Am I As Invisible As I Feel?

I know that many who will read this post, know me well.  Those of you who are new to this blog, may start reading this, and ask yourself "What is this lady doing? If she's an advocate for chronic pain and research, then why isn't she being all super happy and over the wall professional?".  I'll answer that for you right now, so you don't have to pause and ask yourself this question a paragraph or two into things.  Yes, I'm a chronic pain advocate. Yes, I will do anything and everything within my power to advocate for further research to find a cure for chronic pain conditions such as Fibromyalgia, Lupus, RA, CFS/ME, CRPS, Osteoarthritis, ...and the list could go on forever and ever unfortunately.  What I am not, is a doctor.  Or a scientist.  Or any type of medical professional.  I've never had a college writing class other then English composition I & II.  I've never had a public speaking course.  In fact, I don't have any fancy initials of any type behind my name at all, except for those I've jokingly donned as CPS (Chronic Pain Sufferer).  

In this blog, I "talk" about real problems.  Real feelings, that sufferers of chronic pain conditions feel.  If everyone out there that suffers from Fibro, or Lupus, or what-have-you, is all happy and positive in all of their posts, then they aren't being honest.  If they aren't going to be real about the facts, feelings, and challenges we face, then why write or try to advocate at all?  Because in my own personal experience, as a person, not as an advocate, people are not going to be able to really grasp the true concept of this illness if you don't tell them what the true concept of this illness is.  If they don't suffer it, they don't know it.  It's that simple.  If someone reading this can't connect with me, and really understand what I'm going through, then how can I expect them to help?  If this illness (any of these illnesses) aren't bad enough that you're still all happy and strong every day, then why should they bother wanting to contribute funds to further research?  After all, our life must not be so bad if we can remain so strong.  That said, you won't get any "sugar coating" of my life or of this illness on this blog.  What I put, is how I feel.  What this illness has done to me.  How it's made me feel.  

So how am I feeling?  I'm feeling really sad.  Not just Fibro, but almost all chronic pain conditions run the co-morbidity of depression.  If you hurt every single day of your life, and you've had to give up things and people you love because of your health, you'd probably be depressed too.  No joke.  I'm not embarrassed, nor am I ashamed, to admit that I suffer, horribly, with depression. I can't begin to tell you the amount of tears I've shed off and on all night tonight.  Right this very minute even.  I've gotten so good at crying, that I do so silently now.  The tears slide down my face, and no one would be any wiser if they weren't looking at me.  Sometimes, like tonight, I often wonder if I'm invisible.  If my tears are invisible.  

I feel as if I'm stuck all alone, confined to my dining room because God knows the pain I'd be in if I tried to sit comfortably in my living room.  This computer, it's my gateway to the outside world.  The real world, where people go places, and do things, and have friends, and date, and enjoy life.  Where I can look, and read, and see that people still go places.  They still have friends.  They still have fun.  If I didn't pop online and make a status on facebook, or post on this blog, then I'm not sure that anyone would even know that I exist anymore.  This illness, it's taken so much from me.  I sure didn't let it.  I didn't want to give up a happy, fun, carefree life.  I didn't voluntarily hand it over.  Heck, two years ago I would've laughed if someone had told me this would be my life now.  This.  I don't even know what else to call it.  

This crap with my body, ...the fibro, ...the still unnamed autoimmune disease that's putting calcium deposits in my lungs, and on my bones.  It's created the most lonely, miserable, low self-esteem life that I could ever dream of.  I'd love to blame it for stealing my marriage.  I have blamed it for stealing my marriage before.  Right here on this blog even.  I don't think so any more though.  He'd left me before, when I wasn't this sick. If he truly had loved me, this wouldn't matter.  No, in the past year he's been gone, I've come to realize that this was just his excuse.  His idea to blame, so that he didn't have to shoulder the burden of guilt himself.  His excuse that my health was just too "stressful" for him was just an easy out.

One time when he left me, we divorced.  We were divorced for a year, then decided to give it another try and remarried.  In retrospect?  A horrible idea.  Still though, things were hard for me.  I had four children.  I went to community college for nursing during the early morning hours.  I went from there, to a 2nd shift factory job Monday-Friday.  On Friday night when I'd get off at the factory I'd go straight to work as a waitress and bartender until close.  I'd go to work at the same bar much earlier on Saturdays and worked until close.  On Sundays, I worked at a different bar that served a lot of food and worked a 12pm-5pm shift.  It was hard.  But I could do it.  I did do it.  I had plenty of money to support myself and my kids.  I was out among the living.  I had friends.  Friends from college.  Friends from work.  Friends from high school.  The kids and I went places and did things.  I was asked out on dates. I was pretty. I had a great attitude and was fun to be with. If I was alone, it was by choice.  

Oh how the years change and complicate things.  This time when he left, I hadn't worked in years.  It hurt my body too bad.  I didn't know what was wrong with me, but it hurt to work and my husband told me "Well, don't work then.  I make enough for us to get by".  I didn't work.  I sat home, taking care of the house and the kids.  I engrossed myself into their school activities, and their friends.  I had supper ready for my husband damn near every night by the time he walked in the door from work.  I filled my life and my heart with being a wife and a mother.  By the time he left this time, there's no way I could work.  No way.  It puts me literally in tears to stand long enough to fry an egg.  I don't have any "outside" friends, because my husband and my kids were my life.  I concentrated for years on nothing except for them.  I truly believed my husband was my best friend.  I'm not pretty any more.  My dad's side of the family is blessed with the fat gene curse.  Before I was sick, I kept my weight off.  I had to work my ass off to stay nice and curvy with a flat tummy and legs of steel, but I did it.  Now, I can't exercise like that. Some days I honestly have to have my youngest child, the only one who still lives at home, come into my room and help pull me to a sitting position in the morning because my lower back hurts too badly that I can't sit up on my own. When you're in that kind of pain, exercise is not an option. I'm fat.  I'm more then fat, I'm obese.  If anyone tries to say that doesn't carry a stigma with society, they're out and out lying!  

How am I ever supposed to meet new people?  How can I make friends?  I can't go get a job, and meet people in the work place.  Heck, I wouldn't even begin to even know a shift I could work because sometimes with my insomnia I'm not able to go to sleep until 8am.  Sometimes it's noon the next day.  Other times, last night for example, I actually was able to fall asleep around 12:30am, but then I was awake again by 5:30am.  By 1pm today I couldn't stand it and fell asleep for 2.5 hours.  What job would be able to accommodate me?  Even though I believe in God, and I pray, I can't even commit to going to church because I never know if I'd be awake or not. Even for evening sessions.  Or if the pain will be too bad to go. How am I supposed to meet people to make new friends?  As for dating?  Huh.  Yeah.  I couldn't buy a date to McDonald's.  They'd take my money and throw me out of the car before we got there.  Seriously though, what man, what good man would want a 42 year old woman who's fat, sick, and can't work to support herself?  Not much of a catch.  This illness, ...or these illnesses, have stripped from me every single shred of self confidence and self worth I've ever had.  

Still, I don't lose hope.  This hope, drives the fire in me.  It pushes me to tell my story.  It forces me to swallow my pride and not care what some may think of me for admitting my weaknesses and feelings. For admitting my physical and emotional pain.  This hope is what's motivating me to organize a walk/run in September to bring about awareness of chronic pain conditions and to raise funds for further research.  I have the hope of a cure to be found in my lifetime. I have the hope of a treatment plan that will actually work, to be found yet in my lifetime.  I don't have a clue how to organize this thing, but you can bet your ass that come September this thing will be happening, because I will never give up.  Never.  If I give up, then I'm letting go of hope.  I can't just sit back and depend on others to create enough awareness and research for a cure to be found.  I have to do my part in this.  A cure may not be found in my lifetime, but it sure as hell won't be from my lack of trying to do all I can.  

See, no matter how sick, or how sad or broken I may seem at times, I still have hopes and dreams.  I'm fighting tooth and nail right now, to try and ensure that my hopes and dreams come true someday.  I hope to live without debilitating pain every single day of my life.  I hope to be able to work again someday.  I hope to be able to exercise and get down to a healthy weight.  I hope that someday I can show the world that I'm still that same fun, funny, fly by the seat of her pants girl that wants to go on vacations.  Go out to eat and to movies and dancing on dates.  That I still have a huge heart where I like to put those in my life ahead of myself.  That my true joy stems from making others happy.  I have hope ...for a full, fun, life with a loving relationship in it at some point.  That is why I sit here behind my computer, and I post about how important it is to educate others, anyone who will listen, as to what it's really like living with a chronic pain condition.  That is why I open myself up on this blog.  It's my hope for a cure. For now, I'll sit here invisible to the world, hiding behind a computer screen.  I'll cry my silent tears, and I'll hope and dream for the day that I can run outside and jump up and down!  For the day I can take my life back from Fibro and autoimmune illness. The day that living a life with chronic pain is behind me and I can look to the future.

  

Almost A Year Later, And A RAOK Challange

As Easter quickly approaches, my mind keeps wandering to a year ago.  Last year starting on Good Friday, my world came crashing down.  I remember hearing my husband's alarm clock going off, but I was too tired to rouse.  He had the day off of work, and was heading about an hour and a half South of us, to look at some public hunting ground.  He'd always loved to hunt and fish, and he said he heard there was a lot of wild turkey at this particular spot.  With turkey season fast approaching, it didn't seem odd to me at all, that he'd be going to check out hunting land. 

I laid there with my eyes closed, trying to stay enveloped in my warm, cozy, state of sleepiness.  I heard him get up. I heard him go into the bathroom and come back out.  I heard him get dressed.  Just as I was drifting back off to sleep, I remember hearing him come into the room and stoop down on my side of the bed.  I felt his breath on my face, and his soft lips touch mine in a kiss.  He whispered "Good bye, I love you".  I whispered "Bye, I love you too.  Be careful". Little did I know, that would be the last time I'd ever hear him say those words to me.

The previous night, Jason had told me he'd be home by 1pm.  Around 11:30am or so, I tried to call his cell phone knowing he'd be on his way home.  He didn't answer.  I figured he must just be delayed on starting back home, and that he'd be returning my call any moment.  An hour past, and my phone hadn't rang.  I tried his cell phone again, and the same thing.  No answer.  This time, I left a message.  This scenario went on for another couple hours.  After that, his cell went straight to voice mail.  He'd turned it off.  I was bewildered, scared, anxious. You name the emotion and I probably felt it. 

Late that afternoon, I checked our bank account online and it was empty!  I honestly started hyperventilating and crying uncontrollably.  I knew this meant he was gone.  He'd taken all the money we had, and he'd left me on a holiday weekend.  We'd been at the grocery store earlier that week and I suggested we buy what we needed to make Easter dinner, but he'd told me no.  He said that we'd go shopping for our Easter dinner on Saturday, that way we wouldn't have to freeze the ham, or have it taking up refrigerator room.  At the time, I thought that was reasonable.  In reality, he'd just screwed us out of having an Easter dinner.  -Not that I could eat much anyway being so upset, but it was screwing my kids, my family, out of an Easter dinner.

Hope.  What a small word, but one that can mean or bust anything in life.  I kept up hope that he'd show up and we'd go buy what was needed and have Easter as a family.  I kept up hope that he wouldn't be cruel enough to leave me over a holiday.  That even if he wanted to leave me, and was going to leave me, that he'd at least come home and buy what we needed to make a holiday meal for our children and us.  Our family.  

None of my calls were answered Friday or Saturday.  Our then 16yr old daughter at the time, kept sending him text messages to which he wouldn't reply.  Finally, on Easter morning at 11:30am he sent our daughter a text message that said "I'm leaving your mother but not you.  I'll be home late tonight to get my things".  He'd been cheating on me with a woman he'd met online on some game site.  I couldn't believe it. I couldn't stop crying uncontrollably.  I felt like I couldn't breathe and I honestly thought I was going to have a heart attack and just die.  That's no exaggeration.

I hastily typed a facebook status saying something about what a jerk of a guy I was married to, that he'd left me completely out of the blue, wiped out our bank account, and didn't even care that our family wouldn't have an Easter dinner this year.  Then, I ran sobbing to my bedroom and laid down in bed, not knowing or really even caring, if I'd ever get back out of bed again or not.  I laid there sobbing and gasping for breath, and must have fallen asleep without realizing it. Before I knew it I heard my dog start barking.  Then, I heard a knock on my front door and my daughter talking.  I heard her say "Oh my gosh, this was so kind of you guys.  I can't thank you enough".  I tried to hurry and get out of bed to see what was going on.  In my state, I was fumbling around and it took me a minute or two, to walk out of my room.  By the time I got out to the dining room, my daughter was standing there with grocery store bags on the table, and holding one in each hand.  

"Courtney, what's going on?" I asked.  She started lighting crying, as she'd been crying and upset about our circumstances too.  She said "Mom, that was Joe.  He said that Mandy saw your facebook status and said that no one should go without an Easter dinner.  They went out and bought everything we need to make an Easter meal and brought it to us.  All the way down to pie and whipped topping for dessert".  Once again, my tears started flowing.

What's even more amazing?  This beautiful young woman didn't even "know" me.  Her fiance, Joe, and my oldest son met in drivers ed class years before, and he'd been a friend of the family ever since. Joe wasn't living near us anymore, he was living with Mandy whom I'd never met in person.  To this day, Mandy and I talk on facebook but I've still never met her in person. 

This beautiful young woman is Mandy.

When I'm super upset, I can not eat.  I hadn't eaten anything since early Friday morning, and this was Sunday afternoon.  Knowing I was too upset to even cook, my youngest son and his fiance took the bags of food to the kitchen, and they started making us a meal.  With everyone coaxing me to eat, I managed to get a few bites of everything down.  

Although embarrassed and ashamed that I couldn't buy the stuff for our dinner myself, I was so so very grateful for what this lady did for my family and myself.  I honestly couldn't wrap my mind around it.  I couldn't believe the lengths she went to, just out of the kindness of her heart, to bless a family she'd only heard about, and read about online.  

In all honesty, which you all always get from me whether you like it or not lol, I was worried how the approaching holiday was going to affect me emotionally.  I was afraid that I'd feel my heart being ripped out of my chest again.  That the pain would come flooding back.  But guess what?  The thing that I actually keep thinking about the most, is the random act of kindness that was showed to my family.  Yes, writing this made me a little emotional.  I've blinked back tears a few times while typing this.  A year ago those tears were because he left me.  Because of the hurt I felt.  The way he left me.  Wondering what I was going to do.  This year though?  Even right tonight, while typing this, most of the emotions I'm feeling are due to Mandy and Joe showing us the unexpected love and humanity that they showed us.  

No matter how many words I write, or how hard I try to convey how grateful I am for what was done, it won't be enough.  I just can't find the words to describe how it made me feel and how thankful and grateful I was (am) for it.  I vowed that I'd always try to provide RAOK's in return for the one done for me.  I still don't have any money.  I hadn't worked in years due to my health.  I'm fighting appeals with social security to receive disability.  Our one saving grace is that I don't have a mortgage or rent payment. My house needs a lot of work, but we bought it outright with cash when we bought it.  I'd love nothing more then to be able to surprise a struggling family with a complete Easter dinner this year, but since that's financially impossible for me to do this year, I'm trying to do as many free RAOK's as I can.  

I challenge you all to provide as many RAOK's between now and Easter as you possibly can.  It doesn't have to cost you anything. Since I struggle financially so much right now (yeah, that part about not leaving his daughter?  He went from June 10th until mid-January without seeing his daughter one time, and is $5000 behind in child support.  He DID leave her too) I do what I can that's free.  For example, while grocery shopping late one night, the store was almost empty.  There was a very elderly lady in there shopping.  She met my eyes with a smile on her face and I smiled back.  She paused and said hello.  I spent over 10 minutes just standing (which oh my gosh just kills me pain wise) in one spot, talking to this poor, lonely old woman.  By the end of our conversation, she thanked me for listening and asked she could give me a hug.  Well of course!  Being hugged is honestly one of the TOP things I miss about not having my husband any more.  Another time, an elderly woman looking at something on the bottom shelf at the store. She had her eyebrows knitted down and looked genuinely concerned.  I stopped and asked her if she needed something on that bottom shelf.  She did.  I almost didn't make it back up, but I bent down and retrieved the item for her. She was oh so tickled, that I still felt good about doing it a week later.  Heck, even today it still makes me happy.  The other day at the dollar store, a lady was in line behind me and only had two items.  I told her to go ahead and go ahead of me in line.  <----That one I do a lot of the time.  Once, a man and woman were buying several packs of hot dogs.  They were on sale.  I had a bunch of coupons that when doubled, made the hot dogs free.  I approached them and told them how I had coupons to make them free, and asked them if they'd like a couple.  They were so tickled up.  -I'll admit, I kind of felt like a freak approaching them an asking if they'd like the coupons, but I'm glad I did as they were so happy about them.  My most recent RAOK, was just last week.  I again was in the Dollar General store in my tiny little village.  I have a bunch of coupons for $1 off kids Colgate toothpaste.  My store has it priced at $1.  I picked up four of them that trip for free (well ...close enough to free.  The sales tax was $0.07/ea).  A lady was in line behind me and looked pretty hard up.  She had two sweet little kids with her.  A little girl that looked around 5, and a little boy that appeared to be around 3.  I asked her if she'd like a couple tubes of kids toothpaste.  I explained to her that I got them free.  She acted bewildered, and said sure.  So I took them out of my sack and gave them to her.

I may not be able to do much, but I hope and pray that the little things I do, heck ...even by having The Fibro Frog, is making a difference to someone.  Both this blog and the facebook page ...which I'm completely guilty of posting way more there then here on the blog, bring me joy every time someone tells me "Thank you for his page.  You're page is what helps me make it through a day sometimes".  I hope that sometimes when I smile at a very elderly man, or woman, or couple in a store, that the warmth and love I have shows through my eyes and somehow touches them.  I'm not a Saint by any means.  I still have days where I sit and cry, and feel sorry for myself.  I still can get mad and have a quick temper.  Sometimes I have to really watch my mouth.  Over all though, I feel like I'm a good person, because my heart honestly is filled with a love and passion to help people.  In any way I can.  I'd always heard about RAOK, but I'd never been the recipient of one.  Until last Easter.  It completely changed me.  The pure joy it left me with, drives me to keep trying to give back.   Would you join me and possibly help change someone else's life, like Mandy did mine?  Do a RAOK.  Try it, it's fun and will leave you with a wonderful feeling inside.  

The Never Ending Day

I always hear people complain about Monday being a bad day.  I guess that I'm just not "normal" in any regard, because my Monday went perfectly well (aside from being in a ton of pain from pushing myself last Thur-Sun).  Instead today, Thursday, was like a Monday for me.  As usual, my insomnia has been horrible.  I didn't fall asleep until sometime after 3am last night this morning.  My daughter home schools online through our school district and on Tues and Thurs she goes into the building and does her online lessons in the library that way if she needs any help from a teacher, she has quick easy access to one.  She's a senior this year. She woke me up at 7:10am this morning by coming into my room saying "Mom!  Wake up!  Sasha was starting to throw up so I hurried and got her outside and hooked her to the chain but she just laid down on her side and white foamy vomit is coming out of her mouth!  Is she dying?".  I dutifully get out of bed exclaiming that I don't know if she's dying or not.  Walk outside to see her standing there perfectly fine, wagging her tail at me.  -Oh Sasha is my baby, I mean, my puppy that my parents got me after my husband walked out on us.  I laughed at them and asked "Consolation prize?" lol.  Anyway, I brought her back in and flopped myself down into my computer chair.  I was so tired that my vision was blurry and my head was killing me.  Daughter exclaims that she has to leave for the bus stop (2 houses down from us).  

Five minutes after she left, I hear her coming back onto the front porch.  She came inside and said that our neighbor lady is sitting on the porch and told her that she'd missed the bus.  I wanted to choke call the bus garage to ask them why in the world the bus came 20 minutes earlier then they'd told us it would be here.  I just honestly didn't have the strength to deal with calling anyone and complaining though.

My daughter got a ride to school, and by this time I know there's no way in heck that I'm going to get back to sleep.  My insomnia is honestly horrible!  No matter how tired I am, I just toss and turn and my body starts hurting until I just give up and crawl out of bed.  There wasn't any use in trying, so instead I drag myself walk to the kitchen needing to make coffee.  Now, my Keurig Platinum Edition had broke on me like 3 weeks after my husband walked out of our lives.  Oh how I coveted liked that Keurig.  After "hubby" leaving me out of the blue and not paying me any support, a new coffee maker just wasn't in the budget.  A lovely, caring friend bought me a Mr. Coffee machine.  I threw a coffee filter in, filled it with coffee, quickly measured the water and poured it in, and hit that power button.  I grabbed a coffee cup, threw in some sugar, a little milk, then I stood there looking at the machine begging and pleading for it to hurry up and make enough coffee to use the "sneak a cup" feature and get my first cup of java.  Thankfully after what seemed like a thousand years I was able to pour a cup.  

I made my way back into the dining room and flopped down in my computer chair again.  -More like slowly sat down saying some curse words "ow oww oww's" under my breath.  I stepped in a broken outlet box of some kind in the lobby floor at Fort Rapids on Sunday.  It twisted my knee and it's just completely done right now.  Standing up, sitting down, walking down steps (one stair at a time like a 2 year old would) is causing me immense pain.  I get sat down, savor the aroma of the coffee as I'm bringing the cup to my ever waiting lips, and sigh as I'm taking a sip of the wonderful smelling, very needed, anxiously awaited coffee.  I swallow then think "what the?!"!  I take my finger and wipe my tongue.  Guess what I wiped off of it?  Yep, coffee grounds.  Really??  That's the thing I dislike the most about standard coffee makers.  If you don't get the filter in there just perfectly, you end up drinking coffee grounds.  Such a mean, cruel joke to my blurry eyed, head throbbing, self.  

After fixing the coffee situation, I sit down again in my computer chair.  This time I'm praying determined that I won't let all of this ruin my day.  I even posted about my morning on my personal facebook status and remained doubtful hopeful that the day would have to get better, it certainly couldn't get worse.  Besides, if I posted it on facebook then it had to be true that it'd get better, because it was "facebook official".  Did you know that if something is posted on facebook, then it has to be right?  My daughter and her friends had taught me that.  I thought I was being a totally hip and cool mom good mom by remembering this and posting it to help my day.

Well, let me tell ya ....apparently that bs saying about something having to be true because it's "facebook official" was nothing but a big lie.  Imagine me forcing a smile smiling, determined that my entire day wasn't going to be ruined by lack of sleep and problems from the morning, walking into my bedroom.  I stop, flip on my light and Holy Mother I gasped right out loud.  My bed, my floor, my ROOM was covered in this whitish/green fluffy material.  I unbelievably frantically start scanning my room.  As my eyes (that made my head hurt worse to move them) reached the top left corner of my bed, I almost started screaming crying.  The corner of my sheet had come off my bed. My four month old memory foam bed.  That I wanted for the last year.  That is the ONLY thing that keeps me from waking up with unrelentless pain.  That I'm still paying on when I don't even have ANY income.  Has a big sized HOLE in it!  I'm standing there horrified and look down to see that stupid "poor, sick puppy" that started this whole mess of a day, proudly looking up at me and wagging her tail.   I tried to regain my composure, as rage filled me.  I seriously didn't know whether to cry, choke scold the dog, or just throw myself down while kicking my feet, pounding my fists, and screaming at the top of my lungs!

After calming myself down a bit, I reasoned that it was partly my fault too, because my bed has a mattress cover that zips around the entire thing and I didn't have it on there.  I had washed it a few days ago and it seriously takes three of us to take it off or put it on.  Therefore, I had it laying on top of my dresser.  I decided on the spot that neither of my dogs are EVER allowed in my room again!  I don't have a real door on my bedroom though.  I have one of those cheap accordian doors on it that you can buy at Home Depot or Lowe's.  The dogs just bash it with their heads, and into the room they go.  I had a cut piece of plywood that comes up to about my knee level (too high for them to jump over it) so I've now blocked off my doorway with that, until I can find the money to buy real door to keep shut!

As I sat here watching the clock waiting on my daughter to get home from school, I decided that there was no way in the world that I was even going to attempt to make a dinner tonight.  She walked in from school and I looked at her with a wild look about me smile and calmly stated that we were going to Burger King for supper tonight and not to argue about it or say a word.  Just to smile, nod, eat, enjoy, laugh, and have a good time with it.  

So, I've decided that tomorrow will be a better day and this time I'm not making it "facebook official".  I'm making it "The Fibro Frog official" instead!  =)  Right now, it's 12:07am and here I still sit.  Still feeling like a slug.  Still in pain.  Still tired.  Still dealing with insomnia.  Tomorrow today though, I'm NOT getting out of bed at 7:10am for ANYTHING!  I shall sleep what I can, and the world will wait for me.  If not?  That's ok too!

Oh!  -That photo above?  Yeah, that is not my mattress, nor my house, nor my photo.  You want to know why?  Because I didn't have enough wits about me when it happened to take a photo of my own mattress.  Had I done that though, I have to say that my photo would be the ONLY photo of a monster  dog chewed memory foam mattress on ALL of Google Images (where I obtained the photo above).  You know what that would mean?  I could've been famous!  I could've had one of those silly photo's with a caption on it that says something dumb silly to make every person and their brother on facebook laugh, "share" and "like" it.  -And that my friends, would have really made it "facebook official".  Yep, honestly, not one other person has ever uploaded a picture of a hole chewed into a memory foam mattress, by a small, 5 pound 1/2 Jack Russell Terrier and 1/2 Pomeranian mixed puppy.  It would've OFFICIALLY been a first.  I missed my calling for fame in my despair.  ;)

Spiraling In A Dark Abyss

Every time I get my feet beneath me again, and start to feel like everything will be alright from my husband walking out on my daughter and I, something else happens.  The long, dark spiral starts again.  I feel like I'm spiraling out of control in a dark abyss.  Then starts the routine of once again, trying to find my footing.

Yesterday, my daughter sent a text to her grandmother.  She was trying to get a message to her dad that she wanted to talk to him.  She's been trying to contact him for 3.5 weeks now, with him never returning a phone call.  Her grandmother sent her a text back saying that her dad had quit his job and moved.  She asked her grandmother where he moved to, and if he has a new job.  Her grandmother sent a text back that said "Don't know".  That, made my daughter cry for hours on end asking me questions such as "If my dad loves me then why doesn't he at least send me a text asking how I'm doing?  If my dad cares about me, then why wouldn't he have seen me and told me in person he was moving away and quitting his job?".

I had noticed that when he took his entire paycheck out of an ATM within minutes of it hitting Thursday night, that he'd done so at an ATM in Zanesville, OH.  I wondered then why he'd be that far away (3hrs from where we live) at almost midnight on a work night.  It all makes sense now.  The weekend that he "disappeared", then came home on that Sunday night (Easter Sunday), all he would tell me is that he'd been about 3hrs from home, and that he'd been east of Columbus, OH.  When I asked "where east of Columbus" he'd told me it was none of my business.  I guess he obviously had met someone from that area somehow while he was still with me.  =(

My daughter was freaking out that her dad quit his job.  She kept saying "How will we live if he doesn't have a job for us to get child support and alimony from him?".  I told her I didn't have all of the answers right this minute, but not to worry that we'd be fine.  That we always turn out fine.  Nothing would appease her.  On the inside, I too was freaking out wondering the same thing.  I also was scared and worried about us losing our health insurance.  I have all of my tests and appointments rescheduled for The Cleveland Clinic on June 14th.  My dad told me that he was pretty sure that they'd started taking health insurance out of my husband's checks a month before it went into effect, so we should still have it for all of this month yet.  It appears he must be right, because it was still showing in effect today went I checked it again.

My father called and asked to speak to my daughter.  My mom had told him what I'd told her, about how scared, worried and upset Courtney was.  He told her that she isn't in this alone, that she'd always have me, him, and my mother and that all three of us will always do everything we can for her.  He told her that him and my mom would never let her go without something she really needed.  I'm so grateful to have the parents I do.  I'm an only child, and I love my parents so very much.

I can't begin to stress to all of you, how much I hate being chronically ill.  All of this, would be so much easier for me to handle, and so much less stressful, if I could just go out and apply for any job opening there is.  The cold, hard realities though, is that I can't.  No matter how much I truly want to work and bring in a paycheck, I can't.  I ended up crying yesterday too, telling my daughter that she's equally mine and her dads responsibility and I feel that I'm letting her down just as much as he is.  I told her how sorry I am that I can't work to bring in a paycheck so that she wouldn't have to worry so much.  My health, is making me a crappy parent.  I love all four of my kids so very much, that it just kills me mentally to not be able to work to provide my underage daughter with the things she needs and deserves.

All I could think about doing most of the day and evening yesterday was to go into my room, crawl into bed,  and cry myself to sleep then just stay there for a week.  I didn't do that though.  That would solve nothing.  That would just worry and frighten my daughter more then she already was.  This wasn't a solution.

I still don't have a solution to my problems.  I still don't know what to do.  I've always been a chronic worrier all of my life, and I will freely admit that I am so tired, so very mentally exhausted, of worrying about everything all alone.  I wish more then anything right now, that I had someone to hug me and hold me, and tell me everything will work out in the end.  I've been shouldering so much on my own in the last two months, that when I think of it, it astounds me.

The stress and worry that I have, throws me into flares.  Both pain and insomnia flares.  Alas, I crawled my way out of bed today.  I sat down at my computer, and I sent off yet another email asking for help in holding a chronic pain and invisible illness seminar.  It's become more then obvious to me, that the only way I'm going to be able to get a start in that business, is to somehow raise the funds to hold two or three of them on my own.  Come up with the money to rent a space, a conference room to hold them in, to purchase tickets with, and to pay for advertising for them, on my own.  Holding a few on my own will help to get my name out there.  I'll have something to put sample clips of, on YouTube.  People and organizations will be more willing to take a risk on me.  I knew this a few days ago, which is why I finally bit the bullet and opened a Go Fund Me account.  Now, even more than then, it's so important for me to be able to do this and as quickly as possible.  I'd never ask an individual to contribute to my Go Fund Me Account.  I know that this economy is horrible and times are tough for everyone right now.  I have to ask you all though, that if you have an affiliation with any corporation, organization, or business that may be willing to make a donation, that you please pass along my information.

If I can even hit even the $1000 mark in my account, then I'll start checking out prices of conference rooms and advertising.  If it's enough to hold the first one, I'll be on it right away.  I just truly don't know what to do to provide a living for my daughter and myself, besides this.  Today, Courtney and her boyfriend did a ton of work to the house for me.  I felt so guilty that I couldn't help them with what they were doing.  I went to the laundry room and started a load of laundry.  I was out of breath and in pain, so I had to come sit down.  After sitting for a bit I hoisted myself up again, and unloaded the dish washer.  Then again, I sat.  Then, I went out and loaded the dish washer.  I was in tears from the bending.  I also cleaned off my china cabinet today and dusted it.  Again, I had to break it up into small increments.  I did these things after pre-medicating myself with a pain pill.  I still was in tears from the pain.  Right now, my arms are killing me.  It's killing them just sitting here typing.  My shoulders are killing me, I can't even raise my arms above my head.  My neck hurts so badly, that I can barely turn my head from one side to the other or up and down.  My back is killing me.  My knees, and upper legs are aching and burning.  -And what did I do to cause all of this debilitating pain?  I threw some dirty towels in a washer, I unloaded and reloaded a dish washer, and I cleaned off a china cabinet (that seems to be a catch-all for everyone to throw everything on) and dusted it.  Not very much in the grand scheme of things, was it?  How in the world, can I get a "real" job and support us?  I just don't see how it's possible.  I had used up so many spoons today doing these few small tasks, that I couldn't even make supper tonight.  My daughter made ramen noodles.  She made some for me too, and I didn't even have the energy to eat them.  I took a few bites, then gave mine to her.  I was too tired to eat, and in so much pain that I didn't have an appetite.

I'm the type of person that doesn't like to ask for help from anyone.  My flight or fight instinct has kicked in though, and I don't really have a choice.  I have to ask you all, to please share my blog and my desire to make a career out of public speaking.  I ask you all to please think long and hard of any corporation or organization that might be willing to help me.  The more people that see and/or hear about my blog and my dream career of leading seminars, the better chance I have to make this dream come true and to start earning a living for my daughter and I.  I'm so very grateful for each and every one of you that's a part of my life here on my blog, and on my blog's facebook page.  It's comforting to me, to know that I'm not alone in my pain, and my daily struggles.  Thank you all for being here.

Memorial Day 2012

Today was a tough day for me to get through.  See, my STBX husbands birthday is May 27th.  We always have our pool up, and grill out.  Sometimes we'd go camping for the weekend, or rent a cabin in southern Ohio.  I can't tell you how many times I thought of him yesterday.  Our daughter tried to get a hold of him so she could tell him happy birthday, but he didn't return her call.  That hurt her, which hurt me in return, as her mother.  

Despite him not being here this year, I was bound and determined to try and make this a great day for my daughter anyway.  Well, you all know what they say about the best laid plans, right?!  My son put the pool up for us about a week ago.  I figured that would give us plenty of time to have it ready to swim in by today. Well, we had one problem after another with the pool, filling it, etc.  I had one pouch of chemicals left from last year and figured that would be enough to get it going for us.  Wrong.  Today, the pool looked like a greenish-black sesspool.  Of course since I haven't worked in years I don't have a job to make money to buy  more chemicals, and the STBX isn't paying me support that he promised he'd pay when he walked out.  

Next, my daughter wanted chicken on the grill with BBQ sauce.  Go ahead and laugh, but I've never cooked on a gas grill before.  My STBX always did it.  Courtney (my daughter) wanted it so bad, and has been so hurt and disappointed over various things since her dad walked out, that I felt I had to try.  It took us until around 8:30pm to get the grill out and start making supper.  The electric start on the grill is broken, which I knew, so we have to light it with a match or lighter.  We'd had those long lighters that's used for that, and that's what STBX always used.  Of course we couldn't find it though.  We rolled up a piece of computer paper and used that to light it with.  Low and behold, after we were done, we found the long lighter.  She's trying to be nice and saying that the chicken was really good, but in all honesty it was pretty much a charred disaster.  

My youngest son is the only one of my children that's married.  Him and his wife are in the process of moving out of my house.  They stopped over to pick up a load of their things.  He casually mentioned to me that he'd seen his aunt yesterday, the one who STBX moved in with when he left me.  He said that he'd asked his aunt what his dad had been up to (he'd stopped to try and see him on his birthday) and she told him "Nothing much.  He's just been hanging out with his new girlfriend".  Of course hearing that today, even though I already "knew" he was seeing someone, really hurt.  By the time my son had left, I was sitting hunched over my desk due to my back pain.  I started having chest pain again (I think it's from anxiety), and felt completely wiped out.  I couldn't help it, but the tears started flowing again.  

My kids haven't heard from, nor seen their dad in almost 3 weeks now.  This is really hurting my daughter.  She had called and left messages for him to call her, for a week straight without receiving a phone call back from him.  Stuff like this really hurts my health and my depression.  When I see my daughter hurt, it hurts me.    All of this stress; him leaving, him not giving me monetary support (this past Thursday night when his check hit, within 5 minutes or less of it hitting he'd taken it all out exept for $15.40 that he left for us), not being able to get a start in public speaking for motivation and advocacy like I'd desperately praying for, feeling ill, all of it, makes me have pain and insomnia flares.

I'm not sure where I'm supposed to go with my life, but I'm still clinging to the idea that there's a reason for everything that's happening to me.  I still firmly believe that the reason I became so sick, with so many health problems, is because I'm supposed to educate people with seminars.  I do realize now, that in the grand scheme of things, my daughter and myself are better off without my husband here.  He didn't treat us right, even when he was here.  We both deserve better then that.  Still, I loved him very much, so it hurts.  It's so hard to get used to not having someone to do things with.  Someone to talk to. Someone to give me a hug, and care how I feel that day.  It's boring and lonely.  I know, that eventually I'll adapt though.  Eventually, I'll get a break in paid public speaking and I'll be able to support my daughter and myself.  I'll eventually have that to busy my time, and to get me out around other adults.  I'll be able to focus on making a brand new life for Courtney and I.  One that's better then what we had.

Some days, it feels like the depression is just too much for me.  The stress, feels like it's pulling me under a current and that no matter how hard I try to keep swimming, I'm going to sink anyway.  My fibromyalgia and arthritis was bad before he ever left.  Now, the symptoms are a lot worse.  I didn't think that was possible, but unfortunately I've been shown that it's very possible.  Some days, the pain is crippling.  Some evenings it takes everything I have, to walk across the house.  I moan and groan like I'm 80yrs old from the pain in my knees, every time I stand up.  

No matter how much pain I'm in, or how dark and dismal my future may look to me right now, I know that there is light at the end of the tunnel.  I'm a fighter.  I always have been.  Therefore, I pick myself up and carry on.  I refuse to allow a man I've loved to ruin me.  I refuse to lay down and cave into the pain of my illnesses.  One of these days, someone in the right field will hear my cry.  They'll read my words.  They'll talk to me, and see what my seminar is about, and what I have to offer their audience.  I believe in not only myself enough, but in everyone with a chronic pain illness and/or an invisible illness enough, that I won't shut up.  I'll keep thinking, and reading, and researching, and blogging, and sending emails until someone reaches out a hand for me to grab.  A lifeline that they throw to me, to pull me out of the water.  Then, in my seminars, people will not only hear my voice, but the voices of all of us who suffer from these debilitating conditions.  When will that day come?  I don't know.  I do know though, that it will come.

I Hate My Body

*Warning - This post is more of a major vent.  It's not filled with funny, cute pics. It's the reality of living with fibromyalgia and other chronic conditions. It's my reality.

As a teenager, I knew something was wrong with me.  I complained all the time to my parents that I was tired.  I complained I didn't have energy.  I complained that my knees and my body hurt.  Their solution?  They'd tell me I was too young not to have any energy.  I was too young to be tired all the time.  They told me if my muscles and joints hurt, to quit the cheerleading squad.  It'd always make me mad and it would hurt my feelings, because I truly did feel the way I told them.

As a young adult, I still felt the same way, but it was tolerable.  I worked.  I took care of my 4 kids.  I went to college.  I did the things I needed to do, no matter how I felt.  I thought about going to a doctor because of how I felt, but then I'd talk myself out of it, remembering the words my mother would say to me when I complained to her.  I felt going to a doctor wouldn't solve anything, that they too would just think I was faking.

Quite a few years ago, I felt too lousy to keep working.  My husband told me it was ok, that we could make it off his salary and I could stay home with the kids.  This is what I did.  I still took care of them, along with taking care of the house.  I still felt bad. I still never had any energy.  My body still hurt.

A year ago, a year ago this month as a matter of fact, all of my symptoms started getting worse.  My oldest son had left for basic training in March.  He's in the Army Reserves, and is a combat engineer.  He was stationed at Fort Leonard Wood, MO for his basic training.  In May of last year, I was thrown for a real loop.  Something had come to my attention, that's very personal, and was very upsetting to my husband and myself both.  I DO blame this circumstance for bringing on my symptoms full force.  At that time though, I wasn't aware what was wrong with me. I just thought it was stress.  I wasn't able to clean up my house as well. I wasn't able to keep things as neat and tidy as they had been.

My oldest daughter graduated with her undergrad degree June 5th of last year, from DU.  She was the 1st person from either side of the family to actually graduate from a 4 year program.  We were all so happy and proud of her.  My husband, his mom (this was my daughters step-dad and step-grandma), our youngest daughter and myself all planned a trip to Denver, for her graduation ceremony.  We rented a car and drove from NW Ohio to Denver, CO.  I can't tell you how hard this trip was for me.  By the time we got to Denver, I was physically sick.  I could barely move.  I was in so much pain.  On the way home from Denver, I hurt so bad that it was all I could do to keep from crying.  Exhaustion wasn't even close to describing how worn out I was.  Again, I thought it was just from the stress of the trip.  I still didn't see a doctor.

Finally, late that summer I started going to a new family physician that moved to our area.  While at an appointment for something else (my copd..as the last fam. physician had said it was, but I've had asthma since I was 5 so whichever one) I mentioned to her how bad my body hurt and that I didn't have any energy.    She asked me how long this had been going on. I laughed and told her years, but that it just had gotten a lot worse, since our trip in June. She gave me a shot that she said would help inflammation and ordered some blood work.

About a week later I received a phone call asking me if I had a rheumatologist of choice that I'd like them to refer me to.  I told the nurse no, and asked why I was being refered to one.  She went over my blood test results and told me that my WBC and absolute lymps was high, my SED Rate was high, my CRP was high, and that I had a positive ANA in a speckled pattern.  She said the doctor was concerned that I had Lupus.

It took until October for me to get into a rheumatologist.  That was a long 2 months of sitting and worrying, and trying to become Dr. Google on the internet.  The rheumy I went to had the personality of a wet fish.  He made me feel uncomfortable and he made me feel stupid.  He diagnosed me with Fibromyalgia.  He re-ran all my blood work.  WBC, absolute lymps, SED and CRP was still high, but this time my ANA was negative.  Both times I'd had blood drawn I had a negative RF.  I told him about the knee and hip pain, and he took an xray of my hip and said I have bone spurs on it.  He didn't do anything about my knees, except to tell me to buy a new pair of tennis shoes, that he didn't like the looks of mine and they looked pretty old.

In December I went back to the jerk.  He made me feel stupid that time too.  I showed him a sore I had on my stomach and told him I get them all the time.  They fill so big with puss, that they actually bust open all on their own, and puss and blood oozes out.  They're disgusting.  He barely looked at it and then asked me if I wash my body with anti-bacterial soap.  When I told him no, he said "well try that".  He was just a hurried, cold, jerk about everything and made me a nervous wreck even thinking about going to an appointment with him.  He obviously wasn't the right doctor for me.

I did some research, and decided to call The Cleveland Clinic and ask for a 2nd opinion on the fibromyalgia diagnosis.  I didn't like nor trust the 1st doctor, or his opinions.  I was able to get an appointment with them, for February 1st.  I took it.  This doctor, still doesn't have a wonderful personality but at least she didn't make me feel stupid.  She took her time with me, and she gave me a super complete exam like I had not received from the 1st rheumy.  She agreed with the fibro diagnosis. She also re-ran blood work and this time my WBC, and absolute lymps was high, and so was my CRP but my SED rate was normal.  She ran about every blood test under the sun, but looking over my online test results she did not run an ANA again for some reason.  She also diagnosed my with arthritis in both knees, AC Joint Arthritis in both shoulders, and arthritis in my neck and my back. I already knew about the arthritis in my neck and back, due to a CT scan I'd had about a year prior.  That CT is also how I found out about the bone spurs on my spine, and the Tarlov Cysts running all up and down my spine.  She knew I was there for a 2nd opinion but she just assumed she was taking over my rheumatology care. That was fine with me, as I was going to ask her to take me on anyway.  She said I'd be seen in her Fibromyalgia Clinic.  Why they call it that I don't know, because I just check in at the rheumatology desk and go in a room in that department for it anyway lol.

So, this post is already long and I've went through this history with you all, just to build up to huge moan and complaint.  My body is now so wrecked.  In so much pain.  So tired. That I can't work.  I can't even do household chores without crying.  Even with an Ultram pain pill in my I still cry most of the time, and don't even get to finish the cleaning or cooking task I'd started.  My memory is horrible.  I have bad insomnia. I honestly don't have a day where I'm not in pain.  I'm not talking about a little bit of pain either.  I'm talking about excruiating, debilitating, make you cry, pain.

The day before my husband walked out on me, he'd come home and told me that he has far too much stress on him and we had to find a way to decrease his stress.  I asked him what he was so stressed out about.  The very first thing that popped out of his mouth was "your illness".  Then he went on to add "bills" and finally finished up with "and Matt".  That is our youngest son, who in all honesty had been bringing stress to the table.  Wow, I felt like total crap that the very first thing he said was "your illness".  I apologized to him. I told him we'd find a way to help with his stress level.  I truly believed everything was going to be ok.  I had no idea at all that he was going to go check out hunting land the next morning to not return, or call, or anything for 2 more days after that.  Then, it was him sending a text to our 16yr old daughter around 11am on Easter morning saying "I'm leaving your mom, but I'm not leaving you".  Who does that?  Who in their right mind sends a text to a 16yr old child telling them they're leaving her mom, before even discussing it with the spouse??!  He showed up around 11pm that night to pick up his clothes and walk out the door.

When he left he told me "I know you're too sick to work.  Don't worry, I'll still pay all the bills and make sure you get your medicine and to your doctor appointments.".  The next afternoon he came over and we made up an agreement, which we then took and had our signatures notorized on the agreement.  It was enough money a week to pay the bills, + a tiny bit for incidentals and $75 a week for food.  Unfortunately, he hasn't made good on that agreement once yet.  2 weeks ago I was upset, because as soon as his check hit the bank, he withdrew $700 and left me with $61.  Now, this man lives with his sister rent free.  He doesn't have any bills at all.  He doesn't even have a car payment.  I have custody of our daughter and I have the house, along with all the expenses of having a daughter and a house.  Yet he left me with $61 while keeping $700 for himself.  So last week, I figured out if I wanted to pay my bills that were due I'd better beat him to an ATM that night.  I did, and even though he'd shorted me almost $1000 from what he agreed to pay, since he'd left me April 8th, I only took $37 more then the agreement had been for.  My lawyer and my dad had both told me to take EVERYTHING if I got to it first.  I couldn't, in good conscience though, do that to him.  Even though he'd only left me $61 the week before, I just couldn't do it. I'm not that type of person.  That still left him $273 last week.  This week, tonight, he called and reported my ATM debit card lost or stolen, and had it deactivated on me.  He pulled his entire check out.  He left me exactly $15.40 to live on.  I've sat here with tears running down my face since 11:30pm.

So what's my point in this huge, long, complaining post?  I hate my body.  Plain and simple, I hate my body. I hate it, because I can't work.  Not only is it bad that I can't bring in a paycheck to support myself and my daughter, and can't make money to pay the bills with, but I can't even have the dignity of earning a paycheck.  I'm denied that pride of working and earning my own money.  I can't feel the empowerment of knowing that I earned this money.  My husband's stress level?  The 1st thing out of his mouth was "your illness".  The 2nd words out of his mouth was "bills".  So, if I didn't have a crappy sick body, he wouldn't have been stressed over me having an illness.  He also wouldn't have been stressed about bills, because I could've gotten a job and helped out paying those bills.  I've thought long and hard tonight, about whether I hate my body, or I hate Fibromyalgia, Arthritis, Tarlov Cysts, Bone Spurs, IBS, Asthma/COPD.  I came to the conclusion that while I do hate these diseases, I have to hate my body the most because if my body would've just cooperated, then none of these crappy diseases would've invaded it.

I've racked my brain so hard the last few weeks, trying to figure out a job that I may be able to do to earn money.  I just can't figure anything out because 1. I'm in bad pain all the time.  I can't stand for more then 5-10 minutes at a time without it bringing me to tears.  I can't sit for longer then 10-15 minutes at a time, or I'm in pain + so stiff when I go to stand that I can't hardly walk.  2.  I can't rely on my memory. Fibro Fog is bad.  I sat for almost 5 minutes today with my hands on the keyboard, trying to think of what the heck my FB password was.  I've had this same dang password for years now!  3. My insomnia is terrible. Sometimes I can't go to sleep at all and I'm awake for almost 48 hours straight.  Sometime I can get 4-5 hrs of sleep. It isn't even safe for me to drive a car when I haven't slept for 48 hours at a time, let alone the additional brain fog it produces.  The only thing I can think of is public speaking.  A seminar wouldn't last over 2 hours and I could sit/stand as needed while doing it.  It isn't an every day job.  It'd be a couple times a month, for a couple hours at a time.  My oldest daughter, who graduated from DU last June, is now 1/2 way through the graduate program at DU.  She suggested to me a couple nights ago that I write articles on what it's like to live with fibromyalgia and submit them to magazines.  She also suggested I write a book, on the same topic.  I actually got excited about the magazine article submission idea, but all it took was 10 minutes of researching to see that wasn't going to happen.  Most of them, says in the submission guidelines, that you have to already have been published in a national magazine to even have your article read and considered.  The one's I found that you didn't have to already be published, only accepted submissions on certain topics. -One's that living with fibro and/or chronic pain conditions didn't fit into.  A book?  I hardly believe that would ever pan out either. Yes, I know you can self-publish on Amazon.  I have a friend who's husband has self-published 3 or 4 Kindle books on Amazon now.  I've just been out of school too long to really have the grammar I'd need for a book.  Also, there's already about a million books out there on these topics so would anyone really buy it?  I don't know.  It all just comes down to I hate my body. I feel that because of it, I've not only lost my husband, but I've lost my dignity and pride.  I've lost the ability to provide for myself and my family. Between the fibromyalgia induced depression, and my husband not even caring if I can pay the bills and support our daughter, my depression is pretty bad tonight.  Again, I hate my body.

All The Small Things

Ok, I realize that the song doesn't have the meaning I'm talking about in this post, but I love it anyway and the title fits LOL.  Living with chronic pain I'm reminded almost daily of all the small things that I can't do now.  Or that I can't do without causing my body pain and sometimes setting myself back a couple days in a row afterwards.  The heat and humidity?  It leaves me completely wiped out, plus affects my asthma/COPD.  I walk around sounding a bit like Darth Vader.  Walking around the block?  Somedays I just can't.  I couldn't make it across the street.  When I do, I'm left completely exhausted for the rest of the day at least.  Sometimes the following day or two too.  Setting up a yard sale?  Yeah, I couldn't.  I helped with a few things, but overall my kids set it up.  The little bit I did do, still  has me completely wiped out.

Doing something as simple as laundry I sometimes can't do.  I have to have my daughter switch the clothes from the washer to the dryer, then take them out of the dryer for me.  My back pain won't allow me to bend and stoop to do it.  Sometimes it even hurts my arms, from reaching and outstretching them.  Sometimes bending to this, or other times leaves me dizzy. 

A few minutes ago I walked out the back door to turn the hose on.  We're in the process of filling our above ground pool.  I turned the hose on, then came back in here to sit down.  I'm completely exhausted now.  My head is even hurting since doing it.  How ridiculous is that?

My old rheumatologist and the new one both asked me if I have chest pain.  I told them both no.  Starting this past Wednesday though, I've had bad chest pain several times a day.  I guess I get to add that to my symptoms when I have my next appointment. 

About a week after my last appointment in February, I started experiencing Fibromyalgia Numbness in my left hand and fingers.  It was so bad for awhile, that I couldn't hardly type.  It was the weirdest sensation to have, and to have it just stay like that.  Eventually, it started getting better and was almost completely gone.  Now, it's starting to come back again. 

Some days, It hurts my arms, hands and fingers to even type.  I couldn't do a blog post, without causing myself severe pain.  Almost daily my arms ache and hurt too much, that even reaching out to take a plate out of the cabinet hurts them.  To make supper, I have to take a pain pill about 30 minutes prior, then I'm still usually still in such pain that I'm blinking back tears before I'm done.  That's the only meal I cook.  Everyone has to fend for themselves for breakfast and lunch.  Running a sweeper?  Forget it. I'd be down the rest of that day, and usually the next too.  Even standing up and sitting down causes me a lot of pain.  My poor knees snap and crack and I have shooting pain. Shaving my legs?  I usually can't without help.  Now the I'm getting a divorce I don't have a choice.  It took me over 30 minutes and completely wiped me out.  It also gave me charley horse type cramps in my stomache, sides and back.

There's more.  Many  more simple things  I can't do now, or do with difficulty and hurting myself.  A few weeks ago, when I went grocery shopping I was in such pain and physically exhausted afterwards, that on the way home I started crying.  I couldn't help it.  The tears were just silently running down my face.  That particular incident really hit me hard.  It showed me how difficult living my life without my husband was going to be.  We always went grocery shopping together and if I needed something that was down low or up high he got it for me and put it in the cart.  He'd put everything on the register belt to be scanned, then put all the bags back into the cart.  He'd load it from the cart into the car, then bring it inside the house for my daughter to put away. 

If I can't even do the small things in life, how am I supposed to live?  How am I supposed to do this thing called "Life" being single?  What will I do when all of my kids are grown and out of the house?  My youngest is 16 years old.  She'll be a senior next year, then off to college.  It may sound dumb, but I actually feel panicked when I sit and think about it.  -Yep, that dang anxiety that accompanies fibromyalgia.  Sitting here writting this out, has tears stinging my eyes that I keep blinking back. 

People who don't live with a chronic pain and fatigue condition will never understand these things.  Reading it, may not even sound realistic to them.  I could see someone reading this post and saying to themselves, "That's absurd. This lady is just lazy.".  I assure anyone who may be reading this, it's all very real.  Do I like it?  Heck no.  I hate it!  I hate fibromyalgia.  I hate COPD.  I hate arthritis. I hate IBS.  I hate all of these, among other illnesses and diseases.  I'm not sure how to live my life.  I'd like to think that I could figure out ways to still live a fullfilling life, but I'm not sure it's possible.  I'm not sure it'll ever be possible in my lifetime.  My hope, my prayer though, is that with enough awareness, education, and advocacy that maybe more money will be dedicated to research so that by the time my daughter is my age, she may not have to live her life in the mannor I'm living mine.  She has PCOS, and after I was diagnosed with fibromyalgia I'm pretty sure she has it too.  She'd been through all kinds of tests, including expensive tests that had to be sent away to see if she had any type of muscles disease to cause her pain in her muscles.  My rheumy won't see children though.  I need to find one that does and have her tested.  Please, advocate for a cure.  Spread awareness.  Educate those who have misconceptions about our illnesses.  Try to get them to understand.

...And Now I Know

So now I understand why STBX is being so mean this week...mean enough to not even pick up my meds for me.  He IS cheating on me.  Despite me outright asking him several times, and him swearing "No Amy, I'm not seeing anyone.  I have NO desire to see anyone.  I don't want sex with anyone.  If I want that I'll just come to you because we ARE married and there's nothing wrong with that, is there?  We're separated, so I have NO reason to lie to you about any of this".  I thought of a LOT wrong with that, btw...but won't go into it here.   Anyway, he's with someone.  His old highschool girlfriend has a photo of him & her with their heads together, as her facebook profile pic.  Maybe the warning sign I have above, should also come with a warning to be careful, or else facebook may lead to you being busted in an adultrious affair.  :/

I have sat here and cried.  I've sobbed.  I've wondered why "me" about a lot of things.  Why am I so sick?  Why can't I have a pretty face and a nice body?  Why am I not good enough for him?  Why am I not worthy of the truth?  Why is it that he's the one who doesn't put me or his kids first, is a liar and a jerk, yet he can run out and find someone new right away, while I'm the one sitting here alone and probably will be for the rest of my life?  Why am I the one to always feel both physical and emotional pain?  Why don't I deserve to be happy?  Why don't I deserve to have someone love me, just as strongly as the love I have to give? 

That was a lot of "why's" and a lot of "I's", wasn't it?  I guess that makes me look an sound kind of selfish right now, but I can't help it.  I'm beyond devestated.  I guess I was living in a dream state, hoping he'd come to his senses soon and tell me what a jerk he's been and that he does love me afterall.  Now I know better.  I'm mourning the loss of a life I thought I'd have, and the things I thought I'd do in my future. I'm doing it all while sitting hunched over my desk, in so much physical pain that it's impossible for me to sit straight today.  My head is killing me.  My arms and hands hurt to type.  My legs are aching.  Times like this makes me examine the "What have I done in my life to deserve this kind of emotional and physical pain?".  What have I done so bad?  I love people in my life with every ounce of me.  I'm an extremely compassionate person.  I always do anything I can to help someone if they need help with something.  Older people, children, and animals bring me great joy.  I honestly care and worry about friends and family.  If I was rich I'd donate tons of money to pediatric cancer research, as well as research for neuro-immune disorders/chronic pain/invisible illness.  I've never felt the need to be "rich".  I'm so happy with the most simple things in life.  If I could have enough money to buy plenty of food, pay my bills on time without having  to worry & stress about it, buy myself and my daughter new clothes when needed, be able to take 1 week long vacation each year, and have a little nest egg of a few thousand in the bank for emergencies like car or appliance repairs/replacements, I'd be the happiest person in the world.  Even before STBX left me April 8, when he'd tell me to buy something for myself I very rarely did.  Because MY joy was instead buying for him...or my kids...or my stepgranddaughter..or my parents.  MY joy came from being able to do little things for those I love, and seeing the joy on their faces when I did so.  I don't know, I just don't see where I'm "that" bad of a person, to deserve this crap sandwich that life has given me.  That's just how I feel too.  I feel like I walked into a restaurant expecting a full buffet, for the waiter to come hand me a crap sandwich instead.

I  need to pull myself out of this.  I've been hurt many times over the years, and I've always came out stronger for it.  I really don't see that happening this time.   This time, I don't have a clue how to become stronger for this.  I need to put on my big girl panties, stop crying, stop feeling sorry for myself, STOP LOVING HIM, figure out a way to provide for my daughter and myself.  I really truly felt that the reason I got sick was because God wanted me to spread the word.  To speak publicly for awareness and advocacy on chronic pain/invisible illness.  I truly felt that God would open the doors and make it possible for me to launch a career in that business.  I just can't tell you the overwhelming feeling I have about it, and when I'd pray about it.  I haven't hit any offers to do this yet, but I'll be totally honest in that I haven't totally read and researched how to break into it yet either.  -So maybe that's what I need to do?  All I want is to spread TRUE and CORRECT information about this to the public, to doctors (med students), to researchers, etc, and make enough money at it, to provide a comfortable income for my daughter and myself.  If anyone has any leads or suggestions at all, I'm all ears. 

Trying To Pick Up The Pieces

I jinxed myself last week or something, by writing the blog post on divorce statistics for those with a chronic illness.  Last Thursday when my husband came home from work, he told me that he had been having chest and shoulder pain due to stress.  He said we needed to find a way to get his stress level down.  I asked him what he was so stressed about and he said "I'm stressed out about your sickness, and I'm stressed out about bills".  I felt horrible, because even him being stressed about bills I feel like falls back on my health, since I can't work due to my health. If I could work too, then he wouldn't be so stressed about the bills.  I told him that I would look for a job, to help with the bills.  He said "No, you can't.  You can't even wash supper dishes without taking 3-4 breaks while doing them.  You can't work.".  I said "Well, why don't you take a day like every other weekend to just go off by yourself and do stuff you like to do.  Just take a day to get away from everything".  He said "Fine.  Since I don't have to work tomorrow for Good Friday, do you care if I go scout for turkey?".  He's been really excited about wild turkey season starting the end of this month.  He wanted to go to a state park that's about 45 minutes away from us.  He said he'd leave around 8am and be home by 1pm at the latest.  He said when he got home, we'd go do our Easter shopping.

1pm came and went, with no sign of him.  I tried to call his cell phone, but it went straight to voice mail.  Repeat that same scenario for the rest of the day and night.  All day Saturday.  By Saturday evening I was worried sick about him.  Where he'd been having chest pain on Thursday, all I could think about was that he'd had a heart attack walking through the woods and was laying out there dead.  Around 11pm Saturday I left a voice mail saying I didn't know what was going on and I was worried sick about him.  Sunday morning, he finally sent a text to our 16yr old daughter saying that he was ok and that he'd be home that night.  She asked him if he was "leaving us" or something.  He texted back saying "I'm leaving her but not you".  Nice.  So he told our 16yr old daughter through a text message that he was leaving me, on Easter Sunday, after not coming home to even take me shopping to have the stuff to make an Easter dinner or to make an Easter basket for our daughter or anything.  See, he had our car along with the keys to his truck.  He also had my debit card.  I also thought he had our check book because I couldn't find it.  It turns out though, that it was here the entire time in an inside pocket of his work coat.  There wasn't any way for me to go shopping without him. 

He finally showed up here around 10pm or so last night.  I was scared to death and a nervous wreck, waiting on him to get here.  Especially from the way he did things...staying gone Friday, Saturday and Sunday without any reasoning....telling our daughter through text that he was leaving me....not providing an Easter celebration for his family.....etc.  That was all SO wrong of him.  I figured he'd be a total jerk to me when he saw me because of those actions.  He really wasn't though.  He told me that he loves me from being with me for 19.5 years, and being the mother of his two children, but that he wasn't "in love" with me.  He said that he'll always care about me though, and that he'll always be my "friend".  He said that he'll still pay all the bills, make sure I get to my doctor appointments, and have my medicine.  He said that he just hasn't been happy for a really long time, and that he's getting older and just can't "pretend" anymore. He packed his truck full of his stuff, and left.  He's moving in with his mom.  -He says that's how he'll be able to afford to still pay all of the bills.  He told me I can have the house so that I make sure I always have a place to live.  -We'd bought our house at sheriff auction due to back taxes, therefore it was dirt cheap and we paid for it in cash.

Being sick has shown me that the cliche "Life's too short" really is the truth.  I love him so much, that I want him to be happy.  So if he isn't happy with me, then I have to let him go and not beg him to stay.  Since getting up Friday, I've only been able to force down a couple bites of food.  I've barely slept.  I burst out crying uncontrollably.  Everything in my body hurts.  Every muscle.  Every joint.  My head.  Most of all, my heart.  I'm worrying about the fact that I can't work.  Sure, he says he'll still pay everything.  He's even signing a notarized letter today when he gets off work saying that he'll pay me child support/alimony/maintenance every week that's enough to cover my bills, for a period of 10 years.  But what happens if he doesn't?  What happens  if he just stops?  What am I supposed to do?  Believe me, I wish I could work.  I'd love to get out of the house.  To be around people and meet new people.  To feel the pride of bringing in a pay check.  The sad reality is though, I just can't.  I don't have a degree in anything, only a high school diploma.  That means that any job I could possibly get would be work in a factory, in a fast food place, or in a store.  All of that is hard work being on your feet and lifting things.  When I stand long enough to fry an egg, I'm literally in tears before it's done, from the back pain.  How am I supposed to do this?  What am I supposed to do?  Even though I know this divorce is the best thing for all of us, I'm so scared.  I feel so alone.  I have a ton of questions in my mind such as "What's so horrible about me that he can't be "in love" with me?  Why do I have to have such $hitty health?" etc.  Somehow though, I must pick up the pieces and move on.  I'm just not sure how to do that when you've loved someone unconditionally and with your every being, for 19.5 years. 

Staggering Divorce Rate For Those With A Chronic Illness

I made the mistake today, of researching the divorce rate among couples who deal with a chronic illness or chronic pain.  What I found, was staggering.  There is a 75% divorce rate among those who are dealing with a chronic illness.  75%.  That number, is almost unreal to me.

I'm not gonna lie, that number scared me.  It also made me really sad.  When a couple marries, they think that their spouse is their best friend.  They think that they will always be able to count on their spouse, to turn to if something's wrong.  To see how high the divorce rate is in this group, almost cripples me.  My heart is breaking to think of the pain, betrayal,anguish and tears that the chronically ill person must feel when their spouse tells them that they want out, because they became sick.

Since I've become sick, my marriage has hit speed bumps.  Even though my husband thinks that he "gets it", he doesn't really "get it".  Little things that have been said in the heat of the moment shows me that he doesn't really "get it".  On the other hand, I can't really understand fully how it must be for him, either.  To go from having a life-long companion, to having to help take care of someone who's sick every single day.  I know this can't be easy for him either.

So, how do I make sure that my marriage falls into that 25% catagory?  What do I need to do, to make sure I'm doing my part in keeping this marriage alive?  I don't really have an answer to that, and that scares me.  I'm the type of person that always sits and analyzes everything.  I need a plan A, a plan B, and usually I don't feel content until I have a plan C also in place.  The thing is though, with a marriage, let alone a chronic illness, there isn't any way to make a plan A, let alone a plan B and a plan C. 

Marriage is hard to keep alive and well, even when a chronic illness isn't involved.  The added stress of a chronic illness just makes everything that much harder.  To keep a marriage alive, when chronic illness is present, takes a strong committment from both partners.  If one or the other in the marriage isn't 100% fully committed to making things work, then there will be problems. I know that I'll do everything I can, to try and ensure that my marriage doesn't fall into that 75% divorce rate.  I also pray that none of you, will fall into that catagory as well.  I found this divorce rate listed in several websites across the web.  I will leave you with the link to one of those websites though.   You can click HERE to read the page I found this statistic on.