It has been a while since my last post. I have been busy and though I have had the chance, I had other things to do. I don’t know that I would have been saying the same had I not had the HSCT Procedure. My MS has been stable, as in unchanging. I have another MRI scheduled in a month or so. Though, in my case, there has been no change in my MRI results since diagnosis, it also means there has been no new damage.
As I stated in my previous few entries, we were building, completing and moving into our new home. I like to call it our last home. I don’t say that to be morbid, or anything like that. I am simply tired of moving. I’ll be 60yrs old this year. Since age 19, I have been moving pretty much every 3yrs, or so. I’m tired of it and ready to set roots.
A few things have been happening over the past year which has leant itself to my not being as assertive as I have thought I would be, when it come to my therapy. We have been receiving family visitors, both blood and heart. Trying to share our feeling of relaxation and recharging of batteries. I also get to reintroduce myself as the guy I use to be. Some people haven’t seen me in a few years. I have mentally come to grips with the fact that I am not going anywhere, due to MS, anytime soon. I am a bit lighter than I have been recently. I have a true path and a renewed since of self.
My son, Carl Jones II, is married now and living nearby. He and my new daughter have kids, just waiting to be spoiled by their Grandparents! So, we have constructed our last home. It has the entertainment feel to it and we have been trying to operate on that premise. I have also started reconnecting with some of my friends and former coworkers. I lived and worked here, in Tampa, on several occasions.
I am not kidding myself. My friends never were. I have a new normal and that is of a different person. MS creates a never changing normal. I now know that. It took me a while to get it. It doesn’t mean I am less, or worse, just different. At 60yrs old, I am learning to be me again.
APR
2019
About the Author:
A little about myself: I was born Carl Levon Jones in Conway hospital in 1959 to Hazel Elizabeth Jones. I am the third of four children. My mother never married. This today would be normal but in the old days, it was different. Maybe it was the beginning of the change in view. I was raised by my grandparents from the age of 1 when we moved to Maryland. My mother was still a big part of my life, as she and a few sisters had moved to New York to try to make a living instead of the depressed south. I lived and grew up with my grandparents, brother and sister and cousins until I entered the military at 19 years of age. I spent 12 years in the Army learning to be an electronics technician, just to have computers take over the industry. I, therefore, had to relearn electronics with computers being the main focus. No, I am not talking Windows and Microsoft, but Fortran and different flavors of UNIX creating GUIs. I rose through the IT Field from the bottom, to be a Manager at different DOD Contractors. I was married to my wife, Patt in 1981. We have been together ever since, 38yrs. We had one son, Carl Levon Jones II the following year while still serving in the military. I am a man who believes strongly in family and relatives. I am as close to Patt’s family as I am to my own. Closer in some cases. Unfortunately, my rise in IT was interrupted when I contracted the Autoimmune Disease, Multiple Sclerosis in 2012, diagnosed in 2013. I had to leave work in late 2014. I have been dealing with the nerve damage(Neurological) the disease caused. I went to Clinica Ruiz in Puebla, Mexico for a procedure called Hematopoietic Stem Cell Transplantation (HSCT). It is not offered for my type of MS PPMS in the United States. A battle we have been fighting for some time now. This Blog is about my; MS Journey, my thoughts (Poetry) throughout the years, my experiences and my friends and family (Photo Gallery). Hopefully, this Blog will help at least one person in their decision to conquer the MS Beast, and help to get this procedure available in the United States and covered by the Insurance we pay so much for.