First off, I have an amazing health team to help treat my Refractory Epilepsy. I have a top notch epileptologist, Vagus Nerve Specialist who comes in from out of town once a month, an epilepsy nurse who is fantastic, a neuropsychiatrist who I see every 6 months, and a psychologist who I see once a month. Plus I would like to add my family and friends. Whew! What an amazing team!
Although my epileptic seizures are under pretty good control now (HALLELUJAH!) there are things I need my team to know. Epilepsy is not just seizures. Epilepsy now for me means counting my spoons ever so carefully. If you don’t know what the spoon theory is, check it out here: the spoon theory.
I always need to make sure that I don’t over-book my agenda. If I have appointments that week, I really can’t over socialize. I also need to make sure I have time to help my fiancee around the house and grocery shop on the weekends.
So, health team, I need you to know that I struggle with anxiety and depression, despite the fact that my seizures are much better controlled. I need to opt out of things last minute if I am feeling exhausted. I am doing my absolute best, but sometimes that means combating the depression or anxiety that looms over my head on a regular basis. Just because the seizures are gone, there are still things that I need to work with. Don’t pity me, I just need you to know. I am a chronic illness warrior, so I keep fighting the good fight.
Thank you for doing all of the amazing work that you do! I couldn’t get through it without all of you!!
On July 5 I finally got the VNS inserted. If you have no idea what the f*ck that is, check out a quick definition here. The surgery took wayyyy longer than I anticipated and it hurt more in the first couple of days than I thought, but I am avoiding taking the pain killers I was prescribed because it hurts my stomach a lot.
My Mum helped me change bandages today, and damn it looks nasty. There are slight stitches on my collar bone, and some ugly ones on my neck. But my girlfriend lent me this great book called “The Subtle Art of Not Giving a F*ck” by Mark Manson. I am reading the section about happiness and I love this quote: “…”Happiness requires struggle. It grows from problems. Joy just doesn’t sprout out of the ground like daisies and rainbows. Real, serious lifelong fulfillment and meaning have to be earned….”
So the Vagus Nerve Stimulator is often described as a Pace Maker for the brain, but I still haven’t had it turn on. I joke with my girlfriend and family that I am becoming a cyborg. hehehe. I still feel kinda nauseous but I have changed out of my PJ’s and am wearing casual clothes so that’s a step in the right direction. I am also listening to Boyce Avenue (check them out on Spotify!) so they are nice and chill cover songs. Life has been a bit chaotic in my family life, but I am trying to just relax and take it as easy as possible. My brother is coming home today and my girlfriend is coming over tomorrow and I have some friends who are going to visit. So other than some nausea, I am a happy girl. From now on, this blog will be written by a cute cyborg! Woot!
Sita & JoJo
Two weeks ago I had an appointment at one of the nearby hospitals to see if I would be approved for the Vagus Nerve Stimulator!! Guess what?! I am!! I will be having the surgery in about three months, which I am very hopeful for. Hopefully over time it means that I can reduce my medications which make me so tired. I am sure you know what I mean. Some days I feel like a walking Zombie, so it would be great to feel like a “normal” person again. (Whatever the f*** “normal” is).
I was anticipating that the Vagus Nerve Stimulator would be inserted before the end of this year, but it’s okay that I have to wait. I mean, ideally it would have been inserted by the end of this year and it would start to work. One of the interesting things about the VNS is that it can take some time to see if it is effective at controlling seizures. Unfortunately, after the surgery, only part of it can be taken out. I makes me laugh when I look at the diagtam of someone with a VNS; it makes me feel like a bit of a robot. I guess it means when I take an airplane I will have to carry a letter explaining why I set off the machines.
In the past couple of weeks my seizures have been more active, which is hard to manage. Especially this past week my seizures have been out of control and last Tuesday it felt like someone had stuck needles into my eyeballs on top of the seizures. It has been an intense ride! It is also disappointing because I had to miss an event that my friend bought me a ticket for.
So, that’s where I am at.
Love you lots!
Sita and JoJo xox
Sorry I have been MIA. I am prepping for TedxStanleyPark, which you can watch in the comfort of your own home if you are out of Vancouver. I will provide a link on the day of! I am speaking about- what else? Chronic illness!! It is so exciting, yet stress inducing. If I just let go and didn’t want myself to be perfect I think it would be a lot easier.
Anyways, I digress. A couple of weeks ago I had an appointment with my epileptologist. Now let me tell you, after these appointments I am usually in a bad mood all day. Not because my epileptologist is a bad doctor, but it usually brings up feelings of hopelessness and makes me think of all the “can’ts” that I perceive in my life.
Finally though I felt like I was getting somewhere! I have felt like I have been treading water for so long with regards to options and treatments. Since the seizures come from everywhere in my brain, surgery isn’t really the best option for me. But what am I supposed to do with ongoing seizures? My seizures leave me with zero warning. It’s dangerous!
We discussed the possibility of a Vagus Nerve Stimulator. It has a 40% success rate, and in medicine that is a very high percentage! Near the end of the appointment I said to my doctor, “Do complex cases like me get helped with this?” He so gracefully responded by saying “YOU are not a complex case. Your seizures may be, but you are not”. That was the best thing he could have ever said. The differentiation between who I am as a person versus what my Epilepsy and seizure condition is like is so important! To have a medical professional recognize that was awesome.
I left his office with my mum in a positive mood, and I conversed with her in the car on the ride home over the sound of the radio. I even bought her Starbucks on our way home.
If you are in a tough position with your Neurologist or Epileptologist, trust me. It can get better. My Epileptologist takes his job very seriously, and recognizes that seizures impact a person’s mental health as well. I feel grateful for being able to try something new. I will never, EVER give up.
Love you lots xoxo