Sept. 4, 2011 WRESTLING WITH THE DEVIL (QUESTIONING MYSELF)

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...

July 8, 2011 OUCH! THIS IS WHY I'M DOING THIS!

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.

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 shutterbug...you 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! 

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?

MISSION

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!