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.


  1. I am glad you are who you are and that you are a fighter who is willing to be honest about the crap (sometimes literally) of life.

    I cannot ever full imagine the pain you are in, the fears you are harboring (even if temporarily) and the pure angst you are attempting to quell so you can keep moving forward.

    I am sorry, KaKi. You are dealing with something that totally sucks. You are right.

    I promise to be here as you go through it - long distance as it is. My love to you today - and always, really.

  2. Thank you for sharing with such honesty, KaKi. Thank you for trusting that people really want to know how it is with you. I'm holding you in my heart and sending prayers. Gretchen

  3. Thank you Joy and Gretchen. Sometimes I am not sure people do really want to know how it is with me. I am not sure they want the truth. Because a lot of time the truth ain't so pretty. I am so angry today. It is beginning to disipate (sp?) some, but.......Maybe tomorrow will be better. I don't know. I just know that right now? Life is soooo unfair at times!!!

  4. Kaki, I read this the day you posted it, and I've been thinking of you ever since. It's hard to know what to say -- it is so awful and unfair. Don't blame you at all for being pissed. I appreciate your honesty, too, especially since you're right that people often don't want to hear the hard stuff. I wish so much you weren't going through this, and I admire the way you keep finding joy in spite of everything, judging from your FB postings (which I always enjoy). Would you please give serious thought to what you need most now from friends? I know there are lots of us lifting you up in our hearts and minds, and I'd love to offer hands, too, if they could be helpful in any way.