reach those limits. Wednesday I see a urologist about a test I've needed done for 4 years. I've refused because any region the urologist looks at is a region that I can't tolerate having examined. But now I was able to say "I can't do this test the normal way because of my past. However, promise me that I will have NO memory of it and I'll do it" and suddenly it's being set up rapidly with total agreement that this is possible.

I've had to make some hard decisions over the course of the last 10 years. I've had to give up jobs I loved, give up full-time work for a long time, start seeing psychiatrists and therapists, decide a clinical trial was my best option for hope, decide to accept what was wrong with me, decide to talk about things that were so painful they caused tears from the moment the words started until the end of the session and then immediately upon starting the next one. Even before that I've made some hard decisions. I decided that my father was too poisonous to have a relationship with. I decided that I needed time far from my family and that I would move 10 hours away for grad school to a state I'd never been in. I decided to move back when I was done. I decided to cut off friendships that were hurting me, including one that essentially had become abusive, making me feel terrible about myself and my illness, even though ending these relationships essentially meant having few ties and a limited support system.

But what I know I deserve credit for, what may be my biggest accomplishment in life in some ways, is what I did this summer/fall. I accepted without fighting that my antidepressant wasn't effective anymore and a dose I could manage, and that this meant that within months I would be seriously ill. I knew what accepting that meant and I decided to do it. And I survived several weeks of anxiety hoping against hope Dr. Brain was going to tell me I'd be fine while knowing what was coming. I survived the point where she asked "well, how are you doing?" and I had to answer "we have a problem, and outline the entire "70 mgs doesn't work, 80 mgs means I don't poop no matter how much other meds I take and it only sort of works and 90 mgs makes me manic, and since we're creating those doses I know perfectly well that there is no other possible way to take this stuff, and SAD season is approaching and I know I can't go into it with no options with my antidepressant, and I know that this means switching to Emsam, so let's do it". I had truly thought she's let me go off the other med fairly cold turkey, so being told to wean was really tough. And the wean itself, well, that was the hardest thing I've ever stuck to doing. Deciding also (Ok, more like accepting that she wasn't really giving me a choice) about the hospital was incredibly hard because I have had hospital phobia for many years. I know longer remember what I felt like during those dreadful weeks in October. My memory of that time has gotten pretty vague. I know though the courage it took to say to Dr. Mind that I needed to be in the hospital, ASAP. I know what it felt like when my email to tell Dr. Brain, who had been oddly and uncharacteristically unhelpful all month, that I needed to go to the hospital within the week was met by an out of office auto-reply. I know how hard waiting to hear if they would accept me was, especially when it took longer than usual. That weekend I had to dump out a bottle of my most dangerous pills, and I wasn't totally sure that I wouldn't be dumping more as I went. I will never forget how much courage it took that sunny, gorgeous fall day of Oct. 27 to put my suitcases in the car and drive to Cleveland. It takes about 2 1/2 hours to get to where I was hospitalized, and I kept having stop to pee because I was nervous. That kept making my GPS agitated because I was off-track. I also took a wrong turn onto the wrong interstate because I listened too carefully to the GPS and not to my own brain which makes that part of the drive ever single month. I remember walking into the hospital, going to the bathroom, saying a brief prayer and then finding registration. I know the courage it took to sign that green voluntary commitment form that indicated that if I chose to leave I had to stay 3 days, which I knew meant that I was agreeing the dr. could get the court to force me to stay. There was one moment after I had signed that form that I wanted nothing but to leave and I had just said I couldn't. Then there was the eternally long admission process, and then the crying I did for most the rest of that day. There was the anger at not seeing a doctor for 24 hours and then having to wait another 24 hours before anything could be done. There was the point during that week when I had to go down the hall and find a nurse and say "I can't stop crying". There was the point where I had to throw away into the radiator a simple paperclip out of fear I'd use it to hurt myself. There were many, many rough moments that week. And there was the next week, when I had no psychiatric follow-up and had to have my family doctor take on responsibility for things that weren't his expertise. And the week after that when I went back to work and had to start taking valium on top of my other 2 drugs and high dose of Seroquel just so I could survive the terrible anxiety.

And now I am in a whole other place, and it makes it easy to forget how hard it was to make those decisions to care for myself. It's true I didn't do it alone, and if I didn't have Dr. Mind forcing me to face new things constantly I probably would have had this happen in a whole other way, a way that didn't leave me feeling empowered and finally in control of my health.

So I was wrong yesterday. I did a lot to make this happen. The more that the memories blur of those awful months the harder it is to remember that because soon I'll remember nothing of the pain. I know God designs us that way and nothing makes me more grateful, but I do deserve to be proud of myself. And I am, in many ways for the first time since before I got sick.

Saturday, February 13, 2010

Being all better can be FUN! And it can make me cry

I love seeing my doctors lately. Everyone is so pleased at how well I am doing, how I am amazingly functioning at a normal level and actually find pleasurable activities to do. The sewing thing is turning out to not just be fun, I'm actually pretty darn good at it. My grandma was amazing and she taught me a lot, but that was many years ago. I seem to have inherited her gift. (And as a total aside, I'm so excited because I got stuff to make overalls for the baby today. I LOVE itty bitty babies in overalls!)

The thing that is funny is that everyone gives someone else the credit. I get a good deal, which I think is ridiculous because the only thing I did was make it through while other people came up with what would help and gave me the support I needed to make it. But Dr. Mind credits Dr. Body and Dr. Body today told me that she referred someone to Dr. Mind, telling them how incredible he has been for me and what an awesome relationship we have developed, and that if they couldn't see him don't go to anyone else in the practice, call her for another referral. I can't wait to tell him that part, I think it's pretty neat. She used to be the consulting psychiatrist for that practice, that's how I found her and how they know one another. So she knows several of the therapists and she basically just said he's above and beyond the best.

I also love getting to watch people's faces when I saw I'm feeling the best I've ever felt. Dr. Body and Dr. Brain both had the same look of amazement this week when told. Dr. Mind seems to see progress a few days before I do so I see less because I'm reporting less, but even he can't quit grinning talking about how good I am, which is true for everyone involved.

I knew that they were all highly invested in me. I know from what I do how much you get out of a patient succeeding after you go 10 extra miles for them. They've gone about 100 extra miles for me, and I love watching them get actual pay-off, after years of just glueing me together the best they could and believing I could still recover.

This is making me cry. It's actually really emotional for me still to be able to say "I'm well." I never, ever thought I would get to say that 3 times in one week to 3 doctors who have all worked so hard to help me. I never thought that I could enjoy life so much. Only 2 years ago, when I was first diagnosed with diabetes insipidus, I made a decision without even considering that I would tax my kidneys some if that's what it took to be on lithium, because I didn't really care if my kidneys ran out early and I didn't get to live to be 90. I didn't want to. I can't say that a long life is my goal yet, and in many situations I wouldn't opt for certain treatments, but I also wouldn't choose immediately to die thinking that finally I had a way out if I developed some illness. Two years ago I would have told you I wouldn't ever treat cancer or anything of the sort because I didn't want to go on hurting. Obviously life still has plenty of challenges unique to my situation, but I no longer don't care if I have a life.

I've got to sleep. I'm exhausted. I slept in until about 5 because I made myself, then worked on making a list of things to pick up today, made a pattern for something I'm making my sister from looking at a commercial item, washed dishes, did a load of laundry, etc. and then I had to get my car repaired and sit for nearly 2 hours, then drive to Dr. Brain's office. She was running way late, so I sat for another hour there. Then I drove back to the city where I work, saw a couple patients, then went and bought a bunch of fabric stuff because of a big sale. Then I continued my quest for organic cotton that didn't cost a zillion dollars for my sister's thing, then I tried to buy sneakers because my feet hurt horribly, and then finally found what I needed for my sister's project at Target. Then I drove an hour home, and took meds and am waiting to get sleepy. IN about 30 minutes I'm taking some valium too, I'm really wound up tonight.

Anyway, more tomorrow.

Wednesday, February 10, 2010

Removing the veil of secrecy: Meet the real me. (Or, for Gage all the other kids)

This is a repost because I forgot to change the post time from the original draft, and i want to be sure people see this.

As most of you know, I have a friend named Julia. Julia was the person who wrote on this blog for me while I was too sick to do it in the hospital. Julia is the mother of Gage and Quinn. Both of these children have undergone kidney transplants, Quinn's only months ago (and Quinn's transplant story made the Today Show.)

One of the things that has attracted me to Julia and to coming out of my usual very private shell with her has been that Gage reminds me so much of myself as a child. Gage has some mental health issues that make parts of his childhood all to familiar to me. We share PTSD and display it similarly, although I've of course moved on to more adult expressions. So many times though stories about Gage resonate with me, and make me see that Gage has something that could have made such a huge difference with me: parents who do something. I fell through cracks as a kid. My mother was too busy dealing with her own problems with my abusive father to really see that there were problems, certainly not that there were big ones, and besides, everything I did was explained away by my messed up home life. It would have been odd if I was not depressed.

So I did not get help for my issues until a few months before I turned 19. I was basically failing college, partly because my education did not prepare me adequately to compete against students who had planetariums in their schools while my school didn't even have electric microscopes. The other reason, the main reason, was that tests were making me panic and then I failed them. I went into counseling thinking I could learn to relax with tests, move on, and never go back. The initial form though asked about history of counseling and I had to write about CPS working with me. Which opened up lots of questions about my past. I kept insisting that the past was over, and the therapist kept insisting just because I said it was over didn't mean that it didn't hurt. So we met for the next 6 months or so, fighting huge wars to get me to trust him, although I didn't see it as such exactly. Eventually I did learn to trust him and began to learn to live with the obstacles of my past, and eventually with the beginning of what was going to be my mental illness of choice, recurrent major depression. Which was oh-so-wrong, but that's another story.

Recently Gage had to be hospitalized in a psych unit. And people who read about it on Julia's blog used it to hurt him. Adults actually deliberately hurt a child because of an illness. When I first read this, I wrote to Julia that I'd highly recommend blogging about this part of Gage more anonymously, because of the many, many bad things that have happened to me whenever I've not been anonymous.

And then I started thinking. I'm an adult. I live with a debilitating illness, but I do it well. I manage my symptoms, I am in control of myself, and I have built a very careful structure around myself to support me when I can't. I've done things in the last year that I'm still amazed by. Taking myself off (with the doctor's help) of my not-working-great antidepressant and signing myself into the hospital to trial the unknown was the bravest thing I've ever done, quite possibly will do. And I'm very proud of myself for having done it. It was the scariest risk I've ever taken with my health and the pay-off is a woman who is finally, for the first time ever, NORMAL. But I live a huge part of my life is secrecy, and what's more, in terror that someone will find out. Someone at work today noticed my huge pupils from meds. I can't do a thing about that and it does make me look like I'm on drugs. They do at least know I'm on an MAOI, so that explains it, sort of. But I'm so tired of partial explanations.

I realized after what I wrote to Julia that I've resigned myself to living this secret life. It's not the best thing, because it is beneficial to have people who know and who can support you. But for so long I've refused to think about what a world where I could be me, illness and all, would be like. But then I thought about it, and I realized that the consequences are not just for me. If I keep this mental illness of mine secret, what am I doing for all of those that follow me? That world of openness can exist, but it has to start somewhere. If I don't help people see that mental illness isn't scary and dangerous then how can I expect that Gage will live in a word that is a bit different when he is my age? I live like this because after they quit shutting everyone with serious mental illness up for life, most people remained silent. They (and I) have for decades put on a mask for the public, pretending to laugh at jokes about psych meds, "craziness", mental illness, "retarded", etc., when those things sting every time.

I picked the name "Just Me" years ago because it's something I find myself saying over and over. I knock on doors, and when the patient knows me I say "hey, it's just me. Ready for some therapy?". I call myself that hundreds of times per day.

But today it is time you know me as a person. I am Jen. I am 34. I live in the northern part of southeast Ohio, which is one of those divisions that is more cultural than geographic. I grew up in definite southeast Ohio, so close to West Virginia that I was born there because it was the nearest hospital, in a tiny town that had mainly been employed by coal mines until I was 2 and the mines were shut down. Consequently I grew up in a very poverty-stricken area. Even though my parents both had jobs we had little money, I know now due to my father's bipolar spending habits. After high school I went to college in Pennsylvania, and I spent my summers at a camp in central PA, one of my favorite places on earth to this day. I spent my happiest months of my life there, mainly free of illness and when it was present it wasn't devastating. I then moved to Michigan for my master's degree, then back to Ohio to find work. I've worked throughout eastern Ohio during my career.

Because of some weird twists to my care and allowances that are made for me, I won't say precisely where I am treated. However, since I was really diagnosed I've been treated mainly at Case Western Reserve University and the Cleveland Clinic. I've been spoiled to have access to such incredible doctors at both institutions.

I live, as described before, in a very tiny (1300 people) town in the midst of nowhere. I work for a company based far away, and have never even met a single person from my company and probably never will. I own a small home which I bought in 2003 while interest rates were nice and low. I have 2 cats, Anna who is 15 and a spoiled brat, and Noah, who is 7, the funniest cat I have ever encountered. Noah is one of 2 cats I adopted together in 2002, and the adoption of 2 random cats was a factor in my diagnosis. The other one died a year ago.

I have a very scattered family. I have 2 brothers and a sister. One brother is a half-brother and I haven't seen him since he was 4, 9 years ago. One of my greatest hopes is that when he turns 18 in a few more years he'll seek me out. I work miles from where he lives and I often wonder when I'm in the city if I'd recognize him if I saw him. I live close to my mother. I haven't seen, spoken to, nor heard from my father in 12 years. My extended family is extremely scattered, and while a core group has kept in touch, others I haven't seen nor heard from in almost 25 years. Most of my extended family is on my father's side, but they all keep in touch with my mother and with us, rather than him. My father is truly horrible person. It's sad because meds would make him so much less awful but he'd never admit to having a problem. I grew up extremely close to my maternal grandmother. I think in some ways I was the daughter she wanted desperately and gave birth to, only to lose her a few days later. I still miss her every day and she's been gone for 16 years now.

What else? I'm not going to post a real picture of me, although I do plan to change the picture with my profile soon because I'm sick of it. You did get to see me from the neck down in my new pajamas last week I believe. I'm 5'3", probably most aptly described as a little chubby now, which is hard to even imagine since I've gone from a size 20-22 to a size 12 in a year. I have brown curly hair that is just below my shoulders. I wear glasses and a left ankle brace that mainly looks like a mismatched sock.

I am, and will remain, Just Me, but now you know who I am as well. Hopefully eventually my article will tell the professional world about me. That scares me slightly, more because my employer doesn't want my contracts to know anything about my illness (they only know I have depression themselves, but they don't want the contracts to stress abve about it or something), but I have a right to be me, and it's time to take that back.

Again, I am Jen. hello.

(This post will disappear eventually; I don't want my family finding this blog).

To Emilija (and any other mentally ill OT/healthcare professional)

Hey, I can't get my stupid email to work. Please email me at masterofirony@att.net when you have a chance. You may be a great help with this article I'm writing.

(And also, I'm not really out at work. They know about the MAOI, I explained that when I was starting to act crazy as I went off the other AD, and also they know because of the food restrictions. I'm pretty paranoid about eating something hidden in some food, so they've gotten used to my obsessive NO CHEESE on everything I order out, etc.) But they have no idea I'm bipolar or anything beyond depression and I think that I take anxiety meds sometimes, which they know mainly because they see me since I usually remember at lunch and I think I've made a crack about them. So they don't REALLY know whether that is true or not.) What I am willing to do is to write this article, possibly for Advance since it's not very researchy, and I'm not going to give much info beyond my name, and there are literally hundreds or thousands of people with my name. What I'd like from you (and any other mentally ill OT) is just stories about stigma you have encountered.

Some of the examples from my life I may include are:

  • The nurse who held up a Geodon packet and tried to impress me about how it can cause Q-wave disruption with instant cardiac death, kind of laughing at how he could just give this out. Which wasn't so funny since I'd come off it thanks to extra-pyramidal sx just weeks ago.
  • The contract I lost because my COTA told everyone I was psychotic and in the hospital for 6 weeks, when really I was TAKING an anti-psychotic that gave me a reaction that landed me in the hospital for 6 hours in the ER. From then on every time the DON didn't like something I did/suggested she'd say in staff meetings "what does she know, she's CRAZY"
  • That same contract was partially lost because a family complained that I looked like I was on drugs because of my dilated pupils and flat affect, side effects of my meds. I had facial masking on Geodon before the EPS and they decided I was on drugs and went to the administrator. He asked my supervisor, she explained it was prescription and it never came up again until they didn't want me. Nobody even offered a drug test.
  • The numerous times I've been on disability and everyone has totally ignored it, avoided the subject, never even asked if I was feeling better, while I've contributed massive amounts of money for other people's flowers, support checks, etc.
  • The phlebotomist in the hospital who drew my blood then walked past the sink into the bathroom, came out and commented on how she must be "crazy". To a committed psych patient.
  • The refusal of a job to take my word for it that I wasn't able to walk between buildings in the heat, and then the reluctance to listen to my doctor's orders as such.
  • The constant jokes about how "crazy" mentally ill patients are, the calling them "psycho" and other names constantly.
  • The recently overheard groan of an LPN "Uh0h, she's on Seroquel and Depakote. You know when you see that that you've got a major mess to deal with". I was on those meds together 6 months ago.
I don't know what else, and I'm sure not all of that will make the cut. But other people's experiences will certainly make it a better article.

Monday, February 08, 2010

Especially for my OT friends

I've been an OT for 9 years now. I figure I've wracked up thousands of hours in bathrooms and changing horrible Depends products. I've encountered every body fluid out there, and had numerous ones on me at once. I've seen advanced, terminal gangrene. I've seen toes days before they fell off. I've stuck my hands into all kinds of horrid things accidentally. I've been puked on, drooled on, peed on, pooped on, spit upon, you name it. I've calmly handled blood in places it shouldn't be. (Did that this morning). I've looked directly into an open incision status post a Dupetreyen's release (that was my first day of my level II) and viewed tendons and bones in action. I've been there when people were suctioned and hideous things came up. I've done the Heimlich and seen gross things come up. I've seen people die, one via choking to death.

But today was the grossest thing EVER. I was evaluating this woman's wheelchair positioning, and when I moved her leg I saw a bit of white. I thought "hmm, food? they just finished eating." and then "probably paper towel". I picked it up and absently went to throw it out. But there wasn't a trash can nearby and I looked a little more closely. I picked up, with my bare fingers, a piece of the internal lining of an Attends. That part turns to a gel-like substance when wet and then dries back into paper when not surrounded by more gel. Sometimes when we change Attends we rip them and this stuff comes out, although generally the dry ones tear, not the wet ones. Somehow this had fallen under her foot and dried. And so I picked up one big, icky, piece of crystallized pee. And carried it around until I could throw it away.

That was not the highlight of my day.

Sunday, February 07, 2010

Snow 1, Just Me 0

So shortly after my last post the power went out. And when it did it did so completely. Even the streetlights were out. I waited several hours (ok, I fell asleep) and then went into the next town for pizza and supplies, and to try to charge my cell phone in the car. I went to a couple of stores trying to find the paraffin stuff for my lamps (I think it's paraffin?). I didn't find it, but I did find an icy patch that I fell on. Hard. On the same side as my poor ankle. Which seems ok but jarred. I'm probably going to get it checked tomorrow regardless as it is a bit sore and it just shouldn't be. I ignored a minor ankle injury to get where I am now, so this one I won't. Mainly thought I took the fall on my hands and the side of my knee (naturally the one that already is torn up so that it has no protective cartilage.

I got home and at least the power is on. But then I opened my pizza and they put pepperoni on one. Pepperoni, a food that I can't have because of the MAOI. I pulled it off but can still taste it so I assume there's pepperoni juice contaminating it, so that pizza isn't being eaten.

Michal, your comments talked me down from throwing a huge pity party. My email won't let me answer you, but I will. Thank you. And on behalf of anyone who has spent time in a psych unit, thank you for your party. I was there for Halloween, a rather meaningless day, except that it was so odd to have it not be acknowledged in any way. And weekends on a psych unit are deadly boring. Boring beyond all belief or description... Boring enough I will never agree to go on a Friday unless I'm in danger.

Now, I suppose I should ice my ankle. Blagh.


I've lived in this house 7 1/2 years. That's a lot of snowstorms. I don't think I have ever had to shovel like I just did though. I had to dig my tires out. I had to shovel the (covered) porch, from the door on out. It took an hour and I didn't even do the driveway. Just the little bit behind the car to get out. I couldn't get into the driveway the other night and I'll not be attempting it until this melts. I would guess about 14" out there, and it's all heavy, wet snow.

I also have never seen this happen. Because my town is tiny and in the far corner of the county, it is low priority for any heavy plowing the city can't do, electrical work, etc. As I've said before, I live in Appalachia, and that of course means hills. My actual town is in a valley, very unusual around here, but there are huge hills on either side. My house is at the bottom of one, maybe 50" up it. My house also is located on a loop that goes up the hill behind me and down. I rarely go around the circle because of the angle I come out of my driveway, but right now that angle is backward. After I shoveled and cleaned the 8-10" of snow off the car (and remember that I got home 8-10" into this thing) I decided to drive it around the circle to be sure I could get in and out easily tomorrow morning. I got halfway up the circle. At that point the village put up barriers. I don't know if their plows wouldn't make it the rest of the way up, if something is wrong back in there, or what, but it honestly looks like they got there and gave up. I wonder what those people are going to do in the morning??????

I also learned an important thing: If you know your sweats are too big, for all the is good and pure in life, put on another of your many pairs from your hospitalization, because too big sweats will continuously fall off while you shovel.

I'm going to be sore tomorrow........which is too bad since I start Curves on Tuesday..........

Saturday, February 06, 2010

One week

Next week I go to see Dr. Brain. I have seen her for many years, and have never dreaded the appointments. I don't always look forward to them, they take a full day, can be stressful (ie, yep, it's time for a hospital stay; no, that med isn't working; you can't even try that again because of the allergy, etc). But I love seeing her, I always come away feeling better, I always learn something, and I always get whatever I'm anxious about resolved.

Last month I went knowing that something was dreadfully wrong and expecting that she was going to tell me she had cancer. I just knew. But I did not expect that I would know as soon as I saw her, from across this huge waiting room. I don't know why it never occurred to me that she was going to look different. I guess I had come to realize that breast cancer was a very likely explanation for what had been going on, but I didn't expect it to be true. I think also I sort of think of her as super-human or something. And stable. She's looked the same since I've known her, aside from a little more grey in her hair. And now she looks puffy and shiny (presumably from steroids) and has a wig.

I don't want to see her looking different. I know all the reasons this is wrong and also all the reasons it is understandable. But it really bothers me, and now I have only one week to adjust to it. I can't explain the anxiety, but I really wish it would pass. I know it won't be too long and she'll look like herself again. She is either finished with chemo or very close to it, so her hair will start to return soon. She starts radiation soon and so she's not done with treatment, but will be in a couple months. I'm sure she'll look more like herself before long and then appointments will be easier, but I'm finding that it's easier for me to be superficial than to deal with this overall.

I just have no idea how to handle it.

And the "Duh award" goes to Just Me

I've had a history of a lot of UTIs. I know the symptoms quite well.

For the last 4 days or so I've had a bad backache. I've given it all kinds of sources.

We were very heavily hit by the snowstorm yesterday. I don't know how much we got, but the last 5 miles home (on a more rural road) I was having trouble with snow dragging against the bottom of my car. And that was after sliding everywhere, bouncing around on the ice piles that were under the snow and threw the car all over the place, and the maximum speed of 25 for about 2 1/2 hours. And the snow was still falling very hard. It seems to have stopped this morning but there is a ton of it.

So last night I realized "hey, that's not muscles, that is a UTI". And today I tested and yep, one UTI in the house. But I can't get to a doctor or anything, so I get to wait it until Monday.

This is probably my 10th UTI in 3 years. You'd think I'd know..........

Wednesday, February 03, 2010

Show and Tell

So since I finally found my elusive camera, here are a few of the things I've been working on. (Please ignore the background. I was moving things around to make space to take pictures. And also, these aren't set up very prettily and I didn't edit them. So they aren't the best, but it's bedtime).

Swaddling Blankets


And with the purchase of that mirror, I have every intention of getting a new picture for my profile. The one on there is from 2007 and essentially everything is different since then.

More show and tell another day. I've got lots more in the works and I'm so excited to be able to do something I really LOVE to do. I learned to sew when I was small from my grandmother, and have never really gotten to do it nearly as much as I wanted to as an adult.

Tuesday, February 02, 2010

Dr. Mind: Resolved

We had a good talk. We talked a lot about why changing providers scares me and some of the really AWFUL providers I had in the past, particularly the whole bunch I had in grad school. I had some hideous experiences with psychologists and with 2 psychiatrists.

We talked about the gun thing. And it was something he didn't even remember saying and was really upset that he said. It just must have been something that popped out and then when I reacted as I know I did he thought I was shutting down because it was a hard session. But I was even able to joke about it by the end and I feel safe again, so that's all ok.

We also talked about my amazing gains. I realized just before I saw him that the skipping an occasional Klonopin during the day had now turned into 2 days without them (except for sleep). Which is HUGE, since in November my anxiety medicine routine was thus: wake up. Take Klonopin. 3-4 hours later take Vistaril. 3-4 hours later take Klonopin. 2-3 hours later take vistaril if needed. Bedtime: huge dose of seroquel, valium, possible Vistaril, and lithium.

There is this scale called the GAF (global assessment of functioning) that gives a number to how well you are functioning. It goes from 0-100 and if you're interested in the steps Google it because I don't know them well. I know that in the 80s you're essentially functioning normally with occasional glitches, in the 70s is mild impairment, and suicidal gets you down to 10-20. 5 days before I went in the hospital Dr. Mind did a score. He had to get the book out because it was lower than he usually deals with. I asked about it today. I scored 35 at that time. Essentially "barely able to minimally function". It got way worse in the next week. But today? 85. The best ever for me.

And to end this post, people just are awful sometimes. This is relevant to one situation that the person in question will recognize. I really hate people at times.

So exciting

Did I ever tell you I like to sew? Don't know why I would have since I've not been able to do it in many years. Too much concentration, fine motor, sticking with one thing, etc.

In the last 2 months I've started sewing again. I wake up early now, between 4 and 5 most days. And for the 3 hours until time to get ready, I sew. Mainly I've made baby things.

This morning I made myself pajamas. And with another 30 minutes tonight I can wear them tonight. How cool is THAT?

Monday, February 01, 2010


First, Breaking News: Gage is HOME! And cleared to return to school!

Tomorrow I have to do something hard. Essentially I have to tell Dr. Mind he pushed too hard and totally freaked me out.

He, predictably, determined that I have to deal with what may happen with Dr. Brain. Obviously we hope and pray she'll be fine and able to continue working. But she may be unable to do that, and she of course may not survive this. I know these things. I am struggling though to accept just the basic "there is a big change that may or may not affect me much" thing, and the questions he was asking were things I can't answer. The truth is that I do not know what I would do without her. I've had something like 12 therapists and 5 psychiatrists. Psychiatrist 1, Dr. Prozac, died suddenly about 6 months before I finished grad school. Psychiatrist 2, Dr. Scared Me to Death, i only saw a few times and did not respond well to after she popped out with "You may be bipolar" 5 minutes after meeting me and caused me to run away. Psychiatrist 3, Dr. Stupid, spent 8 minutes at a clip with me, didn't listen to what I said, and would document I was doing fine because I was able to work, despite the fact I was coming home and immediately going to bed in my dirty scrubs, fighting to be able to shower because of paranoia, and was suicidal. She was a treat. She also made me a million times worse by giving me meds that were so obviously wrong for my diagnosis. Dr. 4 was really a team of doctors but mainly I saw just the one who I developed a relationship with, during the clinical trial. I really liked him a lot. However I don't think he is anywhere around anymore; he was a fellow back then and a fellowship with the Guru of Bipolar pretty much gets you a job wherever you want. Psychiatrist 5 is Dr. Brain. Then of course there were 2 in the hospital and they were both ok, but they don't count since I don't remember well and were too short-term to really know much. One of them didn't want to listen to me about my severe reaction to lamictal and why I've been determined to not be a candidate for re-introduction after the rash, but to be fair my ability to explain was very limited. So out of those 5 doctors she is the only one I've had a long-term, really therapeutic relationship with. It doesn't make me feel confident about other doctors.

There are other reasons that I can't imagine one of the bad things happening. I can't imagine such an alive, giving person not being here. She has young children. Her youngest daughter used to come to some of my sessions back when she was 4 and nap on her mother's lap. She'd be about 11 now. And she's a good person, one of the best people I know.

So anyway, we ventured into that. Which was enough. But for whatever reason he decided I need to use this to start considering what I should do to bolster my support system from the few people it currently is. Within minutes he had made my mother become unable to assist me, himself move away or worse, and Dr. Brain gone. And the only resulting feeling is panic. Then, to make it even worse, he reminded me that he has always been very honest that when his son graduates he may move away. OK, he has. Except that he totally forgot that I have no sense of time from recent years and so in my mind that is 8 years off because that is what number I absorbed. Apparently though that was 4 yeras ago. But it is really 4, I know now. And I don't want to worry about that for 4 years. But I also know how rapidly 4 years goes. And I know how perfect he has been for me and that finding someone like him will be very hard. Not impossible as I have at least had 2 very good therapists out of the 12, but unfortunately most of the rest were either duds or out of their league with me.

And then he just got plain old stupid. Which is the part of this I least look forward to. If you were reading back before the hospitalization drama you may remember that I had been working on my intense fear of various things, including a terror of guns that runs so deep that the only logical explanation is that something very traumatic happened around me with a gun. I don't remember this, but I do know I've had extreme reactions to guns as long as I remember, and that not only was I raised by a violent man who I know threatened to use guns in a horrible manner at least twice, but I also was molested by someone who had no problem scaring me horribly to keep me quiet. Either of them could have done something that horrified and terrified me and was probably beyond my understanding.

So I was talking about my reluctance to build a support system because I'm just tired of people knowing that I have this. Clearly I'm willing to be quite open about it, but only when I choose, and when I am in a situation where I don't know/don't care what you assume about me. In my regular life though I don't enjoy the things people automatically think when they know. This is particularly true in my professional life because people make so many assumptions. They think that if they know what my med combination is that they know what is wrong with me. This is especially true with being on a high dose of anti-psychotic. People make such assumptions about that that I have even had a family doctor refuse to even meet me because I was taking one. (Now medical students learn about me from my family doctor who got past his assumptions really fast with me, but he started out with them.) I'm tired of people finding out about this and suddenly I'm not who I used to be. So while I understand I need support, I don't want to tell people.

Unfortunately this is where he really screwed up. I think he just used an example that came to mind, or which he's used before, and he forgot my terror of guns. But he was trying to point out that just because people know something doesn't mean they know the whole story, or that they know what it is really like. (I am still not sure where they then become a support system, but that's because I didn't make it that far into this example). His example of choice was to tell some story about how he shot someone as a kid. He later told me that it wasn't true, but that was after I nearly fainted out of horror. I think he realized the error, but it really, really upset me and was one step too far in a conversation that already made me feel like he was stripping away all my security at once and not replacing it with anything.

So I left last week feeling afraid, alone, abandoned, and terrified of the future. Also a bit afraid of him. So tomorrow we have to talk about this and how difficult coping has been.I don't want to. I hate confrontation and I really hate saying "you screwed up a whole session and I've not calmed down since".

Truthfully I think his logic was something along the lines of I'm better now so I can handle big things. The problem is that I'm better, but I'm not exactly settled into this new version of life and I'm got to find where my coping skills are and learn new ones to cope with this transition into the most normal life I've ever had. My moods are better, aside from being very teary with this, but this is all new to me and I have to learn a new way to live. Yes, ideally i should have a more wide support system. I could have handled that conversation. But the one where all security was riped away was overkill.

And have I mentioned I hate confrontation? Even with Dr. Mind who I've had more confrontations with in the last 4 years than anyone else in the last 1o years?

overload, overload........