`(quick note….as many of you obviously know, I have not been able to do much work on the website in quite some time. I have spent a good portion of the last year too sick to do much but survive. I also hit a point in treatment, and my illness where it became a “sink or swim” situation and I had to make the choice to swim, and in so doing all my time, energy and what little mental clarity I have had have gone into just making day by day with treatment, with making it day by day, and trying to not let go, or let go of hope that while maybe only halfway through this whole thing I can find a way to make it all the way through. But because of all that and how sick I’ve been I have not been able to write much. But today wanted to share this.)
Exactly 2 1/2 years ago right now I was returning home from a day of emergency Dr appts. It was 2 1/2 years ago this morning I woke so sick we were afraid I had had a stroke. By 6pm that Friday night I was told it was probably MS and to follow up with my primary Dr on Monday. It was 5 1/2 weeks later, after being told I was healthy and any pain I was having was in my head (and several specialist visits) that the one thing all the “great Drs” said it was not, but a random PA said “sounds like Lyme”. On a whim my primary did a Western Blot and it came back positive. Yet all those specialists were so sure of themselves they wouldn’t run a cheap standard test (which is only 33% or so effective per the NYS Dept of Health). I wish I could go back in time and warn myself what was ahead. But as one of my best friends said last night…I’m still here, after many close calls, including yesterday when I was really afraid I wouldn’t make it through the day. It doesn’t seem right that so many miracles would come my way making it possible for me to be treated for the last 29 months, and still be able to pay for it without mom losing her house or anything drastic. Thank you to all of you who have done the annual benefits to help, for those who pick up random bills, send me checks for no reason, or offer to pay for a month’s worth of this or that, to those who pay for my vitamins and won’t let me pay them back. With tears in my eyes right now I thank you all. Because somehow against all odds I’ve made it this far. And it doesn’t seem fair that the path would open up to get me this far for me not to make it to the finish line.
I’ve hit a rough patch in my treatment, making me a sick now as I was 2 1/2 years ago. Then I was calling friends and telling them what things to get out of my apt when I died before my family could find them (every single person’s nightmare according to sitcoms…and all my single friends)…today I rely on the love and support of literally hundreds of people. I am so blessed, with every intense pang of pain I remind myself this to forget the pain. God bless you all, may good Karma be yours…or may you find a case of girl scout cookies on the side of the road. Whatever it is…I hope you are all blessed for what you have done to get me this far.
