Reviving the blog for 2018!Posted: February 22, 2018 Filed under: Day in the life, Uncategorized | Tags: disability, epilepsy, family, sibling with disability, siblings with disabilities Leave a comment
Hello, world! Again! It’s been…far too long since I’ve posted here, but I’m in a new situation with my life and have some time to write again (good!) and am having a lot of sibling-related anxieties (bad!).
To recap the past couple of years: I worked as a contract-based teaching professor, during which time my own health was really wobbly. I had a sinus surgery, I did a six-month physical therapy regime after meeting a new rheumatologist, I had far too many infections, saw too many specialists, and have a new, if not-written-out, diagnosis of something being wrong with my immune system. That wrong thing probably means I will get sick more easily than others and will stay sick longer than others, but there’s not much we can do about it except try to convince my body that it’s not allergic to everything. That means daily Claritin/loratidine for awhile. I also ended my job – a combination of my life being difficult so far from family while fighting with my body and things changing at my job; I struggled with meeting some objectives and my contract was not renewed. My fibromyalgia pain is way less bad now; my migraines/headaches are way fewer. I’ve even lost a lot of weight! But I need to move a LOT to keep that up, and I’m not feeling super right now.
As many/most sibs know: living close to/with your sib can be really different than living thousands of miles away. So expect blogging about that.
In Lily’s life, well, things have been just as active. She had a vagus nerve stimulator implanted, to help control the seizures by sending tiny pulses of electricity to her brain, effectively – one description you often hear for the VNS is that it’s a pacemaker for the brain – and we can use a magnet that we wave over the device (in her front shoulder, basically) to send a pulse to stop seizures. Which sometimes works and sometimes doesn’t, and hasn’t been enough. She had to be hospitalized due to complications from changing medications, and had to have her emergency intervention medication added as a daily normal medication. Mom was so frustrated that she started Lily on the ketogenic diet, under the guidance of a specialist nutritionist who works with people with intractable epilepsy.
Expect many, MANY posts to come on the keto diet. Particularly since we’re coming up on some Jewish holidays that involve specialty foods that Lily can’t eat on it, and we’re trying to improvise, using them as a test before her birthday. No chocolate cake – no cake! – for the woman who loves cake, in our effort to stop the seizures. It’s hard math for any of us, but really hard for her.
Which brings us to now: I am currently unemployed, living with my parents, searching for jobs and considering going to school for a master’s degree in an area other than that in which I got my PhD. Lily’s seizures are smaller right now, but not at all what I consider controlled. Mom’s health is okay, but she’s exhausted from the effort of the keto diet (and work, and her own health, and running Lily’s house as well as the family home – I’m trying to help, where I can). Dad seems okay but he’s either aging in a new way or is having symptoms he won’t or can’t acknowledge, and mostly we just get into a lot of fights, because I perceive him as having given up or otherwise disengaged with a lot of what I’m trying to help Mom do for Lily.
And with that: I need to go get in some exercise time before I help make dinner. Lily’s coming over with a supported living staffer, for modified fish taco night. I’ll be back soon!