What would love do here?
As I reach for a normal life and a healthy body, that question keeps repeating in my mind, "What would love do here?" I've taken this as far as I know how and now I'm looking to friends, family and even the thoughtfulness of people I don't know to help me to get the help I need, which insurance does not cover.
About 12 years ago I was diagnosed with Ulcerative Colitis and placed on Lialda. I learned that I needed to change my diet, so I began a regime of eating a diet free of wheat, gluten, soy, dairy, grain, sugar, processed foods, nightshades and any irritants including foods with nuts and seeds. It was like Paleo on steroids.
Six years ago I experienced a flare up from Ulcerative Colitis that almost killed me. I spent four months "starving," as my very compromised digestive system tried to make use of food. Each time I ate I knew I was in for extreme pain. I sometimes sat in the bathroom to eat because food would fall right through me. I could never be far from a bathroom, even going in to my yard to enjoy the sunshine brought anxiety and stress....what if I couldn't get to the bathroom fast enough?
That summer was mostly spent between my bed and the toilet, sometimes crawling between the two. Ultimately I was placed on prednisone to calm things down. Slowly over time I regained my weight from 103 pounds back to 113 then 120. I was so grateful to be alive let alone to be able to actually eat. I was naive.
Having a compromised immune sytem means that I'm vulnerable to pick up almost anything infectious. I contracted Clostridium Difficile which is a devastating bacteria that requires a costly antibiotic, untreated it can kill a person. Although the antibiotic did kill off the C-Diff, it also erradicated any remaining good gut bacteria. This left me even more vulnerable and voila, a second round of C-Diff hit me in 6 months... more antibiotics, and a completely vulnerable gut.
Through this double C-Diff episode and more violent weight loss, I continued to work with the best diet of whole foods to support any hope of digestion. I used rounds of aryuvedic and chinese support herbs, vitamins, minerals, probiotics...you name it. I worked with the best the western medical world and health alternative worlds could offer including reputable, top doctors. Where insurance wouldn't pay, I made sure to make the money to pay for what I needed. I was lucky, I had just enough strength to work.
I decided to look at the emotional / psychological components of having such a life threatening auto-immune disease. I learned about lowering my stress levels, managing my thoughts, breathing deeply, slowing down, resting and having a positive attitude. I decided to work it from the inside out. I did all I knew to do...then on came this current flare up.
This last round has been as severe as the episode 6 years ago. I'm down to 102 pounds and have spent several months between bed and bathroom. I've cried myself through long nights of wishing I could sleep. The problem is, I can't sleep because my body is pouring out anything I ate during the day. Even though my body was emptying all day, somehow even more material was coming at night. How is that even possible???
Spending long hours through the night when mostly everyone I know is sleeping just accentuates the isolation I feel. Since stress is a key driver in this auto immune disease, the lack of sleep keeps things stirred up, therefore sleeping when possible during the day becomes necessary for me. The rest of the world is awake, and I'm asleep...more isolation. More being alone.
Heading in to the holidays brings it's own brand of stress for most people. For me, Thanksgiving was beautiful in that I was with close family and friends, I just couldn't eat what everyone else did. Everything looked so amazing and smelled so good and I had to keep telling myself, "If you eat like everyone else, you'll suffer." I "treated" myself to one slice of turkey and I paid for it all night long.
Once again, my body is being forced to keep food in by the use of prednisone, lomotil and hydrocortisone enemas until the doctors can figure out what to do with my system. I eat very little and while I'm not losing any weight today, I'm not sure what will happen when I'm done with the prednisone which is in a couple of weeks. It's scary to think about it. My gastroentrerologist believes that I will go through repeated flare ups over the years. I can say honestly, I don't have the resiliency to go through this again.
So I'm asking for blessings...
Last week I learned about a promising solution for my health through Dr. Jason Klop. Doctor Klop is presenting a path towards remission through FMT treatment. This really speaks to me and I believe with all my heart it could be the treatment that saves my life!
Since this therapy is not "approved in the US" for a case like mine, it is not covered under any form of insurance. This is why I need help in order to fund medical costs, my travel, and other supplemental fees associated with this treatment.
Dr. Klop has spent time educating me on the treatment he uses. His success rate is amazing, especially for people like me who not only have Ulcerative Colitis, but who have also had C-Diff. We just had our first on line consult and I'm so excited for going forward!
With Dr. Klop's treament, I am imagining a vibrant future playing with grandchilden, and enjoying life with the love of my life who I only met one year ago.
I am so grateful to all my friends and family who have seen me through these years of illness, flare-ups and "barely making its". I am hopeful that this treatment will not only get my UC in remission, but it will also give me my life back. I feel such hope for the possibility of a healthy life. I feel such hope to be able to have a normal social life, to be able to drive my car without having a bathroom accident in it and to be able to work again.
I know I'm not done living my life...I just want to live a life of quality, participation and even giving back. I'm a musician with wonderful music to give to the world and I want the chance to do just that. I can see delivering wonderful uplifting music concerts to those in need.
So, what would love do here? I know for me, it's staying positive, asking for the kindness and generosity of others to see me through and giving thanks in advance. What do I want for Christmas? Dr. Klop's treatment, thriving health and well being.
Thank you for listening to my journey and for considerating helping me to fund my cause.
I decided I could also create a wave of love by sharing my music in the world. My music gives me the strength to keep getting well. In the last 2 weeks, friends helped me organize a CD of my best live, on the spot improvisations. I can now sell these to help with fundraising. This also allows me to give the gift from my heart to you. Please visit here:
You can buy Danae’s new CD / MP3 “The Gift of Music ~ Soul Moving Improvisations” https://portal.danaeshantithrive.com/the-gift-of-music-soul-moving-improvisations
This is me when I was healthy, in a live improvisation singing performance. https://www.youtube.com/watch?v=POEN_8hA2xA
Happy Holidays ~