The day finally came. The day I’ve been waiting months for. The day I have been reminding Endi, and him reminding me about since November. NOVEMBER!Two days before Endi’s birthday we set the car on autopilot to our favourite, er… not so favourite hospital for yet another doctors appointment.
But this one was special… ist.
Endi and I have come to enjoy our appointment days. I enjoy going for long drives and people watching, so when we have time to kill Hamilton is full of interesting things and people to see. Let’s not forget the hospital is right on Barton Street so there is no shortage of people to watch. We treat these days like a date. We try to find a new restaurant for lunch or dinner and spend that time enjoying each other’s company.
I apologize every time we go because I know this isn’t what ‘normal’ couples do. I never envisioned our dates to include X-rays or MRIs or blood work, but sometimes that’s what’s on the agenda, and Endi has never complained. Not once.
So Endi held my hand and rubbed my leg as I had my usual seizure down the highway 6 escarpment, making sure I recovered in my usual time frame, encouraging me that I’m okay and telling me to stop apologizing. It’s become a bit predictable and can be scary for someone who hasn’t seen it before, but Endi knows almost exactly which road sign the seizure will begin and which stop light it will end at and I start coming back to him. Needless to say when I did have my license I avoided unauthorized, solo Ikea trips after my Intracranial Hypertension diagnosis. I guess you could chalk one tick on the ‘pro’ side of this disease because it’s cost saving in that aspect.
On Thursday we were seeing a new doctor and every time I see a new one I’m always a little trepidatious because I don’t know what to expect. Will this one ask me for my whole life history? Will they question every symptom I have? Will they know about shunts, specifically multiple shunted patients? Will they have any idea what Intracranial Hypertension is? All of these questions are usually answered within the first three to five minutes of meeting a new specialist, and I’ve had varying degrees of good and really bad experiences. Sadly the bad experiences have jaded me to the point that I can come off rather nasty. But we have had to learn to advocate on my behalf in order to get the best answers and care.
This appointment started rather humorously as the doctor I was to see has a name that even the assistants can’t pronounce, so he said “Call me Dr. P.” So we followed him and his student doctor into the exam room where his opening statement was, “I’ve looked at all of your scans and I think I know why you’re having seizures.”
Hold the fucking phone! A doctor who did his homework? Who knew about me BEFORE I came to see him? That was his opening line? Was I in heaven?
Ok, backing up, not great news, but holy shit was I happy he knew what was going on.
An hour and a half later not only did we have more meds to get my seizures under control, but we had a solid plan of action including what looks like a whole week of seizure induced fun at Hotel Hamilton.
He surmised that I have what’s called epilepsy from scar tissue. So what happened was that during one of my VP shunt surgeries I had a small brain bleed and when the bleeding stopped it created a scar on a part of my left frontal lobe and is causing it to misfire. Very similar to if you cut yourself and you get a scar on your skin, only mine’s on my brain and it’s inconvenient. He even gave me a picture of my brain with the exact spot that’s causing the problem.
Good news, it’s treatable. Medication could help, so we are trying that first. Secondary treatment is another surgery. This one would be very different from my shunt surgeries, but he promised I would not be awake or smell burnt toast.
Bad news, odds are 15-20% of this working. But I’m a gambler. I’ve been known to play a good game of poker in my day so I’ll put on my best poker face and go all in.
The rest of the day I enjoyed with my best friend, the love of my life. We had dinner and talked about the appointment and other things that are going on before heading home to the family.
It’s a little weird to say I’m looking forward to my next doctors appointment, but I am. The time I get with Endi is what I’m looking forward to the most.
Love you babe, thank you for our date.