After about a month of non-stop craziness it feels like this week we can finally relax a little bit. Without doubt this has been the busiest time since my diagnosis and it seemed to come with such a flurry. Finally gaining approval from big-insurance, I quickly made my first infusion appointment a week later. The initial treatment being 14 consecutive days of IV infusion of this newly approved drug. While at Stamford Hospital, I decided to get a permanent Port inserted in my upper chest to make these infusions easier in the long run. It was a good move, but it’s still a minor surgical procedure that wasn’t fun. Add in scheduled visits to various doctors, therapists (OT & PT) and a trip to the ALS Clinic in New Britain, CT and I’ve been running on fumes.
I’m also looking ahead and being proactive in receiving some of the medical equipment that I’ll eventually need for my home sooner or later. Three of these devices were delivered last week and well, I’ll just say it… it’s freakin depressing that I will eventually need the use of these aids and devices. Already having lost the use of my legs has helped get me tougher emotionally. Its also helped that I do have the cool Cadillac of all power-wheelchairs (of course w/ my Dead Head sticker on the back.)
But in the end… there is no real stopping this train as this disease takes away so much in its path, the biggest being one’s independence. As I do everything I can to slow down the train and fight with all my might, this is all a part of the journey. And I’m really trying everything… gov. trials, multiple modalities of therapies, trips to my Connecticut Medical Marijuana Dispensary. I even just made an appointment today to visit Mass General in Boston to see one of very top neuromuscular doctors in the world. #NeverGivingUp
Man… just typing all this out made me exhausted!
So now that I’ve got that off my chest, this week marks another full year with lots accomplished. Thanks to Facebook “memories” I was alerted that two years ago I brought the kids down to Florida to visit family and friends. In these photos I was able to stand on my own two feet, but just outside the frame of those images were my arm-crutches. We had a blast. My daughter Lindsey is in Miami now with her girlfriends, again staying with our life long friends Matt and Jill. I’m so grateful.
Last year at this very time I was just moving into my awesome new apartment. I cant believe I’ve been here a year! I have full access to everything in a big space, right in downtown Stamford. I can go out and ride around town, hit all the restaurants, stores and parks. I couldn’t do that a year ago. So this has been a huge blessing.
Most importantly, just about a year or so ago Lauren came back into my life. She’s given up so much to become my full time caregiver. I would be lost without her tireless strength, support and compassion. Sometime soon I’ll probably write more about how this remarkable situation came about. But it’s meant our little family unit is close together once again, and I don’t have to fight this battle everyday all alone. It’s not easy taking care of a pain in the ass like me… she’s an angel!