Since Ive posted last, physically not much has changed other than Im working out HARDER and it's paying off and I also am loving my new job, it's overnights at the animal clinic but it's nice being able to stop a few minutes when I hurt and not have to rush to another appointment that's waiting. Ive also found a group of people on facebook called central florida lyme league. WOW. It's so great being able to talk to people near me about my fears with this disease (and there are many!) that I can't talk to the rest of you about/ you don't seem to care. There are some people have been friends with for years that just don't seem to give a flip about me with this disease or even act interested when a new study comes out linking other diseases to it, such as lou gerhigs disease, and won't even take my advice on precautions to NOT GET IT! That's ridiculous! "Gee, it's not going to happen to me" well, it happened to me when I was 18 and took 5 YEARS to diagnose me and I am still fighting to get treatment for it! I'm sorry, someone my age shouldn't be having these problems.
There's a little girl I'm friends with that is 12 and she's way worse than me- that's not fair! This is such a lingering painful illness and it just adds insult to injury when your friends aren't there to support you. Thankfully I'm am feeling good, I think I am on the right track to being in remission- what I am doing must be working. Sadly, I've lost 3 friends to this illness in the past month and a half and I grieve for their families but I rejoice in thier passing because now they don't hurt anymore. It's an odd feeling watching someone deteriorate and die with a disease that you have. Is that going to be me in 5 yrs? 10 yrs? ...next week?
Heres an "excerpt" from a new lyme friends blog that I thought was very well written-
"Today is May 1st. The beginning of Lyme Awareness Month. It is an odd day for me; one filled with deep emotion. When I got out of bed, I wasn't feeling particularly sad or moody. Then, as I took in everything on line: people asking how I'm doing, pleas from strangers looking for help, videos designed to help people understand this disease, Facebook photos filled with green...something snapped.
"Pray for me..." one person writes.
"Feel like no one understands..." cries another.
"Anyone else worried about dying?" questions a third.
Lyme related deaths, new treatment protocols, doctor's appointments, strange symptoms, politics, and pain fill my lyme colored world. Hope's a rare commodity...even among those of us who generate it.
Tomorrow is my fifth doctor's appointment to treat a disease noone can prove I have. It also marks my 9th month of living existing with undiagnosed chronic illness; a fate I wouldn't wish on my worst enemy.
No doubt, you have your own dragons to slay: kids to feed, money to find, promises to keep. Still, if you can, I hope you'll take a moment to understand mine. If not for me, maybe for you. It could end up mattering more than you know"
Her blogsite is http://www.altereverything.com/ and she is very wellwritten.
So, I guess what I am hoping for is understanding. Some empathy. Some HOPE.
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