Aging with Crohn’s Disease

The many looks of Glenn Frey

The many looks of Glenn Frey

      The picture above is from a Fitness Campaign featuring Eagles co-founder Glenn Frey who passed away last week at the tragic young age of 67.  This is UNRELATED to the main topic of this Blog Post but since I presently can’t type without severe pain due to a shoulder injury for which I am undergoing surgery on Monday, January 25, 2016, I wanted to acknowledge it before it was too late. I was a huge Eagles fan and even moved out to California after reading about the charged creative and personal lifestyles they were leading.  I had the privilege of giving Glenn Frey this framed poster after too many people made fun of me for hanging it on the wall in my office. I reached out to a very well-connected Hollywood friend of mine to offer it up to Glenn.  I never thought he’d actually be contacted but a few days later Glenn Frey CALLED ME and said he wanted it.  I guess it captured memories of a certain time in his life which he cherished.  After all he and the Eagles had done for me, it felt good doing something for him. As a songwriter I always thought he and Don Henley formed a uniquely formidable team very much like Paul McCartney and John Lennon.  They complimented each other’s style in a manner which balanced out the song and gave it meaning to so many people in so many ways.  I don’t like reading about how celerity heroes of mine died.  I choose to celebrate and remember how they lived.  Glenn Frey knew how to live and my heartfelt sympathies go to his family, friends and band-mates. 

      In my opinion, the highest quality song ever co-written by Glenn Frey with Don Henley was “Lyin’ Eyes.”  Here’s 3 verses which whenever I hear them make me stop and “absorb” them as if they are referring to someone from my past or maybe even me playing one the song’s roles.  It happens every time and therein lies the greatness of Glenn Frey.  Peace, brother.

She gets up and pours herself a strong one,

And stares out at the stars up in the sky.    

Another night, it’s gonna be a long one.

She draws the shade and hangs her head to cry.

**********************************************

She wonders how it ever got this crazy.

She thinks about a boy she knew in school.

Did she get tired or did she just get lazy?

She’s so far gone she feels just like a fool.

**********************************************

My oh my, you sure know how to arrange things.

You set it up so well, so carefully.

Ain’t it funny how your new life didn’t change things?

You’re still the same old girl you used to be.

Why I haven’t been writing

      I haven’t been able to write much lately because in June, 2015, I injured my right shoulder while swimming.  Swimming had become my stress reducer ever since I had Left Hip Replacement surgery in early 2014 and had become the primary Caregiver for my 80-year-old Mom who has a variety of physical challenges commensurate with her age including a failed Double Knee Replacement which has left her with a great deal of pain and difficulties walking. Despite being “Disabled” from my Crohn’s Disease, I was finally improving my physical conditioning, safely and slowly through swimming, to the point where I felt comfortable challenging myself each day to swim further and longer.  In my youth, more specifically pre-Crohn’s Disease when I was almost 21 (which, incidentally, wasn’t a very good year), relying on my body to go faster and longer was fantastic.  But once I was diagnosed with an incurable autoimmune disease, I inevitably lost all positive momentum toward achieving my fitness goals because something medically serious always seemed to come up which required byzantine solutions like surgery or chemotherapy after brutally long diagnostic journeys.

      That’s exactly what happened with this most recent injury and it got even more bizarre when the painful symptoms in my right shoulder and right biceps and triceps muscles suddenly began occurring in my left shoulder and I wasn’t even using my left shoulder at the time.  Long story short, after many MRIs, CTs and consultations with medical specialists most people don’t know exist, such as a Physiatrist, on Monday, January 25, 2016, I am undergoing arthroscopic surgery on my right shoulder to repair a torn biceps tendon, a torn Rotator Cuff and an AC Joint which is so inflamed it is “bone-on-bone.”      

       My surgeon is incredibly impressive in not just his credentials but also in the way he treats his patients.  I’m very lucky to have survived this 6-month extremely painful diagnostic journey with my sanity in-tact, a specific diagnosis to-boot and with a surgeon repairing me so I can eventually resume doing some of the physical activities I love such as swimming.  That said, it is quite possible I will need this same surgery on my left shoulder after I recuperate but it’s also possible my left shoulder hurts me because it has taken over for the right shoulder and working double-time.   Some patients would look at that long road to recovery and get bummed out, but not me.  With the very real possibility of receiving no diagnosis at all, I’ll take the long road to recovery every time.  I think it’s all how you look at it because if you’ve never had severe pain and been told by well-respected doctors “there’s nothing wrong with you” or “I can’t help you,” you’d never know how desperate and hopeless the sound of those phrases can make you feel.

      Ironically, sitting down and typing seems to trigger the worst shoulder pain.  This is why I’ve had to abandon updating this Blog routinely or commenting on current issues regarding healthcare, Crohn’s Disease and managing chronic disease.  Please trust I will get back to this and to the several other projects I have in the works with my Charity, the Crohn’s Disease Warrior Patrol.  Chief among those projects is the Patient-driven Documentary on Inflammatory Bowel Disease (IBD) for which I’ve been interviewing patients and doctors over the past 2 years.  As I’ve gotten accustomed to my body betraying me, I’ve learned how to minimize its effects just as if a song or location I desired for a film fell through because the licensing rate required was too high.  That’s life with Crohn’s Disease and as I age my body seems to be affected more by its “peripheral effects” than by its more traditional gastrointestinal effects.  In some ways this is more disabling because I wind up seeing other medical specialists and many refuse to treat me as a Crohn’s Disease patient requiring their services and instead they treat me like any other patient.  In those situations, I speak up loudly, but respectfully, because the inflammatory component of Crohn’s Disease could change the diagnosis, treatment and care.

      Living with an autoimmune disease is about always being open to learning about your body and how it reacts under different circumstances.  It’s bothered me I’ve been unable to be productive over the past six (6) months due to the INTENSE pain in my shoulders.  But I am very confident my surgeon will do all that is possible to repair it and physical rehabilitation will require my undivided attention and finally give me something to do which will improve my health. As soon as I can sit down and type without seeing STARS from the pain, I will go back to regularly updating this Blog.  Thank you for your patience.

Please leave any constructive comments.  Thank you.

Please leave any constructive comments. Thank you.

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