This Is How I Save My Life: From California to India, a True Story Of Finding Everything When You Are Willing To Try Anything by Amy B. Scher
My rating: 5 of 5 stars
Thank you to GoodReads, the author Amy B. Scher, and @Gallery Books / Simon & Schuster for this Advanced Readers Copy to review.
Over the years, several people have told me I should write about my journey with Lyme disease and chronic illness. Now I don’t need to, Amy Scher has told a story that mirrors mine, except I’m hoping to try stem cell therapy in the next year or two; it’s something I’ve been researching since I was first disabled in 2009. Almost ten years later, I’m almost ready to try it, and this book comes out. Synchronicity.
What she writes could be a page out of my life (pg 163):
“I could never do what you are doing.”
Honestly, I’m no superhero. You could totally rock this too, if you had to. In fact, we could all do anything if we absolutely had to. I once thought I could never do what I’m doing either, except for now I don’t have a choice and that’s exactly how I’m doing it in the first place. Some nights when I go to bed, I think to myself ‘I cannot do this, not for one more day.’ Eventually I fall asleep…and then…I wake up with a life that is just waiting for me to wade through all over again. You do it because even when — especially when — you think you can’t you’re somehow still making it happen. And you do it every minute of every day — no breaks allowed — because if you don’t every single thing that you’ve barely been holding on to might fall apart too.
The writing in this book is outstanding. The honesty is heart wrenching.
I’m done, because I don’t have the energy to type any longer.
If you’re chronically ill, or know someone who is chronically ill, you should read this book. If you have Lyme disease, this is a must.
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“I never kept a tally and I didn’t count it, but I can tell you that it’s a lot,” Yolanda says. “People spend their life savings on finding a cure, and there is no cure.”
My estimation, since going on disability in 2009, is around $95,000. That is out of pocket and doesn’t include loss of income. I maxed out my credit cards, cashed in my 401k, IRAs, and pension, begged for money from friends and family, and rented a room out in my house when I could find someone.
I would love to try stem cell therapy in Germany (not the clinic Yolanda went to), but I don’t have $30,000, unless I sell the house. And I don’t have the physical or mental resources to sell this, find something else and move. Something I’ve done more than a dozen times since graduating college.
From a family member: “she says the stem cell therapy didn’t work. it’s hard to tell from her long list what might have been most effective. besides removing the implants.”
My response: “That’s a risk with stem cell, it doesn’t give the same results for everyone. But she did embryonic and Infusio (who now only does fat stems bcuz of US laws); from my research, blood or bone marrow stems work best for Neuro Lyme. That’s why I have my eye on a different German clinic.
“Also interesting, Dr Horowitz put her on bicillin shots and mepron, no IV antibiotics (since it was his office that put me on the path to my current protocol). And doesn’t seem like she stayed with him very long, but then, I’ve had three LLMDs since 2010 (Lyme literate medical doctor).”