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Terry's Story
My name is Terry; I’m 48 years old and live in Shawnee, Ks.
I am diagnosed with:
Antiphospholipid syndrome, Systemic Lupus Erythematosus with (Raynaud's
and Sjogren's syndromes), Secondary Fibromyalgia, AIED with
sensorial/progressive hearing loss, chronic tinnitus, hyperacusis,
osteoporosis, osteoarthritis, Vitamin D deficiency and a depressive
disorder.
10 yrs ago; I had 3 DVT (deep vein thrombosis 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 my gall bladder removed 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 was always able to
function normal with the help of a hearing aid. In February of 2007 I
began having daily headaches, growing noises. 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 were. I
was not functioning very well at work and was beginning to have
problems. 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 the
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 began to research my mystery diagnosis while waiting for new test
results. I read how similar all my symptoms were and began questioning
my doctors and my family. After digging into some blood lines – I found
Tuberculosis and Lupus diseases in family that had past away. One cousin
was till battling with Lupus. I also found arthrosclerosis on both
sides of my family with no real explanation for its progression. I
began to recognize very clearly what was going on and took info back to
all my doctor appointments.
I was eventually diagnosed (after 10 years of mid-diagnosis) with
Systemic Lupus Erythematosus and Fibromyalgia along with the
Antiphospholipid Syndrome. Long story short --- after reduced hours and
responsibilities I became unable to perform my required duties and
ultimately ended up on short-term disability. I went from working 5-6
days a week, 12 hr days to not being able to work at all.
I am on Warafin, Azathioprine, Amitryptylan, pantrazole, Vit D,
Simvistatin, Metroprolol, Prednisone, 3 types pain pills as needed, eye
drops and steroid creams. The side affects of some of the meds Im on is
enough to depress and make you paranoid. It can make you feel like a
ticking “time bomb”
My world is a “bubble” I rely on close captioning, email or lip reading
for my communication. I used to love music and pour my soul into it – I
am so deeply saddened that I cannot enjoy this past time any more. I
still hear the sounds in my head but cannot understand the sounds heard
today.
I am reminded to take meds and mail this or that etc with all my notes
and post it’s around the house. I forget things so easy. I have been
robbed of my career, life and family dreams.
My pain, swelling and fatigue have no boundaries and I hide it as much
as I can. I am in a pleurisy flare now as I type this. My 2 pages of
symptoms are overwhelming. I depend on my husband to be my primary
communicator and caregiver. This has all weighed so heavy on him yet he
does not complain about it. His unconditional love is very moving. My 2
sons whom I love dearly share and converse about our happy times
together as a family. I cherish those conversations and moments so very
much.
I mourn for my old life and my old body. If I had been diagnosed early
I might have been able to hear today. It is so critical that awareness
is campaigned across the seas… Let every Dr, Nurse, Hospital, Clinic,
School and Dentist be aware of our silent killers and their symptoms.
We live in a society where pain is recognized and sympathized if it’s
visual.
The blood tests are the easy parts…. I plan to do whatever I can to
bring awareness about all the diseases I have. If I can save one life or
save one persons hearing… .. Maybe, this is my destiny and where my
faith has led me – my purpose for that 2nd chance in life. I
am keeping my head up and my faith strong and eager to share my story to
help educate others.
With my family and my savior as my strength – I cherish each day and
find purpose.
Terry
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