January was an extremely rough month. The weather was much colder and icier than we’re used to, so we spent way too much time in the apartment. February isn’t much better and we’re still generally feeling pretty stir crazy, especially Kris, since he’s so limited in what he can do. I just started volunteering with a food pantry and soup kitchen on Monday mornings, so it’s been relieving to have some interaction again. I wish Kris could get out and see people. We’re having a pretty difficult time emotionally. Being alone inside all the time leads to asking a lot of internal questions, reflecting on regrets, and worries about the future.
We didn’t make it to Arizona. I ended up taking Kris to the emergency room to have his heart monitored. What would have been a 2-hour direct flight from Seattle was going to be 10, with connections from here – so I’d be much happier making that trip from home. We already know that traveling makes him much worse, so I don’t know that he could survive another exacerbation of his symptoms – his last one was worst thing I’ve ever seen anyone endure. Maybe it’s for the best we postpone it for now, as helpful as it would have been for us as we embark upon an independent review.
We’ve been able to initiate an Independent Review of Kris’s IVIG case which we hope we can use to persuade Cigna to cover his IVIG so that we can return home. I can’t tell you how important this is to us, but also just how much stress this puts on us. It requires a lot of our time to organize it and effort from our doctors to submit the data and the arguments for our case. Please keep us in your thoughts, meditations, and prayers. We would really like to come home.
Last, but not at all least, we lost our beloved pet rat Tuna and discovered that our other, Blose, is very sick and has limited time left with us. I know this might not seem like a big deal for a lot of people, but they weren’t just rats or pets to us. They were a part of our family and for two people who want nothing more than stability and the love of family & a home, they meant the world to us and were the glue that kept us together through hard times.