"What’s
Wrong with Dale?" (written by Dale Ross)
Long ago, back in the late 1980's, I developed severe and chronic
lower back pain. Most was probably due to numerous horse spills,
sports-type injuries, motorcycle racing, lifting heavy objects, plus
many other pretty "tomboyish" activities and stupid thrills! Wow, if
I had only known what was in store for me!
I gradually progressed to being in incredible, chronic
pain and was desperate for some type of relief. Ken, my husband, and
I went to numerous orthopedics and neurologists, only to find
doctors who would say "Tell me what is really wrong" like I had a
mental problem. Others told me I just needed to live with the pain.
How many 28 year olds would accept this diagnosis?? I must admit Ken
tried to talk me out of any type surgery, but he was not the one in
constant pain. I should have listened to my husband!! We finally
found a neurosurgeon who said he could help me. I had 2 ruptured
discs, L-4 & L-5. After several scans, including MRI's and a
myelogram [from
Online Medical Dictionary:
A diagnostic procedure where a radiopaque contrast dye is
injected into the spinal canal. X-rays are then performed which
reveal the anatomy of the spinal canal. Myelograms can be used to
diagnose disk disease, spinal stenosis and tumours of the spinal
canal. MRI and CT scanning have largely displaced the use of this
more invasive test.]
(which in my opinion could just about kill anyone) the surgery went
as scheduled. I was told I would be much better in 3-4 months with
therapy. Wrong!!
After about 3 years of again constant, chronic pain, I
was told I had a build-up of scar tissue in that area the surgery
had been done and would need epidural steroid injections to reduce
the scar tissue. This would be done by an anesthesiologist in a
series of 3 treatments administered into the epidural space
surrounding my spine. I went through 3 of these treatments, which
hurt like heck! It was not a very pleasant experience to go through,
but once again I was at the end of my rope to end or ease the pain.
After going through the 3 treatments I noticed little to no relief.
Two days later after the last treatment ,we were out
quite a bit that particular day on the farm, when I noticed I had a
very bad headache and light sensitivity. At approximately 7 pm that
evening, we grilled steaks & within 30 minutes I
became violently ill.
I went into the restroom and began to vomit several times. Ken asked
me if I was OK, and opened the door to find me trying to climb the
walls! He just about flipped out, not knowing what could be wrong
with me. We are in a rural area and, at the time, did not have a 911
system. He got a neighbor to help hold me in the seat, and they
proceeded to drive me to the nearest hospital. They were afraid I
might try to jump out as I was like a person “gone mad”.
I vomited all the way to the hospital, and the last I
remember is being put in a wheelchair. I remembered nothing for at
least a week. They first told Ken I had a stroke and would probably
not survive. Then, after drawing spinal fluid, the diagnosis turned
to spinal meningitis. With a temp of 107, I also had encephalitis,
which is swelling of the brain. Things sure did not look good for
me. My husband was told if I did somehow survive, I would most
likely have some type of brain damage. After a week or so, a nurse
was washing my face when I opened my eyes. She nearly had a heart
attack! I slowly regained my health, seeming to have no major
neurological problems. When we asked the question of how bacteria
could have gotten in my spine all the doctors either left or changed
the subject. To this day I will forever believe this was the start
of the Relapsing Polychondritis.
After several months of recovering from this near death
experience, I began to develop severe sinus type problems. My nose
would swell, hurt, and turn red. My ENT at the time said it was a
sinus infection, but it did not respond to the antibiotics. As soon
as I seemed to get better, my left ear did almost the same thing,
just much more painful. Ken and I would sit in the floor and cry,
the pain was so bad. We went from doctor to doctor, had private
insurance with a very high deductible (meeting it several years in a
row + our portion we had to pay). I went to a whole group of ENT's
that said I had been bitten by a spider!! My ear became very
swollen, enlarged, red, and oh, ever so painful.
As time continued to go by, this Relapsing
Polychondritis (or RP, as it is called) continued to destroy
cartilage and connective tissue throughout my body. I began to have
breathing problems leading to panic attacks, plus the horrible ear
pain continued to worsen. Desperate, crying and getting more broke
with each doctor visit, I walked into a small town local doctor who
took one look at me and immediately sent me to another doctor, a
dermatologist who knew exactly what was wrong. He set up an
appointment at Emory University teaching hospital in Atlanta, Ga.
for the very next week. It was the dermatology dept. at Emory who
diagnosed me, with no doubt, as having RP.
Besides the nose, ear and painful joints all over, now
it was discovered it had invaded my aortic heart valve. After seeing
rheumatologists, cardiologists and every other specialist you could
think of, I was told my heart valve was leaking pretty badly,
causing me to become extremely tired and weak. I would need heart
surgery for an artificial aortic heart valve. We set it all up for
January 1999, however I ended up with 911 en route to Emory in
November 1998 after almost going into heart failure. My blood
pressure on the way in the ambulance was 20/40! My daughter at the
time was 2 years old. This was one of the toughest times in my life.
I cried, prayed, did everything I could think of! I was absolutely
terrified at this point. I went into the hospital at Emory on a
Thursday, and they had to wait until Tuesday to stabilize me before
the surgery could take place. I was fortunate in that I had the very
best doctors in rheumatology, cardiology and heart surgery they had
to offer. I thought for sure I would not make it this time either,
and terribly missed most of my family since I was 2-3 hours away.
Well, I made it, however it was a great turning point
or revelation of my life. I had a loving husband who was there most
of the time and a beautiful little angel who needed her Mom!
No sooner than replacing the heart valve, I began to
have many eye problems from this terrible disease. I developed an
extremely painful eye condition called iritis (or uveitis). The eye,
or eyes in my case, become unbearably painful, inflamed, and blood
red. Vision is limited. I was treated with several drops, one was a
dilating drop which helps the pain by not letting as much light in.
Three years ago, I almost lost my eyesight, wore dark glasses,
carried a cane. At that time, I also developed Sweet’s Syndrome, a
rare and very painful skin condition.
I also had been on very high doses of Prednisone which
lead to weight gain of 80 pounds over a 10 year period. This past
August 2003, my husband and I set out to lose weight, mainly for his
arthritic knee, so I joined him. To date, as of May 2004, I have
lost 60 pounds! I am almost back to my former body weight from 20
years ago!
I have always let Emory University photograph really
bad things I come in with. I have hopes that pictures of these
things may help others to NOT go through what many of us RP
sufferer's have. I have so many hospital "horror stories" as well as
miracles too. In my opinion, doctors are not God, and you must
always question what is done to you. We, as patients, do not have to
accept what we do not like at the hospitals, and doctors are
employed by us!
My most recent near death experience was in March 2004.
With no warning, I realized I was very ill. I called 911 was taken
to the ER. My husband was out of town on business. I was alone until
friends heard and came to be with me. I developed pneumonia which
lead to sepsis. I spent almost 2 weeks in ICU this time, was allowed
to get up while "out of it", resulting in 2 falls. Two months ago,
and still in terrible pain, mainly now due to the falls. I almost
fractured my femur and have had horrible lower back pain. Therapy
seems to be helping - it will just take time.
This illness has really taken a toll on my body, but
hopefully I can return to my walks and gain my strength back.
Imagine, one day you can feel somewhat normal in appearance,
physically and mentally, and the next several days totally wiped out
and in bed all day. It's not feeling sorry for yourself, but more
like hoping you were "normal" for longer periods of time. Dale looks
fine most of the time to people - I can "act" good enough. Any
chronic illness does from time to time, cause some form of
depression whether you will admit it or not!
God is good. I would challenge anyone who has taken a
walk like me to say there is no God!! I am still here! I never say
"What's next"? Thanks to all my dear friends who have been there for
me. One friend who is battling cancer herself, told me I have the
lives of a herd of cats!!
Sincerely,
Dale Ross |
