Hello, my name is Christine.  Welcome to My Story.  If I can make even one day of your suffering a little less painful as a result of reading this story, I will feel deeply gratified.  

     The day I discovered Lynne's web site and read some of the stories contributed by other sufferers of this disease, I finished reading with tears streaming down my face, and  with empathy for the people who have been brave enough to share their pain.  The relief that came to me in waves as I began to realise I was not alone in this suffering I will never forget.

     A pre-occupation and self centredness has permeated my life for the last year.  I am just now breaking through the fog and pain and realising that the quality of my life is not so much to do with how to cope with each day, but how to look at my life in a different and more rewarding way.  My perceptions have been distorted by the pain and an unrelenting myriad of symptoms, and I am working my way through these symptoms one by one with the help of my wonderful General Practioner.  Without his understanding, tolerance and complete faith in my ability to work a lot of things out myself, I believe I may not have made it to this much better place in my life.

     I now believe in hindsight that the sequence of events that led to my present illness started a long time ago in 1972, after the birth of our first daughter.  Six weeks after the birth I developed a severe and debilitating bowel disorder which went undiagnosed by the then medical profession.  Previous to this I had not experienced any problems healthwise.  In 1975 our second daughter was born and this time I was reasonably well, although suffering from a number of food allergies i.e. wheat bran and lactose intolerance.  In the winter of 1978 our youngest daughter and I caught a flu virus.  I went on to become completely weak and incapacitated to the point I had to give up work for 6 months and this time my condition was labelled ME (myalgic encephalomylitis), which is now commonly known as 'Viral Fatigue Syndrome'.  Most of my immune problems have, I believe stemmed from this time.  I have suffered from hayfever and sinus problems for years and have been a severe migraine sufferer.

     Two years ago, after a very difficult time with menstrual bleeding, which I had endured for years I visited a Gyneacologist.  This doctor performed a new procedure called an 'Endometrial Ablation', which simply means removal of the uterine lining with a laser.  In my case this was successful and I had no regrowth of the lining as I am now close to menopause at 49 years of age.  The surgery has been very successful in eliminating my migraines as they appear to have been hormone related.

     During this time I was working as a Secretary/Computer operator and working in an air conditioned building.  In May 1998 I was offered a new challenge - that of Desktop Publishing for the marketing section of my company.  I was sent to do some training which took one month full time.  I was a little tired after this, however I was very enthusiastic about my new role.

     Three months later I was not so enthusiastic as the position was proving very stressful and I began to feel very irritable, frustrated and overtired all the time.  My sleep pattern was becoming erratic and I was starting to display the signs of stress.  I was feeling pain in my lower back, between my shoulder blades and neck and the glands in my neck were starting to swell rather frequently.  I thought my teeth were perhaps in need of a checkup and visited my dentist who informed me that I had TMJ problems and that was what he thought was the cause of the swelling under my ears.  He fixed my teeth and all was well for 6 months with my teeth.

     I was now visiting my General Practioner with general aches and pains all over and thought I had the flu.  He thought I had glandular fever which proved negative in the blood tests.  I spent most of last year having every test he could send me for.  CAT scans, MRI scans, blood tests, IVP kidney test (which revealed a slightly defective right kidney and a haematuria problem with skin cells present all the time in my urine).  The urologist believes I have had this problem for years and my mother confirmed this as far back as the age of 7.  I have the awful symptoms of kidney infections which show the blood and skin cells going up and down in my urine from test to test.  No one can give me an explanation to this one and it has been hard to live with.  I know by taking lots of filtered water daily it controls it to a certain extent.

     My eyes were constantly red and irritated, and had been since in the new area of my workplace.  All the potions and lotions I was given to fix them did not work and I was thoroughly frustrated.  My vision became so bad I decided to go to have my eyes checked for new glasses.  I mentioned my symptoms to the Optometrist and he gave me a referral to an Opthalmic Surgeon.  This appointment was the breakthrough.

     The surgeon gave me a Schirmers test and also put dye in my eyes to test for dryness on the front of the eye.  She said, "Christine, I believe you have Sjogren's Syndrome".  "Who is your Rheumatologist"?  I was stunned as I had never heard of the disease.  I had been to a Rheumatologist on and off for the last couple of years with bursitis and general joint aches and pains.  Apparently my eyes were as dry as eyes can get before cornial ulcers occur if left untreated.  She also told me I had a vitreous detachment in my right eye which has prematurely pulled away from the lens, leaving some scar tissue which is presently obscuring my vision in that eye.  I believe this will eventually go away as the vitreous turns more liquid as I age.  This diagnosis triggered a chain reaction.

     I went back to my Rheumatologist and she ordered a bone scan immediately, and it appeared I had three damaged vertebrae in my spine and they are in the sites I was feeling the awful pain.  I have extensive tissue damage in numerous places throughout my body.  I have a compressed ulna and median nerve in my right arm for which I am currently awaiting surgery.  My Rheumatologist told me I have Osteoarthritis and Fibromyalgia with all the relevant trigger points performing nicely for her when she examined me.  She also agreed that the Sjogren's diagnosis put a lot of symptoms together in her mind.  She actually admitted she wasn't too familiar with Sjogren's.

     Recently I went for my 6 month check up with the dentist and needed extensive repairs to 5 cavities after just 6 months.  I am now having fluoride treatments every 12 weeks and brush with a fluoride gel each night to prevent further decay.  The acid balance in my mouth is not good.

     My nose is another story and I've start to develop severe dryness and minor bleeding and soreness, that is responding to Sofradex gel applied a couple of times a day when necessary.

     I have been to an Arthritis Self Management Course recently and it has put me back on my feet physically and emotionally.  Believing that depression was something that couldn't possibly touch me because I was such an optimistic soul most of the time, it was liberating to know that it is OKAY and very NORMAL to be depressed when you are constantly in pain.  Wow I could finally let my guard down and be tearful and grumpy without feeling guilty that I was a grumpy old girl.

     The most important things I do for myself at least every second day are walk in the sunshine, be by myself, listen to relaxing music and simply appreciate nature and my family more.  No-one hurries me any more.  No-one pressures me with their needs.  I work at my own pace and I treat myself better than I ever have.  My diet has improved and with all the things I now do for ME, I believe that the quality of my life is improving day by day.

     The anti-inflammatories I was taking can take a back seat for a while, as the pain is subsiding with the increase in exercise.  Stress is something I still can't cope with and if I feel pressured I withdraw away from work for a couple of days.  This is after all an immune disorder and I am trying to educate people to understand the implications of being TOO driven.  Balance in all things is paramount and one of the most important things in my life is when my grandson rushs up to me with that beautiful little smile and arms outstretched and says "I love you Nanny".  That is one of the many wonderful things in my life.

     Take heart my fellow sufferers, whoever you are, wherever you are.  Remember to reach out and ask for help.  It's hard to humble yourself in this life, but I've found the more I ask for help the closer my friends and family are becoming.  The more independent I was, the further away and more unneeded they felt.

     Bless you all out there - we have much to be grateful for in our lives and much to live for.