Kathy's Story

 
     
      More than a year ago I discovered Lynne's page and have been moved by the stories that have been shared.  It is so difficult to deal with a chronic illness that your family and friends (and even yourself) do not fully understand.  The stories provide inspiration to "hang-in-there" when you might feel like giving up.  Therefore, I decided it was time to share my story.

        My name is Kathy and I am 47 years old.  I have a wonderful, supportive husband and a beautiful, energetic 13 year old daughter.  I count my blessings to have a number of supportive family and friends even though there are others who think I am a hypochondriac because I appear so healthy.

        In January of 1996, my husband referred me to an article in our local newspaper entitled, "How Dry I am."  It made reference to a seminar that I chose to attend.  After hearing the explanation of symptoms I became convinced I had Sjogren's Syndrome.  At the time we were without insurance so another year went by before I was able to see a doctor about my suspicions.  My general physician suspected Lupus after he reviewed the lab results of the blood work he ordered.  He referred me to a rheumatologist who determined I did not have Lupus but confirmed one of the things I had suspected.  In January of 1997, at the age of 43, I was diagnosed with Sjogren's Syndrome, Fibromyalgia and Raynaud's Syndrome.

        Reflecting back I believe the symptoms started to become evident in my twenties if not earlier.  However, the progression of my symptoms of burning, gritty eyes, dry mouth and fatigue accelerated after the Caesarean section birth of my daughter in 1987.  The morphine that was used in my epidural to prepare for the surgery caused a horrible reaction.  My feet and legs swelled so bad it was extremely difficult to walk for several days.  Three weeks after the birth my energy level was so low I was concerned I was not going to survive.  What helped somewhat is my daughter started sleeping through the night after the third week making additional rest available since I was no longer "on call" 24/7.  However, I feel like I have never fully recovered from that experience.

        My eyes are so dry that I must instill artificial tears every 15-30 minutes to help prevent cornea ulcerations.  My vision gets distorted when I do extensive computer work or try to read a book.  My eyes are also very sensitive to the sun and bright lights.  My night vision has deteriorated making it dangerous for me to attempt driving after dark.  Cigarette and fireplace smoke as well as perfumes (colognes, fragrant candles, etc.) or chemicals in the air cause irritation to my eyes and bronchial passages.  Don't even suggest I try to attend my daughter's softball games on windy days!  I also suffer from extreme dryness in my mouth making it impossible to eat without adding liquid to my mouth after each bite.  My nose runs every time I eat a meal or a snack so I keep tissues handy all the time.  I must keep water available to sip on regularly throughout the day.  Rarely do I sleep through the night without waking up a number of times and usually do not feel refreshed after being in bed all night.  Each time I wake up I must sip water and instill more eye drops.  In addition, I experience frequent flares of very low energy and deep gnawing aches primarily in my back but also in my extremities.  I do not tolerate medications well so I am not able to take anything that is prescribed for either condition.  Therefore, I have to totally rely on God as well as the prayers of my family and friends just to make it through each day.  I must admit there are many days when dealing with these conditions are overwhelming and I give in to feelings of hopelessness, discouragement and self-pity.  However, after once again going through the routine of denial, anger, irritability and depression I find I am able to rebound and begin coping once more.

        I am so thankful for Lynne's web site and for each of you who have shared your stories.  If for nothing else it is helpful to know we are not suffering alone.  All of us understand the daily trials of dealing with this chronic condition.  May these stories continue to be a source of courage for all who read them.  Thank you for taking the time to read my story and please feel free to e-mail me.

May God bless each of you!

Kathy in North Carolina