Tuesday, July 26, 2011

July 26, 2011 planning

Hello!  My name is Lori Jones and I am a 43 yr old wife and mother of 2.  I have battled FMS (Fibromyalgia) and CFS (Chronic Fatigue Syndrome) since I was 13yrs old.  While science and the public has come a long way over the past 30 years it amazes me how, despite the millions that suffer daily from these diseases, so little is still known, so few have even heard of them and of those who have so many have been misinformed.  We who suffer also face a negative stigma that was attached to these early on, as I have discovered happens to many with new illnesses and afflictions  until science can finally explain them.  I find it shameful on our medical professionals and those who find it impossible to believe a person unless they can have cold hard facts sitting in front of them.  It demoralizes the patient and often shames the patient into withdrawing from society and from seeking help.  Which leads to FMS and CFS (also known as ME or Myalgic Encephalophy) having one of the highest suicide rates among it's sufferers.  How many other disabling diseases require that the sufferer not only battle their disease but defend their reputation due to having the disease as well?  There are only a handful of them and it's so very very wrong.  Sufferers of FMS/CFS did nothing to bring these devastating illness' on themselves so why are they punished as if they did?


It is my goal, my mission,  despite the pain and exhaustion my body feels, to set out on a cross country walk to raise awareness and hopefully funds to help families financially burdened by these illness'.  I *Hope to walk across the United States but that isn't the ultimate goal.  I will be happy if my body allows me to walk the eastern sea coast.  At the same time I will continue walking as far as my body will allow even if I do reach the Pacific.  For me personally the physical challenge is to log miles period and to keep walking.  With Fibromyalgia we need to keep as active as our bodies will allow to help manage the pain.  But due to being a smoker (which I will be one yr smoke free next week!) I faced repeated hospitalizations for pneumonia over the past 5 years.  This caused me to be basically bedridden and gave the diseases the upper hand.  Now I am fighting back for control of my body! 

I know this won't be easy.  I am currently in the planning phase.  Trying to get the supplies I will need together and figure out the best way I will be able to successfully do this.  God willing, this WILL be successful! 


  1. I hope this works out for you and that you (and your family) can start your walk next year. My daughter Kelly is walking the country this summer with her dog and is enjoying it.

    As I share FMS with you, all I can say is walk on your good days and rest on the bad ones!
    Good luck.

  2. Hi Linda and thank you! Is your daughter Kelly as in Kelly and Anna? If so it's a small world! I just recently met her on twitter! :) Remarkable young lady! And yes, some days I wonder Can I do this? My body has been screaming NOOOO! many days. BUT..that's part of the point, people don't generally see us on bad days and don't realize how bad this is. We are working really hard and praying really hard that we can secure a support vehicle.