Day 16
Remember I said miracles were happening here? Here’s one of them. My new friend Jason. I need to make sure to get a picture of me with his beautiful wife Kate as I know we’re all going to be staying in touch after we return to our respective homes next week. I’m going to miss everyone I’ve met here but I have to say these two amazing people are at the top of my list. It’s not really my story to tell as it’s Kate’s & Jason’s but I did get permission from him to share this picture. Suffice it to say they are still newlyweds at only 5 years. Jason had a rich life and was “living with Lyme” until he crashed like I did. But he crashed much much harder and now spends his days in a wheelchair with Kate needing to feed him. When I first met them, Jason couldn’t move his legs. About a week and a half ago one of the other patients, a young man from Amsterdam, watched as Jason moved his foot for the first time — he posted what he saw in our private Facebook group and I’m sure you can imagine the tears that came from all of us who have watched Jason’s progress. And yes, LOTS of progress! Kate posted video the other day on her Facebook page of Jason doing physical therapy and him moving both his feet on his own. I had the honor (and I truly do consider it an honor) to work on Jason’s face doing a little acupressure and lymphatic drainage. For my skincare clients reading this, you’ll know the moves as I do it in your facial massage every month. Jason has lost so much weight that at the time he couldn’t tolerate any regular massage but he’s had a lot of issues with his sinuses (many of us Lymies have chronic sinusitis — another fun place for the monsters to hide) and sometimes facial massage feels so much less invasive than a full body massage. With Jason’s permission I stood behind the chair he was in and did what I can practically do in my sleep for my own clients. Jason’s tall and I’m — well — short — so I couldn’t see his face but Kate kept filling me in that he was smiling and then dozing off. My heart soared knowing I was providing even a few moments of relaxation to this dear man.
This week a new girl started. She’s 15 — same age as my son. She has Lyme and is paralyzed and in a wheelchair — talk about heart breaking. But this beautiful teenager is famous in the world for being blessed by Pope Francis on his visit to NY in 2015. At the time she hadn’t been diagnosed. She had gone from being a vibrant young girl who was a dancer to being in a wheelchair unable to walk. Apparently within days of receiving the Pope’s blessing at JFK, she got her Lyme diagnosis. Some might say that the blessing from the Pope should’ve cured her but I say we’re all on a journey. I can’t speak for her but I’m sure the blessings came in the way of community banding together and helping her with treatment — the last news article I found from a few months ago talked about how through the help of wonderful donors she was able to get a wheelchair lift. And now she’s here — with me. And I keep thinking about how lucky I am — how lucky my son is that he hasn’t crashed yet — how lucky I was to get my diagnosis before I ended up not being able to move like my two new friends. I’m bringing my son end of December to treat. He goes off to college in three years so I want him to get better now BEFORE he crashes like I did and is unable to be on his own at school. Today I hope to spend more time getting to know her and her dad who is with her. I hear he’s very outspoken about Lyme and I want to pick his brain about how we can work together possibly to make change in the medical community. Believe!!!
How am I? I’m feeling spurts of what life can be life. I’m a little nervous because I’m still in beautiful San Jose del Cabo staring at the very healing waters of the Sea of Cortez every day. I met with Brigitte yesterday to discuss my progress. Last night was the first time I didn’t take my Midodrine (a pharmaceutical drug to raise my blood pressure as most Lymie’s run very low and before I went on this medication I nearly fainted several times) and I’m not going to take it this morning and I’ll have the nurses at the clinic monitor my blood pressure. Apparenty the stem cells will fix my blood pressure so I’m going to try cutting down to one pill a day and then if my blood pressure remains in normal range I’ll stop the other and see how I do. Wish me luck!
Speaking of meds. And this can be a whole other post in itseelf — my first bout of true clincal depression happened at the age of 32. I’m not talking about just normal lethargy or the blues. I’m talking about can’t eat, can’t get out of bed, can barely make it to the bathroom, can’t control my own mind — clinical depression. Coupled with full blown panic attacks where I literally felt like I was being buried alive. I had several bouts after that — I can’t count them now but perhaps 5 maybe 6 since the first? As a result I ended up on antidepressants as well as a highly addictive anti anxiety medication Klonopin. I spent two months prior to coming to Stemaid weaning off the Klonopin. It wasn’t the easiest thing in the world with lots of vertigo as I slowly (with the help of my integrative MD) tapered down. But I’ve been off over a month now and so far so good. Once I’m more stable and home for a few months I’m going to start the difficult journey of weaning off Klonopin — it will be a much longer process than the Lexapro and of course I’m afraid. I’m afraid I’ll turn into a raving lunatic and my friends and family will leave me — I’m not kidding when I write this. But it’s not a reason to stay on a highly addictive drug. I’m sad and I’m angry that I was given addictive pharmaceutical drugs when it turned out all my depression and anxiety were caused by Lyme Disease. I think about the depression both my kids have lived with off and on throughout their lives and I’m so sad. My daughter has her own story and I hope will share it one day — I’m learning what’s mine to tell and what’s not. My son as well — but I’m so glad I never put him on medication for his anxiety and am beyond excited the HE ASKED to come here for treatment! And if my daughter happens to be reading this — yes, if and when you’re ready I’ll make it happen for you. It’s the least I can do for my children not knowing I was signing them up for this disease.
It’s time to sign off as I need to leave for the clinic in an hour. I still need to write about how grateful I am to my dear friend Glenda for coming out last week — I have no clue how I would’ve survived last Wednesday without her. And I’m forever grateful to my long time friend Cheryl for taking over for Glenda and staying here till Saturday when Kris will return for my last couple days of treatment. My life is filled with Angels and blessings and I’m so glad I learned at a young age how very important it is to surround yourself with close friends.
Today’s schedule includes more chelation, Vitamin B17, Vitamin C, my blessed stem cells AND (woohoo!!!) a little fun in my day with a PRP with stem cells facial! They offer them if there’s time and knowing that I’m an esthetician and already do microneedling under my permanent makeup license, they made sure to get me on nurse/esthetician Elizabeth’s schedule.
