December 29, 2020

Where to begin…… I am new to this world of blogging and sharing openly about my life and health journey. So these first few blogs may be sporadic and unorganized, but hey….we all have to start somewhere. First of all, my goal in writing this blog is to share this crazy journey I have been on for the last 10+ years. I want to be as transparent as I can and I believe that in doing so, I may gain better insight even into my own self and might even find further healing and truth in my own story. Christmas 2020 was probably the worst Christmas that I can remember in all of my 46 years. Yes….even harder than the first Christmas after my divorce many years ago from the kiddos’ father. That was the Christmas I had only $50 to spend on them and felt so ashamed I couldn’t do more. But I was giving them a roof over their tiny heads, warm beds for them to sleep in (even though they shared a room…..not that that is a bad thing at all) and putting food on the table for them to eat. All of those were not bad things they were just different than they had been used to. They were different than we had all been used to. However, that is for another time and discussion. Fast forward to 2020, per my Neurologist’s request (ORDER) we had no family meals or get-togethers. I love my Neurologist. In fact, my whole family loves him… as well as the rest of the staff that work with him. We have the utmost faith in this man (angel). So, when he said “no holidays” we then knew as a family that this would be a terribly hard year. As you all know 2020 has been a year of many sacrifices. Covid-19 has set up camp in world and doesn’t seem to be offering any reprieve. If Covid wasn’t scary enough to those of us with a compromised immune system I have had the distinct pleasure of adding chemo into the mix this year. I found out March 3rd of this year that my disease modifying drug I had been on for several years was no longer working its magic. By this I mean I had several new lesions. Which to my disappointment, my family, friends and support team knew that meant the search for the next step was to be decided on. Luckily, my doctor was one step (if not many) ahead of me. We talked about the options and he gave me literature on the two avenues he wanted to explore. He didn’t want a decision that day. Instead, he wanted me to go home and discuss is with my family. So on the way home I read through all the literature and discussed things with my son. He had taken me to the doctor that day as my husband was away in California working. As I read through each different drug I soon decided that the trial for Mavenclad would be my next step as long as everyone else agreed. Mavenclad is an oral chemo pill. I would take two pills a day for one week and then repeat that the next month. This I thought would be easy enough. I mean how hard is it to swallow a pill?? Wrong…..boy oh boy how wrong was I. But I will fill you in on that process in another post. As I said previously, I may have random or sporadic moments in my thought process as I type. For that I apologize. Where was I????? Oh yes, Christmas. So, it looked ALOT different at our house this year. As I am sure most Christmas’s were for many this year. I have become accustomed to not shopping in malls and public for the most part because normally the flu is out and about and so most winters are spent staying away from crowds. I do this to avoid getting sick and exposing myself to an ailment that might be harder to get over as opposed to people with normal immune systems. So the shopping from home, online at Amazon, has become quite the norm. But let’s face it….who wouldn’t rather sit at home in comfy pants instead of going out into wild traffic, crowded crazy malls, rude people, no sizes or stores sold out of that one item you wanted? Exactly….no one I know of. So, shopping wasn’t out of the norm for me this year. But, Christmas Eve came….our house was not filled with my beautiful mother-in-law, sister and brother-in-law and niece and nephew and their significant others. Instead, we had to forego our tradition of eating junk food with them, watching Elf or any other Christmas movie that happened to be on. We instead had a quiet dinner with our son, daughter and her sweetheart. We had to do this on Christmas Eve because on Christmas day our daughter would be going with her sweetheart to his family and we couldn’t chance seeing them afterwards because of my compromised immune system. So it would be another 10-14 until I can see those two again. We couldn’t celebrate with my parents or my brother and his family. So Christmas day I cried. I shook it off and tried to find my gratefulness. I had to remember that God had blessed me with another day I could be alive. I had plenty of food. I had a beautiful house to live in and a nice warm fireplace to warm up in front of. So…then I became ashamed of feeling sorry for myself. Next, I talked on the phone with my parents and cried with them. I always watch the Christmas Parade, because my dear Pepaw would always expect us to all say we did when he asked us at Christmas dinner. Even though he has been gone since 2007. So the melancholy continued and I sat looking at our Christmas tree for most of the day….while filtered noise filled the room from our television. Our dogs of course could feel my sadness and stuck very close in their way of consoling me. They always know just when to snuggle closer. Thank you Lord in Heaven for creating these creatures. I had plenty of time to think that day about things and to think about creating this blog. My dear Doctor has continuously encouraged my to start one. As well as my family. He keeps telling me I have lots of information and stories to tell that might be helpful to others. So here I sit typing my very first entry. I took a couple of days and tried to research how to start a blog and am trying my best to take a stab at it. There is so much I don’t understand how to do on and with computers, so please be patient with me as I learn.