An Open Letter To God

Dear God,

Why does my body have to be so broken?  What did I do to deserve this?  I've tried to be a good person all of my life.  Heck, as a freshman in high school I was even given the nick-name of Little Miss Sunshine, because I'd walk around with a smile on my face all of the time and be friendly to everyone.  I was a cheerleader, but it didn't matter what circle someone ran in, I was ready to give them a smile and say "hi" to them.

Throughout the years, I've met several young adults through my kids that weren't lucky enough to come from good homes.  I've done all I could for them.  I've even taken a few of them into my home putting a roof over their head, feeding them, and tried to be a positive role model for them.  I cared about them as if they were my own children. To this day, they still call me "mom" when they see me. 

I've always loved old people and animals.  Still today, if  I'm in a store and pass someone elderly, I can't help but to smile at them.  I've been known to stop my cart in the middle of an isle, and carry on a conversation with an elderly woman if she responds to my smile with a question or statement.  When I was doing my nursing clinicals and was doing my geriatric round at nursing homes, I had an elderly lady with apraxia that knew I'd be there on Thursdays.  She would be waiting at the front door when I got there.  Greeting me with a kind, sad smile.  She was my shadow throughout the day, and I'd talk to her between residents.  As the day would ware on, she'd start to get agitated and tear up.  When my shift was over, she'd follow me to the door holding my hand, crying, and shaking her head no.  Giving her a hug and promising her I'd be back, my heart would be breaking.  I never once saw a visitor come to see this woman.  I'll never forget that poor, beautiful lady. 

I could go on and on about the gentleness of my heart dear Lord, but you already know all of this.  You know what kind of person I am, so why; why am I stuck in a broken, useless body?  Why am I stuck in this life of hell?  Shouldn't that be the punishment for a bad person? 

I have so much that I would like to do with my life.  I have hopes, and dreams.  Desires.  Wants and needs.  I've never asked for much out of life, dear God.  I've never been materialistic. I wasn't the type of wife that would whine if I didn't get a gift on a holiday.  I never asked for flowers or complained that I didn't get a vacation. 

I do want the basics in life though.  I'd like to be able to work, for both the money and the social interaction.  My broken body has taken that option away from me though, and the mental constraints of living this way has become completely unbearable for me today.  I just don't know what to do any more. 

Loading the dishwasher earlier, has me sitting here fighting back tears.  For once, I allowed a few to fall today.  A person becomes mentally tired of being in so much pain.   Of trying to stay mentally strong day after day.  I'm sitting hunched over, to try and help with the pain.  It doesn't relieve much, but I just can't sit totally upright. 

The arrearages from child support are finally all paid off.  Now, I don't have any income what-so-ever.  It's gone.  I can't get food stamps, because once I lost my employer health insurance through my husband when he left me, I had to leave my rheumatologist.  She didn't take the insurance I then had.  As it turns out, no rheumatologist anywhere near me took it.  If they did, they weren't accepting  new patients.  To be eligible for food stamps without working, you must either be on disability, or your doctor must write a note stating your condition, that you are unable to work, and how long your condition is expected to last.  My family doctor won't write one.  She said she doesn't know enough about fibro to know if I truly can't work or not.  So, when my old note from my rheumatologist at the The Cleveland Clinic expired, I was just done. 

I've applied for disability.  A year and 7 months ago to be exact.  I was turned down on the first application, and the appeal.  I'm still waiting for my court date to go before the judge for my final appeal.  Today, I've lost hope.  Hope for everything.  Hope is the word I live by and you all see so often in blog posts from me, but I'm just done for right now.  I don't know how I'm going to buy essentials such as laundry soap and toilet paper, let alone food or to pay bills.

Oh, if only could just go out and get a job.  I truly want to work.  I've lost close to 51 pounds and my clothes are too big.  The other night, every time I'd turn over in bed, my pj pants would twist and come part way down.  When I walk, my pants sag.  My shirts are all big, so it kind of disguises the weight that I've worked so hard to lose.  Being single and having grown kids with their own lives, I crave social interaction with other adults.  My online friends and support is wonderful and I'm so blessed to have every one of them in my  life; but I need to talk to real, in person adults too.  I need to be able to get out of my house and have a purpose each day, dear Lord.  If I can't even do the basic household chores myself though, how in the world could I ever work a "real" job? 

Fibromyalgia, severe arthritis, DDD, COPD, depression, diabetes, IBS (the list goes on & on) has robbed me of a real life.  A good life.  A normal life with any quality to it.  This is no way to live, dear Lord.  Why, why has my body failed me?  Why do I have to be so broken?

A New Year; New Hope

 

Well, 2014 is here.  I hear people say all the time "It's just another day" or "It's just another year, nothing to be excited over".  Well, it is something to be excited over, in my opinion.  Every new year, brings new hope that this will be the year that a cure is found.  At the very least, it brings hope that a new treatment that works for everyone is found. 

 

Each year, fibromyalgia and other chronic pain conditions gain more awareness.  I've said it from day one, but I'll say it again ...awareness ='s education ='s more donations for research, and research ='s a possible cure or new treatment plan.  Even a new treatment plan ='s hope for getting our lives back, and that's all that any of us really want, right? 

 

I've sat here the past two days, in a pain flare.  Mind-boggling-make-you-grouchy-curse-under-your-breath-makes-you-want-to-gouge-your-eyes-out-pain.  Not just a little sore & achy type of pain. I know that on this blogs facebook page that many are in this type of pain flare right now.  I think that all of this snow and the frigid temps are partly to blame for all of the flares right now.  This is no way to have to live.  -I'm using the word "live" loosely here, too.  Because really, how is being in pain every single day of your life, being so tired and fatigued that you can't even keep up with daily chores, living?  It isn't.  We're sustaining.  Sustaining our existence, and that's about it.

 

Almost two years ago, I was completely overwhelmed at the thought of diving into the blogging world, and the act of advocacy.  Thoughts crossed my mind such as "Who would be interested in what I have to say?  Who could I really help?  I don't have a medical degree nor do I have a degree in journalism.  I don't know anything about social media, and I barely know how to use my computer".  You know what though?  I was so sick of the pain and the fatigue, and the insomnia and brain fog.  I was depressed, and overwhelmed. 

 

Google had become my best friend.  I googled, and googled, and googled reading every blog I could find.  Most of them, wrote about fibromyalgia but then would add something along the lines of " ...but we won't let fibro define us" or "we're bigger than fibro" or some other peppy-I'm laughing-at-this-illness-and-won't-let-it-get-me-down-make-me-barf-type-of-crap.  Now, I'm all for positive thinking.  To know me in real life, you wouldn't believe the positive spin I put on my life.  You wouldn't even believe half of the crap I've been through, and I still maintain a positive attitude most of the time.  Heck, I was a high school cheerleader, after all.  But!  I just could not relate to what these other blogs were saying.  I'd come away from reading them, feeling even more sad and alone than before I read them.  How could they be so positive and upbeat all. the. time?  How?  People complain that there isn't enough research funding to unlock all of the mysteries that fibro holds.  Mysteries that could lead to a cure.  Well, if people think that fibro isn't a big deal; that fibro doesn't define a person's life, how can we expect people to donate for further research?  No, fibro is a big deal.  Fibro does define a person's life. 

 

Finally, I thought about one of my dad's favorite sayings growing up.  A quote from  David Glasgow Farragut that I actually used in a Voices Of Democracy speech contest when I was in high school.  "Damn the torpedoes.  Full steam ahead!".  If I felt alone, and sad, and depressed then someone else had to feel that way too, right?  A vigor ran through me.  I vowed to myself that even if one person read my blog, and I helped them to realize that someone else felt the same way they did, that it would all be worth it. 

 

Once I started the blog, and I realized that there actually were people out there that felt as crappy with fibro as I did, I started to get angry.  Angry that there were people out there making fibro look like it isn't a big deal.  Making it seem like "Oh, it sucks, but we'll be ok ...we're fighters!".  We most definitely are fighters; but we have to be or else we just wouldn't survive!  I was angry that the majority of the public; even a lot of doctors and people in the medical field, were so uneducated about how damn tough it is for us on a day to day basis.  Angry that people just don't "get it" when it comes to what fibro is really like for those of us that suffer.  That, is when I vowed not only to myself, but also publicly, that I will advocate for education and a cure until the day I die. 

 

At that point, the idea of my seminar was born.  I started gathering information and facts, and putting the seminar together.  My life-long goal, is to travel to every major city in the U.S. presenting this seminar.  Giving tips and lending support to those who suffer with this illness.  Educating those who do not suffer with it, as to the eye-opening realities of our day-to-day life.  Submitting proof that it's a real condition, with real life-altering consequences.  If people only read or hear about the positive stories that are shared, then why should they donate to research?  Life isn't so bad ...these people are managing their lives just fine.  No.  Just ...no.  The vast majority of us are not.  My mission is to show that research is needed.  A cure is desperately needed.  Hell, I'm a 43 year old woman, and I can't even support myself.  How sad is that?!  It sure isn't because I don't want to.  I hate ..no, despise the fact that I can't work a "real" job.  I hate that I can't just breeze through my housework and cook lavish meals.  I can't just jump in the car and go places and do things that my friends are doing.  My life doesn't work that way.  Because of fibro.  I'm not alone out there either.  It's time we find a cure or a solid treatment plan that will work for everyone.  We deserve to live a fulfilling life. 

 

I don't know when my dream of presenting seminars will come to life.  The old cliché of "nothing in life is free" is unfortunately true.  I need funding to be able to secure locations in which to hold the seminars, along with travel expenses and marketing.  After all, what good is a seminar if no one knows it's being held? 

 

Nineteen months ago I started a GoFundMe account, to try and generate the funds needed to get the seminars started.  In that nineteen months, the page has received $85 in donations.  Several of them from the same person, bless her heart.  She's a fellow blogger that also has fibro.  I've seen pages on that website, set up because the person is asking for money to pay their house payment.  Or because they want a new or bigger vehicle.  These pages actually receive thousands in donations.  What this proves to me, is exactly how bad this seminar is needed!  It proves to me that the vast majority of people just don't "get it" when it comes to fibro.  They have no idea how badly education is needed, and how desperate we all are for a cure.  All this does, is drive my passion for getting this off ground even deeper within my heart.  It may be another 19 months before I have the money needed to start the seminars.  It may be 38 months.  Regardless of how long it takes, this is something I will never give up on.  I care too much about my quality of life and my future.  I care too much about your quality of life and future!

 

As we start off 2014, I want to make sure that each and every one of you know how much you mean to me.  I truly care about every one of you, and value your readership more then you know.  I want you to know that I "get it", and I'm here for you.  I also want you to know, that I'll always educate and advocate for our future; our cure.  If you know of an individual, business, group, or organization that might be interested in donating to the seminar fund, please pass along this link to them.  http://www.gofundme.com/pc0hc  Let's go forth in 2014 hopeful that this will be our year.

 

Love and Gentle Butterfly Hugs,

-Amy