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Pill Day

May 31, 2012

 

Here they are, all the prescriptions that keep me alive and able to do anything at all. You can see the  Rxes; they are in the white-topped vials. There are abbreviated names of the tops so that I can tell which is which when looking into this drawer. There are three strengths of gabapentin (gab): 600, 800, and 100 mg. That’s because I have to take that drug every 5 to 6 hours. Because the CPS pain gets worse the longer I am awake, the prescription is designed to give me higher doses in the evening and at bedtime (1000 mg) as opposed to the morning and afternoon (600 mg.)

You can see some of the others. There’s “levo,” which is levothyroxine, a generic form of thyroid hormone replacement. I began to take that in the year after my son was born, because I developed Hashimoto’s Thyroiditis, an autoimmune disease, after the pregnancy. There are 20  million people in the US diagnosed with thyroid disease, and another estimated 13 million who haven’t been diagnosed yet. Do you always feel tired and run down? Are you gaining weight you can’t shake off? Is your thinking cloudy, as if you can’t focus? Is your hair dry? Get your thyroid hormone levels checked, especially if you are a woman. Why? Because one in six women have this disorder.  My mother certainly had it, especially after the births on my younger brothers one year and three days apart. She simply went to bed after that, and couldn’t get up. Her levels were never checked until she moved out close to 15 years later. After she was put on Synthroid (the non-generic form), she brightened right up and was able to work for almost thirty years. So be sure to get your thyroid levels checked!

Normally, it would bum someone out (as we used to say) to be told that they were going to need a pill a day, every day, for the rest of their life, just to be “normal” again. There is a tremendous sadness that comes over you when you are told something like that, because it means that your body is no longer a self-healing object With most illnesses, diseases, or injuries, we expect our body to be fully repaired after the healing process. Even if we need intervention in the form of antibiotics or splints, we trust that our bodies will be back to unscathed. This is the main factor of youth: the body is growing and repairing itself. The day that you are told that you have developed a disease or an injury that the body will  not be able to repair, and that will require daily intervention is the day you begin to believe that you are now growing old.

Of course, that day happens to all of us. If you are lucky, it won’t happen until you are in your senior years, after 65 or so. If you are truly unfortunate, it may happen when you are a baby or a young child. the whole “Parade of Muscular Dystrophy children” that used to be held at the end of the Jerry Lewis telethon  (“Look at us, we’re walking..”) was designed to open the pockets of donors because the sight of obviously crippled children is just so wrong to our eyes. It’s the old people that we expect to see using walkers, crutches and canes.We even have a somewhat superstitious belief that if we only have the correct diet and exercise enough, that we will be able to prolong our youthfulness. While it’s true that diet and exercise maximize you chances at health, they obviously cannot forestall problems caused bt genetics, environmental poisoning, and a whole raft of other issues that can rip away the body’s ability to heal itself.

By the time I was told that I needed levo every morning, I was already used to taking a pill everyday: an antidepressant. I tried a lot of different ones, since there were so many that were developed in the 80s and 90s. I’d started on amitriptyline back in 1980, the first time I was in graduate school. I’d lost my ability to write; I would sit in front of my beautiful Olivetti, and couldn’t put a word to paper. Each sentence that I attempted to type sounded stupider, both more ignorant and more cliched, than the last. My writer’s block got so bad that I ended up at the UMDNJ Mental Health Clinic, where they gave psychiatric residents and students the ability to practice their therapeutic techniques on real people. I was grateful for the help. That was the first time that I began taking an anti-depressant; the tricyclics were just coming into favor as depression-fighters. Later, there would be variants of tricyclics, and then  whole new class, the SSRIs. I took some of those, as well. Every three years or so, I would rebel against the need to take a pill to make me feel normal, and would wean myself off them. But in a year or two, I’d fall into a major, sometimes hospitalization-worthy, depression, and end up back on the antidepressants again. Finally, after my blow-out in late September 2001, my doctor told me that I might have to accept the fact that I would have to one every day for the rest of my life.

At that point, there was no fighting the number of prescriptions that were being written for me. In addition to thyroid hormones and brain neurotransmitter-affecting drugs,  there were also the drugs that I was being prescribe for the as-yet-unnamed auto-immune disease that I’d developed at the end of 1999. (That got me put on prednisone, which helped with some of the awful joint pain, but made me swell up like the Stay-Puft Marshmallow Man. (I eventually weaned myself off that horrid medication, when my joint pain flares calmed down.)  There were high-powered, prescription strength-only analgesics. Two years into the auto-immune syndrome, my blood pressure began to shoot up like a bottle rocket, and so even blood pressure medications became a daily addition.Today I take 4 in all.

Five years later, the stroke brought yet more prescriptions into my life: anti-convulsants, muscles relaxers, even more blood pressure med, prescription-strength potassium, and, of course, a nightly aspirin.. This year, I added a drug for my thalamic tremor. There are also supplements: SAM-E, Vitamin D, Vitamin Bs,Vitamin C, Chromium Picolinate, EFAs..

“Pill Day” is the day of the week when I must pull out all the bottles and vials, and distribute the week’s  dosages into the little compartments of the “pill keeper.” This is what it looks like when the task is completed:

 

 

It seems as if every week, “Pill Day” arrives before I know it. I often don’t recognize that i forgot all about it until I reach for the next day’s “strip” on my way to bed (have to have them at my bedside for the 6 AM partaking). Then I have to spend 8 or 10 minutes putting together the first compartment of the next day’s, at the very least. What a pain in the ass to fill all of these! It takes at least 20 minutes, and the palm of my left hand is dried out because of the dust from all of the medications it’s held while my right hand has been dropping them into the little boxes. But it would be an even greater pain if I didn’t have them. I wonder frequently about how to reduce the number. Could I be detoxed from the anti-depressants? Can I lose a few HBP meds if I lose some more weight? Will there ever be a cure – or at least a more effective treatment – for CPS?

I used to see people like me when I worked in the pharmacy as a pre-teen and teenager. (If you were old enough to do arithmetic, and tall enough to work the cash register, my father would use his kids as counter help.) They would come in to pick up big bags of pills. Back then, high blood pressure was mainly treated with diuretics, and depression with Librium, Valium, and Nembutal. There were a lot of prescriptions for barbiturates and amphetamines. My father would often make a comment about the folks who picked up the big bags: “She hasn’t got long,” or “His heart isn’t working the right way anymore,” or just “It’s the folks like that that keep me in business.” Nowadays, I know that pharmaceutical companies aren’t looking for ways to heal us, so much as they want ways that they can get us needing a prescription *every day for the rest of our lives.* One of the members of the FB CPS group, Tiffany, was explaining yesterday that she is only 27, and doesn’t want to have to take seven pills four times a day, seven days a week, for the rest of her life.

None of us do. But the option of not having them also terrifies me. If I were ever arrested, and thrown into a cell without my meds, I would die in screaming pain. The only question would be how soon. That is the truth for all of us with CPS.

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