Monday, June 7, 2010

Monsters in the dark

Yes, yes, yes..... I haven't written much for a while. The thing is though, it's not that I don't have much to say. I have too much. And my carefully considered plan to have my blog as an outlet to let my "Inner Voice" run free has run into some irritating existential snags. See, some people write nice short here's-my-day notes and move on. They write to announce something or maybe share a cool observation or a little rant. I write to organize and focus a chaotic and ignorant mind.
So here's the thing, dear readers, I have to write this shit down. I just do. If I don't, my life spirals into deeper chaos and confusion. But writing more plainly and fully has risks -- exposure, well intentioned but unwelcome advice, surface sympathy or worse, an absence sympathy.

Okay. Here goes. The reason I haven't been writing much lately is because there is something wrong with me, something not good. A few months ago I started experiencing strange pains. At first, the pain seemed to be confined to my knees; and that sucked but it was certainly understandable. I ride a bike, work out, take karate, etc. An injury every now and again in a 43 year old female body is to be expected. Right?

But soon it became apparent (after trips to the doc, X-rays, etc.) that there was no injury; just pain. Debilitating pain. Unable to fuckin' walk pain. When I could, I'd ride my bike but karate was out and I thought the poor equipment at my new gym was partially to blame so I quit lifting. So I self-medicated with wraps and braces and Tylenol and Advil.

Let me talk about the doc for a second too. After the tests revealed nothing, the doc immediately told me that my problem was "lack of strength." I refer you to two paragraphs above. I may not be thin, but I'm one strong, fit woman. Yet Dr. Dickwad didn't believe me. With a patronizing pat on the head he said -- and I'm not making this shit up -- "well, maybe you think you're working out hard or correctly, but your probably not." And with that handed me a sheet with leg exercises requiring two pound dumbbells (I do squats with 20s and 35s in each hand), leg presses with 50 pounds (my current leg press is around 230), and leg extensions with 15 (I do 125.)

I also regularly do 100 roundhouse kicks, per leg, followed by 100 jumping jacks, followed by three 2-minute rounds of sparing under the watchful eye of a damn near perfect sensei.


But I digress. About two months ago, the pain changed. It was no longer in my knees, it is now a weird, random pain that strikes my extremities in no particular order and can be absolutely paralyzing. One day, I was unable to lift my right arm. Another, my hands were in such pain I couldn't hold a pencil, type, or even undress myself, Vince had to do it for me. Sometimes it's my feet which hurt so bad I can barely stand. Another day, it will be a pain in my neck so bad I cannot turn my head left or right. Sometimes, it's just a finger but I'm unable to move it without excruciating pain.

And it comes and goes almost instantly. Thursday of last week, I woke up and my right leg was in severe pain every time I moved; I could barely walk and my husband had to help me up and down stairs. By 4 o'clock, it vanished. Yesterday my left arm was no longer functioning by the time I went to bed and I was unable to sleep because every time I moved, it woke me up.

And then I'll have a couple of days where everything feels normal. Then.... wham! Whatever could be causing this?

Let me tell ya folks, the Internet ain't your fuckin' friend in these circumstances. These symptoms fit the following: MS, Addison's Disease, Lupus, Lime Disease, brain tumor, brain cancer, and that's just a few of the jolly notions floating around.

I'm not one to assign a cause without evidence but getting the "evidence" for a diagnosis opens up a whole other ball of wax -- our fucking health care and insurance system, and I use the term system sarcastically.

Vince and I have private health insurance which is not only expensive it also carries very high deductibles. $3000 each, plus 50% on the next $5500 per year which means that before our insurance -- whose premiums have increased fuckin' 40% per year -- pays a fuckin' dime we pay out of pocket $5250 per year, per person. fNo office visit co-pays, just the bill -- which may show up months, if not years later with a note saying "you failed to pay XX amount at the time of service so you now owe us..... blah, blah, blah." Anyway, chasing down a mystery pain is crazy expensive.

If that wasn't enough, even though we have a plan that doesn't require a referral from a primary care physician, no specialist will make an appointment without a preliminary diagnosis from our PCP because they don't want to "waste their time." That means we have to pay for 3 or 4 visits with a doctor who isn't equipped to deal with this problem, with the subsequent delays that causes, before I can even try to get an appointment with a specialist.


Anyway, all of this is offered in a small way to explain why I haven't been writing or commenting much lately. Needless to say, there hasn't been much "sexy, swinging stuff" going on, and the fact that people STILL don't respond to email is another post for another time. Also, I'm having a hard time getting into the conversations, I just feel like I don't have much to add.

And finally, I'm scared shitless. Seriously. This isn't right and it's not "nothing." It's something and we have no idea what other than the potential physical disasters I mentioned earlier.

I've told almost no one about this; certainly none of my real life friends and almost none of my family. It's not because I'm protecting them from worry. I'm protecting myself from their dumb-ass speculation, nagging, and criticism regarding what I've done to precipitate this.

"Oh, Ivey, they can't be that bad. Tell them. They may surprise you! {{hugs}}" Oh, STFU. I know 'em a little better than you and they are all, to a man and woman, nothing if not predictable in their schadenfreude. I, sadly, remain mystified at what it must be like to have a family that actually enjoys and supports one another. Mine does not. End of story.

I'm heading out in about an hour to my next doctors appointment. The latest round of lab work came back "normal" so the good news is that it's nothing that could be discovered via blood tests (rule out diabetes) but it's bad news in that it's nothing that could be ruled out via blood tests. I think the next round they are going to start looking at my brain (cha-ching!!) for turmors or cancer and possibly lymphatic system (Bring on da' MS, bring on da' lupus!).

Meanwhile, Vince and I have clients that need and have purchased our attention, new clients that we need to find, and the general activities that support our lifestyle. We're trying to make new friends while keeping this little 'secret' from them. I am also doing a play. Returning to the stage in a challenging, emotionally wrenching piece. Yesterday I told the director about my little problem because it became clear that I was physically unable to do the blocking and, unless I was prepared for him to start suspecting I was an abused wife, he needed to know why. Fortunately (?) my character is a survivor of the Amiriyya Bomb Shelter tragedy of the second Gulf War so physical infirmity works for the character.

But it doesn't work for me. Not at all. I just read back through the post and see my signature brazen, bullish, somewhat comic writing style coming through. Don't be fooled. I'm scared. I'm confused. I'm unable to exercise with purpose and getting fat again. I experience bouts of fatigue that mimic depression. I am unable to focus. I feel stuck. I feel fake hiding my situation but I feel too vulnerable to talk about it, as if giving it a voice gives it more reality, more certainty.

Maybe it is just Lime Disease? Maybe. All the other maybes are monsters in the darkness and I can't find the fucking light switch.


  1. I am so sorry that you're going through this. Could it be fibromyalga? That might be something to consider, too.

    I've got my fingers crossed for you and I hope you find out what it is soon <3

  2. That's scary as hell. I hope like anything that things get easier. Thinking of you here and wishing you well.

  3. Oh my...there is very little more terrifying than not knowing. At least it helps to have competent, professional medical professionals on your side....

  4. That's a lot to keep to yourself, but I totally understand your reasoning behind it. Good luck with the next round of dr visits... I hope you get some answers soon.

  5. This is a scary time for you. My thoughts are with you right now. Waiting for answers is challenging. Thanks for having the balls to put this out there too. It takes a lot of strength to do that.

  6. Veronica and I are thinking good thoughts for you. You know that whatever I can do to help, even from a distance, just let me know.

  7. Many good thoughts and I'll email you.

  8. sorry about your pain

    yes i know what your going thru

    when things show up for you but do not show up

    for the doctors makes your life miserable

    becasue they cannot treat the pain

    until they can figure out whats causing it

  9. Hope the docs figure out what is going on! Very scary!
    Good thoughts with you!

  10. I am sorry that you are not well. I hope that an answer can be found and soon. I am also angered that your insurance is standing in the way of your answers.