exactly that

Moderatrix’ note:  I wrote this on 16 November, 2008.  For some reason I thought I had written it here and I did not.  I am sharing it now, because I want to show how disability and medical care intersect with Military and Veteran’s issues.  Something I want to bring attention to is just how difficult it is to get continuity of care as a Veteran, and the challenges involved in getting disability from the Military or the VA.  If I had a way to work in the system to improve it I would take the opportunity.  For now, I will work on bringing awareness to the topic.

Thursday I met w/ a new Primary Care Manager.

This is my fifth official PCM in about three years. I have also had several other general practitioners b/c each of those PCMs was either retiring, deployed, or otherwise unable to treat me. The most I have seen any of them is about five times. I have also in that same amount of time been seen by two Psychologists, one Psychiatrist (b/c it’s all in my head, yo!), a Chiropractor/Kinesiologist, a Physical Therapist, two Neurologists, a Rheumatologist, and a Dietitian (b/c if only I wasn’t a big fatty I would feel better!).

I have been on Vicodin, Oxycodone, and at least three other narcotics over the last three years, no less than five sleeping medications, two allergy meds (for inexplicable rashes), three different anti-depressants, two anti-convulsants, any analgesic that is available, and five medications that hadn’t been available for more than a month.

I have been over medicated, under medicated, drugged out of my mind to the point where taking all of the pills in my cupboard sounded like a good idea (but I didn’t, I flushed them and got help instead), tried herbal remedies, vitamins, supplements, diets, and countless other suggestions. I have tried hypnotherapy, electroshock therapy, heat therapy, cold therapy, and physical therapy.

I have been poked and prodded, had my blood, urine, stool, and everything else checked routinely all to be told it was “inconclusive”. I have had so many X-rays that the corpsman thought I had been in a car wreck. I have had CTs, MRIs, and something similar that is purely vascular. If there is a way to image your body internally, it’s been done.

I have been called a drug seeker, told it was all in my head, told I was just depressed (but who wouldn’t be w/ all of this shit going on?), too fat, or that there is no answer.

I was medically discharged from the military.

I can’t handle being on my feet for more than a few hours at a time.

But Thursday, a doctor listened to me. He said from the looks of my record it would seem as if they are trying to get rid of me rather than try to treat me. He finds if foolish that they would shuffle me off to psych rather than try to actually improve the quality of my daily life…and says that the way they are shuffling me around that sooner rather than later I am going to labeled a drug seeker (me, who has refused narcotic treatment for almost two years b/c of fear of that label and the first time someone accused me of it…I just want to be able to move) and no one will treat me.

That’s reassuring.

So, Monday I get to go in for yet again another round of labs, b/c I haven’t been poked w/ something sharp in about four months. I got a referral to the same Rheumatologist who first said I have fibromyalgia, then refused to write it in my medical board write up so the Navy didn’t have to be accountable for it (that VA claim is getting on it’s way). He’s the same guy who told me it could be anything including PTSD (PTSD?!?), so it can’t be anything. But then I get to go back to this new doctor, who at least seems to be listening (put me back on the one anti convulsant that helped*, but didn’t forget to remind me that if I could only lose weight…), but he did remind me that he shouldn’t be treating a chronic pain patient. Funny, when I had to request a new PCM, I told them I needed someone to treat me as a chronic pain patient…

So, that is where it stands right now. No relief, no news, basically square one.

I will say, however, that it is nice, that when shit hits the fan, that I am able to find out that I really have good people who care. Thanks to all who have shown concern and kind words. You all rock. I learned some tough lessons this year, and have come through better, if not yet healed, due to it. If my body is continuing to fail, at least my soul is feeling better for now. I know we all have shit going on, but it is nice to see that people are able to reach out to each other when those who matter need it. You rock!

_____________________________________

* I am no longer on that medication, or the Lyrica that I was browbeaten into taking, as there is no Rheumatologist available where we live now, or Neurologist.  The closest thing I can get is an appointment w/ the Sports Medicine Clinic, which I will try as soon as I am no longer stranded in Japan.  The Lyrica is not available in the Tricare formulary, and has to be bought and paid for in the civilian sector and out of pocket.  I wasn’t even able to get enough to overcome the side effects (which I usually experience heavily) or to even see if I would benefit from it in any way.  The anti-convulsant (Toredol) is the single most effective drug I have been on, despite the side effects, for keeping away my as yet unexplained Not Migraines.

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Comments on: "5 docs, 3 years, 2 psychs, 1 day in the life of…" (10)

  1. But have you tried (insert bizzare treatment here). My (insert distant relative or friend of a friend here) tried it for (insert totally unrelated illness here) and it totally worked!

    Look- it’s a mad lib! For concern trolling! Wheeeeeeeeeee

  2. […] should have occurred to me sooner, having had my career ended abruptly by my body’s sudden yet (seemingly) inevitable betrayal.  There is great privilege in being able to serve in the US Military.  For starters, you must be […]

  3. Not to fill in the internet troll mad lib, but I noticed acupuncture wasn’t on your rather exhaustive list. I know they practice that in Japan as well as China, possibly under the community model so it’s not expensive. Fibro is one of those things I’ve read acu helps, so it’s just a thought.

    • I have considered it. I have a deep and irrational fear of needles. I have gotten to where I can have blood drawn w/o passing out. IVs still freak me out unless they let me decide where the input goes. I haven’t yet managed to wrap myself around letting someone just stick pins in me and leave them there. I really want to try it though, because bfp makes it sound sooooo very wonderful.

      • Yah. I’ve watched Trav do it for four weeks now and you know it doesn’t look that scary. I have a deep an irrational fear of needles too, I cry every time I get a shot or blood test. But I think if I had any real health issues I’d give it a go because they really don’t seem like that could hurt… Like, have you ever gotten a little splinter that you didn’t even know was there until you look down and see it poking out of your skin? They seem small like that. I dunno though. I haven’t actually tried it, because I don’t have any real health issues and now I’m keeping watch over Trav but, yeah.

      • I do not understand this fear of needles. They aren’t huge, more like sewing pins.

        But then I’m the girl who won’t let her bare feet touch grass so :P

        • For me personally it is partly the pain of it (no matter how many people say I won’t I DO ALWAYS FEEL THEM) and also a big psych part of BODY INVASION. Like I feel like that’s what my mind is screaming through emotes at me (INVADER! INVADER!).

          I’ve always linked my fear of needles with my fear of knives used as a weapon and rape. Bodily violations and things being stuck into me that I don’t want there and power power power being used against me.

          I’m sure part of that is that when I was a kid I was scared of shots cuz I don’t like pain and despite kicking and fighting the doctors my mother held me down and made me have those shots even while I fought. Certainly didn’t teach me much about my bodily integrity, I’ll tell you what!

          • Oh right I went off on a tangent… I’m still considering acu because while I definitely have that response to needles they at least are healing needles, and like you say, very small and thin. They would be going in not because I felt it was demanded of me to let them be put in but because I wanted to help my body do it’s healing work better and have better communication with itself. So the psych part, I think, is almost reconciled. Now it’s just 1) history of experience with needles and 2) fear of pain that are holding me back. :P

        • I totally get that

          I had a spinal as a toddler, and I was held down by a nurse to keep me still for it. I think that made me afraid of needles, and also potty trained me. I had been toilet training, and had to wear a diaper for the procedure. After than I refused to wear one ever again (which also terrified me when I had kidney problems as a child a few years later).

          To me, it is an invasion. It feels so wrong to have something forced into my body like that. There are things that can be done to alleviate it. If it is an IV they have to put the needle where I tell them to (the back of my hand). You would be surprised how many people fight me on this (it hurts more there! Your arm/wrist/elbow is better!). If it is a blood draw they always argue about my veins (like they haven’t been mine for almost 30 years). I have to have a butterfly needle for any thing, even though my draw veins are very deep, which makes it easier on me but the techs always insist it hurts more (how the fuck would they know?), and putting the tan colored wrap instead of tape or a bandaid helps the site not aches when I take it off. Fortunately I get blood drawn enough to know who is a good shot, and I am not afraid to demand one corpsman/medic over another. My preliminary testing for my abortion helped me get quite intimate w/ the lab staff.

          The fear has helped me demand that my body is mine and that I am in control of that aspect of my care.

  4. Sweetie, have you had your inter-cranial pressure checked? They need to do a spinal tap, and that does have a big freaky needle, BUT if you have increased inter-cranial pressure, then that would cause the NOT migraines, that don’t show up on imaging scans. It’s called pseudo-tumor, it usually takes years to be diagnosed with, causes massive pain and nausea, and my mother has it.

    If they haven’t check your pressure yet, MAKE THEM. This could be the answer. The problem is, there isn’t really anything they can do to make it better hun. They can put a shunt on your spine or in your skull, but they have a high failure rate and the surgery is of course very dangerous. Pain management and anti-vomiting meds. Other than that, pray, and enjoy your family.

    Just read through your NOT migraines post, I suggest going to your MD and demanding a spinal tap to measure your inter-cranial pressure right NOW. The symptoms you describe are pseudo-tumor to the fucking tee. Here’s a medical link about it, so you can read up on it yourself and decide whether the symptoms match, but I implore you to head to a neurologist and get a tap done. Link:http://www.mayoclinic.com/health/pseudotumor-cerebri/DS00851/DSECTION=symptoms

    Also, the disorder is “related” to obesity, and apparently weight loss “makes it better.” I think it’s horse shit to say that. What you think being unable to move would keep people skinny? The problem is it often takes years to diagnose, and by the time it is, people have gained weight from the pain and inactivity. It’s also more common in women around child bearing age. Steriods will only increase the pain and pressure, as does intake of fluids.

    If ANY of this sounds familiar or like something you deal with, then please please see a doctor. A shunt might be needed, and when they work, the pain DOES go away.

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