Day: August 21, 2008

  • because I'm falling down

    I had a bad day yesterday.  Normally I reserve the bad day stuff for my private blog.  But I've got a handful of friends out here who would probably appreciate me saying what's going on.

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    If you made it through the Treat Me Like An Athlete post a few days ago, you know my insurance is pulling a loophole on me, I've had allergic reactions lately to a couple more key meds, and I'm dealing with the idea that the pharmaceutical industry, insurance companies, and the medical field are enabling a severe prescription medication abuse problem on top of chronic illness and the resulting depression, which are hard enough handling alone without also having to practically go into rehab.  Boy, that was a long sentence.

    After 20 years of dealing with *stuff* while I managed to get my college degree and hold jobs, I had to make some pretty tough decisions this summer about how I'm going to keep surviving.  And this last year has not just been a turning point, it's been a very eye opening disaster full of one big problem after another.  This summer is a culmination of me getting pissed off enough to start standing up to the way U.S. corporations dictate how doctors have to handle long term chronic patients, and what I'm doing in my own life to walk away from that.

    So here's the down and dirty.

    I received my official permanently disabled handicap placard (hang tag for my car) on August 15th, just ten days after my 15th anniversary, and during the 2008 summer olympics in China.  The irony hit me kinda hard after 20 years of fighting against being labeled disabled.  (Kewl, that rhymed.)  I am no longer considered ambulatory beyond 50 feet without having to 'stop and rest', which for me means nearly having to lay down on the ground for 15 minutes.  The same day I received the hangtag, I was valiantly trying to keep up with Scott in a Penney's store, where he was buying a much needed pair of jeans during a back to school sale.  A softlines associate noticed I was having difficulty (I get VERY slow, and lose my balance a lot, I have to hold on to Scott or a cart as I walk through stores) and offered to get me a wheelchair.  I'm not even 50 years old yet.  I've known for 20 years this was coming, but it was still a shock for it to become real, and once out of her sight I lost it.  Once I was able to stop crying enough to talk (I'm aspie, I freeze up when the tears roll), I asked Scott if I really looked ~that~ bad.  He said yes, I really do look that bad.  When the fatigue hits, I look like death warmed over, and it doesn't take long for it to hit.  People tell me my face drains and I look super white, even with makeup on, and they can't help telling me this.  I scare people.  I scared my physical therapist the last day I was there.  So I have to face it- if I wanna hang out with people while they shop, I need to be in a wheelchair.

    So yesterday I saw my psychologist.  I go once a month now.  I am nowhere near clinical depression, but I still deal with the impact of constant illness and living with facing the disability now, on top of still learning how to socially interact more successfully because of the Asperger's.  He said I was making some pretty powerful statements about sanctioned medication abuse (I have been on handfuls of *everything* over the years) and how I believe that until the medical community admits that the fibro/depression/medication combo really does kill people, and as long as insurance companies keep dictating the limits on health care (as in being more likely to spend tens of thousands on back surgery, but no more than $1000 a year on physical therapy, chiropractor, acupuncture, and massage combined), chronics are screwed.  As long as corporations keep pushing poor nutrition for sales (I speak specifically of coke and pepsi products here, and any other company using high fructose corn syrup, which nails me to the floor) and as long as uneducated people keep supporting it, chronics are screwed.  As long as the medical field's hands are tied on being autonomous and caring for long term patients, chronics are screwed.


    Then we talked about what I've studied this last year in terms of viral infections and their long term effects.  I'm not just some health nut reading alt treatment from tv doctors selling something.  I'm educated out my ears, I am very good with technical data, and since I'm so experienced at being a 20 year patient, I feel I'm qualified to study and assess this stuff.  I understand the blood tests they do, I've actually been trained how to write a medical report in college, stuff like that.

    Some of you know I carry antibodies for a number of weird stuff, including lyme, epstein barr, bartonella, lupus, CMV, and a weird little herpes virus (there are thousands) that lives on the 7th cranial nerve and activates into Bell's Palsy, among other things.  The problem with blood testing for these viruses is that simply seeing antibodies doesn't tell you whether or not the patient is in active progression.  Some of the tests come with titer scores, but like with lyme, unless your titer is high enough (even being initially positive) to warrant pursuing with another test for actual diagnosis for an actual disease 'process', you're screwed.  While doctors in Sweden and Canada and other countries are actively treating advanced lyme, the U.S. is essentially ignoring the fact that there is latent progression for many years, and by the time there is enough damage to be seen on an MRI, it's too late, you're screwed.  Because lesions throughout your nervous system (and brain) are no fun.  Same with epstein barr, it can actually be pretty serious IF you are one of those people who keep having complications, but unless someone is actually tracking and studying your health record, all this stuff gets lost in the paperwork.  So I've come to know my little viral buddies pretty well, and I know that they can all cause some serious complications down the road, leading to DEATH.  Oddly, having a multiplicity of these all in one body doesn't seem to ever have been studied...


    But as long as we are categorizing fibro and lupus into separate *non* terminal issues and ignoring a conglomerate of viral antibodies all piled into one host, I'm pretty much just another 'healthy' looking person getting a disabled hang tag because I'm lazy and pending for a court case because I don't feel like working any more.  If you are not familiar with chronics and terminals, there really are people walking through parking lots out there who REQUIRE that you limp out of your car if you display a handicap tag, because if you don't have a visible limp or deformity, you can't possibly be having a 'real' problem, such as a lung disease, heart complications, myofacial (muscle) pain, cranial nerve damage, whatever.  I even had a nurse tell me to my face I was AMBULATORY and the doctor would NOT give me a hangtag, but it was ok for her to have one because her 17 year old son has the mind of a 3 year old.  I'm pretty sure he's ambulatory, too, and not driving, and I'm sorry, that's still pretty lame if he's healthy enough to walk and needs the exercise.  So I've been through the hateful responses, yeah.  People with chronic illness are judged pretty harshly.  Sorry I don't look like Quasimoto, guys.

    I talked with the psychologist about what it's like to have to go to work on handfuls of meds for years, to have to face coworkers who scoff off your problems, to learn to hide it all to avoid the constant whispering within earshot.  He asked me why don't I just not worry about it, just ignore it, and I said YOU try it.  YOU try coming in to work every day and people telling you that you don't *look* sick, that it's all in your mind, telling you to 'think healthy', being stuck listening to advice from people who have no idea what you're going through, generally not treating you well because you're branded a whiner, a faker, an attention getter.  There is nothing worse on this planet than negative attention, and I'd rather die alone in a corner than surrounded by people who are arguing with me about me making stuff up because I have a psychological problem, or giving me lectures on vitamins and herbs.  I've actually had bosses lecture me like that, too, just for bringing in a doctor's note saying I needed to wear athletic support shoes on a hard floor on an 8 hour a day job.  I have been through every conceivable harassment, and I've seen other people with health problems get treated just as badly.


    So when the psychologist asked me if I really am going to try to go medication free (what choice to I have???  I'm allergic to everything), I said it would be NICE to be able to take a pill, but I've gotta get through the next five months with no help at *all* from ~anyone~.  I'm on my OWN.  No pain therapy, no drugs.  My drug tolerance is so low nowadays I don't dare go over 1/2 a vicodin at a time.  I know people who take 3 at a time with xanax just because they are drug abusers.  Must be nice.


    So yesterday was tough.  I cried.    I had to face hard stuff.  I told him about the other two women I know, both my age.  One is DEAD already, the other has aged twenty years in the last ten trying to keep pulling all this medication abuse and going to work crap.

    But I'm not the kind of person who can sit around and whine except on my private blog.  I hate cell phones, so I never call anyone for support.  I'm aspie, so I don't verbalize well with others anyway.  My 'social network' is a small flock of chickens while Scott works all day.  I have a really different way of approaching pain, sadness, fear, anger, depression, whatever.  I plunge headlong into my demons and take them on, and I'm telling you, to admit after 20 years that I'm as much a prescription drug abuser as any actor out there (thank *God* I've come up allergic to so many drugs) and that I'm really pissed off that this is *~*sanctioned*~* treatment for people with REAL problems while I'm lying in a metaphorical ditch by the side of the humanity road, I'm ready to start facing off with the CEOs out on private golf courses who are dictating this lifestyle to me.  I'm ready to take it all on and show the world I can survive this without their bullshit.  I'm all for medications helping people, but when it's handed out like candy to just any ol' body and the insurance companies endorse that behavior and tell me I'm out of benefits because of some legal loophole, that's bullshit.

    I'm still working on the survival plan.  I've already spelled out in previous posts that medication information is vital, nutrition and hydration are key, letting go of formalized sleep patterns is crucial, and that getting up and moving around are what quality of life boils down to.  So what next?

    Well, I'm going to dye my hair blue this weekend.


    It's bad enough that my hair is this thin (I'm not a hair puller) and strangers automatically treat me real nice as if I've got cancer or something.  But I've gotta play with it before I lose it all.  It's so bad I have to keep it short now, because it's much more obvious when I grow it out long.  It only looks this bad when I've slept on it.

    And don't say Why don't you get a wig?  I hate stuff on my head, and it takes very little to make more hair fall out.  The only hair product I use any more is Pantene shampoo/conditioner.  Everything else breaks my scalp out.

    So this is me learning how to use short hair to look better.  This is me a year ago.

    This is me last April.

    This is me last May.

    This is me in high school.  (That's my brother in the window.)

    This is me about the time I was first diagnosed in my 20's.

    This is me in my 30's.

    This is 7 years ago when I turned 40.

    This is me just 3 years ago.

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    This was me about 2 years ago before I finally chopped all my hair off.

    I miss my long hair.

    And I've decided to be a mall walker.  I can make it to the mall once a week, and walk like a turtle even a little distance, crash on a bench here or there as long as I need, and the old people zipping around me can drag me out of the racetrack if I flop on my face.  I've got to get out with people.  I need spotters.  I can't go walk a nature trail and wait for someone to find my body.


    So that's a big decision, get out of the house on my own for something besides doctor appointments.  Plus I've still gotta continue the new physical therapy exercises I've learned this summer.

    I've been watching a movie called Dark City over and over again lately, and finding it on a youtube with this song was really cool.  This is exactly what I feel like I'm going through psychologically.  This has been very powerful for me.

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I've started transferring my survey posts over to Surveypalooza so people coming in from search engines on mobile devices will be able to see the surveys.


Apologies for the missing vids, another upgrade during the server migration swept through like a scan sweeping through the Enterprise. I'll fix those later, kinda busy...

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