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...

1 comment:

Michal Ann said...

Wonderful long post Jen! Thank you. I cut the tip of a finger including the nail so can't really type well! Ouch! At least my hacking cough is lessening. How's your bug??

Thanks for detailing all you've overcome as you've made such amazing progress. And yes, as you said, I will THANK GOD that you'll be able to continue your great relationship with Dr. Body! (I love your shorthand names, BTW.) You sure have a wonderful team to share your burdens. It's great that they network effectively, too.

I'm praying you'll feel strong and happy enough to praise God with joy during the morning, the day and the night. I desperately need that infusion of "good medicine" too! Let us DECLARE His faithfulness; "It is GOOD to give thanks and to sing praises...I WILL sing for joy..."

Yup, I guess the point is I have to attempt this discipline even when I don't feel like it so I'll increase my faith and joy. "Do right to feel right." You're disciplined, strong and responsible so you probably outshine me on this point. Go Jen!

“It is good to give thanks to the Lord, and to sing praises to Thy name, O Most High; to declare Thy faithfulness in the morning, and Thy faithfulness by night, with the ten-stringed lute, and with harp; with resounding music upon the lyre. For Thou, O Lord, hast made me glad by what Thou hast done. I will sing for joy at the works of Thy hands.” Psalm 92:1-4

Thanks for sharing your joy! It's wonderful to hear that the days are so much brighter and the nights so much more peaceful.