Tuesday, March 19, 2013

Tired ....and Not Just Physically, Mentally Too

In fact, I'm more then tired.  I'm exhausted both physically and  mentally.  I'm going to put a disclaimer here, that this post is not a happy post that's filled with fake "rah-rah my illness doesn't define me" crap.  It's going to be the truth.  The truth of how I feel.  If this may offend you, then please don't read.  If you do read and it offends you, then I'm truly sorry but that's on you, because I've placed a disclaimer warning you not to read the post in the first place.

A lot of people across the net doesn't like me.  Or my blog.  Or my correlating facebook page.  They say that as an advocate I'm supposed to do nothing except to "support" people.  I'm supposed to never post anything negative.  I should always sound upbeat and peppy.  Well, that's not who I am.  That's not what Fibromyalgia, arthritis, and whatever my still un-named autoimmune disease is.  When I have a good day, I'm extremely grateful for that.  I post on my facebook page about it.  I always have words of encouragement for anyone who posts on my facebook page that they're down or having a hard week ...or day.  Some times my encouragement may only be "I'm so sorry that you're having such a hard time right now.  I truly know how you feel, you're absolutely not alone.  I'm here for you, and so are almost 6000 other people on this page.  I'm sending you a huge, yet gentle butterfly hug and I'll pray that tomorrow is a better day".  I will never lie to someone, and if I don't know any answer to a question I'm honest about that as well.  I'll say something along the lines of "You know, I'm not sure but that's a great question.  I'm going to go research that and see if I can find the answer.  In the meantime, I'm going to copy and paste your question to make sure all of our community sees it and maybe others will be able to chime in while I'm searching for the answer".  A lot of fibro facebook pages have 10,000 members.  Some have 12,000.  I've even seen some with over 20,000!!  That's great and wonderful.  I "only" have close to 6,000 but I'm beyond thrilled with that, because those almost 6,000 people allow me to be myself.  To not compromise my integrity by conforming to socialization standards of trying not to show weakness.  To lie or sugar coat something, instead of telling the truth about the situation.  

All that said, I started this blog to have a place to journal my feelings.  To vent.  To scream and cry.  It was for me.  It was mine.  When I started getting followers, I truly was in a state of awe.  I didn't really know what to do, or how to feel about that.  My now nonexistent because my sickness was just too much to handle husband didn't "get it".  He didn't understand.  I couldn't talk to him about it.  When I did, he'd keep staring straight at the tv and mutter a "yeah" every now and then.  Until I'd ask him a question about what I'd just said, then he'd look mortified and say "wait, what?".  Ugh.  To keep my sanity, The Fibro Frog was born.  

Shew.  I guess that was a rant all of it's own, wasn't it?  Anyway, I'm tired.  I'm sad.  I'm depressed.  I'm not going to lie about it.  Life is feeling as if it's too much lately.  I've had cellulitis in my right leg.  It wasn't pretty.  Now, the doctor says the infection is gone, but my leg, foot, and ankle is still so swollen that it isn't even funny.  To try and flex or point my toes even a cm, feels as if my skin is in some sort of skin stretcher, that's going to pull it right off my body.  It hurts.  It looks disgusting.  The skin is bruised and peeling from all of the swelling.  I'm just tired of it.  I'm over it. I want it to go back to "normal".  

I'm tired of being in such physical pain every single day.  I'm tired of not being able to stand longer then 5 minutes at a time to do dishes or to cook, without it causing so much physical pain that I either gasp or cry.  Sometimes both.  I'm tired of not being able to sit in my living room and watch a movie with my family, because the furniture I have hurts me too bad to sit there.  It's too hard for me to get back up from.  It makes my neck, back, and knee pain excruciating if I sit there longer then 10-15 minutes.  Since I'm an honest kinda person, I actually hate it.  I'm so damn isolated all of the time.  I absolutely love a full house. I love people around me.  I was always a very social and fun person, and I've always had the knack to talk to people I've just met, like we've been old friends from years ago.  Today, I had a full house.  While everyone was in my living room laughing and talking, I was sitting in here at my computer (since my computer chair is the ONLY place I can sit half-way comfortably) all by myself.  I HATE this so much, that I have to stop typing every few minutes, to wipe the tears away that are stinging my eyes while typing this.  

My body is in a pain flare.  A huge one.  Last Thursday, my daughter in law was here and she went into labor with my first bio grand child.  I was so dang excited.  I couldn't believe that I was finally going to get to "meet" my grand daughter.  Her, my son, and I jumped in his car and went off to the hospital.  When we got there, she was already a 7!  We were only at the hospital for less then 4 hours before baby Sophia came into this world.  As the nurses cheered and the doctor was exclaiming that she was a "beefy one", I had a split second of joy.  That joy quickly turned to me chanting over and over and over again in my head "Cry.  Cry baby, cry.  Cry. Cry".  The cheers quickly turned to silence and chaos as three nurses rushed my limp, dusky, cyanotic, so purple she was almost black, first apgar score of 1 (yes ONE) granddaughter to the warmer and was trying to suction her with all of their might.  As a stat page for respiratory and the unit manager was going through, they were practically running with our new baby from the delivery suite to the nursery.  We were in a small town, podunk hospital that doesn't have a NICU.  No ped's or neonatologists on sight.  -Who would've ever thought we'd need one anyway, with a 39 week, text-book pregnancy delivery?  This was all at 7:46pm.  Three hours later, my son and I were still being told by the on-call pediatrician that they called in, that my granddaughter may not make it.  It could "still go either way".  We were told that life flight was on standby, that they may have to transfer her to Toledo, to a NICU.  For the entire first two hours of my granddaughter's life, I stood, in more physical pain then I think I've ever been in, in my entire life, plastered to one single spot infront of the nursery window watching 3 nurses, 2 respiratory therapists, a unit manager, and a pediatrician work on this little baby. All I could do is stand there and watch.  Watch while they put her on oxygen (50%).  Watch while they inserted an NG tube down her throat into her stomach, to release all of the air in her little tummy.  -See, she wasn't "beefy" at all.  Her stomach and chest was huge from all of the water and air trapped inside her little body.  Watched while Xray rushed in with a portable machine to take a chest xray.  Watched while she was given an EKG.  Watched while respiratory used suction down her throat and sucked 2cc's of extremely thick crap out of her.  Watched while they started an IV.  Watched while a repeat xray was done.  No matter the physical pain I was in, I couldn't move.  All I could do, was watch. Watch, and pray.  And try not to allow myself to fall apart because my youngest son was standing next to me with tears filling his eyes, and saying "but she's going to be ok, right mom?  You know a lot about medical stuff from going to nursing school and having four kids.  She's going to be ok, right?".

As much as I tried to keep a lot of the horror thoughts and images I had in my mind, out of my mouth to try and keep my son from crumbling, the ped didn't pull any punches with him.  She flat out told us that they don't have a NICU (which was quite obvious) and that even if she was transferred that babies can decompensate so quickly, that this could still go either way. That she wasn't going to give us false hope.  We were trying to keep some of the worry off of my daughter in law.  Because of the epidural they wouldn't even allow her to be wheeled to the nursery window to see her daughter. She went from 7 to 10 so quickly, that she was already between an 8 and a 9 when she got her epidural. Of course, it didn't have any time to work at all.  All of this mess with the baby, happened because she came so very quickly that the fluid didn't get squeezed out of her, as she was coming down the birth canal.  Her little lungs were almost filled all the way up with fluid.  In an essence, she was drowning as soon as she came out.  

By the time I left to come home, my feet hurt and burned so bad that I couldn't stand it.  My back hurt so much, that I felt as if it was honestly broken.  I couldn't raise my feet to take a step.  I was kind of shuffling and limping,  My head hurt.  My heart hurt.  I was so stiff when I got home, that I wasn't sure if I'd make it out of the car, and into the house.  My everything hurt and was swollen.  Especially my damn leg that I had cellulitis in.  At the hospital, I'd moved one time while my heart was standing still.  That was to shuffle away from the nursery window, a little farther down the hall so my son wouldn't hear the call I was making.  I quickly called my mom and when she answered the phone, I told her that the baby had been born, an hour earlier, but that it wasn't good.  I started choking back tears while I whispered to her to pray.  To please, please pray that God didn't take our baby from us.  Then, I wiped both of my eyes, sucked in a deep breath, and took my spot infront of the nursery window, once again.  I'm thanking God, and I believe in the power of prayer.  My granddaughter ended up COMPLETELY off of oxygen (after starting off at 50%), by 2am in the morning.  She's just fine.  She's absolutely perfect. In my dad's family, every generation seems to have one red head born.  It looks like my granddaughter is going to be the one for this generation.  Here's a few photos of her that I've taken.

She gagged the NG tube out lol

Well, I was going to add a couple more from the day after she was born, but blogger isn't cooperating with me.  It keeps throwing the photo at the top of my post.  *sigh*  I'll give it another try, since I've typed between photos now.

Yay. It worked.  This is my youngest daughter holding the baby and my step-granddaughter, the baby's 1/2 sister.  

Look at her red hair!!  She's now getting some blondish-red in with the red, but she totally has the skin coloring of a red head.  Her scalp, face, belly, etc. is very red-colored.  One more.

Long story short, my body is still paying dearly for the abuse and stress from the birth of Sophie.  

So, now that I've taken you through the terrifying birth of little Miss Sophia, I can tell you the next thing I'm tired of.  I'm tired of being broke.  My lazy, selfish, POS soon-to-be-ex-husband is in perfect health, yet he refuses to work since leaving me last April.  A week here, two weeks there.  Usually just long enough for child support to catch up with him, and get me a check ...maybe two, then he quits.  His "girlfriend" supports him, so that he "isn't working just to give HER money" ...of course, talking about me.  

I'd give anything to work.  Not even for the money aspect, although it's desperately needed, but also for the social aspect of it.  I've already said how tired I am of being isolated all of the time.  I'm lonely.  I'd love to make friends.  I'd love to meet new people.  I'd love to have a reason and purpose to crawl out of bed in the morning, and to put on make-up and do my hair.  Not only would I love to be able to buy things for both of my granddaughters, but I'd like to buy things for my 17 year old daughter and myself too!  I never go anywhere to do anything fun.  I can't afford to.  I rented four RedBox DVD's last week for Courtney and I to watch.  Then, I could only watch one of them, because it hurt me too bad to sit in the living room.  That's it.  That's what our entertainment is.  I'd love to take Courtney and Leah (my 20 month old step granddaughter) to Cedar Point when it opens in May.  -And they have the electric scooters so I could totally do it without having to walk all day and night, but no money.  I'd really love to take my daughter, Leah, and Sophia to the Toledo Zoo.  Again, they have electric scooters.  Oh the photography shots I could get too (remember, photography is my passion).  Again, no money.  

I'm tired of feeling like a pharmacy from taking so many meds.  Meds that doesn't even help me.  I take them out of desperation, hoping that at some point maybe I'll be able to get even an hours worth of reprieve from the pain by taking them.  What I'm really tired of though?  The pound after pound weight gain that all of these damn meds are packing on me.  I'm to the point now, that I'm truly embarrassed to go into public and have others see me.  I don't have an ounce of self-esteem left at this point.  I'm also tired of the looks people in public give me. As I'm limping along pushing a cart in a store, I can almost read people's minds while they stare at me going by.  I feel like they're looking at me judging me for being fat.  I feel like they think I'm lazy.  -That one really hits home for people that I actually know in person.  I feel they think I'm just too lazy to want to work.  If people only had any idea how desperately I'd love to work.  I need to work to have any self-respect and dignity.  To meet people.  To have money.  I've gotten so fat from the newest meds I've been put on, that I don't have a single pair of jeans that fit me.  I only have 2 or 3 shirts that fit me the way they should.  I need new tennis shoes.  Again, no money.  No money to buy new summer clothes for my daughter either.  I'm tired of it.  I'm to the point that I honestly hate my body.  -That it has so many things wrong with it that I can't be a productive member of society.  That I don't have any life outside of the walls of my house.  That I can't sit anywhere 1/2 way comfortable, except for an old computer chair.  My body has completely failed me.  Throughout my life, I'd sometimes work a couple different part time jobs.  At one  point I carried 18 credit hours in nursing school, while working THREE part-time jobs and caring for four children ages 6 years down to 3 months old, all by myself.  I'm far from a lazy person.  I was a cheerleader all throughout school.  I loved and played softball.  I took Jazzercise.  I had a great, friendly, outgoing personality.  I was brimming with confidence and self-esteem.  I truly felt that I could accomplish anything in the world that I wanted to accomplish.  Fibro, arthritis, autoimmune disease, and COPD has stolen all of that from me.  It's reduced me to what you "see" today.  And I hate it.  I'll leave you with one last quote that I love.  That I need.  That I wish more then anything could happen for me.  I so desperately wish someone was there to hold me and let me "feel" that things someday may be "ok" again.



  1. ---thank you for sharing--glad you feel free enough to share exactly how you are feeling with us--it's part of why i subscribed. take care my friend....gentle butterfly hugs sent your way....

  2. I don't know why people don't like your blog, you are always so completely honest I enjoy reading your posts every time. It's nice to not get the "ra ra, having chronic illness is so wonderful and fufilling" posts.

    I'm so glad your grand-baby ended up being OK, she's beautiful!