OK I'm back confused as ever, but this time I'm not just defeated, I am angry as I write.
This post is about more healthstuff, so pass this entry right on by if this is becoming as old to you as it is to me. Earlier I shared some of my experience about the UDub Pain clinic. Despite my less than enthusiastic relating of events, somehow I sort of hoped things would be better, or different. I thought that maybe I was merely paranoid about my time and perception /memory of the 2 medical folk I met at the UDub pain clinic, and that it was within the realm of "normal" to not see the 3rd MD. I also believed that my Primary Physician would debunk anything that those MDs did say if there were disparaging remarks...well fool be me yet again [*thwaks* self upside the head...]! The following is pieces (not quotes) from their write up of our time together, and these are only some of their errors and misquote in their summary. Did you know they warned my GP to not be pressured by me into increasing my Rx and /or using opiates?
[...gloriosky, I am so persuasive, I can mesmerize my "poor Island Doctor" into doing my bidding, and my bidding is evil. As I look into his eyes, I compell him to do my bidding: "you will give me lollypops for my good behaviour"; "you will be available to me 24x7 and will give me a private number to reach you"; "you will not charge me a fee for a visit because you'll be so happy to see me"; "you will put woolies on the stirrups"; "you will prescribe a visit at the spa"; you will prescribe the 'Endless Pool'"; ...riii-iiiight that happens.] Did you know these fine men of science also alluded to, despite being unable to confirm anything, that I have a past history with highly addictive substances?
[Truth be known, and they were told this directly, that I am Rx (recreational or medicinally) phobic] And, did you know it's most likely that I self-diagnosed myself as having FM?
[Oh, yes, in '89 I just decided that this was the disease for me. How did I get a Dx of FM? Well, after going to multiple MDs, Orthopedic Surgeons, and assorted medical folks such as DOs, as well as physical therapists, it wasn't until I some how stumbled into Newington Children's hospital in '90, 6 months later, that someone gave my illness and pain a name, Firbromyalgia (which was until within a month of that visit formerly called was called Fibritis, incorrectly describing the disease). And, then about 4 years later, after another auto accident 3k away, after work was done on me by a DO and my symptoms didn't improve to the degree he expected, did he send me to a Rheumatologist, who did a lot of testing, and found I had Fibromyalgia (oh yeah, that wierd name again...hmmm)] Did you know that only recently did I feel the need for crutches due to balance? But, the smart MDs noted that, aha! I made it to the bathroom under my own power!
[of course they didn't mention the "head" was mere yards away, and that I still took one with me just in case.... nor did they ask how I started to use them because if they did, they'd know that my Rheum MD suggested that I try crutches PRN to keep me mobile. My mobility is priority, and I concur -- can you imagine my shame, Zoe Gillman, superwoman, warrior princess, type-a, pull-yourself-up-by-the-bootstraps, I felt having to use them in public?] Did you know that other than my shifting in my seat I displayed no significant pain behaviours?
[hmmm, I guess he wasn't paying attention when I said that BEFORE this combination of Rx I was in horrific pain, but SINCE I've started taking these Rx, I have been pretty much abdominally pain-free. Since these latest RX, I have been fuzzy headed and concentration and comprehension impaired, and there has been even a frightening loss of memory so that I really, really, really want to get off these meds ASAP] Did you know they think I should be put on methadone (this was their one "action item")?
[Methadone...that is for drug addicts isn't it? It's not used as a Pain medicine primarily is it? How will this help my coping with abdominal pain?] The first question asked of me was "what were my expectations of my visit today" at the pain clinic.
[My Primary Physician suggested I go, and referred me, my off-island Internist suggested I go, and referred me, and their very own director of GI at UDub suggested I go, and referred me, to this Multi-Discipliary Pain Clinic for their help becuase they can not identify precisely and cure what the problem is, and to go back in surgically for a look-see would create even more adhesions which might be worse for me in the long, and short, run -- they all concurred in this one aspect of my health] My answer to him, was I would accept being at a 5 pain level, on the 1-10 scale, if it meant I could get off these drugs completely.
[I thought this was a clear indication and a definite statement to them that I wanted to STOP taking these Rx -- i.e. I did not like them, or want them, and I found their side effects like memory loss, and increased sleepiness and so on and so forth, a difficult price to pay to keep my abdominal pain level this low, but that maintaining pain higher than a 5 would not be endurable.] I went there hoping for the latest and greatest that this Medical Facility boasts, and the humanity it proclaims to have -- the promises it stated in their brochures. I envisioned maybe trying some biofeedback, or self-hypnosis, or guided imagery, or some gizmo that puts the TENS unit to shame, or a new, still in the testing phase, drug to try...anything, just something ELSE, something to help me PLEASE -- migod it had been 9+ months already with no diagnosis but the ever-present IBS (aka a "waste-basket" dx which was nothing new in my TLA of woes)! DO NO HARM?
Doctors, listen to your patients please. Hear them. Listen to the answers to your questions. Be respectful, and if you have to assume something, assume that their reason for seeking specialists is because they need your help, your educated guesses to help them find relief. I'm sick and tired of being sick and tired. Thank you for letting me take up bandwidth to rant incoherently. PS The reason I am revisiting this mess, is because while talking to a neighbor today, who also has had to deal with pain, his doctor-related complaints dealt with guesswork and being a guinea-pig for the MDs until they found a Rx that worked (even though in this instance, he really *does* have a history of drug abuse, and it is not a secret [Note: I'm not suggesting at all that he's manipulating the system, bigod he has a lot of pain and thank god /dess he has some meds that help take some of it away]) but ask most women, especially of a certain age, if their doctor-related complaint regarding pain management is that *they* endure that guinea-pig treatment to stop their pain.
More often than not, she'll tell you that what she endures and hears, are euphemisms, or in not so many words; surely it's obvious that it's "all in your head"..."it's the change"..."it's hormones"...it's just her "machievellian ways to get more pain meds"...and we all know that when push comes to shove, what she really needs is a good f***! Pax
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