Sunday, October 30, 2011


All I'm saying is this has not been given up on!  I have a secret.  I'm not telling.  And I also have some hope of a new drug (Less likely) coming out soon...I do believe it will come out and could be a cure but am only a hoping beyond hope that it's soon.  Anyway...If things work as I'm hoping I or we will peddle the least the coast of Florida as a first step next summer or fall...well I'll say next year to be safe. :)  And no I am not telling my secret! :D  But I'm excited!!!!!

Wednesday, October 12, 2011


This story isn't about us.  My health recently has slowed our journey down.  This story is about two people who inspired me.  I've mentioned them before and I will again encourage you, if you haven't already, to read their blogs.  And  I'm sure you will be entertained if not inspired as I have been. 

What is amazing to me is when I first met Kelly and Tyler on the internet they were two strangers both set out with their beloved dogs on the same journey-They put their busy lives on hold to walk across the United States from the Atlantic Coast to the Pacific Coast.  Perhaps some of you have met them along the way?  I know Kelly and Anna passed thru my area on her journey.  Unfortunately I had not started following her yet at that time.  I wish I had.  I would have loved to have met them in person.  In what correspondence I have had with both of them they are both very kind and open people, willing to answer all my questions and offer advice for my journey.  I would have been in serious trouble without them.  It was Tyler who suggested adding the pack to my walks when I thought I was doing so good.  Ha.. I wasn't sure whether to thank him or shoot him! lol (It darn near killed me!) Better then than waiting and finding out when we thought we were ready to set out though huh?

We are so fortunate that these two were willing to share their journey's, the good, the bad and the ugly with us online.  They tell their adventures so beautifully in words and pictures.  Then they suprised me.  These two strangers joined forces to cross the Rockies, and share a support car.  Is it a small world or what?

Reading their blogs, they will take you along on their adventure.  You will see your country in an entirely new perspective-mostly good, some not.  You will see the beauty that is out there that gets overlooked and hear about the generosity that still exists despite the state of our economy.  These two will lift your spirits I guarantee it.  My question is, will they end up falling in love? <grin>  Hey, it would make an amazing story for a movie and defintely for a book!  Can you imagine the dinner conversations they would have to tell their children!  Okay..I'd better stop there in case they read this..

It's not too late, they are entering their final stretch of this walk.  Please click the links above, join them.  You won't be disappointed.  I know I haven't been.  Kelly and Tyler, if you read this, thank you so much for sharing your wonderful adventure with us.  I'm still hoping to make a similar one myself,  You are both truly an inspiration!  Godspeed my friends!

Sunday, September 25, 2011

9/25/2011 Adapting

The original purpose of this was to raise awareness of FMS/CFS.  Here's the deal.  We are still in this.  Lately though my health has been BAD.  At times I have not been able to use my hands and my feet have been numb.  My arms have been too painful to raise even halfway.   Simple things such as showering, brushing my hair, brushing my teeth, eating is very painful if not impossible.  At times I couldn't type or even grasp a cup.  My doctor adjusted my meds, had me on steroids for a round which helped some and suspects MS as well.  She wants me to see a specialist.  At the moment I have an appointment next month but our insurance will be changing at the first of the year for the better so we many cancel and wait it out til then.  (there isn't much else they can do different if it is MS and they find lessions in the central nervous system of most long time CFS patients anyway)

This has also prompted us to consider a possible/probable change of plans.  Derek thinks and I agree that biking would probably be easier on me and safer, less stress on my joints and muscles, more miles covered in less time and the bike would pull more of the weight of the trailer.  It seemed that carrying the pack was what really did me in also and there are a few other reasons.  It just makes sense.  It would enable us to carry a few more things for my needs.  Also while we do intend to camp a LOT.  We have recognized the necessity to have the funds saved to be able to stay at hotels when my body demands the rest/down time.

THIS WILL HAPPEN!  It may turn into a ride for invisible illness period.  And it may ...I'm sure it will be slow going.  But this snail will show you that the snail can make it!  I will promise this, if I have subscribers to this from the United States I WILL at some point walk or ride my bike to say hello. ;)  My HOPE is to be able to make that promise to European friends as well someday.

I'm pretty down right now, physically and emotionally.  But we can't allow this beast to rob us of living.  Somehow we must adapt while we strive for a cure.  I'm TRYING, I'm trying..IT WILL HAPPEN.

Sunday, September 4, 2011


It's been a while since my last entry for two reasons:  1)  I'm in a major flare and haven't been on the computer or doing much of anything.  2) I haven't been doing much of anything. :( 

I'm REALLY  struggling with this.  If only there was some way anyone who reads this could look into my heart and see just how much this means to me.  That's the thing about this illness, at least when it gets severe, it robs us of our hopes and dreams and those are what keep you wanting to get up in the mornings. 

Think about it, you might hate your job but it provides a means to  attain your dreams so you get up and slug on day after day.  It's the DREAMS or for some maybe goals is a better word you can relate to that keep you going?  The nice house, providing for your family you love, getting the supplies to be able to participate in the hobby you enjoy, setting back the money to take the trip you dream about, finishing the degree you stive for...dreams and goals.  Now, imagine having 99% of those ripped away from you or made equal to climbing Mt Everest.  How would you feel? 

We aren't done!  Now, on top of that every morning, nearly every waking moment you have to battle the most intense pain you have ever felt in your life in every single part of your body.  Far worse than the worst labor pains from child birth AND there are a lot of people who do not believe that it's that bad or even real at all.  Now how would you feel?

We still aren't done!  Remember I said 99%?  That 1%?  Your kids, your family.  You WANT to do everything for them.  You WANT to give them the best of everything.  They are afterall your one reason for getting up!  You want to spend time with them, do things with them, for them, provide well for them, be an ACTIVE part of their lives.  Instead you are a parent they remember as laying in bed more often than not, the reason they couldn't do things or have things other kids did.  Not exactly how you want your children remembering you is it?  NOW HOW WOULD YOU FEEL?

Derek and I talk about it a lot.  I'm not "suicidal".  At least not in the typical way.  I want to live.  In fact I probably want to LIVE more than most of you!  "So get on with your life!" you say?  How?  Get on with laying in bed crying in pain?  Because that's my life.  When I try to push and LIVE  it ends up making it worse than ever.  I've tried giving myself pep talks...there's still plenty of time!  This time of year is always bad for me.  I'm actually doing good not to be in the hospital. (which is true) Things have been particularly and unexpectedly tough and have called for me go, go going in a way that I simply couldn't physically and emotionally (emotional stress takes a huge toll on FMS and CFS) but had no choice lately so give yourself a break you'll bounce back! (I hope) But what if I don't?  I do not want to spend even 5 more years like this let alone 20, 30 or maybe even 40!  I can't. I'm sorry.  Call me selfish if you want but I simply cannot live a life like this.  And I would turn the tables on you and call you selfish for expecting me too!  You think I should spend years laying in bed in excrutiating pain for what?  For who?   If this is something that eventually I and my husband and children understand then what business is it of anyone else ESPECIALLY when not one single other person has vested any time to help make me have reason to choose any differently?  If an animal were suffering half this much people would put it down out of "compassion" yet people lack the same compassion for human beings!  They offer no answers, no relief, no help...just "suffer so I feel better".    If you have other ideas and want to be part of the solution by all means come on over!  I will hear you out and might give your idea a try if I haven't already and can afford it!  But DO NOT sit back, not involved in my life, knowing very little about me, not knowing what has and has not been tried or what I do or do not have the financial resources to try and follow through with, guessing and judging me for choices I make if you are not choosing to be an active part of my battle.

That said I am NOT  condoning suicide!  NO NO NO!  God No!  If I thought I had ANY chance at a life outside of laying in bed alone in pain then it would be a no go.  If anyone is reading this and feeling that low and you have anyone you can talk to about how you are feeling please TALK TO THEM!   What I am talking about here is 24/7 severe PHYSICAL pain.  Lately there have been times I couldn't move my arms or hands, could barely walk to the bathroom which is in my bedroom.  I need to shower and can't because it hurts too bad.  And financially we cannot afford for me to even go to see our family physican let alone a pain management specialist. We have doctor bills out the rear!  Everybody wants their money and they want it NOW.  And I can't do anything to help.  (We have a son who is facing medical issues also)  I have a BIG family who offers no support of any kind what so ever, in fact they don't speak to us at all.  They don't care if I die or my son does for that matter.  He was recently rushed to the hospital an put in ICU for respitory failure and nobody called or visited to see if he was okay.  No, if there was any other option.....suicide is a LAST resort but it IS an option as many before me have proven.

That said, that's what I have been wrestling with.  Is this dream over?  Or is this just an obstacle in the road?  Was this major flare suppose to happen so all of you could see what this BEAST is truly like?   I honestly don't know.  Today I opted to scream and yell about it.  For this moment at least I'm going to continue to scream and yell and hope others with it join in until the world starts listening and a cure is found then that last option will no longer be needed.  Hopefully I and the millions of others battling the beast can hang on and scream and yell long enough....Hopefully...

Monday, August 22, 2011

August 22, 2011

No I've not given up, although at times I've considered it. Ugh...This is part of why I wish I could just GO, not wait, GO NOW.  A great deal of my success is going to depend on mental stamina more than anything anyway.  I already know physically IT'S GOING TO HURT AND IT'S GOING TO HURT BAD.  I am going to exhaust my body incredibly bad.  I know this and there is no getting around many many times I've thought why not just go now?  Honestly, if I find that jogging stroller or the equivalent, it's not ruled out.

So much has happened and it's still busy, this is why I haven't had time to update on here.  I figure, there's not much to say here.  Then today I though differently.  Afterall, what is my cause?  Fibromyalgia and Chronic Fatigue Syndrome and because of some major stress they have been flaring big time and I've not been able to do much of anything.  Such is the nature of the beast. My emotions concerning this have ran the gammut lately.  I've gone through feeling defeated, being angry, knowing that as long as I am still determined to do this then I am not defeated but far would I make it on days like these?  That's where that mental stamina comes in.  If I'm having an angry day or stubborn day I could probably make it further than on a good day BUT come tomorrow I would be totally unable to move. (Support vehicle would be a must)

I've also realized this walk is very personal in many ways.  I need to feel like I am worth something.  I need to show some particular people that I am worth something.  I need to feel like I am able to help others instead of always being the one who needs help.  I also realized it's about living. 

How can I explain this????

Monday, August 8, 2011


Where to start?  Right now I'm hurting so bad I can barely type and that's WITH my pain medication.  Further I missed the funeral of a very dear Uncle this morning partly due to my illness.  On the other hand I probaby wouldn't have known about his passing had I not been able to sleep last night due to the pain but the lack of sleep and pain has kept me pretty much immobile today. 

I took the advice of current walker Tyler Coulson and tried walking WITH a pack and BOY WAS HE RIGHT!   It makes a world of difference!  And my body is telling me so! (Note to self:  support vehicle definitely desired,  or hotel sleeping should be worked into budget.  And a jogging stroller is a MUST)  I did make it three miles with the pack but wow.  And it wasn't even a full pack. I mean, a full pack will be heavier than what I carried.  I didn't weigh what I carried but I'm sure it wasn't equal to a full pack.  I'm feeling very much like a wimp right now.  Hurting physically and emotionally. :(  But I'm just beginning and as I said before GOD willing this will be a success!  And I will now add to my causes "In honor of my Uncle Bob" who I did not get to say goodbye to today.  He loved God as did my Dad, whom I get my adventurous outdoorsy side so I'm sure I will be thinking of them a LOT along this path.

But people don't realize how those of us with this illness have to "pay" for everything we do.   Had I known about his passing and funeral of course I would not have walked at all to be sure I could attend.  Those of us with this have to think of things like that and sometimes our bodies still won't cooperate.  As it is, although I did write to my cousin, there are likely people thinking I just didn't care because I can't possibly write and explain to everyone, and others just do not understand or refuse to.  THIS is why I write and this is why it's so important to me to succeed in doing this walk and getting to talk to people across the nation about FMS and CFS.  I'm not going to hide my pain;  I won't be able to like I can here in the safety and shelter of my home.  And every step I take I will think about those who suffer who have no choice but push thru their pain because they have to live and are denied SS disability and have no other means of support.  Hopefully at least in some small way I can help.  That is my prayer, that is my hope and my dream.

Saturday, July 30, 2011

July 31, 2011 Just a note

Nothing eventful as far as the walk.  Infact I've been lazy as far as walking because we had a houseguest from Switzerland flying in today and I had some other things I wanted to get done as far as that went. why am I posting today?  Well I was thinking.  I'm not going to get long winded.  I'm not going to explain why because I think if you do you will understand why.  I'm just going to highly suggest that sometime when you are on here take the time to read a blog or journal one of the current cross country travelers has been so kind to share with us.

Like one of the following-

Wednesday, July 27, 2011

July 27, 2011 A FAMILY AFFAIR????

Hey!  I'm excited!  Although I think he will need a LOT of encouragement to hold to this! lol Derek *said he wants to train with me and  use his vacation time to walk with me starting out next summer if our daughter Caitlyn wants to do it too. (Once school lets out)  I'm looking forward to getting in shape as a couple if not a family! :)  As well as seeing the country in this way.  It should be interesting.   He walked with me part of the way on my first training walk, but not all the way.  I went 5 miles while he went about half that.  So much to do to prepare when I WISH we could set out right now!

I should warn you...I'm a can count on LOTS of pictures.  In the top one I was trying to capture rainbows in the clouds but my pictures just don't do God's beauty justice.  The 2nd is Derek admiring a turtle in a small stream and last is, well..just road. lol 

Please help me keep Derek encouraged about this if not more excited! 

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!