(Note: No information on the pages of this web site should be considered as medical opinion(s).
My personalilty is such that I would like the cover page in
pastel pink because my calling in life is to calm others' spirit, or mind. I
have always wanted to help others since I was a child. To this day the good Lord
allows me to do this... even with a debilitating disease.
I am 43 years of age; married to a supportive husband (Sammy), who loves me
very much. I am the mother of 2 wonderful boys and a very sweet step-son named
Andy. My oldest son is 23 years of age while son #2 is 21 and #3 son is 19. They
have all left home for college and one has married.
Now about this disease. The doctors will not say this is why I have PN but I
came down with Rocky Mt. Spotted Tick Fever when I was 7 years old. That was
1964. I really did come very close to death as I topped out a fever of 106. Of
course this was from the Rocky Mt. Spotted Tick Bite.
As we now know, of course, I did live. However, I have always had pains in my
legs that felt like my bones were breaking. I would cry myself to sleep at night
as a child with this pain. My mother at a loss for words would tell me they were
just growing pains but I knew even as a child that growing pains couldn't
possibley hurt that bad. However, I would take her word and cry myself to sleep.
In 1988, I was diagnosed with Fibrositis which is now called Fibromyalgia. I
was told this was caused from an underlying cause. Guess what my underlying
cause was? PERIPHERAL NEUROPATHY. I was 32 at the time.
Now let's travel up a few years to January, 1994. I noticed that my right
great toe was numb on the top; not hurting but numb. However, both of my feet
would burn and feel like I was walking on rocks after I would get off work or if
I had been on my feet all day.
I had gotten my LPN nursing license in September, 1992, and had began working
as a mental health nurse specializing in drug & alcohol addiction. Little
did I know that time was closing in on me. Soon, I would be on narcotics myself;
not as an addict but for relief so I could just walk to the bathroom.
I went to an orthopedist about my feet. They X-rayed them and said I had lost
the fatty pads to protect my feet, and that I had heel spurs. They made no
mention of PN at this time, 1994.
I tried working in the hospital medical surgical floor. This called for
working on my feet 12 hours straight. Thus, I would go home and wrap both feet
in ace bandages due to the pain.
Did I go back to the doctor? No, of course not because he mentioned that I
may have some kind of neuropathy and I WOULD HAVE NO PART OF THAT!! ( DENIAL).
So, I waited a few more years...waiting on this nightmare to end which it did
not.
September, 1996, I decided to let my Orthopedist do foot surgery on my right
foot for Tarsel Tunnel Syndrome. At this point I still had not had an EMG. I had
cancelled the first test in 1994! I was not having that! (Being Humble was on
the way!).
After the surgery, I never recovered from the pain. Actually, it doubled the
pain. A doctor at another pain clinic called this weird disease RSS ( Reflex
Sympathetic Syndrome).
Now the problems are mounting aren't they? So are my nerves. My marriage by
this time is the pits because I am irritable, crying all the time and I don't
feel like walking or driving. My husband as you recall is handicapped (legally
blind) and can't drive. He is thinking I don't want to drive him around. But
this is so untrue, and Dear God what do I do!?
The depression mounted with each day of pain. My two sons just thought Mom
was a hypochondriac!!! My step son didn't know any of this at the time. He does
now though along with my sons, and they are much more supportive.
Anyway, back to the nightmare. I was tired of going from doctor to doctor
getting all kinds of diagnosis from bone spurs, to RSD, to Fibromyalgia, etc.
Yes I do have RSD in my right foot due to the surgery. This can happen from that
type of surgery, but did I know that going into surgery? NO !! Of course not.
But I found out later. And yes, I do have Fibromyalgia, since 1988. But what
else was causing this burning, stinging, stabbing, throbbing, blue, red, hot
FEET!!!?
Thank God for one doctor who led me in the right direction after 20+ visits.
I finally had an EMG. Actually, I ended up having three EMG's.
The first one turned out negative for any problems. I feel the freedom to say
I don't believe that was accurate and true. Four months later, by yet a
different doctor, I had a Sympathetic Block and an EMG the same day. This showed
Mononeuropathy which means damage to one or 2 nerves. And yes I will always have
RSD, Fibromylagia and PN. But I was not satisfied yet. I was now on Oxycotin 3
times a day along with Neurontin and many other drugs.
I didn't think I had to live this way so I was sent by my Sweet
Rheumatologist to the best Neurologist in the World as far as I'm concerned.
Well, make that 2 of the best; a Dr. Shin Oh & a Dr. Gwen Claussen at the
Kirklin Clinic at UAB Hospital in Birmingham, Al. Dr. Oh did a third EMG on me
which showed severe nerve damage and definite Peripheral Neuropathy.
Now I'm scheduled to have a nerve biopsy to my right sural ankle nerve. My
final diagnosis was Sensory Axonal Diabetic Neuropathy. The irony is I do not
have Diabetes. This has been checked out by 2 five-hour tolerance tests.
Next, I went to the medical library in UAB and found an article stating that
Rocky Mountain Spotted Tick Fever may cause nerve damage and possible
neruopathies of some types 15 to 30 years down the road.
Even though the doctors say they don't know the cause of my PN, I believe me
and the Lord above know. I am at peace with that now but I was not at first.
When they first told me of the PN, my husband and I had to move closer to the
city from our 30 acres and our new home to a small apartment in the city. When
we got there, I unpacked then climbed in the bed, put the covers over my head
and slept the most part of the next year. I only got out of bed to cook my
huband's supper and go to the doctor.
The rest of the time I stayed in an unrelenting place where all I felt was
physical and mental pain and anguish. I really did want to die. I was 42 at the
time and I could not see a life of nothing but pain and misery ahead of me.
Let me tell you today that God is good and He will not leave us or forsake
us. I know and I knew that much even while sleeping under the cover. After that
year, my husband said let's move. He told me to go and pick out the apartment of
my choice and boy did I do that! We both love it very much
This new beginning for me has lots of windows, love, God's Grace, and
Forgiveness. I still have pain but I don't have the mental pain anymore. The
move to a bright cheerful home and realizing that even if I might go cripple
someday (thay's only if) then I have alot of living and loving to do right now
while I can.
I believe just maybe I won't have to lose my ability to walk. The doctors say
I probably will go cripple but my God says His Grace is Sufficient for me.
I didn't just snap out of this depression. I had a very close friend named
Vesta praying for me. I believe God heard her prayers and mine to heal my mind
from the fear and torment of losing my feeling in my feet, and being crippled.
Oh, the article I found...I plan on giving it to my Neurologist in July, my
next visit just so they can research for others.
When I went to find a support group in Birmingham, there wasn't one so I
contacted The Neuropathy Association in New York, NY. They helped me start a
Birmingham Neuropathy Support Group. Our first meeting was held on March 2,2000.
My life has turned around to have the meaning I always knew I was called to
do and that was to help others find the peace of mind that I have. My nursing
license is on inactive status now, and I am receiving SSDI and I'm proud of it.
God Bless. I hoped I helped someone somewhere.
Aunt Boo (Also Known As)
Always consult yor doctor before trying any treatment or medication.)...
Debbie Bajalia, LPN
Support Group Leader
Birmingham, Al.
E-mail: aunteboo@bellsouth.net
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