Third day in a row where I wake up unable to walk at all. I can't continue to crawl around on my hands and knees but I refuse to give in and even think about a chair as an option...not yet. I'm not ready. I still am holding out hope that my friends will get me the treatment I need to reverse this and get me up on my feet again.
By the time I take my second round of pain meds, I am able to walk around the house a little, far from the goal I had of skiing into my eighties for sure. I don't know how reversible this is..is the pain in my joints just pain or are my joints deteriorating as has been suggested by others I have talked to? I need to get to a knowledgeable doctor....fast. I have so many questions, but I know basic common sense says if I'm not destroying them, they are destroying me.
Nov 5 can't come quick enough. That is the day that my dear dear friends will be holding the first fund raising event in an effort to get me the help I need. We have a long way to go; the costs of the treatment I need are staggering, but they are working so very hard; I applaud their efforts and hope the community supports them as well deserved as they should be. They need to sell tickets. If anybody knows anyone in Denver or Boulder, please pass the word. It's going to be a fun event, but more importantly, it will raise awareness and educate all those who attend. It will save many lives.
I see what my friends are doing behind the scenes; they cc me on all of their meeting notes and keep me updated on their progress...I can't believe they are doing all of this for me. Sure, it will benefit many but they got involved because of their love for me. Lyme has got to be the loneliest of all diseases for many reasons, but this particular group of women have taught me so much about what friendship is really all about, and that I am never truly alone, not when they have my back. I don't know how I could ever repay them, or thank them enough that equals what they have done for me already....words are clearly not enough. The lessons I have learned through their unconditional love and generosity, including how to ask for help which was huge for me, will last beyond my lifetime. My son is learning too, what real friendship looks like through their efforts and I hope someday he will remember what his mom's friends had done for her. May he also have the opportunity to help a friend in need. For more details, click on the mad hatter brunch or donate links above. Thanks to all!
2 comments:
Dear Robin, I'm not even sure how I came across your blog. I'm very glad that I did, though. I'm so very sorry to hear the suffering that you are going through. I also suffer with Lyme and have been for 4 years. I have had paralysis on my left side and the pain has been so very debilitating. I also have bells palsy. It is so very unfortunate that we have had to go through what we have. I, like you had to go through many doctors...even to the Mayo Clinic, where they told me I needed a psychiatrist, when I was unable to hardly
move. I am in treatment now, but it has about bled us dry and I know what it does to a person financially. I will pray about your fundraiser and for your healing. My blog is mylifeinthelymelight.blogspot.com
take care and I will be thinking and praying for you.
My dearest friend. The world is a much better place with you in it and I will do everything that I can to see to it that you can live on...and help others with this life-threatening disease. It is truly a hidden epidemic. Until then...I am hopeful that other compassionate and giving people will help us in our efforts. Our drive is truly a mission of saving lives...yours being the first of many. I love you my friend. Hang in there, help is on the way.
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