Day #6 of 30 Chronic Illness

6) If you could have told yourself something when you remember these symptoms arising what would you have said?

I didn’t read through all the questions before I started this challenge.  I wanted my answers to be raw and honest.  This is the first question that I have set my iPad down and thought “hmmmm I don’t know.”  I had to really think and decide what was most important for each illness.  I never planned to be chronically ill.  I planned to be an all American rock star wife & Mother.  I planned to be someone completely different.

Fibromyalgia ~ Your entire life is going to change but in the long haul you will find your true self and you will love her.  So hang on to nothing.  Let go and just learn to accept the change.  There is a warrior inside you that you have not even dreamed of yet.  You wish for strength now and she is a million times stronger then you are wishing for.  You are going to kick ass.  This disease will change you and it is with you for the rest of your life but soon you will be almost grateful.  We’re it not for the pain…..

PTSD ~ If you can’t tell your therapist the truth about your thoughts, feelings and behaviors keep meeting new therapists until you find one you can be 100% raw honest with and don’t feel judged.  And then ask for the tools, do the hard work and kick its fucking ass.  Part of me thinks what I went through in my twenties as a result of the PTSD was unavoidable until I matured.  Like young twenty something female plus PTSD just always equals train wreck.  I got really intense therapy when I was young.  It took me maturing as an adult to really do the work and not just be the drama.  But my honest gut answer is still go to therapy and do the hard work.  When a trigger gets hit, I simply have the tools to handle it.

MRSA ~ Never ever pop a pimple again.  Wash with Hibicleanse at least monthly and always when you see a body pimple.   Eat raw greens a lot please.   The first battle was nothing and I moved on with life like it was nothing.  I took an antibiotic and it went away within a couple days.  It wasn’t until the second battle that I learned what this disease is capable of doing to me.  I have surgical scars now.  Twice in the last few years I have spent 30 plus days going to the doctor daily to be cut open and have rotten flesh removed from me under local antithestic only.  There is a low fever the entire time and I can barely eat.  Like having the flue with minor surgery daily.  I truly believe my diet and lifestyle could have prevented the reoccurrence.  Damn I need to eat more greens.  The Wickedly Effective MRSA Diet changed the way I look at greens and I am certain got the last of the infection the last time.  

I like this challenge today.  It gave me something to occupy my mind with when I woke up in pain.  I really fucking hate this pain and what it can reduce me to.  

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I don’t take my medicine to get “high”

This is what I’ve been trying to say for years.

All Things Chronic

I hear this from a lot of pain patients.  Trying to distinguish their medications from drugs, because people who take drugs just to get high are weak and shameful.  They’re not treating an illness or a disease; they just want to forget for awhile.

I guess alcohol wouldn’t be so popular if people didn’t need to relax and forget about all the stress in their lives.  To relax, some people choose to exercise, surf the internet, play video games, watch TV, gamble, eat… take drugs.  But to me, what this says is that our lives have become so stressful, that it’s impossible to relax without a little help.  When did relaxation become a crime?

Do caffeine, sugar, and other stimulants get you high?  Yes, yes they do.  More so in children than adults. The high from stimulants is just a different effect than the high you can get from drugs like…

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Morning Pain

I use to wake up and scan my body to see if I had stiffness or pain.  Now I wake up to full on screaming horrid pulsing pain.  I start my day wondering if this will let up or if I will limp & suffer all day.  Should I fight it?  What will work this morning?  Am I nauseous too? 

I stayed home because of the pain yesterday.  I could not bring myself to do yoga.  It is 5:30am and my pain is a seven out of ten.  My stomach is bloated & has gas.  I want to go back to sleep but the pain will not allow me to. 

I am questioning if this will ever stop……. 

Day #5 of 30 Chronic Illness

5) How does being chronically ill make you feel?

weak

failure

less than

isolated

afraid

uncertain

exhausted

angry

frustrated

misunderstood

judged

selfish

I miss sleep

Ohhhh Joy I am awake and in pain at 3am once again.  The rain is pounding down outside.  I am laying in bed reading, listening to the rain and waiting for the Vicodin to bring relief.  My eyes starting burning yesterday and are doing it again now.

I am exhausted of this pain.  I can not keep going like this…… Yet some how I will.  I’m doing everything I am told to do except stay sitting / laying down all day and night.  That I will not due because it will equal far worse pain and debilitating condition from the Fibro.

My center of focus is changing again.  My son, his girlfriend & the baby on the way are my priority.  I have a reason to heal, a motivation to save money & a glorious future to look forward to.  This pain is trying to rob me of it all.  I have to be stronger then ever before.  Stronger then when I was diagnosed and my boy was young.  Stronger, wiser & most certainly in far more control of my reactions.   My son is counting on me.  My Grandchild is as well.

I miss sleeping all night.  It’s been ….. I don’t know how long.

Day 4 of 30 Day chronic illness challenge

4) How have your friends and family reacted.

I don’t like this question.  When we get sick we expect other people to react perfectly.  They were just as confused as I was.  I lost friends & I gained friends.  My family got scared.  I was scared.  I lost my job.  Well I quit because I could not work and I thought I was losing my mind.

When the MRSA and PTSD hit my closest friends helped me.  I was driven to the doctor, friends stayed at my place to help me feel not alone, they worked my business.  There have been severe battles with both.  Each battle, my closest friends have rallied around me with support.

Why do i allow myself to wallow in feeling alone?  If I am alone, it’s because I choose to be.  Yet when I feel the sickest I tend to get caught in a thought pattern that tells me I will be sick and alone forever only to eventually die that way.  Yet, when I was really afraid I was never alone.

Day(s) 2 and 3 of 30 Chronic Illness

2) How have these illnesses effected your life?

Completely changed who I am and how I manage my life.  I was surviving and miserable.  I got sick and thought it was the end.  I found out how strong I really am and what I am capable of doing.  I changed what I eat, how I exercise, what I believe in spiritually, what I believe works medically and even who I associate with.  I would say that each illness has brought its own fear and its own intensity at different times.  Fear of your own body getting sick again changes a person.  Loss of control changes a person.

I fear the MRSA will infect me and I will loose the battle.  I fear the Fibro pain will put me in a wheel chair or make me home bound.  I fear the PTSD will never stop and I will have to battle it & horrible depression off and on for the rest of my life.  I fear being old sick and alone.  I fear dieing alone in pain.

I took more risks once I was “sick” in my own mind.  But they were calculated and had great rewards.  My priorities changed.  I am picky about who gets my energy because I do not have endless supplies any more.  I feel like I could write for hours on this question.  It’s so broad to me. 

3) How did you get a diagnosis?

The Fibromyalgia was first and while I knew I was sick, I was still not prepared.  I had been vomiting and in pain as well as unable to sleep for awhile.  I was irritated and pissed off by the time I met the doctor who diagnosed me.  She took me into her office, with her desk and the big comfy chairs.  That is never a good sign.  She looked at me and said I believe you have a disease called Fibromyalgia.  I had never heard the word before and had no idea what she meant.  The next twenty minutes I spent with her were frightening to say the least.  In 1999 there was almost no research being done and women were told they were crazy and to see a therapist.  Well, not by all docs but most of them.  I went home with fifteen prescriptions, a list of books to purchase, a referral for physical and mental health therapy and a bag of pamphlets on chronic pain.  

The PTSD came quickly there after.  I had been in therapy and had discussed my childhood before but the psychiatrist who diagnosed the PTSD was the lady I saw after being diagnosed with Fibro.  Every doctor I saw for Fibro recommended being treated by a therapist as well as all the literature.  There is a known connection between trauma and Fibro.  So as I was discussing my trauma the psychiatrist recognized my symptoms and had me tested.  I would guess it was about 2000 or maybe 2001.  I have been saying that the PTSD was triggered in December 2013.  The more I am in therapy this round the more I realize it was not completely dormant.  Looking at my own behavior over the last ohhh twenty years, I would say the PTSD had fluctuated.  It got really severe in December and I have been fighting to get control back for a solid year now.  I am far better and succeeding.  I am not cured.  I have tools to battle the triggers and blah blah insert happy shrink talk here.  I fucking hate it.  I resent having it.  It’s on going torture due to abuse I didn’t deserve and could not stop or control.  I hate that I have to battle so hard and yet I love the warrior I have become and continue to nourish with each battle.

The MRSA first arrived in 2006 and was quickly chased away by a simple dose of Bactrim.  I was bite by a spider in the shit hole of a house I was living in on my leg.  It got infected and tested positive for MRSA.   The second round was far more nasty and scared me pretty bad.  It was in my chest.  I got a tiny little pimple on my chest close to the arm pit.  The next morning it was inflamed and I knew immediately it was MRSA.  The infected tissue was way down in my breast.  My doctor cut me open and removed the foulest smelling infected flesh from my chest everyday for just over a month.  I ran a fever of 99 (so fucking irritating) the entire time.  I have some really foul pictures of my red inflamed breast with the gauze that was left hanging out to “wick out the poison.”  The third and last round (I hope) was again in my leg.  I woke up with tiny red dots all over my legs and hips.  Nothing my doctor tried got rid of them and the dots began to appear on my arms and face.  I went to a Dermatologis who decided to do a biopsy.  She cut out two of the dots from my leg and stiched it closed.  It got infected and MRSA appeared again.  This time it again fought like mo-of so I went to an Infectious Disease doctor.  He again numbed up and cut nto my leg everyday but this time he went so deep that he got it all in a couple weeks.  I have five clear surgical cuts on my chest and a nasty round scar just bigger then a silver dollar above my ankle.