Exciting things are coming - edited and updated!

First off, I hope everyone had a magical Christmas and are looking forward to a wonderful New Year! I ask that you read this entire post as there is some very important information and some changes to the blog that I am going to explain. For those of you who regularly follow my blog (can't believe I actually have people who do), I am sorry for the extended gap in time since my last post. I didn't realize it had been almost month since I last said anything but quite honestly, I wasn't in the most positive of places so I needed to pull myself out of that funk and find my peace again. Dealing with the spread of my RSD, the pain, the craziness that is Christmas and all the other chaos of my life proved more difficult than I thought. I can easily throw on a smile and say I'm doing ok to those who ask, but inside, I was struggling.

The blog has taken off like I never expected it would. I have heard from family members, friends, old friends whom I haven't spoken to in ages and strangers. Many of those I have heard from have asked that I add a donation button to my blog so they may help with medical bills or treatments that I haven't been able to afford. I wanted to thank all of those who were kind enough to even think of doing such a thing, but after careful consideration, I have determined that it is not in the spirit of my blog to ask for personal donations. While I do have a link on my page for this (thank you to the friend who set this up), I will be moving it to the bottom of my page as to not call attention to it (I only say this so you don't confuse which one is to donate to the new organization. The donation button for the organization remains at the top of my page)and will ask my friend to remove it (sorry, I'm not tech savvy enough to do so myself). Please understand I am not belittling those who do have blogs for personal fundraisers. Blogs are for each individual to use as they please and some may use their blog as a means to raise money for their families, for medical bills, for adoption, etc.

The purpose of this blog is to share my journey, raise RSD awareness and to help others. I am excited to announce, I am in the process of developing a non-profit organization (working on obtaining an LLC as we speak) to help those with RSD! After meeting so many wonderful people who share this disease and through my own experiences, I have learned there are many that struggle to pay for even the basic care of this disease such as doctor visits, medications and other necessities. Some of the treatments proved to be most successful such as nerve blocks, injections, spinal cord simulators, pain pumps and Ketamine infusions are out of reach for most RSD patients due to the cost. Unfortunately, some of the other treatments which have proven helpful are still labeled as "experimental" even though many have used these treatments have since experienced lessened pain and in some cases, put it into remission completely. Any treatments that are labeled experimental are not covered by insurance and typically, patients are required to pay the full cost of the treatment upfront. It is my belief that many of the treatments have not had the experimental label removed because there is not enough funding to complete the necessary trials and research for RSD.

Living with this disease is not living. What may be easy to you, like getting out of bed in the morning, getting dressed...all that is a huge chore for us. Without proper medical care and the right treatments, RSDers miss out on life. I don't know about you, but I'm not ok with that and I am forming this foundation to change that. Once it is up and running in its' full capacity, my organization (still working on the name) will allow people to apply for grants to assist in paying for their treatment. Everyone deserves a chance to live a life as close to normal as possible and if my organization can help someone pay for the medication or treatment that will allow them to do that, then I consider it a success. I will talk more about it in my next post, but in the meantime, I just wanted to let everyone know that if you use the donate button at the top of the page, all of those proceeds will go towards this new organization. You will be helping someone possibly get their life back which will not only benefit them, but everyone around them. Thank you for considering helping someone. All donations, small or large and more than appreciated!


xoxo