This week I responded to a person who had stem cell treatment at the same clinic I went to. Unfortunately this person did not have good results and now feels like I am somewhat of a "bad person" for sharing my personal story. I don't share and answer questions to hurt or mislead anyone, so I thought I would share my response to those who think I am a fraud:
"I understand that you may not be in a good place. If I hadn't experienced favorable results, I think it would be reasonable to have extreme feelings of animosity and hostility.
If you really followed me and knew the candid dialogue that I have with so many different people every day, you would know that I have never misrepresented my story. I have shared my joys as well as my struggles. I shared with the world about my recent MS exacerbation that sent me back to an extremely dark place, but then how I had the strength to keep fighting and work to recover.
I am just one person - not paid by anyone or partnered with anyone for some agenda. In October 2008 I posted on MSWorld.org that I would share my experience - good and bad - and that's what I continue to do.
My website was not out of design, but only done to help alleviate the overwhelming amount of time it was taking to personally answer so many questions I was getting by Feb 2009. I am not good at daily blogging and I have been honest about that in many posts and emails. I'm not getting a dime to share and I paid for my website myself. When I returned home in Nov 2008, I was blessed to start feeling benefits. By early 2009, I could see and drive and think clearly again, but I still had many things to deal with and continue to address in my daily life as a result of aggressively fighting the adverse effects that MS had taken on my life in just 4 years. My website is not up to date, buy my Facebook is. My YouTube videos tell the whole story and are easy to find for anyone looking and doing their homework.
I had to file bankruptcy and I worry monthly about keeping my home. I know what it’s like to spend every last dime on medical expenses and worry about how I’m going to pay my utility bills monthly. I pay very close attention to my health overall including eating right, limiting stress, exercising, and living the healthiest lifestyle I possible can.
I have never played the "pity card" or tried to be a martyr. I am a positive person by nature and use that outlook and personality trait to keep going.
I have NEVER presented stem cell treatment as a cure and NEVER tell anyone that they should do it just because I did well. What I do tell people everyday is to learn as much as you can, be a self advocate in your own healthcare, and understand that MS is so very different for each individual.
I didn't know if the treatment would work, but I had exhausted all of my options here in the US. It was worth the minimal risk and comparative cost to what I had been paying per year for disease modifying drugs and I knew that I didn't want to sit at home as my MS continued to progress and wait the many years it will take for a comparable stem cell treatment here in the US.
It's not the right choice for everyone and many don't have the financial resources, but thankfully people and researchers and scientists worldwide continue to do the work that will make it an option here someday.
It's extremely hard to be somewhat of a pioneer in emerging medical fields like stem cell treatments. By some of us making the choice to try something new, we are the pioneers.
I have never lied or skewed the truth. I have never purposly ignored or not responded to anyone before making the decision to go or after returning home. I’m just one person and sometimes it’s not immediate, but I do my best to respond, just as I’m doing to you now.
I’ve always told everyone to keep in touch after they got home. Many do not and I understand why. It takes so much time and energy and many people have so much going on ... good and bad.
You are free to call me directly or email me anytime to voice more concerns and have an open discussion about what we went through.
My sincerest best wishes to you.