AfflictionAteHer

It’s always strange to try to suddenly change an ingrained schedule. Not sure if I’ll keep this entry up here or not, but here goes.

In the interest of trying to figure out what’s causing what in my body these days, and in the interest of honoring the medical information I’ve been uncovering about side effects and the medications I take, I’ve been cutting back wherever I can.

Today I feel like I have a balloon attached to my shoulders. Two nights with no Seroquel (and no withdrawal symptoms!). A new drug – Trazedone – in it’s place. No Lamictal yesterday or today. Protonix dosage cut in half. Symbicort dosage cut by three quarters. 2 cigarettes so far today instead of 10, and a nicotine patch instead. Short on sleep because I went to bed so late. Heavy duty hay fever (me and my mother both, so I’m assuming it’s not related to my change in medications). I have to say the effect is similar to the effect you feel when you’ve consumed a large dose of Valium. Not unpleasant, but not normal. I will say that for the first time in what seems like months I’m taking deep breaths and actually feel that I am getting plenty of oxygen. Maybe it’s the extra oxygen that’s doing it.

About twenty minutes ago, the girl who sits across from me asked me if I smell mold, and I said no. She explained that she’s quitting smoking and wondered if her sense of smell isn’t going a bit haywire. Her face looks like mine feels – sleepy, flushed, surprised. The girl who sits down the row from me stopped by my desk and we simultaneously said, “I slept through my doctor’s appointment this morning!” (she slept through her OB/Gyn appointment, and I slept through my appointment with the general surgeon).

I guess what I’m saying is that I’m not the only one floating through my day, but floating through my day I am doing.

Based on these changes in my medications, here is a list of what has, and has not, changed:

1. I can flex my feet and toes without having a muscle cramp, this morning…
2. But I had a relatively minor foot cramp last night.
3. I haven’t coughed all morning!!?!!!
4. Well, that’s not exactly true. I haven’t coughed my gurgly/croupy cough all morning, but I have coughed an occasional allergy cough (itch cough/itch cough)
5. I am not sad, euphoric, paranoid, or insecure.
6. I have been pretty nauseous, especially right this minute (but it also woke me up this morning).
7. I had trouble swallowing when I went to bed last night. I took 100mg of Trazedone and 600mg of Neurontin before I went to bed. Could the Neurontin be the culprit? Did I wait so long to do something about the Seroquel that it’s caused a semi-permanent problem?
8. I have a bit of a headache, but it’s a different kind of headache. My normal daily headache is oppressive and constant. This one’s more of a “What the heck are you doing to me now?!?!” kind of headache; Advil seems to work on this one.

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My brother was often sick, the year before he died. Every few weeks the long distance conversations I had with my mother every day would turn to the subject of a new illness, and we often wondered to each other what could be causing all his physical misery.

There came a time when he had missed so much work that he was on the verge of ruin – all of his utilities about to be cut off, his rent unpaid, his car payment likewise unpaid – and I called him to offer my help. He had recently been released from the hospital, and he told me in hushed tones how frightening it had been to find himself losing consciousness, coming to only after an emergency team had resuscitated him with electric paddles. Still, even though that happened several months after his body first began to fail, his doctors (of whom there were many) couldn’t figure out what was causing him to decline.

After that conversation I often found myself fantasizing about coming to his rescue which, in my mind, meant finding some fantastic hospital that specialized in taking someone like my brother and pulling him off all his prescribed medications for a prolonged period of time so they could reevaluate what was actually going on in his body. My brother wished the same thing.

About two weeks after he died my mother received the bill for my brother’s final hospital stay. He was only there for a day and a half before he died in his hospital bed, in the middle of the night, of undetermined causes. The reason my mother called me was because the bill included a three-page itemized list of all the medications administered to him while he was in the hospital. This shocked me to such a degree that I asked her to read them off to me, and then to send me a copy of the bill. Sure enough, 3 full pages, single-spaced, of medications, dosages, and (of course) associated charges.

Some of the medications were duplicates. For instance, the hospital prescribed Advair, an inhaled steriod, for my brother. They would give him two puffs off a 30-puff inhaler, then discard the inhaler and have him take 2 puffs off another one that night, then discard that inhaler and have him take 2 puffs off another one the next morning. At more than $300 per inhaler, they would have made a tidy profit on that procedure had my brother left any money to pay the hospital with.

Still, the list of unique medications he was given was more than a page long, itself. If memory serves me right it was something like 21 medications, if you include the drug they tried to pump into him when they tried to revive him that one, last, failing time. That final drug was Narcan – an antidote to morphine, which he was receiving in pump form for back pain. Oddly, morphine overdose was never considered as his final cause of death (but that’s another story).

My brother was on medication of one kind or another pretty much 100% of the time from the time he was about 4 years old and had his first asthma attack. If memory serves me right, it started with an inhaler that was outlawed in the US in the 1980′s because it contained the chemical equivalent of speed. He used that until he was in his late teens, and that’s about the time he started using cocaine.

I don’t know specifically what other drugs my brother experimented with, but I do know an old friend of his called me when I was in my mid-twenties because he was concerned about John, and when I asked him what my brother was taking all he would say was, “Imagine the worst drugs you can think of, and that’s what he’s taking.” That’s also how I learned that he’d been doing drugs since he was a teenager. When he died, my parents found pot in an old toolbox. His girlfriend told them his dealer was distraught over John’s death.

Drug use was something my brother struggled with on a daily basis from the time he was first diagnosed with bipolar disorder, and that struggle carried over to prescription medications he was given, most of which didn’t work well for him. The only drug that seemed to “help” him over the years was Valium, and he developed a deep and abiding physician-support addiction to that drug that interfered with the other physical maladies he was dealing with at the end. His prescribed dose of Valium was so high, in fact, that it might have been considered an overdose in someone who hadn’t built up a tolerance to it. John was well aware of this, and it’s one reason he joined me in the fantasy that we might some day find some place to help him through everything. Unfortunately, his psychiatrist didn’t think weaning John off Valium was a very high priority.

Valium isn’t what killed my brother. I mention it only because it was not, actually, one of the drugs listed on his hospital bill, and because it was not one of the drugs found in the toxicity screen the medical examiner did after his death. The hospital didn’t prescribe it for him so they wouldn’t let him take it after they checked him in; they gave him something else instead, I don’t remember what.

What I’m trying to say is that those 21 unique medications on the 3-page hospital bill were all prescribed at and by the hospital during his day and a half stay before he died. And though it is, as I said before, another story, I can tell you that a law firm my parents contacted after his death concluded that they didn’t have case for a wrongful death suit.

I’m writing this as a warning. Those of us who are not physicians or pharmacists may not feel qualified to make medical determinations about prescriptions and diseases, but we do have a kind of common sense may people in those fields appear to discount. To the best of my knowledge, there is nothing in this world that does only one thing, and medications are no different.

When we take a medication we need to understand what the side effects of that medication are. I have yet to have a physician sit me down and say, “I’m giving you this medication because it will do away with symptom A, but I want you to understand that once you take it you will definitely begin to exhibit new and different symptoms. I can’t tell you exactly what they are, but here’s a list with 40 symptoms, and you will definitely begin to experience at least one of them, if not several. I want to see you after you’ve been on this drug for a few days so we can go through the list together and see what’s happening to you. Then we can decide together if you believe it’s worth taking.”

Because physicians don’t do this, we need to do it for ourselves. I’ve spent the better part of my morning reading prescribing information about the medications I take and I’m starting to feel like an utter fool.

It’s too late for the fantasy my brother and I had for his recovery. It is not too late for me to take my own health, and the decisions I make about what I put in to my body, seriously.

More about this in my next post.

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