I Want My Life Back

I've always been active; living life to the fullest.  I work hard and play hard. Nothing brings me more pleasure than working in the yard, spending time with my friends and family and doing for others.  My motto has always been, if  I am tired, I push harder, if I'm not feeling up to par on any given day, I keep going.  I have always loved the outdoors; gardening, fishing, white water rafting, water skiing and traveling.  Give me the choice of a day outdoors or a shopping trip, I'll choose outdoor activities any day.

My active life as I once knew it took a dramatic 360 degree turn three months ago.  Standing graveside during my Uncle's funeral, was the beginning of my world being turned upside down. The most excruciating pain that I think I have ever experienced hit me in the center of my chest about the time the military officer began to play taps.  The longer I stood,  the worse the pain escalated.  If I had not known better, I would have thought I was having a heart attack.  The last thing I wanted was to draw attention to myself, so I leaned onto a relative and whispered that I was feeling a little light headed. As the service ended, I quickly made it to the car.  It took about 30 mins. for the pain to subside.

After this first attack, the symptoms became more frequent so I finally gave in and made an appointment to see my doctor. He suspected stomach ulcer and put me on medication to treat my symptoms.  I felt well enough to be travel on vacation to Colorado and remained pain free.

A few weeks after my vacation, the pain returned and intensified.  Even though I had my gallbladder removed last September, I began to feel the same "gallbladder attack" pain  but the pain radiated through to my back shoulder blade as if a spear was being shoved into my back.   The spasm-like pain feels like someone has your chest in a vice grip and squeezing it to the max.  I spent three days in pain pretty much confined to  the sofa,  just my 90 pound dog and me; until I couldn't fight it another minute.  On a Sunday afternoon, I went to the ER.  After, EKG, xrays and blood work, they had a good idea what was going on and were finally able to stop the pain.  The ER doctor was a soft spoken, caring, man who took the time to explain to me, in depth, his suspicion. The diagnosis was Sphincter of Oddi Dysfunction (SOD); a dangerous condition affecting a valve leading from pancreas and biliary tree.  It is found in mostly women after gallbladder removal. Depending on  SOD I, II or III, symptoms and severity of the disorder vary with no drug available to treat the specific condition.  Surgery is extremely risky and is successful only in about 50% of patients and more often than not causes acute pancreatitis. It's a damned if you do and damned if you don't scenario.   Pain is completely off the pain chart. As a nurse told me, women often say that child birth doesn't hold a candle to the pain.  I've always had a high tolerance for pain, but this  pain stops you in your tracks.  You cannot work through it. You have to lie down.

 

As I await my appointment to a SOD specialist at the University of Alabama Birmingham, a teaching hospital that has received a grant for research of SOD,  I live on a day-to-day basis; sometimes on an hour-to-hour basis; always fearing that an attack will begin.  The anti-spasm drug works only sporadically so my world as I once knew it is no more.   One of the triggers of an attack is on exertion.  No longer can I spend hours working in the yard, taking a walk or playing with fetch with my puppy  in the back yard.  My business has suffered.

 

If you have cancer, heart condition or other disease, people can relate.  Society understands tangible diseases like cancer and heart disease. Chronic or rare debilitating pain conditions; society is less accepting.  Friends try but can't understand that if you turn down invitations, it's because you are having one of your high pain days when you can do no more than remain on the sofa drawn up in a fetal position until the pain subsides.  You soon begin to notice that invitations are becoming less frequent.  I'm not a complainer so if anyone asks how I am coping rather than boring them with more information than they really want to know, I just say that I have my good days and bad days, and leave it at that. 

 

I want my life back.  I want to wake up in the morning and know that I'm going to be able complete my daily tasks.  I want know that when I make a date to meet friends for lunch or appointments with  clients  that I can keep the appointment.  I want to be able to plan a trip to the beach and make plans for the future.  I want to play fetch and run and play with my dog, Baylie, without triggering an attack.  I want to be able to complete simple tasks like cleaning the house or working in the yard without having to stop in the middle and lie down when the pain hits.  I believe that if something is wrong, you fix it and move on.  I want to be "fixed".  I have no fear of surgery to correct an illness, but when you have been given no concrete hope that surgery will "fix" you,  a wave of hopelessness for a better quality of life starts to slip into your mind and the tears begin to flow.  I see people going on with their daily lives and doing the things that bring them joy and no matter how hard I try, a wave of sorrow flows over me as I wonder will that ever again be me.
 

Chronic pain sufferers and those suffering with "non-tangible" disorders or diseases are often left to suffer in silence for fear of stereotypical remarks and assumptions from society; leading to even more feelings of isolation and hopelessness.  Until it affects you, you will never understand.  I admit, I had no concept of debilitating pain.  If I heard someone complain of pain, I would think to myself, just work through it and keep going.   Yes, I also succumbed to society's stereotypical response to something I could not relate.

For now, I am counting the days until August 22 to see the specialist who I want to "fix" me.  I pray that he has a good bedside manner and doesn't disappoint me.  I pray that my condition can be kept in check with a better choice of medication than I am currently taking to stop the pain and spasms.  Until then, I'll suffer alone when the days become unbearable.     The days of the old, free of pain, happy go lucky, fun loving me, I will reserve for work, family and friends.  I will thank God for my good days and will learn to cope with the bad.  I now know what it means to say, "if you don't have your health, you have nothing".   I will try and be more patient when I'm around people who haven't figured that out.