You remember the sound old roller coasters made as you climbed the big and steep incline? Click, click, click, click, click,...
Then it was the ride that you knew you would live through, but you screamed as your heart hits your tonsils as the big drops comes. Good times with the big drops and the anxiety building as you hit your next hard climb - Click, click, click, click, click,... Now scream... Now again... Oh the thrill of a white-knuckle ride.
I have rode many of the top rides from a big Texas Wood coaster, to Magic Mountain's best, and even the Stratosphere's roller coaster at the top of the space-needle like building in Vegas - the week before a wheel fell off the coaster to fall to the the Strip far below. I even road one dumpy Fair coaster the the seat belt came undone and my butt was lifting off the seat every bump. I just hung on tighter. Scary but I lived. What a rush! We all know the feeling, the anxiety of the hard climb - Click, click, click, click, click,..., then the life threatening free fall to the bottom with the adrenaline rushing through our body as we reach the bottom to be followed by another Click, click, click, click, click,...
I am an adrenaline junkie in many ways. I can feel the adrenaline rush right now, part euphoric recall, part of the drugs I am taking. I have a new prescription for a controlled drug that makes me "unsteady," or feel half drunk all the time. It also makes my emotions extreme, like just writing about coasters gave me a big rush. But the highs are matched by corresponding lows, just like a good coaster.
But my closest family and friends step back as my emotions swing wildly from extreme to extreme (like a coaster) and look wide-eyed and ask me if everything is OK? And I find such questions very irritating. So I limit my social interactions and delete most of my social media post before I publish them. But that is so much better than the last six years, that I don't mind acting bi-polar and I even look forward to brain surgery!
I have been as public as I can stand as I soon saw that most people trying to deal with epilepsy were young children. I am (mostly) articulate and I could see the children unable to verbalize their feelings and parents struggling to understand what their loved ones were experiencing. I know that the first thing I did when I was diagnosed, was to search for someones telling of their experiences in what I was now facing, but I could find none. So this is part in a series starting here: http://inedc.com/14/provoked-seizures-and-what-i-learned-week-emu
I used to joke that the only way to get me to the doctor was by ambulance, that is not funny to me after waking up in the ER too many times with some fool asking me questions like, "do you know your name? Do you know where you are?" Such stupid questions asked by... someone, but I don't know who... and I don't know where I am, and I don't know my name... The first thing I recognize is the sad faced lady sitting in the corner is my wife. I cannot describe the feelings I have as I come out of the fog. As I realize that I have no control over my body or mind, and I see the toll it is taking on my family. That makes me cry to even recall those ER visits.
But you just can't tell when a blessing is clothed as a trouble! When I write the Prologue to this story it will include how I was in a decline for about 4 years with no idea to myself. I just knew my life was falling apart and I did not know why. In the moment, everything seemed normal, but unknown to me I was losing significant periods of time and good decision-making. I did not know why, but I knew I had to work harder to fix, "whatever" it was. I just could not put my finger on it. I would just have to work harder. My life, and my wealth continued to decline until I woke up in the hospital with no idea how I had gotten there. I heard some really stupid questions, like do I know my name... Of course I know my name... just give me a second...
I had been picked up and sent to the hospital as they fought to stop a dangerous extended seizure that lasted about 40 minutes. That ragged breathing my wife had heard many times as I slept did not go away after a minute or so, it turned into a full blown major seizure. My wife was extremely concerned, but she did not panic. She called 911 and stayed on the phone, rode in the ambulance, and was waiting in the emergance room when I came out of the brain fog.
As dark as this sounds, and it was, it was also the beginning of getting healthy. Had I not had such a serious seizure, I would not have even understood that the reason my world was falling apart was not due to a lack of my efforts, but had a health component to it. I had no idea until just about two months ago that I have epilepsy. 4 years in decline, 2 years in diagnoses process, now on the fast-tract to brain surgery... All because I had a Grand Mal seizure that was stuck in a repeating cycle. I had no idea what a "focal" seizure was. I had no idea that I have epilepsy, likely for my full life. If I had not had such a serious medical event, I don't know how long it would have taken me to even seek medical help. I was under the delusion that I was some kind of Superman. That I could simply outwork what ever was slowing me down. Well, that delusion went away fast.
That was all in preparation for getting on the most exciting roller coaster ever, being sick in the modern age. The knowledge and equipment we have today is truly astounding and far ahead of what it was just a few years ago. And so is the complexity of paying for it! I was accelerated up to a great epileptologist within 6 months of my first Gran Mal but I was soon stopped mid-track by the other half of medical care, insurance. That ended my seizure treatment for about 18 months. It was not until I wrecked our car and woke up in the ER with no memory of what had happened, and the death of our local neurologist, that my wife able to push my case out of our local system and back to my specialist in Sacramento.
To say it was a major fight is not giving the fight justice. I was not the fighter, I was nearly useless for much beyond "safe" tasks, like making online posts and things like doing the dishes. The fight was made by my wife. And a fight it was. She found out how the system worked, and she worked it, hard. I do not know how many people without strong advocates get good health care at all, as I was not up to the task of fighting for myself. If I did not have a strong and smart advocate, I would still be in the cycle of minimal care and just increasing doeses of standard meds.
Those two years fighting to get good care was a lot like paying for your coaster ride only to get in the long cue line to board the heart-pounding thrill ride.
The day the specialist called and told me to show up for a week-long test in a week! Even though I was shocked by the out-of-the-blue phone call, my wife told me we had met with her before and this was an expected call, but I had forgotten that part... [Damn it!]
That testing was like sitting down in the seat of the big coaster ride. Click, click, click, click, click,... The next week she called me in for the follow-up. That was like reaching the apex of the climb and starting the see the drop you were headed for. In a calm and reassuring manner she told me that drugs could not control my seizures but the good news is that I am an ideal candidate for Brain Surgery... Now scream... that was the first big drop, first I held my breath until my lungs burned so much the scream just escaped. That drop seemed to last about a week!
As I hit the bottom and got some breath in, I was started on a new drug. Click, click, click, click, click,... A powerful "controlled" drug that has many side effects, but has stopped many seizures and stopped those I still get from progressing into more serious, longer seizures. But this drug is VERY expensive and I was focused the drug rather than the bigger picture. I was focused on the fight with Insurance to pay for this drug. The fight so intense I did no notice the, Click, click, click, click, click,... until I was at the top.
The Neurosurgeon's office called to schedule my meet with my surgeon.
Now scream...
What, a tech called? He wants to schedule my PET scan... the tech asked me a bunch of prep questions, about half of them about Cancer.
Wait, it is a double-bump, up and down again... Now scream again... Wait... breathless...
--- BREATH ---
Okay, I have had two MRI, an EEK, two EEGs, What is a PET scan?
After I hit the bottom and got my breath back, I did some homework. First I was very surprised about the PET scan, but my wife said I should not be. That my Doctor was giving me the long list of protocols leading up to surgery in parts, as not to panic me. That did panic me, but my wife said just look at me panicing getting it bit by bit...
So after doing my homework I discovered that about 90% of a PET test is to find cancer, but most of the other work is to find areas of excessive blood flow. The PET is for finding biological processes, like blood flow, a MRI is great to take a detailed picture of the body part, and the EEG is used to record the electrical activities of a part like the brain.
Yes, they will test to rule out cancer (I pray) but the test is to help detail the exact part of my brain that needs addressing. A cancer mass like looks pretty normal when small to a MRI, but has very little blood flow to that mass that a PET can show. But the converse is the case for the seizures in the brain, they have excessive high blood flow to the seizure-causing area of the brain.
So it all is starting to make sense, BREATH.
Well, I can see that this coaster ride is better if you don't know the next turn and drop. I have faith in my doctor, and my wife, and the Lord, so I am just trying to enjoy the heart pounding thrill ride.
I will hold on with iron fingers as my heart rushes.
What is that sound? I think I hear it coming. Yup!
Click, click, click, click, click,... What next? Who knows, but what a ride. Hang on...
Cris Alarcon, August 3 2018.
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Part 1 "Provoked Seizures and what I learned from a week in an EMU"
http://inedc.com/14/provoked-seizures-and-what-i-learned-week-emu
Part 2 "Brain Surgery - It Just Got Real"
http://inedc.com/14/brain-surgery-it-just-got-real
Part 3 "Major Illness is Life's Best Roller Coaster"
