HOW AND
WHEN DID YOU GET RSD?
I
just spent seven years of schooling towards Criminal Justice &
Criminology, graduating Magna Cum Laude. I was involved in martial
arts. I was sending applications out and just starting to get through
the application process. The economy, at that time, was starting to
pick up in Michigan. I graduated at the time of the 2010 economic
failure, right when Michigan became the FIRST state in the US to go
bankrupt. I was still working as a Site Manager at the apartments and
also took on a job as a Community Living Instructor. This employment
would be ok until something else broke.
I
just came home from working a 12 hr shift and I was getting ready to
hang letters on apartment doors at midnight. A tire from a “semi”
had knocked the mail boxes completely out, and I was notifying
everyone that they needed to pick up their mail at the post office
the next day. As I was stepping down the steps in front of my
apartment, I twisted my ankle and fell to the concrete screaming. I
could not get up. The neighbor shouted obscenities at me from his
window. I wanted to yell “help”, but I could only scream in pain.
My friend heard me and came to my rescue. I went to the ER 24 hrs
later and they said I just twisted the ankle. They wrapped it and put
me on crutches. The swelling in my ankle felt the size of three
footballs, and the pain was so intense that I literally wanted to get
a chainsaw and saw the ankle off.
Two
months passed and l was still not walking, and was in horrific pain.
The doctor sent me for an MRI and, at that point, I still could not
get the swelling down. We got the results of the MRI and it read that
I had ripped one of the ligaments completely off of my ankle bone.
Then the doctor told me that he suspected RSD. I asked him “Will I
ever walk again? What does RSD mean?” In the back of my head, I was
thinking of all the years I have worked so hard for my degree and of
sacrifices that I made. “What is RSD? What does this mean for me?”
I asked. Basically, the doctor shrugged his shoulders and walked out
of the room. I stood up on my crutches and took a step towards the
door and collapsed. The office staff had to call a friend to come
pick me up. I had no idea where I was going from here. See, there was
one more twist to this problem. I had no insurance and I had to find
a specialist that would give treatment without insurance.
I
started to call around and no physician would treat me, let alone see
me for a consultation. Without insurance, making cash payment was not
acceptable. I tried to go back to work on crutches but that did not
work well. I could not sue my employer at the apartments because I
already knew the stairs were broken and I continued to use them.
Also, the apartments are privately owned and attorneys I spoke with
hesitated suing a privately owned apartment, citing the inability to
collect an award.
Anyway,
I spent a few months literally living in a recliner, with my best
friend caring for me. At first, I thought he helped me out of guilt.
We had been close friends for twenty years and I didn’t want him to
help me out of guilt, but I could not help myself and I had nowhere
else to turn. I was getting ready to move into my own place but now I
couldn’t even do that. I had been living in my best friend's front
room and we were working on finishing my apartment for occupancy.
Now, here I was with CRPS.
How was I going to ask this man to
take care of me? How could I do this? How was I going to allow this?
He had his own life to live. Was it fair to ask Neil to do this? I
had no insurance; everything was crashing in on me. I had just spent
seven years of my life in school to be a cop. Was this all gone? I
can NOT WALK! I was in martial arts, and I hurt myself stepping off a
stair! I am so confused. What happened? This MAKES NO SENSE!!!! OH,
THAT’S RIGHT, I FORGOT: RSD/CRPS!!! Then I started to look online
for some help with RSD support, looking for someone to help me with
insurance and medical. Better yet, let’s be real. I was at the
point of suicide. YES, that is what I said. I was truly desperate
and, when I called the RSDSA that day, Jim Broatch saved my life!
I
was in so much pain from my ankle, and depression was setting in. I
had no home of my own. I lost my apartment and my job. Now, my best
friend was helping me out of guilt because he did not fix the stairs!
I could see it in his eyes. He thought I was holding him responsible.
And, you know what? At first, I think I was. Not anymore, though.
That man has gone far and beyond helping me.
Let me share one
more thing here that is the pun of it all, you may not know what a
Community Living Instructor is. My job was to teach others with
disabilities how to live in society. Now I have CRPS and my team of
doctors is passing me along because they do not know what to do with
me. No one wants to take responsibility. I can’t find anyone to
help me with my eyes burning. They even went as far as telling me to
talk to my dentist.
IN WHAT
WAYS HAS IT AFFECTED YOUR LIFE?
CRPS has
turned, twisted, ripped off, and even (gone as far as) thrown away
pieces of my life. I think, most of all, it has been a blessing in
disguise. This disease has made me stop and re-examine my life. The
one thing about any disease is that it does not give you a choice
about changing your life; your life will change. The choice comes
with what you will do with it. Specific ways it has affected my life:
Emotional
roller coaster—many highs and lows
Laying
on bed sheets--skin sensitivity to many things touching me
Crutches--mobility
constraints
Vertigo--Car
rides have become very difficult for me, at times, as the vibrations
from the car ride hurt so bad that I think I might go mad
Sometimes
walking on tile feels like I am walking on glass
Have
to wear gloves for high skin sensitivity / tenderness
Ask
for help for things; I never needed help before CRPS.
Don’t
eat—eating habits changed drastically.
DO YOU
HAVE A GOOD SUPPORT SYSTEM?
I have a
good friend, Neil, that supports me. And a few friends on FB support
me. My children don’t know much about the
disease but, if I need them, they will come and be here for me. I
have just started to get united with a Christian Church and involved
in a bible study group. I try to help educate people in CRPS
Awareness that live in the village where I live. People still call it a village but the place is growing so fast that I really don’t think that we qualify as a
village, anymore. I am also involved with online support groups and
have developed several good friends over the past year that have
helped me through some rough times.
DOES
FAITH PLAY A PART IN YOUR STRUGGLE OR YOUR STAMINA?
If
it was not for CRPS, I would not be back with the Almighty God. I
thank God for this disease because my faith is getting stronger every
day because of it. That fall has brought me to our Lord Jesus Christ,
our Savior. I guess you can say the CRPS has brought me closer to the
Lord, and the Lord has helped me accept the CRPS. God has given me
the strength to get through’ the pain of the day many times. I
cannot imagine successfully making it through some nights without the
love of God. HE is my rock. HE is my strength.
HOW HAVE
YOU REINVENTED YOURSELF?
Jane helped
me get to the next step of reinventing myself by encouraging me to
answer these questions. I did not want to answer the questions but,
all-in-all, the questions were therapeutic. They helped me to
understand myself a little better and helped me move ahead and take
some baby steps forward. It is hard to reinvent yourself; especially,
when everything has been ripped from you and you really have no idea
what to do with yourself or where to start.
If Jane was
not my friend, I would not have answered the questions. Yet, this was
therapeutic for me. I am glad that she helped me move to the next
step. The next time a friend asks you if you want to answer some
questions, please think about it. Don’t
think that I did it right off the bat; I did not. It took me like a
month to start, but Jane did not give up easily. She can be
persistent and I love her as a very close friend. That is the kind of
friend you want on your side. Not the ones that will let you lay on
the roadside. Just think about that!
When Jane
asked me to answer these questions I had to set them aside, and I
cried. I realized it has been fifteen months since my accident and I
still don’t know who I am. My past life
has been taken from me and everything is gone. CRPS has changed me
into someone I don’t recognize. It is not
just what am I going to do with this person! What can I do? I am not
sure what my limitations are. This disease is unpredictable. I have
no stability in my life at this time. That is exactly it. This
disease is catastrophic, inside and out!
I am
working on reinventing myself and it takes time. It is a very slow
process. Well, I just cannot tell you what it does to us, because it
changes us completely. We don’t even know
who we are anymore, only that we are not who we were. Otherwise, we
would not have to reinvent ourselves now, would we? And I would not
be answering these questions. I do think everyone should have to go
through something at least once in their life,
though not necessarily this disease.
Then, maybe we would all
appreciate life itself, even more.
HAS
ANYTHING GOOD COME FROM THIS TRIAL?
It has
brought me to a place of change: to change myself to be a better
person within myself, and become one within the universe and
humanity.
There are so many things in life we take for
granted. Little things are easy to take for granted; such as, picking
up a fork, brushing your teeth, taking that step, putting on your
pants, watching TV, reading a book, typing, going to the store by
yourself, showering without it being a struggle, having your privacy
in your bathroom, being able to go see your loved one, or just to
pick up that phone to tell them you love them, maybe to get those
words out of your mouth, maybe the
privacy to be alone.
WHAT
THINGS DO YOU MISS THE MOST?
I miss
being able to do multiple tasks and not think twice about it. The
best way to describe this is best written & spoken by Christine
Miserandino.
I suppose
the best way I can have someone come close to understanding a
portion of what we CRPSer’s go through
is: think of someone you know who has lost their
mobility. Then think about having to depend upon others for
most everything that you would normally just do. Independence would
be the best way to sum up what you would miss
the most.
WHAT DO
YOU WANT THE GENERAL PUBLIC TO KNOW ABOUT YOU AND/OR YOUR DISEASE?
I encourage
anyone to participate in this project if you are in any way afflicted
with CRPS. Those that are not, I encourage educating yourselves
about the disease by reading some of these stories.
The general
public must learn empathy, compassion, humility. NOTHING is an issue
until it strikes you, a loved one, good friend, or family member. We
are all members of the human race. That
includes all colors, creeds, races, and physical abilities. We are
our brother’s keeper and must learn to
not only practice it, but live by it. Respect one another and do not
judge. We are all created equal with different attributes and
weaknesses.
WHAT
HAVE I LEARNED FROM THIS DISEASE?
How cold
the world has really become. I was surprised to find out how many
places are really not equipped to handle handicapped people. I live
in a small village with limited businesses of any sort. The local
handicapped population is either very small or very sheltered.
Businesses, such as restaurants, have very lean handicap facilities.
My handicap has caused me to isolate myself even more because the
larger cities are thirty minutes away and that was too far for me to
sit in a car and ride. Automobile vibrations put me in horrific pain
and I would cry the entire ride. I have developed increased empathy
for handicapped persons to a degree I never realized I did not have.
Consider
educating yourself and your families and pass the word. It’s ok to
be afraid because we are, too. We don’t understand all either, but
we all can learn together and not one case is the same. Try not to
compare us because what works for one may not work for another.
