Recent inactivity has been due to our move. You see, much like Kris described, Connecticut sucked. We were a half hour away from anything, even the hospital. Our upstairs neighbors loved to do cardio between 10pm and midnight and when they weren’t, they were screaming at each other and throwing boulders (or something) in the kitchen. The local industrial facilities and plants definitely broke ordinances and jackhammered for hours starting 6am. We were exhausted and on edge. It intensified our homesickness. After driving back and fourth to Portland Maine a few times, that’s 8 hours round trip, we found a temporary sublet and I moved everything through our obscenely long hallway over the course of 9 hours and moved us in. Between trying to get settled in, not sleeping, my massive flare-up of Carpal Tunnel in both wrists (9/10 pain scale) and some sort of injury to both my index fingers I’ve been trying to avoid sitting at the computer. Unfortunately, I’ve still had to cook and do pretty much everything as normal so it majorly sucks for me right now.
Kris finished his first round of IVIG and is scheduled for his next infusions next week. His latest batch showed up the other day. Never ceases to amaze me how easy the process of getting it has been.
Other than that, we have DESPERATELY been trying to be normal. I’m able to walk places again, which is really nice. Grocery stores and coffee are only 4 minutes away. While this move hasn’t been easy or everything I hoped it would be, I have no doubt moving here was necessary to our emotional and physical well-being. Now we can do normal things – starting with getting a Christmas tree. I was pretty hellbent on getting a tree this year – We need it for morale now more than ever, something resembling a sense of home, so we even managed to go to Home Depot together. Felt good to just do something together.
I’m grateful to be in somewhere resembling Seattle again and while Kris is too, the emotional toll of all this is still very intense for him. He is really devastated. He wishes he could have a second chance at life and wants to go home – to Seattle, or back home to New Zealand. Because of this illness and our current circumstances, neither may be possible, maybe ever again. It’s really awful and I keep counting on stumbling upon a solution that doesn’t involve abandoning treatment. I’m trying not to get let down by this myself, but I guess being insanely busy and exhausted is keeping me from focusing on it too much. Unfortunately, as we get closer to Christmas, I’m finding myself sad that I couldn’t see certain people or have a nice holiday dinner with our loved ones. I wanted to have a couple of people over this year with holiday catering by Veggie Grill. But alas, it looks like it’s just and the rats this year.
Our friends back home and New Zealand knew how down we were and sent us a lot of wonderful gifts this year. I can’t even express how grateful we are to be remembered when we feel so alone and abandoned. While we’ve opened most things, we managed to put a few under the trees.
Jennifer sent us her amazing Sugar Cookies. Definitely a taste of home.
Earlier this year, I spent MONTHS on the phone with Mayo Clinic trying to get in to see their Neurologist who is world-renowned at treating auto-immune neuropathies like Kris’s. Unfortunately, because our new insurance policy is very restrictive and we can’t afford to fly to Arizona (not to mention, the physical toll) we will not be able to go. I was considering doing a GoFundMe so we could make the January appointment, but because we are probably $17,000 in the hole for our emergency room rescue dose of IVIG, we will need all the help we can get paying that off. It hurts me to think of all the effort I went through to get this appointment and I want Kris to get the best care possible. It doesn’t sit right with me but I guess we need to be realistic about the limitations we will now have for his care being in New England under this shitty HMO.
Meh. I’ll keep wishing for a Christmas miracle.