BENEFITING: SPONDYLITIS ASSOCIATION OF AMERICA
My name is Jacquie Gregor I am 50 years old and diagnosed with A.S. in 2007. Let me begin with my life before the diagnosis. I was a ‘beauty pageant contestant’ and model in my teens, a mother at the age of 20, a mountain hiker, a fitness coach, all of this with a goal to hike the Grand Canyon on my 50th birthday. The picture of me on the mountain (sitting down) is one of the last times I was able to climb that summit(Not the Grand Canyon). That is a special place, it is where my Husband proposed to me 12 years ago. He said “look down this mountain and see all we have gone through to get here”. I now look at it from below and see how much more courage I need to live my life each and every day!
I now begin my story living with A.S.
This Diagnosis came after many years of neck pain and debilitating migraines. I even worked for a Chiropractor to be able to afford constant adjustments and therapies. I remember seeing my breast bone and ribs turn purple about 15 years ago, I laughed and said to myself how special I am to have purple joints, after all this is my favorite color. Well… the purple areas began to appear more and more with increasing pain. I was married to my friend and soul mate in May, 2000. Upon returning from our honeymoon I became VERY ill. I could not walk even 2 feet without collapsing. My oxygen saturation level droped to 77. The doctor told my Husband “get your affairs in order, she needs a heart lung transplant, NOW!” This began what we now know as my A.S. journey. I recovered from breathing issues, with the use of a rescue inhaller and a bronical dialator, I could breathe again, or so I thought!
My body became weaker and my perreferal joints continued to hurt every day. My Mother became ill and needed in home care that became a long hospice care period.
While taking care of Mom and with the stress and little sleep the pain never went away. I noticed a large lump on my sternocavicular joint, it worried Mom and made her ‘comfort care’ more difficult, I laughed and told her it was a backward ‘Quasi Modo’ bump. This took some of the urgency away in her mind. My Mom died in 2005, before she died I promised her to have my ‘Quasi’ bump ‘looked at’. I received so many diagnosis ranging from ‘possible cancer’ to ‘being all in my head’. Durring this time I continued to have chronic Iritis issues. I was refered to an Opthamologist, he told me “you have to have an autoimmune disease, it will manifest eventually”. In 2006 I saw a new Chirpopractor, he manually adjusted my neck and broke off a piece of “calcificated bone”. This gave way to awful pain, the only relief I got was when I put my arm over my head. I went to Urgent care where they refered me to a Rhumetologist. I was at the end of my pain tollerance (so I thought, there have been worse times since), I made an appointment. After months of medical tests and treatments it was confirmed I have “A - Typical Ankylosing Spondylitis”(I do not test positive). What? I was in denial, I didn’t research the disease or talk about it. The less I knew the better I could beat this thing! This cannot be happening, I want to hike the Grand Canyon!
I began a treatment of Humeria, Methotrexate, Meloxicam, Folic Acid and a pain relief medication. The Humeria gave me more migraines and encephalitis, we discontinued the Humeria and tried Enbrel.
With the Enbrel my symptoms became worse. Finally, a “new” TNF blocker was introduced and I am now on all of the other listed medications including Simponi. I thought this was my answer, until March 2011 when I fractured my fibula bone due to tendons being wrapped around the ankle. I had surgery and several months of casts and treatment. NO I did not get to hike the Grand Canyon with my Husband for my 50th birthday. Instead I had a party to raise money and awareness for A.S. I began researching A.S. and I accept that I am one of the faces with this awful disease. I became a support group leader in Tucson, Arizona in December of 2011. I appreciate the S.A.A. and all they do to help us and the communites to become aware of this terrible disease.
I am not easily defeated, I WILL continue my fight to live a good and happy life in spite of this disease and to help others in their fight to understand and live with this awful disease.