No you may not cut my spine open

Well good morning horrid stiff dull pain.  I was expecting you.  The exhaustion on the other hand I was silly enough to not plan for.  So noted.  Lesson learned.

Yesterday I started the three weeks of decompression therapy I have committed to with my Chiro.  It is the final attempt to move my right SI joint and L5 disk back in place before surgery.  The surgery I am NOT NOT NOT having.  Have I explained this to you?

I have Fibromyalgia, MRSA & PTSD.  I fell in the rain and landed hard on my left hip almost a year ago.  I knocked both SI joints out and ruptured L5 disk.  That is the lowest disk in your back.  I didn’t realize I had damaged the disk until by December I could barely sit on a soft seat and a hard chair was out of the question.  I had swelling just over the crack of my ass that looked like a small potato under my skin.  I could feel something pulse against the back of any chair including my drivers seat in my vehicle.  I began to experience numbness down my legs and pain that required me to lift my leg with my hands to set it on my parking break.  I realized that I spent every waking moment trying to numb pain or drug myself to sleep.  I called my primary and she ordered me to go to an ER immediately.

When you have chronic pain, an order to the ER is like being handed a box that weighs 50+pnds and being told to carry it up a hill without complaint.  And the pain will not only not leave but most likely go up when your stress level rises.  I called and bitched to a couple of people and then drove myself to the ER.  As I parked I knew, having been to this ER multiple times a few years back when a friend went through Gallbladder hell, that I had a 50/50 chance of getting a doctor with compassion -vs- an arrogant ass who would treat me like a hysterical female looking for pain meds.  I hoped with all my exhausted might that I did not get the same young male doctor whom I had snapped off the head of and removed my best friend from his care.

I got a bitch who could not have been more pissed that my doctor sent me to her ER.  They were busy.  I was placed in a room and asked at least five times if I was losing control of my bladder or bowels.  The last nurse who asked I replied “I don’t know how many times I have to say No before you stop asking me that” or something close to that.  That produce Dr. Pissy Bitch in my room with an attitude.  She informed me how busy they were and they were trying to figure out what exactly it was I wanted them to do for me.  Awesome….. I am wasting her time and yet if I disobey my doctor I know what the result will be.  I take a huge deep breath in and let it out while maintaining eye contact.  It is all I can do not to bite her head off.  I repeat to her the symptoms I am having and that when I called my doctor she told me to please go to the closest ER to be examined and be prepared for an MRI.  I told her that I had advised what ER I was driving to and she had approved because your hospital has MRI on site and if my doctor had not called ahead I would be happy to get my doctor on my cell for her.  I had blood drawn and was asked for a urine sample.  I sat in that bed for four hours with a nurse popping every 30mins or so to ask if I was OK.  Doctor super cunt returned to advise that they were very busy and she had no reason to order an emergency MRI but my blood and urine were clean so did I want some pain meds she asked finally looking up from my chart and speaking with obligatory tone.  “No I do not.  I only allow my primary doctor to prescribe me any medication.  I came here because she order me to.  I did not want to waste my time here either.  I own a business and just lost another days pay to whatever this is.”  I was off the bed by now.  I turned and raised the gown to show her what she had not even asked to see.  She advised that it was still not a reason for an emergency MRI.  I thanked her for her time and told her I was leaving as I began to get dressed.  I fought back tears as I dressed.   A nurse discharged me and I walked out mortified and fighting rage.

I see the #1 spine and joint doctor in the state of WA.  He is head of “whatever” at the University of Washington.  He has treated my hips and knee injuries over the years.  He knows who I am and speaks directly and honestly with me.  I called and left a message describing what was happening and asked to be seen immediately.  I got a call from his nurse saying Dr. S wants to see you right away and to meet him at his office the next morning.  I could not sit on the chair in the treatment room.  I was frustrated as I described the day before.  He shook his head and told us he was shocked they had not given me an MRI and apologized for how I was treated.  He told me I should just call him from now on.  He ordered an emergency open MRI and gave me something to calm me down for the MRI.  He told me he needed me to be rock solid still for him to get a good image.  I had the MRI.

Dr. S’s nurse called me the next day late in the afternoon.  She advised that Dr. S  said to schedule me for guided injections and he would talk to me at that time.  I was scheduled for the injections the following Friday.  My son drove me and went to the pre-op room to meet Dr. S..  Guided injections are exactly what it sounds like.  I am given some medication to relax me.  I lay on a table in a sterile room.  There is an x-ray machine above me that takes a picture every few seconds.  I don’t honestly know how often it takes the image.  The images are used to guide the needles directly to the injured area.  As fast as the needle hits the injury there is a split second of sharp pain.  Then the steroids are injected and the needle is removed.  It is not a long procedure but a very delicate one.  You must be still.  The first pricks of needles are the locals to let the doctor inject the longer needle so far down.  I had these shots in my hips years ago.  I knew what was going to happen.  But this time I was ass up and had a bulge over the crack of my ass.  Which is exactly where he was going.

Dr. S came in and advised that L5 was ruptured.  Squashed like a jelly donut and it’s really bad he said.  He explained that this was his last step before open back surgery.  He told me that he wanted me to go home and sit for six to nine months no matter how much better I felt.  I should not bend over and twist.  The injection went in with zero issue.  A week later the swelling went down.  The pain became somewhat manageable but did not leave.

My friends begged me to see a chiropractor and try Decompression therapy.  Decompression therapy is being strapped to table and then slightly inverted.  30pnds of reverse pressure is applied  and the table opens up below the injured disk.  The treatment is to allow the disk to slide back into place.  My friends who had the treatment felt no pain during the treatment or the days after.  I feel like I got hit in the back with a baseball bat.  Even my abs are sore.  Fibromyalgia absolutely sucks ass.  I started waking at 3AM with tight clenching breath taking pain.  I talked about my options with my closest friends and family.  My Chiro told me he knows the pain comes from the Fibro and his other patients with Fibro have faced the same choice.  He asked for three weeks of consistent treatment.  he said in that time he will know if we are  having an effect.  I am choosing to give him that three weeks.  I started yesterday.

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The 20’s

When I took off into the world as an “adult” at least by age, I had no idea how to live.  I didn’t know how to manage anything.  I was barely educated.  I was scared all the time.  I hated being alone.  I spent most nights fighting irrational fear if I was alone.  I tried to live alone in a small apartment.  Rather than battle the nightly fear I let an alcoholic friend sleep in my apartment.  From that point on I knew I needed a roommate or else I would be afraid every night.

My 20’s was littered with married or single men who just wanted sex.  I was angry at them for years.  I would have once listed them as men who used me.  But let’s be honest.  I chased after and used them.  I used them to try to heal what was broken inside me.  I used them to feel safe at night.  I used them to feel loved for a brief few hours.  Not once in my 20’s did I date a nice guy.  That is hard to admit because my Xhusband who is was a good man in many ways is included in that time.

But I have to be honest, our relationship was born “wrong” and try as we may the branded scarlet S was never removed.  He was married.  He told me al the stories of how horrible and miserable his marriage was.  He told me how he loved me and wanted to be with me.  He was the first man to say those things and I was a young and very desperate for love woman.  I actually believed we would live happily ever after when I moved in with him the first time.  Two weeks later he told me had to work on his marriage.  I left and didn’t hear from him for I think a few years.  Then he had a friend who was private eye track me down and call me.  I ran straight back to him.  I was living alone in a tiny apartment and battling the fear every night.  I was gaining weight rapidly because I went to work and ate junk food.  That was my life.  Did I love him?  Yes I did, very much.  Was it the correct decision?  I have to say yes because in the end my path led me to where I am and the blessings I have because of it.

Head on into a brick wall

I have been getting waves of anxiety and the thought that “my life is completely fucked up” for a week now.  The interesting thing is that the feelings and thoughts are coming as I am facing some of my worst demons / fears.  Thus far, the tools I have in my bag have been working.

I recognize the anxiety on the first wave.  I answer “no – not true” and I take deep breaths.  I tell myself I am facing everything and of course it’s scary but I have already lived through the worst hell so I know I can do this.  I push the desire to break down, panic or whatever aside and simply refuse to let the thought pattern start.  I know that if I let myself think on any of the problems I have or my childhood when the emotions are coming at me that intensely, I will quickly spiral to a place I no longer need to go.  My desire to fight the PTSD and all that comes with it has made me stronger.  Consistent honest gut wrenching therapy has made me calm, strong and once again in control.  ((((deep breaths))))  I really don’t think I knew how far out of control I had spun.  I mean I was there.  I knew.  I fought.  I kicked and screamed, sought medical care and in the end clung on for the ride.  I spiraled.  Until I finally did the one thing I know will always give me control but is the hardest way for me to get control of me again.  I went into seclusion.  I faced my shit.  I got mad at me and then I forgave me.  Again, I looked at myself and forgave.

I’m doing some crazy shit like calling the IRS and telling the truth of the last two years and making arrangements to pay my debt and move on.  I’m actively facing every mistake I made in the last two years and doing what it takes to make it right.  I am telling my closest friends and my family exactly what I am doing.  It helps to feel the support and they will keep me accountable.

So while I am doing the right thing and facing it all, I still get to feel like impending doom and that I am flying head on into a brick wall that will kill me on impact.   Ahhhh the joys of PTSD.  Fuck it man really.  I have already survived far worse.  I refuse to do anything but face it and keep going.  PTSD left untreated does not go away.  It’s in the darkest corner of your mind doing push up’s and growing stronger.  Every time you deny it is there you grow a tiny bit weaker.  Until one day you can once again hear your own heart pounding over a white noise followed by all other sound blurring together, the air in your lungs feeling like ice and the overwhelming feeling that your life is fucking over.  Do you have the tools to stop it?

Do the work.  You can get better.

I need to write more of my story ……. Pic is 2011 at our regional Burning Man event.  I made the head piece with hot glue and a headband at a workshop.  I’m really looking forward to this year.  To giving back and to loving.  Just walking around giving and loving on the people.  No set plans other than to spontaneously help and give where I see I can.

Forgiveness is still difficult 

I have a confession.  I’m starting to feel empathy for A.  I am longing for the anger to leave me and the ability to forgive.  Forgiveness is still so difficult for me.  But I am starting to see that it is a choice.  A counsious choice.

I don’t want to think of her as wondering wtf and where did I go.  I cut her off cold and stopped answering her after the last blow my heart could take.  It was like a sword went through my body and spit me clean is half.  Like she physically reached over and bitch slapped me.  She still has not heard from me since that day or even what the final blow was.  But I am starting to see her as sick.  As sick as I was.  And not alone in her mistakes.  

I call BS!

This morning I have decided to call BS on myself.  I have been a strong advocate of medical marijuana since entering the world of chronic pain.  However I also strongly agree that there are certain professions where I would not want someone to be stoned or a regular smoker.  Like a surgeon or pilot.  That being said, this morning I had another long talk with myself.

Fact is that my son’s girlfriend is pregnant at 18 and really needs an excellent Mother in her life right now.  Both of them are looking to me for answers and direction.  I can’t be an excellent Mother and Grandmother stoned.  That is just the simple fact.

In Seattle we have some pretty awesome organic companies emerging.  We are now able to purchase products that contain the CBD (cannabinoid), which is the part of the plant that reduces pain and inflammation, and the THC, the part of the plant that gets you high, has been removed down to a percent that it will not affect you but is there just enough to hold the chemical make up.  Following me?  I can buy lotions, patches and now even smokable oil that is CBD only.  I can get the relief I want without getting high.  When it was just me sitting around the last few months, fine no problem being high except I got nothing done.

But now, I call bull shit.  I put all my MMJ away.  I’ll go to the dispensary today and get what I need.  My son and his family are my priority.  I can’t be a hypocrite in front of him.  He keeps my feet on the ground and he doesn’t even know.  But he will, when that baby hits his arms.

The craziness of a teenager

We arrived in Stockton, CA in 1984.  I was 15yrs old.  My StepFather had been transferred again.  I was to start a new life.  The conflicts began almost immediately.  California was like a new world to a weird NW girl.  We stayed at The Hilton hotel for a couple of weeks until we could find a house.  I was bored.  I don’t remember the excuse I used to get out or the time of day it was as I roamed the halls of the grand hotel just wasting time.  I saw a man and went from zero to a complete fantasy of him falling madly in love with me in my brain.  Looking back, I know now that he was the first “bad guy” I was attracted to.  I changed into my swim suit and headed for the pool hoping to see him.  I did.  He told me his room number and invited me to come up.  I don’t know what I was thinking would happen.  Honestly, it was before I knew what it meant when a man invites you to his hotel room.  I walked in thinking I would finally be having adult conversation and be a grown up.  Maybe he would marry me.  I hope my StepFather would like him…..

I was in his room for only a few mins when he came out of the bathroom wearing only a towel.  At first I thought he had his swim trunks on under it.  I asked if he was ready for the pool.  He said the pool was fun but he wanted to get to know me first.  I was still clueless.  I was thinking he was paying attention to me and this is must be what adults do.  He laid down on the bed and through the towel back.  I was 15yrs old alone in a hotel room with an adult (I’m guessing 30’s) male who had just exposed himself and was laying on a bed.  I moved like a flash towards the door.  He didn’t move.  I opened the door, yelled something about seeing women as a piece of meat and ran down the hall.  I ran and ran without looking back.  I told no one.  The next day I was in the kids play area playing with some younger kids who were also staying at the hotel.  I looked up to the floors above and saw him standing at a rail, pointing down to me and talking to another man.  I again took off running.  I stayed in our room unless my Mom or Stepfather was with me for the rest of our stay.  Every time we left the room I was terrified I would see him and he would tell my parents what a bad slutty little girl I had been.  I immediately blamed myself and feared I would be in trouble.  Again, it never occurred to me that he was in the wrong and could have gone to jail.

A few weeks later we moved into a duplex in the nicer neighborhood of Stockton.  The distinction is important because what I was about to find out is that California gangs are far more real and serious than anything we had ever seen in Portland, OR.  My Mother took me to tour the school that our home had recently been reassigned to.  We drove south and I was walked through the halls of a high school that felt like I was being walked straight into hell.  We drove away and I told my Mother if she enrolled me in that school I would not go.  She told me it would never happen.  The city had just voted to start trying a “busing” program to try to integrate the students.  Basically they were busing kids from both side of the tracks to the side they did not live on.  I realize how it sounds now.  But at the time I was truly terrified.

My Mom found and enrolled me into a private Christian school.  The school required that we attend church.  This is when I heard things like “Jesus, Atheist and sinner” for the first time.  I showed up in my treasured black leather biker jacket with my Ozzy pins and my black eye liner thickly in place.  I was immediately advised of the dress code and many other rules.  The next five years were a nightmare.  Now I had it in my head that I was evil and going to hell for my sins.  Back and forth.  Up and down I went.  I would pray and pray and pray.  I went to 6AM prayer meetings, attended church three days a week, read the bible until I had it almost memorized and sang my heart out to the beautiful songs of worship I learned.  Then I would “rebel” as we called it in our youth group.  Rebelling was when we would go party and act like normal teens.  I became a master at hiding my rebellion and sins.  My friends and I would drink, smoke weed and party like teens do.  Then go to church or school and act like the perfect Christians.  We had it down to a science.  We had codes and always backed each other up when questioned by adults.  We had changes of clothes, condoms, cigarettes and more stashed in the trunks of our cars.  We knew exactly where we could change and still make it to our boyfriends and back on our lunch hour or after school.  By my Senior year I was dating a guy who played the same game but was a year ahead of me.  He went to a public high school but lived close to me.  I met him while working after school at Burger King.  He graduated and went to San Jose State on a full basketball scholarship.  He was a talk gorgeous dark black drink of delicious and the first “player” I gave my teenage heart to.  He was young and so was I.  He never hit me, never treated me like anything less than a queen when I was with him.  It was just that I had no idea what a player was and how much he played lol lol.  I have no anger for him.  He probably spared me a great deal by being my “boyfriend.”  I sat at home waiting for him and writing him letters a lot.  I drove to San Jose to see him twice and my parents never knew.  I thought I was in love.  I was just a seventeen year old very confused and desperate for love young lady.

I know that I was a difficult teen.  I had a lot of emotional problems due to the molestation and rape.  But I have to be honest and tell you that my StepFather also contributed greatly to my PTSD.  Had I not been molested and raped his constant teasing and putting my Mom and I down for being women may not have had such an effect on me.  But my reality is that I can still hear him telling me I am fat, ugly, stupid and that someday he will have to pay someone to marry me because no one will ever want me.  So while I remember trying to disappear and be quiet, my Mom remembers constant battles.  I agree that I was always in trouble. I just don’t agree that I deserved it.  The night before I graduated from high school my Mother told me I had to leave her home because I was ruining her marriage.  I was standing in the guest room ironing the silk gown / robe thing that goes over your clothes.  She just walked into the room and said “you have 30 days to be out of my home because you are destroying my marriage” and walked out.  I knew she was serious because when I was about ten years old and was in trouble for something she had told at me not to ever make her choose between me and her husband because she would choose him.  A sentence she has stood by and I would like to slap her for.  I looked at my son years later at ten years old and shook my head remembering that day unable to fathom laying some shit like that on him.

I tried to find a job and a friend who would let me move in with them.  Three days before my deadline my Father drove down from Oregon with a friend to retrieve me and my possessions.  My Mother did nothing to help me.  She didn’t help me pack, teach me how to pack anything or offer any guidance.  Every night I was quietly as possible putting my clothes and most prized possessions in boxes I got from grocery stores or garbage bags.  As my Father and his friend loaded my things into his truck I was excited.  I was leaving Cali and going back to Oregon to live with my Father.  I was 18 and had a high school diploma.  My Mother sat in the living room and watched TV.  She had to be hurting but she choose to express it in anger.  When we I told her we were done she looked at my Father and said “Well I guess I wont tell you all her problems, I’ll just let you discover for yourself.”  Later as we drove down the road I asked my Father what she meant by that.  He said he didn’t know and asked what I thought she meant.  I remember saying that I didn’t think I was that bad and that I didn’t think it was nice of her to say that.  I had been at my Fathers home for a week when he came to me and told me that the therapist he and my StepMom had been seeing had recommended one for me to see.  I agreed to go.

“Something really really really bad happened to me when I was little….”  This was the way I started the answer to the request from my new therapist to tell him my life story up to this point.  I then proceeding to tell him about what a horrible person I was and how I had been so bad to have sex in high school and so on.  I told him about the church and how now there were demons after me because I was a sinner.  I finished my story just before the hour was over.  “What was the really really really bad thing that happened when you were little?” he asked.  I told him I was raped but that I was sure I had already given that to God and it was not a problem anymore.  He suggested we start there to be sure and I agreed because he was the doctor and frankly I was on an upswing from having finally moved into my Dads home.

Two months later the therapy he started with me would trigger a flood gate of memories and I would experience my first flashbacks.  I began to unravel and became suicidal.  I look back and wonder if I really wanted to die or if I was trying to express the level of pain that was inside me.  Either way, my Father, StepMother and I made the decision that I needed more intense therapy and at the prompting of my therapist I was admitted to a psychiatric hospital.  I remained there for two months.  I have gone back and forth regarding the treatment I received.  If you watch the movie “Girl Interrupted” you will see almost exactly what it was like except it was the late 80’s rather than the 60’s.  That movie was spot on.  I had a completely enmeshed and inappropriate relationship with a fellow female patient.  Not sexual at all.  I wanted to protect her from being further abused.  She lied and manipulated me.  I was older.  I was blamed for everything.

When I left the hospital I think I might have been somewhat worse off mentally but I was alive and that was a good thing.  I just still didn’t fully believe it myself.  I was 18 and all I wanted was to be left alone.  I wanted a man, a job and to be loved.  I wanted the fantasy all American life.  I wanted to just be normal.

Day 24 of 30 Day Chronic Illness Challenge

24) How have you managed to juggle your social life through your illness?

At first it was difficult and frustrating.  I cancelled constantly.  I felt guilty for it.  Over time I learned to manage my energy (spoons) and choose what to promise I would attend or do carefully.  Honestly, I also think I am blessed.  I have an amazing inner circle of friends whom I am not afraid to be real in front of.  I know that I can be sick or in pain and they still want me there and love me.  I am not a drama queen.  I don’t make them wait (serve) on me. I am very independant.  I think that makes a difference.  My friends know that the most I will ask is that we slow the walking pace or that they keep going while I take a day off.  This makes going on vacation with me not a bummer.