For starters, I’m saying that to myself, not to you the reader. For second starters, please forgive my grammar and use of punctuation. That out of the way, the many of you chomping at the bit at a grammatical (or spelling) error can take a deep breath and relax.
I’ve said many times I’m one of the lucky Lyme victims. I was sick for a long time before being disabled, but once I became unable to function I had a diagnosis within 5 weeks. I was treated for 3 weeks (typical response) and when they wouldn’t treat me any longer, a specialist took over understanding the complexity of Lyme. After a few months the specialist said I probably needed IV and to see a Lyme literate Dr. I called the LLMD and they had just had a cancellation so I got in 3 weeks later to begin with one of the best (in my opinion) Lyme Dr’s in the world.
Up until becoming disabled I worked for the state of New York. All my grumbling over the years about state gov’t and having to work for it all went away when all the wonderful benefits kicked in. I haven’t worked in over a year and a half, yet I still have health insurance, I have other great benefits that are helping me out. This kept me going until my finances had run dry paying for the non-insured Lyme treatment I desperately needed, at which point I moved back in with my Mom.
It’s been almost a year living her and being on IV medication. I’ve made it this far. Point #1. As rough as it has been, I’m so much better off than so many Lyme victims. Point #2. My own self misery at the loss of life I once knew is nothing in comparison for the gratitude I have now for the things I have not lost. Point #3.
The past few weeks have been truly awful. Before that it was a few weeks of rough stuff going on. Before that it was the Babesia crash of 2010. Before that it was the Bartonella flare of 2010. Before that it was adjusting to the constant state of herxing I felt while being on IV meds. My point? Yeah…it all sucked. It sucked a lot. But through all of that, the option of treatment and moving forward was still there.
My case has reached just about $70,000 out of pocket. And that’s okay. (As much as it drives me crazy to be blowing through my family’s future day after day.) While far from rich, my family has the resources to keep me in the treatment I so desperately need. I know too many people who get so far into treatment, and then the bank accounts dry up and they’re left high and dry, unable to “get better”.
I still have the option to “get better”. Someone recently asked how I can have the energy to do the things I do in the Lyme community, keep my story honest and written on LymeBites, work with Lymenaide and be as sick as I am.
This post is my answer. Because I’ve been extraordinarily blessed on my journey. Others are not so lucky. I give back what I’ve been given, as best I can with the limitations of this disease. I come from a long line of giving people with huge hearts. (Not the engorged kind I’m always afraid the Cardiologist will find on my check up.) I am who I am because of my nature and the example of those who raised me. (Not just my mother, my Aunt and Uncle, close family friends etc.) In a situation like this the clear cut answer to me would always be that being afforded the opportunity I have to fight this and get better would be completely selfish if I didn’t give back some of what I’ve been given.
Yes, some days I’m too sick to keep up with the responsibilities I’ve put upon myself, and I have to accept that. Yes, there are days I cannot get out of bed but armed with my laptop there’s nothing that can stop me. There are days I feel better and want to take on the world, only to wake up the next day wondering “what the hell were you thinking yesterday?”
I’m learning as I go along in this journey. Each day I learn something new about myself, my body and my health. Today I’ve learned it’s okay to admit defeat when you’ve set high goals for yourself. This disease has taken so much from me, everything that made me who I am is gone now. The same person is in my body, but with a new layer of perspective thanks to this disease. Yes, I bite off more than I can chew on a regular basis, but I’m doing what I can to give back because of how completely and totally blessed I have been to make it this far, and still have hope of making it to the future.
One of my favorite quotes, and also a mantra for how I live my life sums it up: ”I aimed for the sky, but only reached the mountain tops. I thank God I didn’t aim for the mountain tops.”
I’m gonna keep reaching for the sky…and I may only make it up one mole hill, but I won’t stop reaching for the sky. Sick or not.