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Someday would love to be respected and heard by a MD. Have been on a new journey thru hell. 4am started my 9th day, today. The medical pain community in the ENTIRE FLIPPING state of OREGON decided unilaterally, after a couple min review of 15yrs of med records and a one minute seated, physical exam, that my pain management regimen created after Four Years of Intensive medical treatments, trials and tribulations, that I should discontinue ALL my pain meds. Ready for this? At home with Sue, and NO supportive meds to ease endless N & V, muscle CRAMPS!, etc. OR ... We could drive six plus hours to a hospital in Portland. My limit on sitting is very short. I would be there without my partner of 25 YEARS, and my therapy PTSD dog! Hmmm ... First, thank GOD for Sue, 25 years holding my heart. Secondly, thank GOD, we are both Retired RN BSNs. Sue did Operating Room, Training Surgeons, Medical Liability and then Hospice. I did adolescent nursing with the CO correctional system. When I could no longer warehouse children who were simply learning bad skills from other kids, I left. I got hooked working with a fantastic PC MD, Adult Psychiatrist, Pediatric Psychiatrist, two other RNs and an MA. We cared for about 100, dual diagnosis clients - developmentally delayed WITH at least one psychiatric diagnosis. Like schizophrenia, psychosis, or simply, simple. They were all 'kids' ages 10-62. One 12yo boy wanted it to rain. He climbed our historic three story enormous building, so he could pee off the roof and make it Rain. Yup, as the DON guess who gets to get hands on? Yup, I really did love my job and team. One 13yo had a bad day at school - it was part of our campus - so when he got back to his dorm he put it arm through a plate glass window severing an artery and removing all the flesh to the bone. My office/clinic was a 90 second sprint away. No flipping safety glass in any dorm windows due to cost. But every dorm had two padded, locked 'rooms' for the kids who needed 'time alone'. Still can't think of a kid that needs to be locked in a padded cell for mental deficiencies that my medical team could manage with proper meds AND a Plan of Care. I digress.
Sorry I'm very angry. My point was .... thank GOD, that we have the backgrounds that we do. I was forced to stop all my pain meds. We tapered me down quickly for four days and I was tolerating the physical symptoms with anti-nausea meds, Benadryl, Tylenol, and an extra sleeping assistant pill. I was sadly unaware of what day 6 thru today, day 8, would entail. First, I ran out of prescribed anti-nausea/vomit meds AND no one will write a prescription because I don't have a primary care doc. Why? Throughout this entire state people, like us, have been on waiting lists for a primary care doc, for four to six Years! So we self-monitoring people use Docs/NPs/PAs in oddly supervised 'Walk-in Clinics'. No continuity, humanity or basic human decency is offered. We had a Doc for the first six years we were here. Sadly her dear father passed this past Dec. While she was briefly in AZ getting her mom settled, the Doc she leased the practice from, sold the practice and "stole" 60% of pts. The easy pts. In my personal opinion, a lying, fraudulent practice group took over, very selectively. They say they're an 'Urgent Care' Walk-in clinic. Only one PA and one NP on site at all times! FYI - PAs CAN NOT WORK without an MD or DO, ON SITE, in OR!!!!!! So the flipping new PA decided he had told us one too many lies for his own good, and as I walked in with Sue for my every 28 day, 75minute drive each way, appointment, he handed me a letter that said See Ya! "I refuse to treat you any longer.". No legal recourse at the moment as OR covers there own providers with 'grey' areas. Human beings needing medical care have policies and procedures they MUST follow. However, the oft understaffed, undereducated are lacking All compassion. ERs are our emergency option and Walk-in Crap Clinics for anything you can wait at least two hours to be seen for. No prevention screening or monitoring. Sooo when the little PA decided to dump us, we no longer got refills. After having my State Case Manager, State Insurance RN, and Medicare all struck out finding any doc to take me on. It was suggested we move or drive 6+ hours to a 'Clinic' in Portland. Sue found ONE pain mgmt clinic in SALEM - 4 hours - who said he'd work 'with me'. First appointment ...... Stop All your meds. ALL? Why? Because he's not a primary care doc. So I'm to pee in a cup then go home and take myself off all my meds. FYI I required an emergency hysterectomy at 28, ergo why I'm / we're sadly childless. Was never told why a UA was needed. Can't be pregnant. 25 yrs ago when we tried to adopt we were told we could not live together. They'd rather have a single mom and day care than two queers raise a kid that has no one. But again I digress. So the walk-in clinic here, after Sue took my records in and spent hours talking in circles with them, agreed ever so graciously, to see me. But as a walk-in and Only because I'll die if the rest if my meds are stopped suddenly. One NP with MD approval, agreed to write me 90 days of non pain meds with refills! But no pain meds, N&V meds, or anti-muscle cramping/spasm meds. teal color pieces for formal occasion
So Today, as I woke to morning NINE, at 0400, stumbling to the potty with a trash can in my face, I had a hunch it might be a bad day. I'd actually gotten almost 4 hours of sleep! Last night was pretty bad. Anyway, by 0800am I was rattling the rafters and begging those I love and miss so dearly in Heaven, to Please take me with them. Sue, My Dearest Love, cared for me as an Angel cares for a child. For six straight hours she fed me any appropriate med we could think of, held the bucket, wiped my face, promised me I'd make it through and held my hand as I cried in pain until I was hoarse. At this moment I'm not moving, therefore I Only hurt, like I was run over by a train or three. I'm not out of the woods yet. Our "advanced" first aid bag is holding its own for this moment. I'm terrified of what is to come but I've not been given great choices. There is no plan in place for when my body surrenders the last molecules of my previous, QUALITY of LIFE giving meds. Perhaps the Medical Community feels it's better to have no life without appropriate medicine, than it is to have some life with medicine. Nuts. Nuts. Nuts.
I'm not alone in this plight. There are many, many human beings all over the US who are being FORCED to stop their pain meds. From all that we read, it's better to taper off pain meds than to take the medicine offered to "get you off", because that medicine has more potential for serious health risks and if stopped abruptly, will likely cause death. Not quick either. It's like the days when my psych profession was putting all the junkies on Methadone. The great cure all. Do you realize Methadone is just like morphine but highly addictive and we still have hundreds of thousands hooked on it? Remember when Prozac was the Great Happy drug, until thousands committed suicide or whacked out? Now the pharmaceutical companies want old tried, true and CHEAP Morphine, Valium and Phenergan replaced with new drugs that were fast tracked with 29wk trials and released to the public to be guinea pigs. WHY? All I can think of is money. Docs get expensive incentives to prescribe certain drugs. Pharmaceutical companies can charge huge prices for a few years, to recoup their costs, before a generic brand can be made. Who OBJECTIVELY, is insuring the Optimal Health of ALL Americans? It's scary. You are all only one injury, surgery or illness away from being in the same dangerous situation. PLEASE Find a GREAT Primary Care Doc while you're healthy. Do ALL Annual Screenings and keep your relationship open and mutually trustworthy. As night nine and morning Ten approaches, any good wishes are welcome. May GOD, family and friends bless all of you fighting your own battles. Enjoy