This is an update of my current status. I am quite happy still with my outlook since my HSCT in Dec-2015. My wife Patt and I have been doing pretty well. We have been welcoming a number of visitors over the past few months. Especially leading up to and including Labor Day. It was more and longer than initially expected. This, giving me an extra few days to cook. I love it but would be remiss if I didn’t complain about it!
My Grandkids, along with a few of my nieces and their families visited for Labor Day. One of my nieces was earlier, due to Hurricane Dorian. She lives on the east coast and was evacuated. She was coming anyway, so she got here early and depart later in the week than originally planned. It was great to have other people around. Though I can drive to get grocery to the department store still. I don’t do it much, and that is really the only times I head out. Except when the wife plans something with neighbors are friends. This is rare, and I don’t always choose to be included.
That is a byproduct of MS. I guess I should explain this more accurately. The HSCT procedure is not the reason for my intermediate listlessness. This is mostly a side affect of two things. First, my continued loss of mobility. Nerve damage, for me was severe enough, not to be recovered after the HSCT. A lot of people with PPMS, do recover a lot of their mobility. You must remember however, any recovery of abilities lost due to MS, is not the purpose of HSCT. There has been no new degeneration so I’m happy.
No, I have to take numerous medications for different reasons. I have pain in my jaw that is worse than anything I’ve ever felt before. The medical Acronym is TN, that is for Trigeminal Neuralgia. I also have Spasticity in both legs, Constant Lower Lumbar pain, controlled Diabetes, controlled High Blood Pressure. I take pills for everything mentioned. Due to all the meds (I no longer take anything for Multiple Sclerosis), I sometimes don’t have the drive to get moving. It’s not depression, which is hard to explain to the medical community.
They want me to take valium or some kind of Anti-Depression medication. Even with the meds and symptoms I still have, I will never forget how fortunate I am to still have the abilities I have. Remembering how fast I went from running, golfing, bowling, and more, to losing it all, to include working. The doctors told me there was no brake I could press, to stop the downhill slide. We MS (Autoimmune) Warriors, are still trying to change that.
What ever happened to doctors being the advocate for patients, not the big Pharmaceutical companies. If your doctor has pamphlets about certain medications in a more prominent place, than the pamphlets describing the physical ailments. He/she is probably getting kickbacks. If your doctor offers you free samples of medication, He/she is probably getting kickbacks. Not sure what happened to the Hippocratic oath. They must either just pay it lip service, have their fingers crossed during the recital.
SEP
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.