It has officially been two years since I hobbled into my naturopathic doctor’s office and got “the news”. Lyme disease has forever changed my life. I am sad, but I have learned a lot about myself, about others, and have come to realize what really matters. I have an appreciation for things that I once took for granted.
Oh, what a long journey it has been, and although I am now getting glimpses of blue skies and have made some huge steps in my progress, I know I have a long way to go. It is discouraging at times, but I will keep fighting. And I will win.
My first year’s journey was very difficult for me, and downright scary. There were a lot of things going on with my body. Very bad things. If you haven’t read about my first year of Lyme and coinfection treatment, here is a nice little summary. : https://kimmiecakeskickslyme.wordpress.com/2013/09/07/september-7th-2012-one-year/
This year was much different. I have started to see some improvements, which I was desperately waiting for. I have been on IVs for a total of 15 months with aggressive protocols during these two years, so needless to say I spent most of this year with my IV pole, that I had named my “Lisa Frank throw up pole”, as I had decorated it with bright stickers, to liven up being hooked up to an IV for sometimes 4 hours a day. That is depressing. It is a little less depressing with an awesome IV pole though. 😉
At some moments I believe that things are worse, even though they aren’t, based off of blood work, my improvement of having less seizures and tics, and being more functional, but I feel like now, not being as sick as last year, I can feel things worse than before. Does that make any sense to you? I know that might sound odd but that is just how I feel.
My first year of treatment was mostly spent off in lala land, in a wheelchair, having seizures, in the hospital, and I was literally falling apart in every way possible. I was just “there”. Taking up space. I was no longer “me”.
Now that my illness is becoming more invisible and I am feeling better, every pain, every nauseating moment, the dizziness, and all of my neurological symptoms seem to hit me like a ton of bricks. They really haven’t in perspective of how things use to be, but now that I am slowly becoming “me” again, all of these things I can feel, and they hit hard. Sometimes very hard.
Taking this picture made me realize I need to clean out my closet LOL, but all I could think of was, “holy shit”. Dave took my picture, and as I was cleaning up the bottles off the floor tears started streaming down my face.
I cannot believe I have put all of this into my body, to be able to function and get my life back. Thank you CDC and IDSA for being big pieces of crap. Money and politics. We need to be recognized, we need better tests for diagnosis, more research done, we need a cure. This is absolutely wrong.
As you know, I have converted to orals in the past few months, and unfortunately have had a complete Babesia relapse. Those bastards. I will get em’ though. Life has been rough, and I kind of go day by day at this point, as I never know how things are going to pan out.
BUT… with this year of aggressive treatment with Dr J, I have not used my wheelchair in MONTHS, have been able to run some errands, walked Wells Beach in Maine, done some exploring at a few museums, and am now able to go to the movies or dinner.
That is tremendous progress. I might not be able to do these things everyday, but I can at least do them when I am up to it. I am now onto another year of treatment, and am waiting for more good things to come. 🙂