Trach-ties
My Story
Now I guess its time to tell you my story......
The trouble is where do I start? No sense in dragging you
back through my childhood since it was pretty uneventful.
I was the oldest of seven children and grew up happy and
healthy in a small coastal New England town. Full of activity, fresh
air and sunshine.
After high school I went to college to follow my dream. I had
worked my way through college working the midnight shift so
that I could still attend classes. After graduation I went on
to work just as any new graduate. I married in 1981 and left
that seaside community that I had known for so long.
Before leaving that seaside community the hospital that I
worked in started major construction and renovations. When I
arrived at my next destination I again was employed at a
hospital that was undergoing major additions and renovations.
Little did we know that this may play a role later in my life.
The entire ten years we were there major construction was going
on in a different parts of the complex. All of which my job
took me to during everyday.
During those ten years is when my health started a downward spiral.
I remember a time in 1983 when I had what they thought was laryngitis
for 3 months. In retrospect that was probably my first encounter
with Laryngeal Dystonia. I fully recovered and never thought
about it again. I had 2 lovely children over the next couple of
years. The joys of my life. After my daughter was born I had
problems with hormone levels. I started
headaches but didn't think anything of them until they were severe
enough to start to interfere with everyday living. One day it was so
severe that I asked a friend of mine, who is a Neurologist, when someone
should be concerned with a headache. There was no putting anything
past him! Within an hour I was having emergency scans and neurological exams to
see if there were indications what could be causing the headache
and other symptoms. A couple of days later it was snowing outside, but my
vision had deteriorated enough that I couldn't see it snowing. My son,
who was a toddler at the time, made mention of it snowing. That
is the day my Idiopathic Intracranial Hypertension was diagnosed.
Idiopathic Intracranial Hypertension (aka, Pseudotumor Cerebri or PTC)
meant frequent headaches, blurred vision and frequent spinal taps to relieve the
pressure that would accumulate in my head. Despite having this I tried to
go on with "business as usual". I continued to work full time as well as
be full time mother and all that entails. I tried to hide my symptoms from
my children, which I was pretty successful at for a long time. All they
knew is that every once in a while they went with daddy to take mommy to see
the Emergency Room and they would "camp-out" in the car until mommy came back.
But the more taps that were done the more scar tissue developed. In 1994 it
became apparent that it was getting more and more difficult to control the
pressures using the taps and it was getting harder to do the taps due to
the scarring. In March I had what is called a "shunt" put in that takes away
the extra fluid and puts it into my gut to be absorbed rather than accumulating
the pressure in my head. I was afraid of having a shunt put in for years. But
once it was over I realized how foolish that had been. I finally did not have
a headache or the other symptoms!
During 1991 we made another move. This time further south once again. Again I
found employment in a local hospital. Once again construction was in the works.
I worked midnights again so that I could be home with my children during the
day. I had my shunt surgery and recuperated in no time and returned to work.
We thought we had finally defeated whatever demon had plagued us with the PTC.
Things had been going well. No more headaches, well maybe just a migraine every
now and again but nothing compared to the years of headaches I had experienced
before the shunt. Everything seemed to be fine. Friends used to say that if you
looked in the dictionary under "super-mom" my picture would be there. I was
trying to do it all......full time work, full time mother with active children,
full time wife, full time homemaker....the same as any other mother during
these times I thought.
All that changed the early morning of November 22,1995......
I was working as I always did, when they came in to "do the floors" as they had
hundreds of times before. Suddenly, just after they started, I was having difficulty
breathing. But this was different than just wheezing. It felt like my voice box
kept closing and I was fighting to get air in as well as out. We started
breathing treatments without any improvement. I ended up being admitted to the
hospital as a patient. It took many medicines to get it so that I could breathe
with relative ease. I got to go home after a couple days and recuperated. I returned
to work, which was actively under construction, within a couple weeks. Once again they
came in to clean the floors and once again the same incident happened. This time I
was admitted to Intensive Care.
Once again I was hospitalized, but this time it took longer to get me breathing
easier. I once again recuperated and returned to work, with the understanding that
they would not clean the floors when I was on duty. It all sounded simple enough.
Unfortunately the repeated exposures had made me even more sensitive. I once again
was exposed to fumes from a cleaning agent and once again was hospitalized. Only to
recuperate one more time and attempt to return to work. We did start a ventilatory
assistance device for when these episodes would start so that it could push open
my vocal cords using pressure to open them, known as BiPaP.
As time went on I experienced more exposures despite agreements which proved useless.
There seemed to be more things that would trigger these "reactions". There was definite
cause and effect that we could prove, but they were getting more severe and longer
lasting each time. You are probably thinking....wow ....what a head case....a real
hypochondriac. I'll admit it crossed my mind also. There are documented double blind studies
to disprove any psychosomatic component. Basically I am the perverbial "canary in a mine
shaft." I react to parts per Billion as opposed to parts per Million....the reactions
start before anyone can smell anything.
I continued the cycles of exposure....recuperate.....return to work......exposure....
and on until December 12,1996. That morning I was working and had been doing relatively
well for weeks, all things considered. That morning it was nearing the end of my shift when housekeeping came in to dry-mop the floors. Unknown to the housekeeper or myself someone had
sprayed something on the mop to increase its attraction to dust, which we found out later.
I again had a reaction, but decided to try to get home to get onto my BiPaP. I called my
doctor telling him that once again I was exposed to something just didn't know what. I went
to his office, and he proceeded to call an ambulance that took me right from his office,
because I wasn't doing too well. Needless to say I once again was in Intensive Care and being assisted
to breathe. I had stabilized enough that they could send me home for Christmas on the ventilatory
assistance device.
yes that is me, just after getting off the ventilatory assistance device
That day was the end of my medical career. I had not been able to recuperate as I had all the
times before. After all the high pressures that it had taken to make it so that I could breathe,
and the lengthy high doses of steroids had all taken its toll on my body. My immune system
was, and still is, shot. My bones and joints were affected by the steroids. My immune
system, what is left of it, doesn't react like everyone elses. It seems to have turned against
me and lets pathogens in. It over reacts to things that it doesn't need to such as perfumes,
cleaning solutions, cigarette smoke, and many other everyday things that most people take for
granted. But it doesn't fight infections, which I can get from a mile away.
I kept trying to get back to the level I had been so that I could return to work which I loved.
I finally realized a few months later after I had spent more time in hospitals than I did at home
that I would not be returning this time. My health had gotten so tenuous that I basically became
housebound, which I still am. My respiratory failure was so bad that I ended up with super high
pressures just to keep me breathing. When all that started to fail I was given a tracheostomy so
that I can breathe. All that extra pressure so that I could breathe came with a price as well.
This is me in Sept 99
I believe everything happens for a reason. We may not know what it is in the beginning, but it
all has its reason in the grand scheme of life. Did I tell you this story because I am angry? NO.
What I am trying to do is to educate and get people to think. In this fast paced life we have now,
does it really make it better? If this can happen to me, what does that mean for our children?
Am I just the beginning of things to come? Did all the exposures to major construction have any effect
on all that's happened? Was it the repeated exposure to glutaraldehyde? Some theorists believe so. Bigger and better is not necessarily all it is cracked
up to be. In the 1970's we made homes that were more "air-tight" so that we would conserve energy.
But at what cost? Our children are developing asthma and other respiratory ailments at a higher
rate than ever before. We all feel that we have to have fresh smelling bodies, homes, clothes, hair, automobiles
....at what cost? What is all these things we are doing to our environment doing to us? We all feel we
have to get anti-bacterial dish detergent, anti-bacterial cleansers, anti-bacterial soap, anti-bacterial laundry detergent.
What are we doing to the "good" bacteria out there that actually help keep the "bad" ones in check?
We are destroying them along with the rest. When in reality a good handwashing with regular soap,
water and friction works just as well. We over use antibiotics for a sniffle because we don't want
to be sick. Or start a course of antibiotics only to stop them the day we feel better rather than finish them as prescribed. As a result we have "super" pathogens that are antibiotic resistant.
image courtesy of J. Brooks
I know that I will not be on this earth for a long time. But
I want to make a difference for the better so that even if it saves one person from going through
what I have been through it will be well worth it.
I may look a little different with this tube in my neck, but I am the same person on the inside. I am still me!
I am still a mother, a wife, a person with something to offer. You can see me, but don't focus on the plastic in
my neck. In the same way I don't focus on your particular traits. Look at the person within! You may cover your mouth
when you cough, atleast I hope you do, and I cover my neck. Same stuff, just different exit site! And you wipe your nose and mouth,
well I have to wipe my neck from time to time. When given the opportunity I do this in private so not to upset those I am with,
but in some instances I have to do this when and where it happens. Don't make a big deal about it. I sure don't! The only
difference is that you breathe through your nose and mouth and mine has taken a detour. Please don't raise your voice to me, I may
not be able to talk, but my hearing is fine. Most of all don't pity me! I see this as a miracle that has made it so that I can live
my life, rather than not be there to enjoy life. Just appreciate what you have and learn that there are those who do have things
that are different from others and still are wonderful people beneath the outer shell.
We only get one chance at life. We have to make the most of what we have to do it with. I may be physically disabled but my spirit is not.
I love to laugh and teach as well as learn more as I go through life. I can fly as high as my spirit (and my stubborn attitude) can take me.
Laugh and the world laughs with you and not so much at you.
Trachties
