Living in the Pharmaceutical Hell of MD

I find it staggering how many people are openly critical of the number and types of medications I take to manage my Dystrophia Myotonia D-PROMM Type II condition. Stop it. It's easy for you to say, when you have zero medical issues, sleep like a baby at night (this does not mean that, like me, you woke up every two hours and cried), have a slender figure and feel great every minute of the day. No. You clearly have no idea what it means to live like this: to know you'd be bedridden and unable to do anything, really, without the muscle relaxants and the pain meds. When you do live in my specific brand of hell, then yes, go ahead and criticize. Just keep in mind, you have to have the exact same condition, the exact same complaints (everyone with this will tell you that none of us exactly mirror the next person's symptoms), and progressed to the exact same level and problems. THEN, and only then, do you get the right to bitch at me about my medication list.

The actual fact is that while it is a lot longer than I would like, they are all just for this condition, nothing else. This is reassuring to me. My mother, who has MD as well, also became the world's premier hypochondriac, which really made me crazy, and would call the doctor, tell him she needed to be on this or that drug, and the doctor would just say okay and call it in or whatever. You need not say it - I've said it all already. She took scores of meds and for conditions she read about and suddenly - lightbulb! - she has this! Time to call and add another pill to the list...

This is not me. What I take, I have to take, just to live. (Let me be clear, here, as a simple misunderstand                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                        ing here could really be disturbing. If I don't take the medication, it will not mean the end of my life in the sense of having a heart attack or a stroke or something of that nature. It means that I won't be able to live a full life: I won't be able to get out of bed, or drive, or shop, or do anything at all around the house or outside of the house. My hands will become claws and I will have trouble opening or closing them. I would go from a mobile existence to an invalid existence and this, to me, is not living. So, while I'm not looking to get to a point where I can climb mountains or traipse through the jungles of Costa Rica, or scale Mount Erebus in the Antarctic. That might be pushing my luck... forget that, it is pushing my luck far more than I should even consider. I read enough great books that I can be transported and do there anything I'd like at all - without leaving my belovèd hammock to do it!

But yet, people who know nothing about my condition, what I experience with it, well, they all suddenly know that they have the simple, chemical free way for me to go. Just like that! Guess again, hot spur. You are not a medical anything. Heck, I can't find too many doctors who know much, let alone anything, about MD, except that it kills small kids (this is Duchenne's Muscular Dystrophy, otherwise known as "Jerry's Kids", because Jerry Lee Lewis took this on as his special area to promote. Jerry's kids doesn't apply to me, I have one of seven different kinds of adult onset MD). Yes, suddenly feeling you no longer have a dog in this fight? (That's just an expression, fellow animal lovers, so get the hackles back down...) This is because you don't. And trust me when I tell you that I have tried everything under the sun: massages (which help, but work in conjunction with my meds), acupressure, acupuncture, herbal remedies, meditation, yoga (again, very helpful, but it is not a cure; more like a palliative - it will slow the progress down), etc. I wouldn't go so far as to buy snake oil but I've gone as far outside of conventional pharmaceuticals as I dare and be comfortable about it.

Just keep this in mind the next time you wish to "help" someone by criticizing what they take to feel healthy. They may get revenge on you when you least expect it.


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