Our Journey

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SLE Handout on Health

About Lupus:
Lupus Guide Booklet

Raynaud's Phenomenon

Sjogren's Syndrome

OUR JOURNEY
My Story

My name is Terry and this is My Story:
(Note to the reader: Fairly lengthy, but worth the read)
I am diagnosed with:

Antiphosphilipid syndrome, Systemic Lupus Erythematosis with (Raynaud's and Sjorens syndromes), Secondary Fibromyalgia, AIED with sensoral/progressive hearing loss, chronic tinnitus (8-9 tones), hyperacusis, osteoporosis, osteoarthritis, Vitamin D defiency and a depressive disorder.

10 yrs ago; I had 3 DVT (deep vein trombosis or better known as blood clots) and nearly lost my foot. Emergency angiogram, angioplasty and stent placement saved my life. I was in intensive care for a week on Urakanese therapy to dissolve the clots. I literally saw death and prayed with the chaplain. I was told that since I was so young that the only explanation could be that they were caused from smoking.

In late 1999 the stent failed as I was taken off warafin therapy and they had to do another emergency angioplasty and open the stent with a balloon. I was then placed back on warafin for the remainder of my life. My INR (blood clotting rate – or better known as INR/Protime) has to be 3-3.5

Over the next 3 yrs I lost all my teeth (regardless of all the root canals to save them) with no explanation, I went thru early menopause taking away my chance of ever having a daughter But, God gave me 2 beautiful daughter in laws and 3 perfect grandchildren. So, I am blessed. I had mygall bladder removed (10 gallstones) and began having issues with my eyes and throat all with no explanations. I became addicted to cough drops trying to keep my throat moistened. I went from perfect vision to needing bi-focal and eye drops 4 times a day.

I have had hearing problems since I was about 20 but have always been able to function normal with

Me before being diagnosed with Lupus

the help of a hearing aid. In February of 2007, I began having daily headaches and growing noises in my ears. I became disoriented, confused, unable to sleep, developed a rash (I honestly thought I was not clean enough and tried to scrub it off daily) I was frightened, sad and my pain began to control my life.

I went for a new hearing evaluation to see how bad things really was. I was not functioning very well at work. I was referred to an ENT specialist. I was very fortunate this Dr picked up on the blood clotting problems and ordered the appropriate blood work and confirmed his suspicion of APS. He explained how APS (Antiphosphilipid Syndrome) autoimmune disease was robbing my hearing. He then referred me to a Rheumatologist for further evaluation. At this time I was losing time from work, hardly able to walk, I was afraid to sleep for fear I would not wake up. I could not communicate clearly and it was frustrating for coworkers and leaders.

I went to see the Rheumatologist and he did a thorough review of my paperwork, doctors notes from the ENT and did an examination. He then ordered

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