Monday, June 28, 2010

The life of the chronically ill

I am often asked how I can be cheerful and pleasant with chronic illness.  I usually answer that it is my life, and what choice do I have?  I don't want to be gloomy and bitchy everyday of my life.  This answer is of course much easier to give when I am in remission and not in pain.  But after yet another diagnosis, the answer is much more difficult.

At this point in my life, I have been ill longer than not.  My symptoms started when I was 19 years old.  I did not receive my first diagnosis, Crohn's,  until I was 28, but was in and out of hospitals during those nine years.  I didn't experience remission until I was 36 years old.  Those eight years were filled with steroids, weight gain, weight loss, hospitalizations, medications, doctors, and lots of pain.  When I was 32 I received yet another diagnosis, Meineire's.  This proved to be very debilitating.  But it came and went, except in 2001 when it came and stayed and stayed....  Then when I was 40 I received another diagnosis.   This one scared me more than the other two.  It was Ankylosing Spondilytis.  This is a debilitating arthritis of the spine and other joints.  The prognosis is not something I wanted to think about in my 40's.

All of my diagnoses have a common thread, they are all auto-immune diseases.  It seems my body likes to attack itself.  hmmmm......  My doctors are always quite stymied by my body and its reactions to drugs, treatments and well, itself.  And once more my body has decided to throw another curve ball.

About two years ago, my right shoulder started hurting.  I went to the dr. got some prednisone, and realized I could no longer take prednisone when I ended up locking myself in the bathroom caling Jack because all I could think about was killing myself.  By the time I got to the orthopaedist, I could no longer move my shoulder at all.  I had Adhesive Capsulitis, or Frozen Shoulder.  After an Embreazement (VERY PAINFUL SHOT), which failed (another astonishing fact, my doc has never had this fail) and finally surgery, and one and a half years of physical therapy, I was better.  Now one year later, the left shoulder has frozen.  My doctor says this rarely happens, but it does on occasion, so of course, my body has to do it!!!  The pain is too fresh!  I still remember the embreazement and the pain during, the relief after, and the pain after the deadening wears off.  I remember the painful physical therapy, the tears, the screaming, the depression.  I remember the surgery and the pain.  I remember the physical therapy, the pain, the tears, the depression.  I remember.  I don't want to go through this all again.  I DON'T WANT TO!!!!  But what to do?

So, I gripe today, I will cry many tears, and I will fight depression.  Then I will make a choice, I will, most days, choose to smile and carry on.  But some days..........don't ask me.

Wednesday, June 23, 2010

Grandmother Allie

Sitting outside listening to the birds drinking my coffee.  I’ve just finished watering my garden which always takes me to memories of my Grandmother Allie.  She loved her garden.  She knew the names of all plants, trees and flowers.  She had a magical backyard for a child.  There was a large Mimosa tree which provided endless play.  From the large branches low enough to the ground to climb and climb “high”, to the pods the tree produced to make “beans” with, to the flowery blossoms to pick for “flowers”.  There were vegetables, roses, flowers and lots of herbs growing in her backyard.  Because she lived in Texas, it also meant complete dedication to watering.  I’m not sure why, but I always hated having to help her water.  Yet, it was the one time of the day you had her complete attention.  I would sit on her back stoop and we would talk.  She would tell me about the plants she was watering or stories.  With my Grandmother Allie, I felt completely and absolutely loved.

Living near the border of Oklahoma, my grandmother grew up with tornadoes.  Once a tornado came as a child and it scarred my grandmother for life.  She was terrified of storms.  In her little community (one stoplight on the highway) there were several underground cellars.  Some homes had their own and there were others that were shared.  Every time the clouds became dark and the winds picked up, off we would go to the cellar.  We were usually the only ones there, as we were really in no threat of a tornado, but try telling that to a terrified 70 year old grandmother.  We would sit among the jars of jelly, pickles, tomatoes, and other canned goods.  Even though my grandmother was scared, I was never afraid with her in that cellar.  I had such complete faith in her love and ability to take care of me.

I wish she were here today to see my garden.  She would love it.  Even though I didn’t do the work, she would still praise me.  Regretfully I didn’t inherit her green thumb, but that doesn’t stop me from trying each year.  This year, my tomato plants are actually producing tomatoes.  I am so proud.  Luckily, I have a great friend who is patient with me and helps me have a beautiful garden.

I miss my grandmother.  I wish she could be sitting with me right now.  We would listen to the birds and she would try to identify them.  She would be so delighted that one of my plants (I have NO idea the name) is about to bloom.  She would marvel at the cool temperature.  She would tell me the stories of how she started my coffee addiction at age 3.  She would praise my crocheting attempts and be awed at my knitting.  She would be humbled that I named my daughter Allie after her.  She would praise my parenting skills and tell me how wonderful my children are.  She would love me unconditionally.

I miss you and raise my mug to you.