Today is the first day of March! It’s hard to believe that one year ago today we had no idea we were about to enter a Pandemic. March is also Multiple Sclerosis Awareness month and I want to share with you why that is so important to me!
In 2012 I met my soulmate. From our first date (which may have lasted 3 days), we knew we wanted to be together! We traveled, did lots of home projects and enjoyed an active life. We got married in 2015.
Then one day in 2017 (only a few days after this picture was taken), my husband sent me a message describing the symptoms he was having “just in case I needed to tell someone later.” I was at work but I rushed home to find him confused and sitting on the lounge chair. He told me his left side was numb and his face was droopy. He refused an ambulance but we lived near the hospital so I rushed him there.
He was admitted into the stroke unit immediately and began a lot of tests. At the time, he was 47 and in great shape. He worked out twice a day and ate pretty clean. He had only recently retired from the Army. As the days went on, we learned more and we were told that there was good news. He didn’t have a stroke, but instead they gave him a diagnosis of Multiple Sclerosis. What was this and what did it mean? I immediately began educating myself and trying to figure out what I could do to help my husband who at the time could barely walk.
According to Healthline, MS is a chronic inflammatory disorder of the central nervous system. It affects the brain and spinal cord nerves that send messages throughout the body. In MS, the immune system attacks myelin, a sheath-like membrane that covers and protects your nerves. It also can damage the actual nerves. Symptoms vary by patient, but common symptoms include:
* blurred or double vision
* tingling, numbness, or pain
* extreme fatigue
* loss of bladder control
* memory problems
* lack of concentration
* difficulty walking
The next two years were absolute hell! Imagine an independent, active retired military man who suddenly needs a cane because he now drags his foot and falls multiple times per day. Mentally this didn’t work for him and took a toll. I cried more days than I didn’t. I continued to read and research and pester the Neurologist.
We landed on a treatment that seems to be the right one for his body (ironically today the neurologist told us we will have to change his treatment). And we added a pump under his skin to continuously send him medication to his nervous system to help with the spasticity. He still has bad days and I don’t think he is ever pain free. But, he threw that cane away! This is the good news!
The bad news is that his immune system is barely existent and we are in a Pandemic. Even worse, the treatment he takes may keep his body from storing antibodies for Covid-19. Speaking of - he was one of the lucky ones who got Covid-19 last March. He was hospitalized for a month and even said his goodbyes to me. It was bad! I think I’m still trying to deal with the terror of it all.
There are so many morals to my babble.
- First, love and appreciate your loved ones daily. Make sure you tell them!
- Second, live your life now, don’t put it off! You never know what tomorrow will bring!
- Third, be your own advocate and don’t rely on just the doctors or other specialists. No one will care more about you/your loved one than you! Find options and fight for them!
I never expected we would be dealing with anything like this. But, together love can conquer all. It will take patience, and a whole lot of grace. It’s MS Awareness Month and I for one am thankful of the resources that were put into developing treatment options. Over the past 20 years several treatment options have been approved. Last year Selma Blair, the actress shared her journey with MS and underwent an experimental treatment. With this attention, I am confident an MS cure is coming!
Just love those special to you! And if ever you are faced with a difficult diagnosis, make sure you are running faster than anyone else to figure out your best treatment options. Be your advocate and be strong!