Part 2....The Tempest
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| Colorado Storm heading towards Chatfield Reservoir |
“And once the storm is
over, you won’t remember how you made it through,
how you managed to
survive.
You won’t even be sure,
whether the storm is really over.
But one thing is certain.
When you come out of the
storm, you won’t be the same person who walked in.
That’s what this storm’s
all about.”
- Haruki Murakami
Part 2....The Storm
For me, hurricane season is a
never-ending cycle.
In the calm before the storm, I am
lulled into the belief that my life is back on track. I'm moving
forward, making progress towards getting “me” back. The constant,
daily headaches are finally controlled through gabapentin while
breakthrough migraines are put down by a new version of Midrin. While
I will always have the deficits to my executive brain function,
hearing and vision; I've learned to work-around them in a relatively
effective manner. Basking in the promise of a revised future, I
regain my annoyingly positive self.
FLASH: I am a lightning rod driven
into the depths of a sand dune facing the shoreline, awaiting
landfall of the next hurricane. Marooned, I am forced to endure the
coming storm alone. Not because I don't have a support system, but
because the very nature of the hurricane happens within me. The
Observer of Kristy's life that resides inside my head watches the
oncoming storm through the windows of my green eyes.
Lightning strikes, wreaking havoc throughout the intricately wired electrical system of
the master controller aka my brain. Some of the delicate wiring gets fried, others
experience a power surge shorting out the line. New wiring may stay
intact, yet the breaker gets flipped.
Driving high winds beat at me, tearing
away any protection I had to endure the harsh elements intent on
destroying me. As the wind gathers strength it pushes the sea onto
shore in a storm surge that threatens to drown me in the watery depths. I scream in vain for
help, but nobody can hear me. The Observer tells me to remain calm,
you're an experienced warrior and survivor. You've done this before,
you'll get through it again.
I yearn to reach out for a hand to
comfort me, but I am an immovable object. Animation is beyond me.
Objects large and small fly around in the fury of the storm
pelting my skin. I am left raw and bloody. The Observer continues watching Kristy cry for help, for someone to know she's stuck inside her head. The Observer wishes she could explain to someone the storm raging within Kristy. The only way either can survive
the storm is to shutdown, turn on sleep mode and wait for the lull in
the storm to recover. They both pray for the strength to survive.
After the storm, The Observer makes an
ironic connection. There is no external force, like say...a hit and
run driver crashing into Kristy and changing her life by rewiring her
brain like in 2007. No. Kristy is not only the victim and survivor of
this storm: she is actually the embodiment of the storm, Kristy is The
Tempest.
<>
Opening my eyes, I'm acutely
aware that once again; life will never be the same. An IV is attached
to my left arm, it hurts and itches. I hear the steady beep,
beep, beeping of the heart monitor. Looking at my chest I see wires attached all over leading to a monitor of some
sort. I vaguely remember the Radiology guy explaining it at some
point overnight. There's a steady pressure being applied to my legs that
inflates and deflates rhythmically. Okay. Compression thingies, like after my hysterectomy. Hmm, these don't hurt....clearly I'm in the
hospital. Last night wasn't a dream. Shit!
The memories of the night before float
in and out of the fog in my brain. I need to pee. Catheter? Nope,
that discomfort is gone. Thank God. <First time I was awake for insertion - can I just say...that fucking hurts, I don't recommend being conscious if you can at all...avoid it.> Rolling to my side I note a sign
stating, “Fall Risk. Call nurse before attempting to get out of
bed. Alrighty then. A tiny nurse comes in with a big, warm smile.
I can't help, but smile in return. “I bet you need to pee huh?”
Why yes, yes I do. When I try to speak it comes out like a drunk two
year old. Hot tears roll down my cheeks. I nod in reply.
My once stable footing is gone yet
again. I feel like I'm on the deck of a sailboat in a rough sea.
Growing up I never had problems like this when Dad took us out
sailing. Odd. I note my vision is...blurry? I hear every single
sound acutely. Damn it's making my head pound. That's not new, but
what is...my skin hurts...even my hair hurts. How can hair hurt?
After I attend to business the nurse walks me back and I note rumpled
sheets on a cot. The nurse tells me my son left early to get me good
coffee. Coffffffeeeeee. Yeeeeesssss. I am never more thankful that
my kids know me than in this moment. I mean REALLY know me. I've
discovered it's rare for people to really know you deep down. This
moment of pure appreciation is a blessing.
There is a terrible fear that reaches
deep into the core of your being when you realize you cannot
communicate with those around you. Your mind is alive and
functioning normally...okay, as normal as you ever are...I mean,
what's normal? I take a little pride in being weird - uniquely me.
Anywho, I digress.
Through my flowery talk above I tried
to weave a analogy of my experience at the hospital. I'm going to try
and just hit the highlights for brevity's sake. Also, because the
memories prior to leaving for the hospital are clearer than the
experience at the hospital. Three years later, they are still a
blur.
I ended my previous post overjoyed that
my son was going to get me to an emergency room. Looking back, we
both learned that we all need to have a plan B in place for those
unexpected moments that take you for a joy ride. You'll understand
what I mean....see lessons learned below.
<>
Sean came into the guest room after
basically telling off his grandparents, grabbed my purse and got me
to my feet. Next thing I knew my ex-husband, Jeff, put my arm over
his shoulder...first time father and son did anything as a team in my
presence. Mind you, I still couldn't walk or talk at this point.
That did NOT mean my thoughts weren't running a hundred miles an
hour.
First thought rolling around in my mind
- What the...Sean forgot to put my damn shoes on! Oh my god, we
seriously need to talk after this. Shoes! Hello, I need my damn
shoes. God, and mom's biggest concern was that us kids had on clean
underwear if we went to the emergency room...she's rolling over in
her grave. Or laughing. I'm not sure which.
Dad, John is Jeff's step-dad, normally
drives like a madman. This night...dear lord if I wasn't dying from a
stroke he was going to kill us all. I had little control over my
body and was sliding all over the back seat.
**Here I have to point out that when
you suspect a loved one is having a stroke, you need to call 911
because the EMT's know exactly where to take you and can start care
immediately. Here is a link to find a certified stroke center near
you if an ambulance is not an option:
http://www.strokecenter.org/trials/centers/
**
Back then, I had Anthem BCBS. Where
did they take me? KAISER!!! I kept mumbling over and over,
FUCK no, fuck no....NO. Sean said he
knew what I was trying to say and this is the closest hospital so
just fucking deal with it mom. Calm down. I laughed at the absurdity
of it all.
After being checked in and wheeled into
a room with surgery strength lighting I had nurses and orderlies
pulling, prodding, taking off my clothes, poking me with needles and
asking me questions – ALL at once. Ever since my car accident I
get overwhelmed by too much stimuli and various responses have
happened and change over time. This night I couldn't talk to explain
what was happening to me so I was freaking out. I could hear
everything due to my hyperacusis ( sound filter in my brain no longer
works so I hear EVERYTHING. The world is too loud), ALL of my senses
were hyper aware. I tried to tell them, nothing came out that made
any sense. The head nurse was a fucking bitch and Sean wasn't
telling her that I couldn't talk...he was overwhelmed and didn't know
what to say or do.
Every touch was too much, the lights
were too bright, the sounds of the heart monitor beep, beep, beeping
and the incessant voices too loud. All the talking people blurred
into a cacophonous torture. And. Well. I lost it. I mumbled NO
repeatedly, I squirmed away from the lady trying to take my blood and
the other one trying to take off my clothes...at the same time. Head
bitch got pissed and yelled at me to settle down and asked my son if
I was on drugs. Oh, no you didn't!! You fucking bitch. My brother's
were both addicts while I was growing up so I rarely even drink. I
was offended and pissed.
Finally, Sean spoke up and told her
that I have a brain injury and he believes I had or was having a
stroke. Nurse bitch calmed down, sent everyone from the room, turned
off the lights and returned awhile later with an attitude adjustment.
Sean schooled me on needing to chill my roll. The look of imminent
death shooting from my eyes relayed my feelings loud and clear.
I don't remember much after that
moment, until the next morning. What I do remember is the
Tele-Neurologist Doc asking me questions. From the TV, you could see
he was lying on his sofa playing video games. He evaluated that I was
having a stroke or an atypical migraine and wanted Sean to authorize
me being treated with a drug called tPA in case it was a stroke.
**tPA or tissue plasminogen activator
is the only FDA approved treatment for stroke. It works by
dissolving a blood clot and improving blood flow to the part of the
brain being deprived of blood flow. To be effective, tPA should be
administered within 4 1/2 hours after the start of the stroke. I was
beginning to run out of time for this potentially life saving drug to
help me. But clot-dissolving drugs also carry risks. tPA can cause
excessive bleeding - which can lead to death. The Neurologist asked
Sean if I had any bleeding disorders. Sean said not that he knew of.
Well shit. Yes. I do, but he doesn't know because I never told him.
I can't have this IV treatment. In that moment I knew if the stroke
didn't kill me, the IV treatment would. I started shaking my head
no.
Fortunately, the doctor paid enough
attention to see I was trying to communicate with him and had me
blink to answer questions. I later learned from the cardiologist at
home, after going over my history, that I would've died on the table
if they had given me the tPA IV treatment. Someone was looking out
for me. I believe in miracles. I've had enough things happen to
reinforce that belief, this was another. I am eternally grateful.
Fast forward.....the next morning I was
finally able to communicate verbally. Not like I normally do, but
enough to be understood better than a silent mute. I had to beg the
attending physician to release me because our flight home was the
next day. He wanted more tests, but agreed to let me get them at
home. He sat down and told me that after going over my history he
believes I've been having TIA strokes or transient ischemic attacks
since my car accident on top of the brain injury. There are new
studies linking traumatic brain injury with TIA strokes and
migraines. The studies are so new, the findings still aren't clear
yet.
A transient ischemic attack (TIA)
happens when blood flow to part of the brain is blocked or reduced ,
often by a blood clot. After a short time, blood flows again and the
symptoms go away. With a stroke, the blood flow stays blocked, and
the brain has permanent damage. However, this does not explain why I
end up with deficits after each attack. Most of the progress I make,
I'm sent back to step one. I've never followed the book, but it makes
treatment difficult.
Upon my return home I had the arteries
in my neck checked. They were perfect, thank you. Then they did a
bubble EKG test. I failed. Turns out I have a hole in my heart and
never knew it. The bubbles bi-passed my lungs and went straight
through my heart to my brain. A patent foramen ovale (PFO) is a hole
in the heart that didn't close the way it should after birth. During
fetal development, a small flap-like opening — the foramen ovale
(foh-RAY-mun oh-VAY-lee) — is normally present in the wall between
the right and left upper chambers of the heart (atria). However,
after birth when we start breathing air this hole or flap seals
itself off. Or it is supposed to seal off. Typically there are no
symptoms and it doesn't usually cause an issue. Most adults are
diagnosed during routine exams.
According to the cardiologist, in the
United States the treatment to close the hole is not FDA approved. He
tells me, “Basically it means you'll have to have a full stroke
before you'd be considered a candidate. You don't fit any of the
normal risk factors for having a stroke, so it shouldn't be a
problem. You have low blood pressure, your cholesterol levels are
fine...you could stand to loose some weight (thank you, yes, I know),
but otherwise your heart and arteries are healthy. Most people would
be thrilled to know this. Why do you look upset?” Wait a
minute....”Did I hear you correctly? That I have to wait to have a
full stroke before they can seal my heart?” He nods. I really
want to argue with him until I turn to my daughter and she just
barely shakes her head in the negative. Fine. What about the Kaiser
doctor's evaluation? “Well, you'll need to see a neurologist about
that. I do know a brand new study came out, but it's not really in
my field. What probably happened during your car accident was the
impact caused a rush of blood into your brain. Maybe a tiny clot that
cleared. Have your GP find a neurologist for you and I'll send my
notes.” Gee. Thanks. I have a hole in my heart? And that's OK?
Holy shit. The new cardiologist only reinforced my distaste for
doctors. They really need to take more courses on interpersonal
communication...or how to pretend you care 101.
Present Day: I still suffer from new
deficits stemming from the TIA stroke or what the doctor diagnosed as
an atypical migraine in my medical chart. I started therapy this
January. I did not realize how many issues I deal with on a daily
basis until the therapists tested me. I'll go over therapy and what
they've found next time. It was an eye opener even for my son, whom
I live with. I am still not sure if I'm through the storm, in the eye or in the lull before the next one hits. How I made it through, as the quotes says...I don't know, I don't remember and I am again....very much changed by the experience. Hopefully for the better.
Lessons Learned:
- Always make sure a loved one has a current copy of your health insurance card and photo ID.
- Keep either an electronic record or printed sheet listing your current medications and dosages. Keep a copy in your wallet, give one to your loved ones or email it to them to pull up if needed.
- Create a medical history for yourself and give it to your kids or loved ones so if you can't speak, they can answer questions from a place of full disclosure on your part. I could've died from the clot busting IV treatment because I didn't think to tell my kids I was diagnosed with an unknown bleeding disorder before a hysterectomy when I was 29. They were so young, it never occurred to me to tell them.
- Know your family medical history and pass it down.
- If you believe a loved one is having a stroke – call 911. If you can't, get them to the nearest certified stroke center. You can locate one here: http://www.strokecenter.org/trials/centers/
- Have a living will with medical power of attorney (Hmm, I still haven't done this.)
- The topper – try your best to never have a stroke in front of an ex-spouse. On one level, I know I should not have felt embarrassed. On another, I was because I had no control over anything.
My goal in writing this is for others to know what it's like to experience a TIA stroke. My hope is that my experience can be of help to another. Have questions? Ask me. I'm a rather open book.
Next time, I'll go over the 3 different therapies I am in now. It's another eye opening experience for me and my family. Be well
Kristy
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