My story begins on a beautiful day on June 5, 2006 when myself and two ladies that I worked with at that time were heading to WV to clean up a cabin and do a little sight seeing on a little quant town in which one of the ladies was from. After breakfast at a gas station, mini mart and small diner we went out to the pick up truck we were riding in and I got up on the back tire so I could get to the cooler that was in the back of the truck and when I went to step back off the tire I hit uneven pavement and I went down to the pavement backwards off of my right leg. I knew it was bad but I didn’t have any clue! #RareDisease
Making a long story short my stay in WV was anything other than pleasant. I broke my Tib/Fib, tore my ACL and shredded my Meniscus in my right
leg and knee. This was June 6, 2006 but it would be about a week later before anything could be done Then came the surgeries, of course plates and screws. Then came the surgery to take all that out when my body rejected it, and my ACL was too damaged to do anything at that particular time
and as it turned out nothing could be done with it period. Physical Therapy was next and of course there was an issue my knee swelled up like a
basketball. Back to the Doctor and then to surgery again, this time the Meniscus had been shredded so now that I was working it the knee
wanted that damaged tissue out and that is what was done and then back to Physical Therapy.
Hoping this was going to be the last issue I was deeply disappointed when a terrible pain started creeping into the left side of my knee but as
the pain became more intense my knee started to swell and then something new, a fever. Back to the Doctor, then to the hospital to drain the
knee. Here is the kicker, I was now beginning the fight against Osteomyelitis (bone infection) and one more thing trying to keep my leg which
I had no guarantee that this would happen. My life became engulfed with “IV Antibiotics” and all the medical supplies that goes with it. This was
done in my home, round the clock and administered by myself through a central line that had been placed in my chest in another trip to the
hospital.
So far I have said nothing of what my home life entailed in that I had a great position where I worked and I had a husband at home. In 2006 we
had been married 11 years, we had moved 3 times and we had a “family” of three Chihuahuas. All I can remember about those long lonely months
since we lived 13 miles over a mountain that took 30 minuets to drive, was fighting with the insurance companies to one, keep paying my
medical bills and number two keep some kind of pay coming my way. I also remember no help and no visitors. My goodness I remember that
feeling like it was yesterday.
When I did go back to work my job had to be filled by someone while I was gone, and now I was in a leg brace and on light duty. I could not
have done the job let’s face it I was broken, and as such I had to take a $3 an hour cut in pay that hurt after working my way up over the course of seven years starting with 6 months over night, yes that would be the Graveyard Shift. As a matter of fact I was on that shift on 9-11, one of the creepiest
nights ever.
In my state of VA at the time it took filing for Disability and getting turned down which took approximately a year then a Lawyer takes the case
and then it took a few different Doctors to make a statement upon examination, that work would not be in the future, and that would be presented
to the Judge of such cases. However once Reflex Sympathetic Dystrophy was presented, with proof to the Judge he made the decision that no
more tests were necessary, and that he sincerely sent his “best wishes” as he knew first hand what CRPS was all about. Now when it was apparent
that staying in the working force would be another life changing event if at all, I went back to college, this time on line and two months after I was declared by Social Security to be permanently disabled, I graduated with a 3.85 GPA with my Bachelor’s of Business Administration Healthcare
Management. I was so proud of myself and only two people came to my picnic and one was my husband and the other is my best friend even today.
This is not however the end of my story. I am sure you have gathered by now that I had to become able to at least take care of myself which became increasingly harder as time went by. I started getting sick with spells of COPD that ended up with me being put into the hospital with pneumonia
first once then twice it was every Spring and Fall. Weight and fluid were becoming serious issues and my Doctor could not find any triggering
factors until in 2013 and swelling in my legs would not subside with medications, and I was on oxygen 24hours a day October came and so did my
bi-annual Fall bought of COPD Exasperation and into the hospital I went however when the rescue squad took me in through the Emergency room
I was coughing so bad that I ended up having a Myocardial Infraction (a heart attack). This changed everything including the Hospital I would be spending the next 14 days in, having very extensive testing on my Heart. ‘Go Figure!’
On December 24, 2013 surgery entailed a Triple Bypass or called “The CABBAGE” which has been ‘quite the ORDEAL’, which doesn’t even
begin to describe getting through this procedure. Notice I called it getting “through” and not getting “over” this particular event as I just
had my 5th year anniversary of the surgery and had to have it checked out with an EKG and a Stress Test, which I am happy to report my
heart is as good as new. I have lost 35lbs and the Type ll Diabetes is gone; my Blood Pressure is under control BUT with my chest wired
together there are certain things that are painful such as the simple task of putting lotion on my chest, laying on my stomach or laying on
either side and Bras are pretty much a thing of my past. Now Cardio Rehab really was getting me in shape and feeling pretty amazing
considering everything that had happened over the course of a year UNTIL….
The next chapter begins and this is no joke December 26, 2014. I was coming home from picking up Chinese food for supper and there
was a beautiful sky as the sun was setting and I ran into a little traffic at a bridge where people were being impatient, at around 5:00pm
wanting to get home after their days’ work. A beautiful evening, a warm car and the smell of food filling my sense of smell right down to
my hungry belly and for a split second I went to the “Nod” and when I suddenly snapped back in, somebody three cars ahead of me going
across the bridge, as I was about two thirds of the way on the bridge went very quickly across the lines on the ramp and scurrying back down to the interstate when my car seemed like it was drifting forward so I went to slam on the brakes and yes” ladies and gents” I did, I slammed on the
GAS by mistake! I can still smell the stench that came out of the Airbag then I realized that I was still pushing on the brakes as hard as I could
push my foot on the floorboard and not the brakes at all. By the time the Fire Department got me out of my Jeep I was aware that things were
not right with my body, a few fractured ribs on the left side of my body and of course the right leg (the one with the CRPS) but this time
I fractured my Carcaineus (my heel) and my right ankle. So I end up, two days later with crutches however my instructions were “no weight
bearing” for 6 weeks and then we will see how it goes.
At the house, husband there to help me and my very first trip to the bathroom and the crutches are a very “foreign” object to me and I am
trying to maneuver around on one foot with these crutches in my hands and I start to go over towards a very tight space between
the toilet and the bathtub. My husband standing there and I can still see the look on his face, arms stretched out and utter bewilderment as
he has no clue on how to help me without hurting me because of my heart surgery and oh by the way when I hit the tub I fractured two
more ribs, therefore I was off to another facility an adult rehab, not even a happy place. I couldn’t even lay in the bed without being in tremendous
pain.
As part of my pain management for my CRPS I was and still am on Pain Medication but I do go to a regular Pain Center. My Primary Care Physician
and my Orthopedic both felt that I would be in more pain that they could handle as my treatment would be for a Lifetime instead of just a few
weeks. Also in 2007 through endeavors of the Pain Center’s Neurologist, I had a Spinal Cord Stimulator(SCS) implanted but while I was in the rehab and the fact that I just couldn’t get around to do the recharging maintenance of the SCS I had to rely on pain medication. I go to the pain center every month
for random drug tests and medication consultation along with my prescription refills. While I was in the rehab they told me they had no one that
could administer my type of meds and I could not get to my appointment and no one could go in my place to get my medication so the other ting
I got to experience was full blown withdrawal, it was no fun and not pretty.
There are other procedures and other illnesses that have occurred and it always seems like I don’t even what to ask the question “What’s Next?”
as soon enough something will happen, for example-I have shrunk 3 inches in height in the last 5 years; last year on December 13th, the day after my birthday, I took my German Shepard out back after I had been gone to a Dr. appointment that morning and I did not see a chicken on the other
side of a bush but my boy did and he bolted while my hand was attached to the leash. I went VERY quick and VERY hard to the ground and ended up with a fractured pelvis and shoulder so just in the last month I have actually back to being “not broken”.
By now the title to my story should seem pretty evident as everything that has happened in “my past decade” have been life changing events. I also
seems to me like I take little pieces of each event forward in my Medical Collage called my life. As for the title of my story this was said to me by my Neurologist as he was giving me the gravity and depth of this horrible disease and I remember being so lost in thought of the concept of the whole
thing trying not to get totally consumed by it. Life as I knew it was over the very second I broke my leg; however I see it as evolving as I change
with each event. I don’t have much of a social life and that is one of the reasons why I am telling you my story, but I find a lot of joy in just the simple
things in my life. Sure I get depressed that is another reason I am here but in 2007 I came up with this signature statement that I tell myself
almost every day as it gives me hope and all I have to come up with is a little joy and it fills my heart and spreads like a wildfire to my soul.
So as I conclude only a small but forever growing story and as I have finally put it into an actual format and I am actually going to share it
with other human beings then this has been another serious growth step, You’ll try to find a little joy in your lives even if only for a min no
matter what it may be, take a chance, it may just warm your soul. Here is my statement, just something to think about:
“We go through our lives living for our ages but life teaches us that it that it is the
Quality of our lives that is both ageless and priceless”
tjbird 2007 #COPD #CRPS #CRPS #ChronicPain #RareDisease
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