June 04, 2007

Lyme Disease-- Again? Part 1

Once again, it has been brought home to me how predictably Lyme disease lies behind each and every one of my recent hospitalizations. I was taking all the medications, every pill I was given, including the antibiotics and the Haldol. Okay, so I was skimping a bit on the Xyrem, not taking every single dose, partly because I just couldn't remember the 4AM one. Also because I am a night person and hate to have to go to bed before midnight. But in general, I was compliant with all the meds, just as I'd promised Dr O and Lynnie back in 2005.

Compliant or no, things got harder to take and the stresses of my daily life, such as it was, seemed too much for me. The voices started up again, first as music, then commentary, and then commands. Finally came the impulse, urged upon me by the commanding voices, to set myself on fire in order to atone, to sacrifice myself, to mark myself as Satan so everyone would run away...Oh, the voices of those invisible people, they had every base covered: there was every reason to obey them and no reason at all left for me not to. Luckily, Dr O does not consider admission to the hospital a failure on my part, nor anything worse than a safe place for me to go when things are out of control. Furthermore, she counts it a measure of health to acknowledge, before I do anything dangerous to myself or others, that it is needed or to listen to her advice when she says so.

It took some convincing, yes, but when she asked me what I thought Lynnie would want me to do, I knew the answer. Lynnie -- and I know this because she has spoken to many audiences about it -- suffers the agony of unending worries and sleepless nights and the hand-wringing, pillow-pounding desperate uncertainty of the well twin who is afraid she might lose her sister to a single ungoverned impulsive act. When I become psychotic, she is continually on the knife's edge, wondering when or whether she'll get the horrific, unbearable news. Angered by -- something, anything, everything about this illness, she wants to blame on me whatever control I might have had in the latest decompensation. Knowing this, knowing how much suffering I put her through when psychotic, hearing those commands and thinking about how to accomplish them, I decided I had to acquiesce and do as Dr O wanted, even if every bone in my body cried, No hospitals!

There were, unfortunately, no beds at N____ Hospital, where Dr O usually admits me because she works in their Sleep Disorders Center and thus can see me in the psych unit. Dr O invited Jo into her office with us, Jo, my housekeeper/friend/driver/counselee, who when I am well says in all seriousness that she tells me all her problems, that I am her psychiatrist! Jo agreed to drive me to the E.R. at University Hospital, and to give them some papers Dr O was writing out, explaining the situation and giving a detailed account of what my meds were and why.

We left, assuming that I would be admitted to that hospital not too far from where I live. But once in the E.R. despite being assured that I would be admitted, after a long wait in the psych cubicles, it turned out that someone else took the bed after all, and so there was no place for me. I was told that the law in Connecticut requires the E.R. to search for a bed anywhere in the state, near or far, and if possible, to send me there rather than keep me overnight in the Emergency department. The doc in charge said there was only a 50% chance of getting me a bed anywhere that night, but that they were obliged to call around. I tried to rescind my voluntary paper, meaning that I refused to go anywhere, that I wanted to go home. But she said that there were enough reasons to "paper" me, that is to commit me under a 14-day Physician's Certificate (PC) for observation and treatment if I didn't agree to go voluntarily.

In the end, they found a bed at St Francis, a hospital even closer to where I live. But as it turned out, it was not truly at St Francis, but the hospital I'd many years before spent time in -- the Mt Sinai campus as it was now called, in a more troubled section of town than St Francis proper.

I had difficulty getting words out in Dr O's office, being stuck in the world of what preoccupied me. By the time I reached the E.R. I had slipped into silence. I couldn't seem to want to talk, or even make the effort to produce sound. Moreover, the slightest audible sigh brought forth a barrage of abuse from those invisible people who knew their plans for me were being thwarted. I decided it was safer, much safer, and easier not to talk at all.

This state of affairs did not sit well with the doc on call at Mt Sinai, who came up to the floor to admit me an hour or so after the EMT's disgorged me at the nurses' station around 10pm. After discovering that I was not talking, and that he was going to have to read the notes I wrote, he threw up his hands in disgust and walked out the door. The psychiatrist who comes in tomorrow can do this, I can't, he said to the nurse outside the door. Meanwhile the nurses had unceremoniously dumped all the contentsof my purse and a bag that Jo had quickly gone to my apartment to pack for me onto the desk at the nurses' station and were quickly pawing through it for sharps and other contraband. I had expressly told them, in large letters, that I wanted to be there, to watch them doing so, that this was my right. I hit the desk with the flat of my palm to get their attention. One of them looked calmly up. What now? Her voice was dry, almost bored.

I showed them what I'd written on the pad.

"Well, there isn't time for that. We do things differently here. Now go to your room. Your bags will be brought there shortly."

I smacked the desk again. But I wanted to watch!

They paid no attention and someone took me by the sleeve of my hospital johnny and led me to a room, two doors down on the lefthand side. Upset as I was, when I entered the room I was gratefully aware of one unexpected blessing: it was a private room. Barren as it was -- bed, nighttable, a single chair, nothing else, all I could think was, Thank god, no roommate!

They couldn't give me my Xyrem that night, though Jo had packed it along with two changes of clothing in one of my NAMI tote bags, but I was so exhausted I probably would have slept even without the trazodone they did give me. In the morning, I woke to someone asking to take blood, and slipping a needle quickly into the vein inside my elbow. Over before I was conscious of what she was doing, I was ready to fall back asleep, when someone else came through the door and told me to go get my weight and blood pressure taken. I looked out the door to try to figure out what to do. It was confused with people, some patients and some not,and it was far from me to know which was which at that point. All I knew was that I did not know where to have my blood pressure taken, and no one was telling. The Rules made it impossible to leave my room in any event, so I simply sat on my bed and waited for an escort. Waiting for twenty minutes, or more I eventually fell back asleep. When I woke, a few minutes or a hour or two later I had no idea, a headache was brewing in my right temple. I knew this would happen. Each and every time I was admitted to the hospital since the Y2K meltdown I had a splitting migraine for the first 3 days no matter what I did or didn't do. This was so predictable that Dr O made a habit of writing orders for Imitrex first thing upon my arrival on the unit at N____ Hospital.

I will tell you more about St Francis/ Mt Sinai, but what brought home to me how little St Francis cares about its psychiatry department and the patients treated there was an incident that happened during the three days I suffered with my admission headache.

On the second day, or the night of the first day, they attempted to give me my Xyrem, though it was questionable to me whether they actually gave it to me or something else. I was so scared that they had given me a substitute, ie poison, that my stomach rebelled and I threw up almost immediately afterwards, made it only as far as the threshold of the attached bathroom. Since most patients were asleep now, I crept down the hall to the nurses' station with my pieces of paper and indicated that I had thrown up all the medicine I'd just gotten (if indeed it was medicine). The med nurse seemed relieved and said, Well, I think we'd better withhold the second dose tonight until we see what's going on tomorrow. They followed me back to the room, where I threw myself back on the bed, my temple and eye socket grinding, throbbing, pain like a root canal boring into the bones of my skull.

I sensed the nurses standing there, staring at the mess on the floor. They weren't saying much. Then one of them spoke to me. "Pam, will you clean this up yourself?"

I opened my eyes, stared straight ahead, and frowned. I beg your pardon? I threw up after swallowing their poison and they want me to clean it up? What in god's name was this? This was a hospital, not a jail--

"We don't have housekeeping staff 24/7 on this floor. Can you clean it up, Pam? I want an answer. Yes or no."

I could not believe what I was hearing. Did they actually mean to tell me that St Francis, which billed itself as one of the top 100 hospitals in the country, failed to provide any after-hours housekeeping staff for the psych units, even on an emergency basis? What the --? What sort of so-called top-100-hospital treated one of its in-patient units with such callousness and vile disregard? I was too wiped out, and too angered by the very idea, to surrender and do as the nurse evidently expected from me. "NO," I scrawled on a piece of paper. No, I would not get down on my hands and knees in the middle of the night at the peak of a migraine in a hospital of all places and clean up my own vomit. Had nursing actually come to this -- that nurses no longer nursed, no longer ministered to the sick or did any hands on work, nor did anything at all but hand out meds and make jokes at the expense of patients, and do paper work from dawn to dusk and dusk to dawn? It seemed that a once noble and necessary profession had been lost entirely, with nurses only competing with doctors in their need not to touch or be touched by patients.

But I wrote none of that, I just wrote NO. And dropped the pen and fell asleep. Presumably an aide was enlisted to clean the bathroom, because the next morning the floor was spotless. I found out later that evening that the special syringe used to draw up the Xyrem had never been taken out of the plastic it came in, so the nurse who said she had given it to me, mixed in apple juice, had in fact been lying. Whether she gave me plain apple juice or something else, I never found out, and decided not to confront her as I had survived the ordeal in one piece. But I knew from then on that I couldn't trust her. I'd find that I couldn't trust many on the nursing staff.

More on that another time. Although I started with a discussion of Lyme disease, I see that I have not yet made good on my promise to show how it had an impact on my hospitalization as suggested in the title. Bear with me, I will eventually tie all things together in this non-fictional but necessarily biassed (and probably colored by a certain paranoia) story.

Posted by pamwagg at June 4, 2007 07:21 PM | TrackBack


Hi Pam

I am so sorry about your ordeal at this hospital. I am glad that you stood your grounds and didnt clean up your own vomit. Luckily, these so called nurses are not the ones that you have to deal with on a permanant basis. I've just started to read your blogs and I've read the story about you and your twin sister. Maybe someday the mysteries of your condition will be solved, but now that so much of the treatment centers around medicines that have so many bad side effects i hope that you can pull through, and have as good a quality of life as possible. I think it is actually ironic that when you become psychotic or when you are in state of mind where you need as much comfort and support as possible that they would stick you in a place that is so cruel and cold; a place that is supposed to help you to regain your mental health.
Funny that this same distant and unresponsive place have laws that allow it to keep you there. I understand that the laws exist for some very valid reasons, however, i also think that the law should also provide more provisions to ensure that patients will be treated with more respect and medical care than you were treated with. Perhaps the law should mandate that patients be able to take exit polls when they leave the hospital, telling whether they actually healed or got worse during their stay at said hospital and the hospital be reprimanded or fined if too many patients complained. I hope you can understand your illness more and not just consider it to be solely caused by the abnormalties of your brain. Meaning that someday, you can be strong enough to battle the voices that only you hear.

Posted by: ann at June 16, 2007 06:11 PM

Thought this book might help you:

Posted by: Bryan at June 6, 2007 06:24 AM

Hi Pam,
I left out one important word.

I meant to say, "It is not so surprising to me now that I fell so hard for that lady in college and then could NOT get her off my mind."

(I left out the capitalized "NOT").
I hope its ok anyway.
Talk to you later,

Posted by: Stuart at June 5, 2007 04:23 PM

Hi Pam,
It is an amazing story you are telling. I am definitely interested in what happened next. I so appreciate reading your blogs because they help me get in touch with feelings I have had in the past and feelings I have now. I am so amazed at how well you can verbalize your thoughts even when you are in the midst of major struggles with schizophrenia or paranoia or something that is not right with your mind.

When I was in college something went wrong with feelings I had about a young lady. For much of my adult life, I have had some big mental issues with depression and panic attacks and obsessive compulsive tendencies. I would not ever want to say that issues I have had are anything like yours. Since my time in college, I have learned a lot about the natural personality I have, and what I thought would make me happy as I was growing up, as well as the personality of my parents and their hang ups. It is not so surprising to me now that I fell so hard for that lady in college and then could get her off my mind. When it became clear that she wasn't interested in me, I really wanted to get her off my mind. The process of getting her off my mind has taken more than 2 decades. For much of my adult life, I have been in the midst of overwhelming situations where I couldn't get my brain to stop going so fast, or sometimes I couldn't get my brain to get going and let me do even simple things. A lot of that time I wish I could put into words what I was feeling (I wasn't able to put anything into words). There were many times it seemed to me that something just made me different. Everyone else got to be normal but for some reason I was not allowed to be normal. I still do not want to say that what I have gone through compares to what you have gone through. So much of the real world is so unfair. In the last 3 years I have found a good psychiatrist who has put me on clonazepam and zoloft. I had a lot of reservations about going on any medication. Almost 20 years ago I was in the Navy and wound up in the psych ward of the Navy hospital. This was after college. I had a tough boss and some panic episodes and depression had gotten too overwhelming. I was told by a Navy Psychiatrist at that time there was no medication that could help me (Something I am very surprised by today). The Doctor wanted to kick me out of the Navy, but I wanted to fight to see what I could accomplish. I went back to the ship. I had a very understanding Captain who made some rearrangements for me to serve in areas where I was capable of accomplishing something. He put me in a different group under a different supervisor. I was happy I could prove that psychiatrist wrong at that time. I worked on the ship another year and a half. I was very fortunate to have a Captain who followed his gut. When he thought a psychiatrist might not be completely right, he followed his own gut on what he thought might be possible.
I managed to accomplish a lot since I got out of the Navy, but in the summer of 2004 panic attacks were getting too overwhelming again.
I got on my perscriptions in Sep 2004. I have been extremely fortunate that I had positive results from both of them right away.
Pam, I appreciate so much how well you write in expressing your feelings. Even when I might say your feelings are not correct, I read what you say and I say "I can relate to that." So many times in the past I could not put into words what I was feeling. Even when my feelings in the past were not the same as yours, I have seen similarities which I could relate to. (I don't ever think I thought of myself as totally evil, but I wondered so many times, "I must be doing something wrong, what am I doing wrong?" )
Pam, I want to thank you so much for sharing with me and (all of your other friends) what you are feeling. Many times, reading your words has helped me get in touch with memories where I could not put into words what I was feeling at the time. Keeping up with you has been a big help to me. I am not hoping at all that bad things will happen with you (so you can share about bad feelings). I am hoping you will have only good things to share and I sincerely hope you would feel good all the time. Please keep sharing with us everything that is happening, whether good or bad. Concerning some good things you have shared, I have also felt myself leaping for joy when you talk about something working and you are having a clear mind and feeling good. (Also I give thanks for the good times where I have gotten reprieves from my mind going out of control). I know I can't express in words nearly as well as you can. I just want to say thank you for expressing all of your feelings in words. Sharing this blog has been a tremendous help for me since I found it about a year ago. I look forward to sharing more things with you. Thanks for being so honest about everything (and sharing so well).

Posted by: Stuart at June 5, 2007 02:10 PM

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