Saturday, 15 March 2014

My week, month, year

So I am going to tell you all about my week.  But in order to really capture it I need to take you all on a short look back.
I will sum it up for you all as to the best of my memory.  Just the high points.

  1.  March 21, 2013, I woke up with a pain in my hip.  
  2. March 23-Ladies Night Out spring auction
  3. April 30- Finally went to DR. Thought the pain would go away.
  4. May-XRays
  5. May 13-told that I have the beginning of bone degeneration and a raised ANA levels.  That this could be rheumatoid arthritis. Referred to rheumatologist. I went into survival mode. Started planning how life would be now. Pain started spreading throughout my body.  Ankles and hips became the worst.
  6. June- Rheumatologist. 
  7. July-Bone scan and Rheumatologist the beginning of twitching in my left hand
  8. August-The pain had worsened steadily and was beginning to overwhelm me.  First visit to hospital because I was stumbling into things, dizzy, brain fog. One MRI
  9. September-week in hospital, spinal tap, celebrex, they took me off of my migraine pills for the time in the hospital, unbelievable migraines, throwing up several times daily, finally refusing celebrex on day 4, left hospital with low dose of amitryptilyne that didn't work even with an increased dose, could no longer work, 2 more MRI's.  Worsening tremors.
  10. October-fairly certain I was going  to die.  I wish I was kidding.  More appointments, sick everyday.  Could hardly stand.  If I had someone stop by, I slept for days  after.  EEG's etc. Tremors turning to a convulsion type episode. 
  11. November-change of pills. slowly started to regain some strength, more appointments.  Because my tests showed nothing, no DR is willing to treat me for anything.  All they did was manage my pain.  Started Lyrica.  Finally some relief of the pain.  
  12. Dec 18-EMG in Saskatoon. Painful test.  DR lost original transcripts.  As best as he remembered 3 months later, anyways.  After I called 3 times for test results.  SAD!
  13. January-No DR would see me until results of EMG. See above. I also got psoriasis on my hand and on my legs.  I got large itchy sores.
    This is not me.  My kids refused to allow
    me to put my picture on my blog.
     Not Cool.  
  14. Feb 28. Neurologist appointment.  Said he still didn't have test results from EMG.  See Above.  However he was willing to try one more thing.  He thought that maybe I had something called PKD.
  15. He put me on anti seizure medication.  This medication was supposed to stop the tremors.  If it worked that would mean that I had PKD.  And it also left the second diagnosis of fibromyalgia.

So here is where I will start off. My DR told me that within 3 days I should start to see a difference. He would do botox for my migraines on March 11. I agreed.  The attacks that would happen to me were worsening.  While having an attack my teeth were now starting to grind.  I was unable to walk during them.   I retained consciousness through out. I had one about every 3 days.  I did not believe that the pills would work. By this time I had given up hope really.

However after 5 days, I began to notice a difference.  I had not had an attack.  I was starting to notice my hands were steady.  My steps were more sure.  I finally allowed myself to hope.  By March 9 I was over the moon.  The pills worked.  I had a solid self diagnosis. PKD and Fibromyalgia.  I was going to get better.  I started toying with the idea of going back to work within a couple of weeks.

And then it came crashing down.  I went to the hospital on March 11 to get my botox injection.  I showed my DR my steady hands.  I was excited.  So was he.  He assured me that he would do whatever he could to help me.  He injected the botox into 31 locations on my forehead, between my eyes and all around my head and neck. He found a lymph node in my neck that was swollen.  He made an appointment for it to have an ultrasound the next day. (like I need more stress.) And I left.

I drove home happy that everything was coming together.  Stopped had lunch with a friend and headed home.  Finished out my day and went to sleep.

During the night I thought my skin was dry.  It was so itchy.   I woke up Wednesday morning after a very restless night.  And looked in the mirror.  WTF! I was covered in hives.  Head to toe.  Incredibly itchy itchy hives.  I called the DR office.  Apparently I am the first person in ten years that has had a reaction to botox. She said she would mention it to the DR and to take an antihistamine.  Five minutes later the DR called me back.  He was very concerned.   He was unsure how to approach it.  He decided that there was a possibility that the anti seizure drug was causing the hives or possibly the combination of the drug and the botox as he had never had a reaction to just the botox.  I was to stop taking the anti seizure drug and see if the hives went away.
Again, not my hives but similar to this.
compliments of

And now I had to drive to Regina to get my lymph node checked.   The woman asked if I had been sick recently and I almost lost it.

By Wednesday night I was even worse. When I woke up on Thursday I was still covered and just as itchy. I was starting to tremble again.  Get this, there were hives in my psoriasis.  What kind of cruel joke is that?  I spent all day trying not to think of anything that might result in scratching.  I was tired, itchy, trembling and sore.  And then the worst part.  I got my period.

Now if you are a woman you will understand this.  I almost cried.  What more could happen?  WTF!!! I told my husband that I was only missing a cold sore.  That would complete the oozing horror story my life had become.  How in three days I went from elation to complete devastation is beyond me.  I simply do not know what the hell had happened.

So that is my week.  Well five days really.  And we start at the beginning again.  As soon as the hives go away I have to start taking my anti seizure drugs again and see if I get hives again, so they know what I am allergic to.  It just keeps getting better and better.

Wow sorry this was a long one.  I will go into PKD more another time.  Just because I would be bored if I were you.  Hope I didn't bore you too much.  Thanks for reading!