I’m not even sure when the last time I spoke with anybody on this blog was, but I am so sorry that I have been missing for so long. Steven and I had a crazy 2015, and I honestly don’t even know where to begin. Obviously, I am always open to questions, because I always think my experiences can help others. I have asked my husband to do a bit of personal writing about this last relapse experience, mainly because his brain was functioning much better than mine was. LOL. Also, I don’t think you can fully encapsulate a situation that a family endures if you are only talking to one member of that family. So, without further ado, I would like my husband to tell you a little bit about how I forgot who I was, and about died last November.
Somewhere around the middle of last October Amy got to the point where she was no longer able to stand up using her sit-to-stand lift. From there it was a fairly quick decline into not being able to move her legs at all. The spasticity also massively increased around this same time. She was admitted to the hospital and spent about 2 weeks there getting steroids and plasmapheresis. The first couple of days looked promising as Amy was able to stand up with the help of myself and the physical therapy people. However about the third day she went back to being unable to move her legs. Finally it got to the point where she was done with the plasmapheresis and steroids and they started the discharge process. At this point she was also much worse than when she went in.
The hospital we were at is a teaching hospital so there is generally a couple of doctors who oversee the care for multiple patients, however these are not the doctors that actually see you. You get to see the residents and the med students instead. We were given a referral to see the doctor who was overseeing the care of my wife, however he would not be able to see her for 2 months. I asked the residents and the med students what I was supposed to do given the fact that my wife was worse now than when she went in, and was still declining. They told me I would be able to talk to the doctor at the clinic appointment… 2 months from now. I reiterated this question to multiple residents and students, but they all gave the same answer, see the doctor at the clinic appointment. Discouraged once again by the modern medical system, I took my wife home.
Over the next couple of weeks Amy just kept getting worse. She started to refuse to eat anything, and was sleeping around 14 hours a day. One morning around 4:30 i woke up to Amy talking. She was muttering something about how the search query was too broad and was returning too many results. While my wife knows her way around a computer, I have never heard her utter a phrase like this. This kept getting worse and worse too the point where she would literally be randomly talking about things. The best way to describe it would be like if you were talking about something and then mid-sentence switched to a completely different topic, and sometimes this would turn into a run-on sentence that would lead you through multiple topics.
While Amy was still in the hospital I had called and scheduled an appointment with Amy’s stem cell doctor to get her in for another treatment. The appointment was for November 20th, so I knew I just had to wait until then. That 20 days was probably the longest 20 days of my life. I can’t even begin to explain the process of watching someone checkout. It was like there was this person there who looked like my wife, and sounded like my wife, even smelled like my wife, but it wasn’t my wife. It was like her brain kicked into some sort of autopilot mode that was randomly dumping information because it didn’t know how to stop. It was like there was no filter between her brain and her mouth. She was just there dumping information that may or may not pertain to anything around her. A lot of us started to realize how quickly she was going down.
We obviously did make it to Chicago for Amy’s stem cell treatment as this blog wouldn’t be here today if we hadn’t. But that trip and the results are better left for future posts. It would definitely seem that Dr. Ritacca is a guardian angel.
At some point during all of this we decided to not continue to pay for hosting for Amy’s website. I took a backup file when we did this, however I was unable to find my backups of the images for the site. I have restored what I could find, and may or may not at some time go back and put images into the posts that are missing them. ~Steve
Dont’ forget to stay tuned. I don’t plan on checking out again anytime soon. ~Amy