Vikki Lawrence is called "that purple mom" because she has worn purple EVERY DAY (for epilepsy awareness) since November 2013. Her son, Weslee, had his first Tonic Clonic (grand mal) seizure in 2011, and the first of many brain surgeries in 2013. His seizures are still uncontrolled. (STORE:
www.etsy.com/shop/VikkiLawrenceShop )
October, November and December were somewhat comfortable months, temperature-wise, considering it was technically winter. But when January hit and the winter storm thrust a lot of people to experience negative temps and snowbound / icebound homes, things had to change here too.
Our electric bill in December was triple what it was in November, so despite the massive temperature drop outside, I had to drop it inside as well. I moved the thermostat from 67° F to 62°, in the hopes that in case we lost power, we could figure a way to stay warm. Getting subconsciously used to warmth through layers, not necessarily a functional furnace. Plus, of course, to reduce our electric bill.
I started going around with two pairs of fingerless gloves on and always wore (wear!) my flannel jammies (except for obviously when we leave the house). There are 4 comforters on my bed. (I am old !!)
Weslee has been wearing more clothes to bed than usual, and he has three comforters on his bed, his safe space. He still kicks off covers at night so I sneak in around 3:00 a.m. to re-cover him.
My vehicle is still icebound, even though I've chipped at it it almost every day, but the ice doesn't seem to want to cooperate. It would get some lovely morning sun to help melt the ice, except for the humongous truck that is blocking the sun from getting to the ice in front of my tires.
Anyhoo, as to Weslee's seizures, they seem to be occurring less frequently (knock on wood). I hope it's because of the Xcopri RX that he started; he is on the third week now. He doesn't seem to be using the 2 extra clonazepam pills every day, or need the rescue nasal spray as often. (Pic shows the ledge by the stairs with 2 battery flashlights, a hand-crank flashlight, his rescue nasal spray and a clon pill. You might even make out the jugs of water in the background. Very handy.)
Weslee wants to go to the movie theature tomorrow to see "Iron Lung" ... written, directed and starring one of his favorite youtubers: Markiplier. He has offered to pay for it out of birthday money. What concerns me is him being there for over 2 hours, by himself, knowing a seizure could happen at any moment. He does have more seizures on days he goes to movies. I guess I will have to trust he will be fine. (I have errands to run, like picking up meds.)
That's it for now. Stay safe and warm.
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Weslee needs more brain surgeries for his seizures and I have a new cancer diagnosis.
As I have written before (last week? the week before?), the temp in our little apartment is severely messed up. Average of 20 degrees difference between first floor and the one above it. I can feel the temperature change around the 7th step on the stairs.
We have lived here since 2019, and it has NEVER been this bad. I am tempted to sleep downstairs in my chair just because it is cooler.
I bought a couple of 'personal a/c units'. Finally deĺlivered last week. Worthless. Near to impossible to turn on, and same to stay on. Going to return them.
When I picked up Weslee's med container to prepare them for the next week, I couldn't believe how warm the container felt. Some pills have started sticking to each other.
I immediately googled what the best temperature is to keep meds. Unless I moved all of our meds downstairs, they will become less and less effective.
Is this a possible contributor to the increase of Weslee's seizures?
Possible solutions:
Place meds in cooler (which I would need to buy)
Keep them downstairs, which will be a big ole pain in the hiney
Two medium boxes, lined with towels and bubble wrap (which I have)
Medication fridge (which I would need to buy)
Bug the apartment manager again
Thoughts?
........
Weslee needs more brain surgeries for his seizures. To help, please like, follow and share .. PLUS .. please go to his Medical GoFundMe or to our Paypal ... Thank you.
