February 10, 2011
Pick Up the Sword or Stand in the Ranks?
10:58 AM | 
Posted by
C.J. Ellisson |
I've had so much new and confusing information dumped on me in such a short time it's impossible to choose a path -- that is, besides the obvious one of following doctors orders. Occasionally, on here, I talk about my issues with Lyme. I post status updates on my personal Facebook profile, rarely on my business one, and I talk to my friends when they ask about my treatments. But I try my best to disassociate myself mentally from the disease.
I try my best to not dwell on what is going on in my body and all I can't do because it is horribly fucking depressing. Pardon my language. I recently read a young woman's self proclaimed "TMI" Lyme blog where she pours her heart and soul out for her friends and family. She doesn't post often, but when she does you can hear the passion coming through and her desire to beat this debilitating disease.
I've met some people the last few weeks whose stories have left me crying during my long drive home from my latest IV treatment.
-- A teenage girl who was paralyzed due to Lyme who walked for the first time in 18 months over the weekend. She had to be taken out of school for an entire year and is struggling with extensive physical therapy and medical protocols to get her life back.
-- A woman my age who has been battling this for so long she is on permanent social security disability and her and her husband have almost lost everything to keep paying for her treatments.
-- A newer citizen to our country (5 years), who is all alone and she goes to work using a walker to be able to pay her rent and afford basic treatment. She fainted in front of me and went down like a ton of bricks, it was shocking. And quite heart wrenching. The nurses leapt into high speed action like in an ER and I was paralyzed with fear while watching. She'd been blinded in one eye and undergoing extensive new therapies, which her body rejected, to reduce the swelling in her brain and her body just momentarily shut down.
I've begun to dread going to get the IV therapies because I can't handle the emotional strain of interacting with these amazing people, which, when compounded by new diagnoses popping up in my monthly tests, have been making me an emotional wreck. We all have one thing in common - we want to beat this damn disease stripping us of our lives.
What is so hard for me is doing nothing. I can't interact in the online medical forums for Lyme patients. They suck the life and hope right out of me. Their depression comes across the Internet and threatens to grab me in its clutches and take me down as well. I like to tell myself they are worse off than me, I like to tell myself I'm not that sick, after all, I can still walk. I like to push it away and try my best to not dwell on it because if I do, I can see all too clearly why so many Lyme patients kill themselves.
Don't worry, that's not me and it never will be.
But where do I take a stand? Do I stand up and shout to the media, to anyone who will listen, about the conspiracy going on in our country regarding Lyme? And make no mistake - when you have doctors not qualified to write Lyme treatment guidelines getting paid to write said guidelines by the insurance companies, you've got a serious issue going on in health care.
What can one sick person do? The rage consuming me over the injustice these patients must suffer because of the corruption and conspiracy within the AMA and IDSA may very well be a result of symptom from one of my co-infections (nice side effect, eh? You should hear the shit that occasionally pours out of my mouth to my family, then again, maybe it's good you don't).
Can one person make a difference against such atrocities? Can one person uneducated in law and not sure of the path make a difference? Am I up to the fight? Can I speak out and be heard? Or should I sit quietly with my head down and wait to get better, as my life and our savings accounts slowly deplete.
I'm not sure.
I emailed the passionate woman I mentioned earlier, the one with the heartfelt blog. She used to be a civil rights lawyer and she's determined to get better and go after health reform when she is. Should I team up with her and try to make a difference? Will focusing my energies on this be just one more distraction so I don't have to face how sick I am? Or will it be the drive to keep me on track while I get better?
I laid in bed last night with my whole body in pain. Not achy, like I have been in the past, where it feels like I've exercised every single muscle of my body and it's screaming at me from my vigorous pursuits, but actual pain. I started to get teary-eyed, as I am now, and laid waiting in silence for sleep to hopefully come.
Morning came, and despite my desire to stay in bed and cuddle up, finally pain free, I forced my ass out of bed. There is no way in HELL, this damn thing is going to beat me. And if it is my rage against the political bullshit surrounding the conspiracy regarding Lyme that propels me forth each day, then so be it.
Here are some great links I found recently:
Basic Lyme Information - Interestingly enough, I found the tick that bit me. I had no bulls eye (I checked daily) and I tested positive on every damn test for Lyme that there is on the very first pass. My case went to Late Stage with neurological manifestations very quickly-- in part, it's believed, due to my weakened immune system battling my own body (the two, now three, confirmed autoimmune diseases).
If you like the outdoors, or if you kids play in your yard, you need to watch this documentary, Under Our Skin.
I told my son's pediatrician that I keep Doxycycline on hand (from a prescription a few months ago) and plan to use it to treat my children proactively if I see a tick on them -- current belief is 72 hours of 100 mg of doxy two times a day for THREE days is enough to kill the bacteria in it's early stages. He didn't say "no, you're crazy," but, he did say "It's usually the tick you don't see."
And to read personal stories that reinforce why I run and put my head in the sand:
Unfortunately, as I learned more from the documentary listed above, Under Our Skin, Lyme doctors are losing their licenses and being forced out of practice by insurance companies (who have them brought before the state medical board for prescribing antibiotics longer than is set in the current Lyme guidelines:
What can one person do? Am I that one person? I'll admit, I'm strong. And without sounding like a conceited bitch, one of the strongest people I know. I never back down if I believe in something, I stand up for anyone I feel is being picked on, and I'm a tiger when it matters.
But am I up for this fight? My body weighs me down and my strength is taxed very quickly. I want to fight. I want scream. I want to rage for all the people not getting treatment and dying. Yes, dying, from either Lyme or what it slowly destroys in their bodies to eventually kill them.
Can one person make a difference? I aim to find out.
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4 comments:
I can think of no better person to pick up the sword. Of all the friends I have, I certainly would not want to be on the other side of that sword - knowing the passion and determination you bring to everything you do in your life.
That said - remember to keep joy in your life, and if you were to pick up one more thing in your day, make it something joyful. Lift your spirits - choose to be focused on the power of joy and being here in the present moment. Stress kills too.
I challenge you to focus on joy just as strongly as you focus on your writing. :) Much love to you... - Tre
You are so smart, Tre. Hmm... but focus on Joy?
How does one do that when joy comes to you from so many places in life - our children, our spouses, our friends, simple pleasures in life like favorite foods, books, family games, movies, quite times, soaks in hot baths...
I am so over all over the place with my emotions, and you are dead on. I never want the rage to over power the joy.
I can only imagine what it feels like to live with the conditions you describe, but I know how hard it is to get off the couch and give a crap when I am in the throes of garden variety winter depression.
But I can say that having something that you believe in this strongly is more of a reason to get out of bed and fight than NOT having a reason to get out and fight. And to stop and smell each rose as you go.
Thanks, Teri Anne, always great to hear from you! I know I want to help and I want to fight, I just have to find a way to do it effectively.
I'll keep you all posted when I figure something out ;-)
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