So. The big phone call happened this morning. I was getting anxious on the hour leading up to it, which isn’t very normal for me. I’m a pretty calm but introverted person. But while sitting at work for the first time this morning my heart was beating faster than normal and I was having very unusual anxiety about this phone call. I had to calm myself down and take deep breaths, reminding myself repeatedly that it’s just a phone call, there’s nothing I could do to change the situation or make it better. I tried distracting myself by focusing solely on my work, until a couple minutes before 11 I finally headed out of the office down to my car to take the call, since my office is more of a wide open reception area and I wanted a private area. My boss had offered his office but I just needed my place walk and move as needed (which was for the best because when my call done and I came back, my bosses dad was hanging out with him in his office). Anyway I was in my car waiting for the call trying to breathe steadily and the call is not coming. Eleven o’clock passes and I’m thinking give him some time it’s fine. Ten minutes pass and I’m getting a little concerned. Was I supposed to call him? Does he have my number? Should I call his office? No C. Calm down. He’s a dr. He’s probably just ridiculously busy, he’ll call as soon as he can. Which, a moment later, he did. And boy oh boy did he dive right in.
He introduced himself and started right off with every question under the sun. Am I right or left handed? My height and weight. Do I have allergies? The list went on and on before he got into the questions regarding my actual seizures. How often do I have them? Do I sleep on my stomach? I shouldn’t in case I seize and suffocate myself. Also, right when I was in the middle of explaining how over the last 5 years or so I’ve also started having these absent seizures while awake on top of the grand mal when I sleep…. I guess I had one on the phone with him, which was bitter sweet in a way. Since it solidified what I was saying and moved him to put me on the high priority list, but also caused him to say I can no longer drive. And that if I do drive, he will suspend my license. Now I knew in a way it wasn’t the safest thing for me to be driving anymore in case one happened while I was behind the wheel, but also…. Like wtf?!? Like how am I supposed to live? Like how do I get to work or take my kids to school or get groceries? In my mind I’m thinking I’ve lasted this long and been fine, I should be ok however much longer 😕. But I agreed I wouldn’t drive anymore… and then I drove home from work and picked up the kids on the way but common how else was I supposed to get home? But anyway, he said since I’ve been on more than 2 different medications (4 to be exact) I have what is called drug resistant epilepsy and he’s not very hopeful that plan A will work but we always try this path first before surgery. Plan A is adjusting my meds and adding an additional medication on top of it which is a new medication on the market which might help. Plan B is surgery and he says he’s already putting me on the high priority list to get in for the pre requirements for that which are:
-a blood test to see the levels of my current medication which can be done in my city
-a more in depth MRI. I had one recently but it didn’t show anything and so he wants one done of a specific area at a certain clinic that apparently doesn’t more in depth fancy ones. I don’t know he was using a lot of high tech doctor lingo.
-a trip to Vancouver epilepsy clinic (don’t know how I’ll drive there lol since I’m not allowed to drive) where he wants me to stay in his clinic for a week or two hooked up to a bunch of wires that will monitor me 24/7 to track my seizure activity and get a sense of where in the brain they are happening.
-another EEG. I’ve had about 5-6 in my life maybe more but he wants one done at their clinic and maybe while I’m asleep to possibly get a recording of my seizure.
-some test where they give me some sugar substance I didn’t catch the name and it flows through the brain. Then the machine tracks the substance. I guess the ‘dead’ parts of your brain don’t illuminate the sugar stuff as much as the rest of your brain and could help track where the seizures are coming from.
Tbh, it was a lot to pay attention to and digest at this point. I was just trying to figure out how I was going to get to work or take the kids to school let alone drive 3 hours to Vancouver for all these tests. Or who will watch my kids. It’s all overwhelming to say the VERY least. Then, paying for taxis everywhere since Uber doesn’t operate in my city and I looked up buses, it takes 2.5 hours to get to work and that’s one way. Since I live on one side of the lake and work is across the bridge in what is technically a different city so it’s different buses. It’s just more additional stress.
But after driving home yesterday I called my mom and told her the jest of the phone call. I decided that if I have to not drive for however many months from now until if I get surgery and then after surgery I’m not allowed to drive for a year, I might as well sell my car now. I’m not going to pay insurance to leave it parked for a year+ and it’ll just be worth less by whenever I do want to sell it. Plus I’ll just be tempted to drive constantly trust me. So I’m going to call my Uncle who lives in town here to see if he can help me sell it because it is NOT something I’m good at, and I just don’t need that on my plate right now. I know its not worth that much, but it’s better than nothing I guess.
So. Apart from my car drama, he’s putting me on an additional medication and will be booking me in for all those things I described above on the high priority list. I asked him what kind of timeline high priority means, since I love a good schedule and to be able to know. But he said it really depends on how many people are on the list already, if any at all. Could be a few weeks could be a year for each test depends. 😒 I was not impressed. All I could think about was back to my high school days riding the bus. The town I live in now doesn’t have a good bus system so it will either take forever to get somewhere on the bus, or cost a zillion dollars to take the taxi since we don’t have Uber. Why I ever moved from the big city out here I’ll never remember.
But he did end the phone call at least sayin we would work through this and hopefully get better. He knows I’m a single mom and I appreciate that he’s trying to ‘fix’ me quickly. It’s honestly more than I can say for any other doctor that I’ve been to.
Now if only I had a personal chauffeur. 😏
I’ll be your Chauffeur/ David J