How and when did you get RSD?
When I was 25
years old I was a manager of a Toys R Us Store. I was placing a ten
speed bicycle on a stock room shelf. I was about 20 feet up on the
ladder I was using. While climbing, I fell backwards while still
holding onto the bicycle. While falling, my left arm was holding much
of the bike and I tore my left rotator cuff. I hit the stock room
floor so hard that many people in the surrounding area said they felt
a thud when I hit. Witnesses immediately called 911 assuming that I
had a spinal injury. I do recall not having any feeling from the
waist down for a brief time. I was taken to the nearest Trauma
Center which was at a University Hospital. The doctor treating me was
amazed that I did not have any injury to my spine. When the doctor
came in to tell me the results of all the x-rays that they had done,
he said it in a very soft, but monotone way that “You didn’t
break any bones, but one day you may wish you had.” I did not
understand it then, what he must have meant by that, but I guess he
was right. But I had broken many bones in the past, and they just
healed and that was it. How much worse could a torn rotator cuff be,
I wondered. After a while of being out of work and getting therapy,
but not feeling any better (worse, actually; much worse), I knew
something was not right. The pain was so bad, unlike anything I had
ever felt before. Why did my skin burn so bad? What was happening to
the hair on my arm? Why was it impossible to wear any shirt more than
a tank top without it feeling like I was being filleted? My wife
couldn’t even touch me without me screaming. The doctors kept
giving me more and more pills; the insurance company kept calling me
a drug addict.
I had to go to
court for Workers Compensation to approve anything the doctors wanted
to do to help me. Workers Compensation kept saying “No” to every
test or treatment the doctors wanted to do, and then it would be
months before I would get a hearing. At the hearing, the lawyer for
the insurance company would say “Sorry, Judge, I forgot the
paperwork.” Then they would delay it more. At one hearing, the
Judge yelled at the lawyer for the insurance company “If you forget
again, you will be fined $500.” because he forgot two times in a
row. So that delayed things more. I then had surgery on the left
shoulder, to remove scar tissue. They had a lot of trouble with the
anesthesia. Right after the surgery, I knew something was really
wrong, instead of better, as the pain was worse, much worse. Then
the parade of other doctors began, from me wanting a second or third
opinion, and the insurance company sending me to doctors to prove
there was nothing wrong with me. One would say I was a drug seeker,
another would say 6 weeks of therapy. Then I was sent to a doctor who
specialized in pain medicine. At the time, I was taking Methadone
for the pain. It was so unbearable and nothing else took the edge
off, or the side effects were horrible. This pain management doctor
knew almost immediately what was wrong. She started to explain RSD.
It sounded like everything fit. It was odd because, after the fall, I
realized that this was no longer going to be the way I could work
(using my body, I mean), so I returned to college to get my degree.
In my classes for the program I was taking, one of my classmates, a
guy who like me was older, he had so many health problems and he
was out a lot for his illness. He had RSD. He would talk a lot about
it, when he was there. I admit, I thought he was faking at first. It
just seemed so unreal. He did help me quite a bit in the time that I
was first diagnosed.
After the RSD diagnosis, I was treated by a
doctor who was very aggressive with treating my pain. He would make
sure that I got whatever I needed to be comfortable. He would say “We
have to cut the pain cycle and get this under control”. He gave me
injections of a mixture of medicines and herbs into my shoulder, and
he did it a few times a week. I was getting to a place where I could
tolerate things.
But then I had a
tumor on my left foot. An odd type. On the top of my foot, like
where it arches, but the top. My family and I took a vacation after
I graduated from college and, while we were away, my foot suddenly
swelled up so bad I couldn’t tie my shoe. When we returned home, I
went to see my regular doctor and they said I chipped the bone in my
foot, and it looked like the chip was floating around and would
probably need to be removed. My mother worked for a radiologist, so
I got an immediate appointment for a bone scan. That’s when they
saw it was a tumor. It wasn’t cancer, but this type turned the
bone in the area to sponge and, if they left it, I would most likely
have lost my foot. At the time, my wife worked with a Physical
Therapist who told her that he had a friend who had a tumor that was
the same kind, and he lost his leg up to the thigh. I was definitely
going to get mine out now. The surgeon that was doing the surgery
told me that the odds were high that I would get RSD in that foot
(just from the surgery) and, since they had to remove a large chunk
of bone from my foot, that would increase the odds.
I did not care;
I wanted to keep my foot.
I woke up in the
recovery room with that familiar burning. I knew immediately what it
was. My recovery from the surgery was really hard. They did have to
take a large chunk of the bone from my foot. I had to use a walker
to get around. That was hard with a bad left arm. It was like all the
progress with my shoulder was now gone. But the same doctor that did
so much for my shoulder did the same for my foot. It was a year of
meds, more meds, and shots, but I was finally in an almost total
remission.
My family and I
settled with Workers Compensation, moved to another state and I got a
job I loved. One day, after about 3 and ½ years of almost total
bliss, I re-injured my RSD arm, but I went to a doctor who started
aggressive treatment right away and the RSD did not come back until I
came home from work one day, six months later. Apparently, I don’t
remember the next six months at all because my wife says that I came
home that day, did not even come in the house, but opened the door
and said “I am taking the dog for a walk.” She was cooking
dinner, she said, when I came back an hour and a half later crying my
eyes out because, during the walk, I got lost and couldn’t find my
way home. We lived in a condo complex, you really couldn’t get
lost. The dog realized something was wrong, and led me home. My wife
said that after that my pain was back full force, I was unable to
really speak and I couldn’t do anything at all for myself. She had
to bathe me, brush my teeth and everything. She took me to doctors
and everyone told her I was nuts. They even put me in a psychiatric
hospital. They started the whole “he is a drug addict” thing
again. Years later, at my Social Security trial, the expert witness
that the Judge called explained what happened during the walk. He
said the RSD decided to come back and it “short circuited” my
brain. I was lucky to get much of what I lost back.
Then I started
having serious issues with my heart. I would get a heart rate over
200 beats a minute. I would wake up drenched in sweat; heart racing,
pounding, and my chest would feel like there was an elephant on it.
My jaw would hurt and there would be a pain down my left arm. It was
exactly like what you see when someone on TV is having a heart
attack. But I was only 35. Other than what the RSD had done, I was
in pretty good health. My wife would take me to the ER and, thinking
I was having a heart attack, they would give me morphine injections.
The morphine would ease the pain and slow my heart; they had to do
these shots every hour when this happened. They would admit me to the
hospital and give me an injection or my heart would just keep going
hard and fast. My wife said that after a few of these admissions a
doctor took her outside and told her I was going to die from pain
induced heart damage if I did not get a pump that gave me morphine
constantly. She had to fight hard to get me that pump. When I got
it, it took a while but things did start to finally calm down.
That first pump
was put in about eight years ago and I have had nothing really major
since then. They have to be replaced every 5-6 years because of the
battery life but, other than a recent mishap where I got the
medicine, (instead of the pump) which put me in the ICU for a stay
for observation, I have just been dealing with the pain. I have
gotten to a place where I know its part of life, for the rest of it.
And I do have it now in most of my body. You will almost never see
me wearing anything other than nylon shorts and a tank top. But I can
take a hug from my wife or kids, without wanting to scream. I had
some real bad issues with my legs but, like many with RSD, everything
gets pushed to that. Turns out, that my knee was so degenerated that
it was causing me problems all over and a recent Synvisc injection
fixed up my knee and, in turn, has done wonders all around. My pain
level is down. I can’t remember the last time I felt this good, and
it's odd because the incident with the pump made them cut back my
rate 25%. And I don’t want it to go back up.
In what ways has it affected
your life?
The answer to
this is a book in itself. There are so many changes you couldn’t
possibly touch upon them all. So I will just mention a few that
stand out in my mind. The first thing I hate to talk about but I
feel I have to, if I want to be honest. It’s selfish but I think
normal, given the circumstances. After the “shock” wore off, the
“why me?” way of thinking started, You don’t realize the amount
of bitching, and moaning and moodiness, you project at the very
people who have done nothing but stand by your side, fight for your
treatment every step of the way, and give you love and support in
spite of you not noticing it or showing appreciation. This doesn’t
happen because you are a jerk, but because of the “why me, how did
this happen?” and shock of it all going through your mind. We
aren’t talking weeks in my case either; I am talking years of
wearing RSD blinders. Lucky for me my wife's love and support did
not cause her to say “goodbye”. She was strong enough to hang in
there until I finally saw I was not the same person at all anymore.
Like a slap in the face, I saw that I had become more of the disease
than a husband and a father.
Obviously, I have been unable
to do much of the physical stuff that most fathers do. Being a
father of sons, I always wanted to play football and basketball with
them. I was very athletic as a young man. My boys just know me
really with the physical problems of RSD. I try to make it up to
them in other ways. My dad who is 25 years older than me is in
better physical shape than me. I hate having a handicapped sticker
on my car. I try to not use it, but sometimes I have to. Once, a few
years back, I had to use it when I went to the supermarket. I did
not need my cane, so I left it in the car, and an older man started
to yell at me. He was saying that the spot was meant for “cripples
and old folks”. I wished I had my cane, because I wanted to whack
him with it, and I am a very easy going guy. But stuff like that,
when people are so ignorant, and hurtful, I get mad.
I hate always
having to either plan everything, or cancel plans. The financial
trouble that it has caused from not being able to work, and the
stress it causes, really sucks. But you do the best you can.
Do you have a good support
system?
My support
system is, without a doubt, the only reason I am alive today, and that
is no exaggeration, so yes.
.
How have you reinvented
yourself?
Nothing can
bother me anymore, since nothing is or can be as bad as RSD.
Has anything good come from
this trial?
Yes, somehow it
has helped my wife see something in herself she couldn’t see
before. She has become more confident and has tried more things and
has seen the strength that she has. She has gone to school, she has
started hobbies she loves, that she never has even attempted before,
and I know it stems from what we have endured as a result of the RSD.
What things do you miss the
most?
I miss
activities with my family and the ability to work, doing what I
actually loved to do.
What do you want the general
public to know about you or your disease?
What I think now
is not what I would have said 10 years ago, but I see its importance
clearly now. Better support and understanding for those who stay
close to us and help us 24/7/365, and love us with RSD. They suffer
more because loving someone that is in hellish pain would have to be
worse than experiencing the pain first hand. I am not the support
group kind of guy. To me, talking about it, that just makes it stay
alive. I want to forget it as much as I can. The pain reminds me
enough that it is in my life. But I do understand why they are
important for people. I think probably mostly when they first begin
this whole thing. I remember how there was no place really for us to
get information when I first got diagnosed. The internet was not
what it was now, and the only place you could really get any
information was at a doctor’s office. They don’t have the time
and, even now, I see they don’t always know what is really true and
what isn’t. Sad to see so many doctors that have that “Huh?" look on their face when you say RSD. I would have hoped that, after
all this time I have dealt with it (very close to 18 years now), that
would have changed. I am lucky to have a great primary doctor. If he
doesn’t know something, he says so. He doesn’t BS me. He either
finds out, or sends me to someone who does know.
