| Ok this is where I am... and I have tried unsuccessfully to write my "come back" entry -- re-entry? into the blogworld. Mostly it's because I have nothing really good to report, and a lot of sadness in my heart and soul for things as selfish and minor as my looks, to the broader spectrum of the world at war, and my knowing boys (men) on a personal level who are at risk...so, rather than tackle to world at large, I've chosen to write and purge and spew about the personal pity party, catching y'all up to date re: my piece o' the pie. As I've mentioned before, I've been in pain, excruciating, indescribable pain since last July ('03). I received a Dx of IBS, and told to take metimucil for fiber to get things moving...well things moved all right...I ended up in the ER, and later in the Operating table at WGH (Whidbey General Hospital) with a gazillion (well close to) stones in my Gall Bladder, and with laparoscopic surgery had my gall bladder removed. On coming home to recuperate, i6t soon became pretty obvious that somehow the surgery exacerbated the problem -- the pain was indescribable in my abdomen, and I was often left "praying to the porcelian throne god" ralphing, whoopsing, whatever...with no relief. I do not toss my cookies (wow there are a lot of euphemisms ain't there? )lightly -- it is not one of my typical symptoms in the first 50 years of my life -- something very strange was happening to my body. After multiple visits to the ER at WGH, (30 sounds about right) with two over-niters with a NG tube down my nose and into my gullet, and taking every combination of drugs that are probably on the market, I *think* that WGH emergency finally believed that I must really be sick after all. It's a high price to pay. I have had so many x-rays I probably will soon either glow, or come down with some new illness due to extreme exposure to the rads...hmmm as I write, maybe that's why my hair is falling out?!? Swell.... Well, I've had probably every test in the book performed, including the ever popular endoscopy and colonoscopy...I've taken in more liquids in preparation that I ever knew existed...heck I even swallowed a capsule of "sitz markers" (little plastic looking, dunno the actual material ovals) and split my pee in a jug marked biohazard and poison. I've had CT scans with contrast, I've had movies and x-rays taken of me swallowing vile stuff to see it move in my gut...it's been an adventure, nay, interesting time at best. I've been to surgeons who didn't do the laparoscopic cholecystectomy on me, I've been to a GI specialist off-island in a GI-clinic, and later at UDub (University of Washington), I met with the Director of the GI department. I went to a MD off-island at one point because I could never see my island physician regularly, and I was left with no one to turn to. On the plus side, it seems that all the experts agree that to go back in for exploratory surgery, the risks outweigh any benefits, so I think I'm safe from going under the knife unless something new develops and warrants a looksee. Of note, is that some time in february (late) I finally was given the correct combination of Rx to take the pain away. There have been some break-through moments of pain, but I have been able to cope using a short, but quick acting Rx. The bad news in all this is that it has taken a combo of narcotic Rx to do the trick. And...go figure, even though it helps the abs, I still have my FMpain, and migraines and the lot ... it makes no sense to me. Anyhoooo, the Udub MD, and my other 2 MDs all concurred that I should, at this point, go to the multi-disciplinary pain center at the U which is world famous -- these drugs I'm taking are really making my mind a mess -- I thought I had cognizance problems before, but there nothing compared to what I experience now...I even stutter on occasion!!! And memory is shot -- I'm probably experiencing what my Mother is going through. Dang! I was nervous about this appointment because I knew that one of their options requires 3 weeks at the U, which would mean I would have to rent a room there for the duration, as I could never hold up with travelling to and from Udub. But, I knew that they would be my salvation. They are the best. And the first appointment was to last 6 1/2 hours, meeting with multiple MDs. Here's a bit from their home page:
"We provide diagnosis and treatment for a variety of chronic pain problems, in addition to certain acutely painful conditions. Treatment goals focus on the reduction of disability and pain so that individuals can return to an optimal level of function in both their work and personal lives. The Multi-disciplinary Pain Center has physicians and clinical psychologists from six departments of the Udub School of Medicine, providing the ability to treat chronic pain conditions by specialists in anesthesiology, rehabilitation medicine, psychiatry and behavioral sciences, neurosurgery, family medicine, and rehabilitation counseling." They also sent me a slew of forms to fill out prior to the visit, as well as a diary, and the brochures were wonderfully humane. Despite my fear of the unknown, between my MDs and my records and films (x-rays) I knew that this was the answer, and that it would probably not be a cake-walk, but it would free me from the intense pain, and the narcotics, allowing me to have a life that is greater than the one I had been leading of late. I never thought I'd be happy to have my FMS -- but from this side of the pain, it looks quite green to me. Well, the day of the appointment came, Gordy drove, we were on the 4:30 (maybe 5:00?) ferry. Did I ever mention to y'all that I am NOT a morning person!!!??? Anyway, we get there with time to spare, and sign in, fill out more forms, and I am taken to a room for my day of examination. The first thing I had, was an opportunity to fill out a Acronym-laden report -- basically, the questions pretty much gave away the story -- it was taking a pulse on my mental health, with emphasis on things like am I a Psychotic, Paranoid, Schizophrenic? Some give-away questions were rating the following types of statements;
I like to tease animals
I like to hurt animals
People are against me
and on and on... I was tempted to mess with it, but I chose to be "the good patient" after all. There was a LOT of waiting that day. I found a pad of paper and I wrote down questions I wanted to ask the medical types (Question one being, what can I expect from this initial meeting?)...imagine my surprise when that was the first question asked of me. I first met with a psychologist(?) of what level I didn't know, but he wasn't a psychiatrist (MD). He asked me what I hoped to achieve. I said that I would settle for a 5-level of pain (on the 1-10 scale) if he could get me off the heavy Rx. He and I did not bond well. I answered his questions as best I could, but as I told him, I was a different person when I was in pain 4+ weeks prior, than I am now. And that to add to the mix, now that I am on narcotics, it has yet again, modified how I behave and how I think. He didn't absorb that information and modify his questions to encompass my particular dilemma. After our "chat" he met with Gordy to get his point of view. As I said earlier, it was a day of waiting a lot for people to come in. At least I found the "ladies" and knew my way PDQ. The next person to meet with me was an MD. We chatted a bit, he also touched me a bit, like had me do minimal strength things, and check my reflexes, and felt my abs. But I don't think I'd be far off the mark to say that he stayed with me for about 10 minutes. Before he left, he said that there would be another MD coming in soon. I was pleased when the next person to walk into the room was Gordy. By then, I was pretty much a basket case, and I could vent (read: cry) about the unprofessional experience I had with the first person. I've had my share of therapists, and my antennae is pretty good regarding them and how we relate (or not). Well, after more waiting, to our surprise, instead of the 3rd MD, the first 2 examiners du jour came in. They decided that I shouldn't use my crutches (real walk with crutches). That I should start a PT routine. That I go on methadone and stop my pain meds. My jaw dropped. Then, the first medico said that my pharmacology MD should get me off of the Rx he's had me on as well as he felt they were not helping me. I asked for options such as alternative methods to control the pain...I explained that when I "backed off" of the current pain meds, I felt the old pain, and had to use my other Rx a few times to get through the pain. It was obvious to me that, yet again, I found a bunch of medical "professionals" who think it's "all in my head". Give me a break! I paid my dues with fighting insurances and medical folks to get their sanction that what I have is real, FMS, not "the vapors", that it is debilitating and it won after the 2nd accident. Since my first Dx of FMS, it's credibility has increased enormously -- it even has criteria to diagnose it, and it has it's officially a DISEASE. But this abdominal stuff, every medical person up to this day at the pain clinic, acknowledged that there is something physically causing my pain. It only takes a couple of nay-sayers to break me down again in leave me second-guessing myself, and depressed and horrified that this is my new reality /quality of life (I use the term very loosely). So, tomorrow is finally my follow up appointment with my Island GP who has received their recommendations by now. I hope to god /dess that he has some plan, or plan of having a plan in mind, because I am worn out beyond words. I've not known this type of despair and depression for a long time (if ever). Seems like "they won". It's really really tough to even think of "pulling myself up by the proverbial bootstraps" this time. I'm bringing Gordy with me to this appointment -- he'll add credibility by stating how he perceived their total avoidance or lack of words speaking to the abdominal pain and possible solutions /resolutions. I really don't know how to cope with a future if it means that this is as good as it gets. I pray that there is still some path ahead of me to try. I've missed so much these last 10 months. I haven't been able to play with Robyn or Mikey like I want to, and now there is Thor (ok, I mean Evan) on the way, and in what, if any, capacity will I be there for him? I've not been "there" for the kids when they moved, or needed rides, or a baby-sitter. I've had to blow off family events. I have not been able to take the "Rainy Day" out, I couldn't attend my Nephew's wedding (even though I had tickets purchased already for me and Gordy -- only to lose it all) and to top the end of the year off, I even missed Christmas and New Years! I don't know when I was last at a TestingTesting taking snaps, or at the theater or a movie. And even yesterday,my birthday, went totally uncelebrated. I live on a postage stamp, aka my bed pretty much. It wasn't until I took the plunge and purchased a laptop did I start to be able to join the world and socialize on some remote level. I'm so defeated and so exhausted and afraid. And there is no one who can speak up for me. No one who knew me before FM to mourn what I've lost, and who I used to be -- a type A, workaholic, overachiever, size 6, tennis playing, martial artist, hiker of the red-rock canyons, swimmer and jogger, shoot the hoops that's why my basketball is in my Jeep next to my frisbee and tennis racquet, do photography, work on movies, crew for hot air balloonists, drive for hours with the top down and the music playing, skiing, spa-goer, travelling kind of gal who read voraciously and was independent and successful in work and play. She's gone, heck she started leaving in '89 after the first auto accident, and bits and pieces fell off along the way until here I am, crying my heart out at the drop of a hat because I have no life, no energy, no future, no fun. I really hope that tomorrow, Dr. Waite has some thoughts about what I can try to heal. UNCLE! Olly Olly Oxinfree! There's no place like home!!! Look, I'm throwing in the towel! I most humbly ask for HELP! PLEASE!
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