The Ward

Where I work is composed of two buildings. One building contains 100% psychiatric patients. They either have a severe, usually relatively uncontrolled psychiatric diagnosis, or they have dementia with very severe behavioral issues (ie they've sent someone at a regular nursing home to the emergency room). The other building is a mixture. Many of the patients are fairly typical nursing home patients. Many were not particularly easy dementia patients but not "dangerous" patients. Some are just in from the surrounding community to recover from illness or surgery. Those people are kept fairly isolated. And then there is "the ward".

I've seen this happen twice now. A few years back reimbursement started being better if you put patients with psychiatric diagnoses in "behavioral units". I don't object to this concept per se, certain patients need a locked environment to be safe, and plenty thrive this way. What I do object to though is the collateral damage. Coincidentally both times that a facility I worked in went to this behavioral unit model I was on disability and walked back in to find one section blocked off and those residents isolated. My issue is that both times people who were not violent, who were quite capable of being part of the general life of these facilities that are dedicated to caring for people with psychiatric needs (for pete's sake, we have to have training on how to put people on the floor without hurting them.....) suddenly were restricted.

Both times there have been people who are harmless but a little "embarrassing" to the public who wind up out of sight. Both times I have been very upset about this. Supposedly our world has moved so far forward in accepting mental and physical disabilities. Just today I spoke with the mother of a very old for his condition patient with Down's syndrome. She told me what it was like to have that diagnosis many years ago and how far her son's quality of life came. Yet when I walk onto that ward, an area I have carefully avoided for the last few months because it breaks my heart, all I can do is wonder if someday I too will be shut up somewhere because of my embarassing behaviors. Please God, let this never be true. I accept that I will lose much to this illness, and that I may lose much of my cognitive function. I accept that sometimes now and always my behaviors will be inappropriate. But I value freedom so much that I believe I would want to die if locked up for a reason other than my safety.

When I began this blog I meant to write about some of what I see and feel doing what I do. This year did not go according to my plans, and so instead I'm leaving mental health as a specialty before I even start writing. (Did I mention that part? I'm changing specializations.) I hope to write about it anyway from time to time, and I'll still have new things as well. However, to be totally candid this new ward is one of the reasons I am ready to leave. I was on it today with a longtime favorite patient--she calls me "mother"--clinging to me sobbing because she was so glad to see me, knowing that this woman has no reason not to be freely wandering as happy as a clam, harming nobody, just looking and acting different because of her diagnoses. All I could think of was how wrong and how I feel like a hypocrite having anything to do with a system that sticks people just like me in a locked area so others aren't uncomfortable.

And then I thought that not feeling that way, not feeling compelled to get out of there, would mean what I fear so much: that the illness won, or that the society that judges the illness won. So I'm taking a stand in a way. Too bad nobody knows, and even sadder that those who control things couldn't care less.

Random Things

This is a lot of unrelated items tonight:

• I can breathe. I went to urgent care on the way to work Monday and spent yesterday sprawled in bed. Antibiotics are really wonderful. I should be fine by the weekend.
• I got my hire packet for my new job. Wow. It still doesn't seem real. But I'm more excited than anything now. I'm feeling very sure of my decision. In 2 more weeks I'll tell you why.
• I have to be fingerprinted twice for this job. Ick. At least the rules changed. Last time I had to do it myself and I messed it up and the ink still wouldn't come off. Now it has to be done by police. But I bet the ink will still be everywhere.
• I also have to have 2 more needle sticks. This does not make me happy. It will be a total of 12 since May and I have 2 more coming in November. This especially is annoying because it's for a TB test which I just had a negative on, but I don't have my original sequenced one from my first job 6 years ago, so I have to start over. Stella, you and all your shots amaze me!
• I'm going to reach 100 posts really soon. And I have had well over 600 visitors.
• With a visit yesterday from Africa I have also now had a visitor from every continent but Antartica. Now THAT would be something.
• Hot lemonade (1 cup very hot water, 2 1/2 T lemon juice, 2 T sugar or honey) feels so good with congestion and sore throat.
• My mood is SO, SO much better. I think I'm finding peace in my decisions, and the more I go through saying good-byes and the like the more I'm sure. There are things I wish I could accomplish but it is no longer an environment where I can happily do that. I am starting to believe this.
• I am going to survive. Thank God.

Wow

I am still quite sick but I did get antibiotics and the sole prescription decongestant I can take, and my fever FINALLY broke, so as soon as my throat isn't sore, I can talk in more than a croak, and I am not coughing like I have endstage emphysema I'll be good again.

The good thing is that I spent an hour croaking at the psychologist and it seems I actually am out of this summer's major episode. I'm still dealing with a lot, obviously, and will be for a while, but confirmation of what I've sort of suspected but have been too afraid to really question is good. I'm afraid that the transition will be too much, but so far so good really. I've had mood fluctuations, we've changed meds and although one change had to be stopped thanks to this stupid cold and my inability to know how I felt, it was a change I'd rather not make anyway and I'm hoping I'll find out some psych symptoms last week were really the beginning of being physically sick (something I'm not good at admitting is happening. For example, my throat is very, very sore yet I've been trying to pass that off as "a little" until the doctor informed me otherwise. Or Friday I started feeling dizzy at times, which has continued through today. Never thought the doctor might want to know that.....).

The next step is making the change reality. I helped out at one of my new places Friday; that made it somewhat more real although not as much as I wish because part of being a contract therapist is occasionally helping out in facilities you've never been to so it didn't feel totally real that this is MY place, MY desk, etc. Tomorrow I guess I am to start bringing my own things home. That I dread more than I want to think about, which I'm sure is why the psychologist says to do it now.

Two and one-half weeks.....

As if I didn't have enough to deal with

I can summarize the last few days in a few words: snot, cough, drip, pain, fever. And I'm not allowed to take cold meds. I'm also in the period where if I take a sick day I lose a lot of money that is my payout for accumulated time off when I actually leave my job. So I'll be off working and blowing my nose and washing my hands every 3 seconds tomorrow.

Back when I can think.

Normal

In response to my last post, Sarah asked, "but what is normal?"

Good question. I know there are 2 sides to the coin, and that it is true that life is so diverse that normal isn't a real thing. For so long I've proclaimed that I live a normal life, just done differently. But in reality, this is not so true.

I've spent a lot of time in the last few months accepting that I have to live with some things that prevent me from having things I want. And while that in itself is normal, what I'm giving up is not. I want to work without modifications. I want to work without anyone knowing I'm sick. I want privacy about my illness and instead I have to fight about it. I want to continue in the career path I've chosen and love and instead I'm taking a less challenging job because my body can't handle what it used to. I want to have actual money to spend instead of all of it going to meds and counseling. At this point it seems I have spent about 33% of my income this year, or more, on bipolar. That is not normal, especially since at the same time I cannot buy simple things I really need. I need two home repairs totaling $1500 and there is no way I'll have that until tax refund time when I get all my medical expenses back.

But my definition of normal? So simple. Normal would be having the energy to have the clean house I desperately want. Normal would be not fighting to find time to see a therapist once or twice a week. I hear people schedule for 3 weeks away and I'm in awe. My therapist has been at the place I go for a year. I've only seen him half that time, yet I'm fairly sure I've logged more hours in his office than anyone else he sees. Normal is being able to work without constantly fighting to get the brain to do what it is trained and experienced at doing, yet no longer does so well. Normal is sleeping without sedation and for a realistic amount of time. Normal is getting to do social things occasionally. Normal is having friends. Normal is going to church when I want to. Normal is not rushing out of public areas because of noise.

Here's the difference between normal and me: Two other people quit their jobs this week where I work. Both of them were later able to be talked into considering staying longer to see if some issues can be resolved. In my case I had no choice; I have to get out of there. I'm excited about my new job, yet I also know that it's not going to be using my greatest talents. And because of how sick I've been, I have no choice but to accept that this is what I NEED to do right now, and to force myself to have a good attitude. In my field, where the shortage of trained people is enormous, it is possible to always get a job doing pretty much what you want. Taking a job because it's better for my health, that is not such a normal reason for a transition within my professional sphere.

To me, normal is all that is lost, and much of that is very raw right now because until 3 months ago I wouldn't admit I had lost anything. Yet since that time I've had to face so much loss because my condition isn't what it was. So all I really know that normal is what I define as things I reasonably could expect at this time in my life and that I cannot expect to ever have.

So, I don't know fully what normal IS, but I do know what normal is not.

Some of what's been happening

I meant to post this last night, but I had a very long day (up early, drove an hour to the psychologist, drove an hour to work, worked 8 1/2 hours, drove over an hour home) and I kinda fell asleep. Plus there was much emotional drama in there....

I quit my job yesterday. I have a new one starting in a month which I am very excited about. I hate, hate, hate, hate, hate leaving what I do now and the new job is an area I find less challenging, but I don't think I can handle the stress of a challenging job anymore. Also it's only 20 minutes from home. That's a dream after years of driving over 2 hours each day.

I am still going to be pretty quiet about what has been going on that was so bad, but I knew when I went on disability that a chunk of my illness and the severity was because I did not get the support I needed and deserved. I asked for help, repeatedly stated I was getting sick, and I didn't get help. Various things to improve that were supposed to be in place when I returned. That did not happen and the pressure to do things I couldn't do was immense.

There were many other factors. But I started looking tentatively about 1 week after I returned and when something that sounded good came along I interviewed. By that point I had changed to "if I get it and they'll pay remotely what I make now I'm gone". Long story short they offered way more than I expected and so now I'm a lame duck. 29 days and I'm done.

Emotionally I'm not handling this well. I'm having a lot of mood swings. I've had more ativan in the last day than in my usual 2 or 3 days. I feel like there is so much to get done, telling people is horrible, and I still haven't told most patients. I'm mourning the loss of the job I had a year ago. But when I talked to the vice president of the company yesterday (more on that after my notice is served) I told her I have been in bad situations since January with a manager, the only one who can help me, lying to me directly and repeatedly. I think 9 months is about enough of that.

Conversely, I'm so glad. I made some very hard decisions to do this, and they are right. I know they are. Being back has shown me how hard working is for me. Compared to a few years ago it is a million times harder. I seriously doubt that I'm going to be able to do this for a tremendously long time. I'm arbitrarily picking 5 years as a point that I hope I still will be working. I finally know that I need to do what I can to preserve my ability to do this at all, instead of pushing to show I can do the hard stuff like everyone else.

The hardest lesson of 2006 is that Just Me just isn't going to get to live normally no matter how hard she pretends.

The time is nearly here

This entry is intended to create great suspense.........Tomorrow should be the big day when much of what I have been dealing with is revealed. Today I am breathing deeply for the first time in so long.

Be waiting......(actually don't, I have to work late)

Two Things

One, today I feel much, much better. I'm taking charge of parts of my life I haven't been in control of for a long time and it feels good. The story will be breaking very soon I believe.

Two, I'm interested in some feedback. I know that some of you have various mental illnesses. I know because it is logical that most people are going to feel a fairly strong sense that their illness is at the worse ends. After all, they are suffering and this is as bad as it is for them.

It seems like people tend to want to express that to one or the other extreme. Either they want to hide how bad it is, or they want to vocalize how bad it is. Once I had a patient "confide" in me that she had had hallucinations. Given her medical history I knew this, and we talked about how common hallucinations are where she lives and in a way even in general. She very poigantly asked if I had had them; I was honest and said no, although it made me think a lot. After this spring when I did hallucinate thanks to a medication I'm not sure what I would say. I, on the other hand, have no problem talking about a great deal of it, although when it comes to admitting my limitations I have some failings.

But one thing I do which is bad is that I am so used to how I have taught myself to cope with my mood swings (and panic attacks and anxiety and sleep disorders) that I often think things like "that is JUST depression", and then I am frustrated when someone complains of struggling with depression. I never mean it to be demeaning, because before mood stabilizers I spent plenty of time absolutely paralyzed by depression, and I know that now the only reason I don't is my medication. However, I also know that I have one of the worst forms of bipolar and I'm still managing. Not well at times, but managing. But that tendency to compare and think "you have no idea what a real psychiatric problem is" still lingers. I'm even more ashamed of this because if only you could see how well I am compared to my sickest patients...

But anyway, does anyone else do this "you must pass the mental illness iniation" to get the right to complain without eyerolling thing? Or am I just mean?

Monday

Tomorrow is a big step toward fixing my life. I can't say much beyond that, but this year we're going for hope on Sept. 11.

Of course, that year the day started so hopefully too...I had a patient who I had been working hard to help with something and a solution had finally occurred to me. I needed to pick up a couple things at the store so I did. I was so thrilled to get to work to go show the patient what I had discovered.

I got to work at about 9:00 sharp. I hadn't turned the radio on in the car so I didn't hear any news. When I got to work someone met me at the door begging "what did you hear? What does the news say?" with such pain in her voice. I was totally clueless.

We were in a basement and radios and televisions didn't work there. All day we got snippets of news when we went upstairs for a moment or 2. So much of it was wrong and we didn't catch on to all corrections. I was in a nurses station when I heard a gasp and watched tower 2 fall. It hadn't hit anyone that so many people were still in there yet. I remember how it was impossible to figure out what rumors were real because nothing sounded beyond the realm of reality in light of what we knew had occurred.

Later in the day I had to do a home health visit. I lived near an airport and there was never a time that several planes were not visible, but that day there were none. That's the most real memory to me, that clear blue sky that week without a single plane for days.

That week it seemed life was on hold. Tomorrow I'm taking tiny step one in removing my own life from hold. Maybe it's symbolic?

Anniversary

Today is one of those odd days that aren't that meaningful yet you never forget. Four years ago today I was finally firmly diagnosed with bipolar disorder. I'd had a probably diagnosis for several months, and had been on lithium even longer than that, but on Sept. 9 I had the appointment where there was no more doubt.

I had contacted a mood disorders clinic at a major university hospital near me (something I highly recommend if you are not getting better from depression or bipolar) a week before. When they first offered me an appointment it wasn't until the end of October. I cried because I knew I couldn't last that long and I was not having any luck finding anyone to treat me and I knew that I was on the verge of needing hospitalization. (I probably really did need it, but I had no doctor to place me there). The woman felt sorry for me and found me an appointment just a few days later. I had to bring someone who could verify my behaviors (something that was terribly hard for me to ask anyone to do and which was hard to experience as it hurt to see her confirm symptoms I didn't realize I had), and prepare to be there for several hours.

When we arrived the receptionist claimed I was not on her list and sent us to another area where there was no receptionist or anyone else. We waited almost an hour before someone appeared and when I explained she checked and it turned out we had gone to the right place but now had missed my appointment. I again began crying and pointing out that both of us had missed work, traveled a long way, etc and it wasn't fair to deny the doctor's visit when the receptionist was wrong, not me. The doctor himself agreed with that and so he saw me anyway. The receptionist was reprimanded and she was never nice to me after that.

The evaluation itself was exhausting. That's mainly what I remember, how tired my brain was at the end. He asked questions about everything in my entire life and how I did things, reacted to things, approached projects, etc. He walked back through my life year by year to find when I truly first had symptoms. He started predicting the patterns that identified the variations of bipolar that I had. That amazed me; he could ask "do you do this?" and then tell me that I also did this and this but not this.

At the end he did something that I have remembered a million times when I have been most frustrated. He asked me how I had done so well for so long. I had gone far beyond when I statistically should have been clearly diagnosable, and I had avoided pitfalls I was statistically extremely likely to land in. At that point it was amazing I had maintained a job for 2 years. What he didn't know was that I hadn't even missed a day of work due to bipolar symptoms yet and I wouldn't for another 5 months. That made me feel so good, like at least if I had to have this at least I wasn't totally handling it horribly.

Then he told me about the specifics of my diagnosis, about the program the clinic ran, about the research studies he was recommending me for and the chances that they'd help. He was very honest that at that/this time there was nothing that was likely to give me a total recovery, but what he described is more or less what I have now. He explained the educational part of their program, which I now believe was probably the most valuable thing I got from that program. (the med combination didn't work out so well for me in the long run). Then I met the research assistant I'd work with to go through more paperwork and explanations of the medical requirements for the study and I was given a lot of information. Finally I was sent home to sleep for about a week.

And so, 4 years and 12 hours from now, I became an official bipolar patient.

There isn't much to say. Somehow I feel like I've become the master of drama this year. Ever since January 15 (ironically the day this blog was started) there has been one disaster after another. And half of it I don't even clearly remember.

Anyway, I wanted to just say today that I promise that I actually do have a normal existence at times. In fact, I think that was the original point of this blog....

Please give me a couple of months to prove that. In the meantime, the drama shall continue.

There is good news with all the chaos though. My mood is staying good. I really am doing well with that. I'm handling way more stress than I should be, and yet I'm doing ok. And I've learned some big lessons about what I can handle, and I am approaching things accordingly this time. Before I tried to pretend I was normal. Now I'm fixing the problem. And I'm doing what I need to do to help handle it, like seeing my therapist more, etc.

More to come as I have ideas.

On and on

Funny enough, when I started this blog I thought it would be about how I was able to manage serious illness well enough to work, and not just work but do so in mental health. Turns out that these months haven't been about that. This blog is much more real than I ever thought it would be. The idea in my mind had a lot more to do with talking about how sometimes I get into my patient's brains and know how to help because my brain is the same, and how that is the most incredible feeling. I thought I had things figured out for how to make my illness work for me. That wasn't so true.

I still can't talk about my work thing; I probably won't be able to for some time, but I think I will be telling all in the future. This is quite likely to be the impetus for my moving slightly beyond my Just Me mask. However, I will say that it continues to be consuming.

I'm starting to really wonder if working is right for me. I don't know what else to do, but I'm struggling to get through the days, I'm so slow and it's not improving, and I'm tired all the time. Today was the first time that I've had some energy on a day off.

Yet all I know is that these months showed me how much I love my work and my patients. Several people have acted like it is strange that I'm so thrilled to work; they just don't understand what it is like to realize you may not be able to do something you love.

This has no point. I just want to update and it's so hard because I can't tell you what's happening. I'm scared if I do I'll get fired if someone finds this site. I'm on thin ice as is. And I didn't do anything but have bipolar. So I promise I'll keep writing, and the truth will come out soon, and when I don't write it's because I simply am too frustrated, too tired, or feeling too constricted to talk.

Uh-Oh

I have a post in draft form that describes much more clearly what lithium toxicity was like. However it is not done, so eventually if you want to know about the topic, refer to the other post.

For now, I just need to say that I had some suspicious symptoms this weekend, minor but there. Clumsiness is a big clue. I woke up this morning with one of the largest and deepest bruises I've ever had and no idea how I got it. I assume I fell in the night.

I am waiting for the results of a blood test. I have no severe symptoms, but a few things are off, clumsiness and a few memory issues being the worst. This worries me. It's nothing like in May when I would wind up crying because I couldn't remember what I was saying, and I couldn't walk at all without tripping over my own feet, but it's also not the same as it has been.

It's obviously going to be very hard to ever trust this medication again.

Sorry

I just haven't been able to find much to say. Like I said in my last post, a lot of what is happening I can't go into because things are too tentative anyway and if the wrong person figured out that I'm me they easily could use it against me. And some people will do that who are involved in this. I think. I hate thinking the worst of people, but I think I'm right here.

Regardless, working is HARD. A few days I've done full days of my real job and been more tired than I dreamed possible. Other days I've had to focus more and those days are exhausting as well, in a different way. Ultimately the effect is that I work and I sleep. Today was the first time I've done anything other than that in 2 weeks; I went to see family for a couple hours. And while I'm so happy to be working, and I keep telling people that 4 months of enforced off time makes you appreciate working so much more, this also is what I feared, that immediately work would be most of my life again. This is leaving me with a lot of questions about whether this really is the right thing to do.

At the same time are a lot of other questions about how to handle the mystery situations I cannot breathe a word of. The solution I've chosen for the moment hurts my pride, and like any other potential solution makes me fear a potential bad result. I'm also considering alternatives, and doing that feels like I'm doing surgery on myself. Every time this illness takes away something I love I feel the whole loss of having it all over again. This time is no different.

And while that is all going on, there is so much joy in being back to work. It feels right in so many ways. I'm just no longer sure that the right way is there.

This then lends itself to trying to figure out alternatives. I feel very trapped in my situation by money. I have enormous student loans. I own a home and at the time I bought it this seemed wise because I could hope to finish paying for it by retirement. Now that I'm trying to figure out how to live on less money per month I am scared of what that means for homeownership. And I love my house. I can't imagine renting again, especially since I have more pets that renters are generally allowed.

All sorts of stress just constantly runs through my mind. I'm not able to go into more detail than this, but this is where I am. It's one of those times I really want someone to give me a big hug and promise that it will be ok, and instead I know that's not necessarily true.

More later, as I find ways to say things. And as I am awake!