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Sorry for the missed updates last week. As an explanation, I offer you a sample of last week’s schedule:
Monday: AM medical appointment, lunch, PM medical appointment
Tuesday: Breathe a sigh of relief because I don’t have any appointments. Make a few calls to schedule things.
Wednesday: Acupuncture.
Thursday: Spend an hour on the phone figuring out health bureaucracy, have a semi-panic attack, and get documentation in order. Call doctor at 9 pm to get advice on dealing with anxiety.
Friday: AM medical appointment, spend several hours sleeping everything off. Apply ice pack to foot every few hours.
Saturday: Go to a wedding.
As you can see, it was kind of a never-ending saga of appointments and phone calls. Not to mention an emotional crisis of sorts over what it means to have a “disability,” and feeling like I was going to spend my life going from one appointment to the next. Just as a reassurance – things are looking up now.
Updates may be slightly scattered for awhile, as I have a lot of appointments to go to. Blech.
I feel like their is a war waging on the battlefront of my body. I’m not talking about the pain or fatigue I feel from fibromyalgia. I’m not talking about migraines, or mood disorders, or any of that.
I’m talking about the way medical providers (“Western”, alternative, and complementary), the media, drug companies, and even sometimes people from my everyday life try to co-opt decisions about what the best treatments are for my body. Often, they don’t agree with one another. Then I’m left stranded, trying to figure out what the best course of action is. It is not therapeutic, and it doesn’t help.
Some (not all) “Western”/modern medical providers are all about science by the books. I think fibromyalgia threatens them, because the diagnostic tools basically involve ruling out other things and then poking the patient in 18 places. If 11 out of the 18 hurt (divided in certain sectors of the body), then it’s fibromyalgia. Even though fibromyalgia has been documented as a real condition in countless places – and new clinical data shows that fMRI’s can pick up signs of fibromyalgia in the brain – many doctors are only now accepting that fibromyalgia is a real condition in the way that arthritis or diabetes is.
“This is the crux of it, the reason more than a handful of physicians have such disdain for FM and its sufferers: they don’t know how to see it, how to measure it or how to effectively treat it. In short, FM is a mystery many physicians would rather not contemplate…. ‘As treatments have been developed that work fibromyalgia is being more widely accepted as a legitimate, scientifically credible disease.’ In other words, FM might become increasingly viewed as legitimate because physicians are becoming better able to do something definitive to attenuate the suffering.”
These are the words of medical doctors (MDs) who practice/research at Johns Hopkins and the University of Michigan. Wait, wait – the people who diagnosed me with this syndrome might not believe that it’s real? When I was first diagnosed, my rheumatologist basically gave me the following prognosis: you may never be able to work full time. We don’t really have any medications for this. Physical therapy might help. Have a nice day, see you in six months. (Note: I do not see that doctor anymore, and have found much better ones.) I did end up going on some medications that seem to help, which I’ve added to my cocktail of mood disorder medications.
Physical therapy most definitely helps, as do other more “alternative” or “complementary” medical practices. Reiki, light touch massage, integrative manual therapy, meditation, healing drumming…all of these things have helped enrich and improve my quality of life. They also help alleviate mental and physical suffering.
The problem is that there are skeptics in both sides. Western practitioners often don’t “believe” in reiki, because of lack of clinical trials. The same goes for a lot of other alternative/complementary techniques. And a lot of people I know from the alternative community have their own prejudices against Western medicine. There are too many side effects, it’s too intrusive, the drugs often do more harm than good. I am not saying that alternative medical practitioners urge me to go against the advice of my doctor. But when I tell people the medications I’m on – it’s quite a cocktail – there is sometimes a general pursing of the lips. A certain look in the eye that says, “I wouldn’t take all those chemicals.”
Ah yes, the Great Medication Debate. Western doctors often don’t like to prescribe pain medications, as they can be addictive. Emergency room doctors sometimes treat fibromyalgia patients as though they’re drug addicts. As already mentioned, alternative medical practitioners have their own skepticisms about the effectiveness of prescription medications. Meanwhile, I run across the occasional friend who says something glib like, “I really don’t like taking medications.” Guess what. I don’t like taking them either. I take them because they help, even though there are sometimes really terrible side effects.
So what’s a girl to do? I’ve received positive help from medical practitioners from all practices. I’ve also received some care that just hasn’t helped. My social support network is, for the most part, very supportive.
You know what would be really helpful? If I didn’t have to defend one set of medical practitioners or traditions to practitioners of another tradition. If they worked together, and I received holistic advice that integrated healing modalities from a range of traditions.
This is my body. MY body. If you are going to be my medical provider, treat it with respect. Please leave your personal baggage at the door.
(Note: I’m not targeting this at a specific person. So if you’re someone I know, and you’re wondering if this is about you, it’s not. ^_^)
When I was first diagnosed with a mental illness, I had the general mindset that a doctor would hand me some miracle drug and everything would be better. (After all, those Prozac and Zoloft commercials seem to imply something of that nature.) I quickly found out that finding the right medication is a trial-and-error process, and that it usually takes about 6 weeks to find out if one medication works or not…and then you have to decrease it and take another one. My psychiatrist – thankfully – used a very scientific method of only changing one thing at a time. That way, he could tell it was the Topamax that made my face itch, and not some other drug. The whole process took about a year and a half, and oh what a ride that was. But that’s another story.
I learned that while medicine can help, there is a lot of patient-managed care that needs to happen. Even though I have my medication cocktail sorted out, I still need to take my medication, practice coping mechanisms, notice when I’m having a flare up…
I guess I’m just used to having conditions that no one can really fix. Migraines, IBS, Bipolar Disorder, Fibromyalgia…fun little labels that mean I get to spend a lot of time on medical issues, going to the doctor, stretching, and trying to keep my body and life in balance.
So imagine my surprise recently when three medical treatments seem to have just worked. Like, really worked. (I hope I’m not jinxing anything by saying this.)
Treatment one: occlusal guard, or night guard. There is conflicting evidence about whether or not night guards can help night-time teeth grinding. Some people say not to use them if you have sleep apnea or other sleep disorders. (I suppose fibro might fit into that category.)
Still, I have a pretty bad time when I grind my teeth. It’s usually when I’m stressed, and I end up with a lot of jaw pain that often leads to migraines. I was a little skeptical, but since my insurance covered the night guard – wonder of wonders – I decided to try it.
It took a little getting used to, but I’ve slept better than I’ve slept in months – years, even. I’m not saying that this will work for everyone, but I think that grinding my teeth was probably causing some sleep disturbances as well. It is wonderful.
Treatment number 2: my wonderful, wonderful podiatrist gave me diluted alcohol shots to help with my Morton’s Neuroma. The shots are supposed to help break down excess tissue build up to relieve pressure on my nerve. I’m not sure exactly how it works. It seemed to get better at first – although my foot was still numb and tingly, but at least not in horrendous pain. Then the pain came back for a few days, and I was really worried I’d have to have surgery. Now, there is an occasional pang, but the pain is almost completely gone. I’m pretty sure that after a few more treatments I will be good as new. (Again, hoping I don’t jinx this.) Having a medical issue that’s treatable is just amazing to me.
Treatment number 3: custom-fit orthotics in my shoes. I suppose this doesn’t actually count as something that *poof* makes a problem go away. But I now have orthotics in my shoes to help provide extra arch support and deal with my flat-footedness. They make such a difference. I’ve even gotten an extra pair of shoes to wear in the house (ones that aren’t dirty on the bottom) so that I can wear them all the time. My feet hurt less, and I feel more in balance.
I guess these experiences have restored some of my faith in the medical profession in general. Not that I discounted medicine before – I’d just begun to expect treatments to only half work. Or to have a medication that works, but has horrible side effects. This was a pleasant surprise.
Healing: Taking the Road Less Traveled 