My 8 year Diaversary with MS (multiple sclerosis) was on Wednesday. Yes, I made cupcakes. It’s a day I recognize. I wouldn’t say I celebrate it. July 22, 2012 was a day my life changed forever.
The Hubs is the part of us that asks questions. I am the one who takes in the information and then figures out a game plan. The night I was diagnosed, I was alone in the hospital. The Hubs had gone home to get our kids from my sister, who had watched them all day while I was at the ER.
The doctor came in and said something along the lines of, “Based on your MRI and CT, you have Multiple Sclerosis. Do you have any questions?”
I just stared at him. I begged my brain to ask questions. The type my husband would think to ask; questions I knew he would ask me when I called him in a few minutes to drop this bomb on him too.
I stared at the doctor. It was shift change and both the day nurse and the night nurse were holding my hands as the doctor had came in to give me the diagnosis. I stared more. Finally, I asked the only question I could think of, the question that to me, made the most sense with a husband, 2 toddlers and a bunch of people who loved me.
“Is MS terminal?”
He responded that no, I could live a normal life with MS with minor adjustments here and there. I had gone to the hospital because my leg had been going numb on and off for months and suddenly, I couldn’t feel my leg anymore at all. It was like it was just gone. It’s an eerie feeling to see it and not feel it.
Then he dropped a second bomb. He couldn’t tell me yet if I’d be able to walk anymore since it felt like I no longer had a left leg. He wasn’t sure if or when the feeling might return. He wasn’t sure if the feeling did come back, if I’d be able to walk with or without assistance yet. They would start steroids and see if that helped. Then he asked if I had anymore questions and I went back to staring at him. He told me he’d be back in the morning. Once he left and I registered what he had just told me, I started to cry. Both of the nurses sat with me until I finally stopped crying. They both gave me huge hugs. They made me feel like I was their only patient in that time.
I called the Hubs. I called my parents who were out of state on vacation. I called my BFF who had spent the weekend with me at urgent care and then came to sit with me at the hospital while they ran tests all day the next day.
After answering every ones questions (which I wasn’t very good at) and digesting this news in my hospital bed, I decided that if Multiple Sclerosis wasn’t going to kill me, than from then on I was going to do my best to LIVE every day.
Except for a very dark time in 2015 (That’s for a different blog post), I’d say I have done that.
I pick my battles, I make honest decisions about if something is worth my time and energy and if it’s not I say so instead of feeling obligated. I’ve gotten very involved with the National MS Society. I advocate for MS awareness. I share my story. I am always available to newly diagnosed people that want to talk and ask a million questions because while I am not great at asking questions, I love talking to people. I also vividly remember how scared I was in that hospital room by myself that first night.
The next day my cousin text me the number for her former boss who had MS and said I could text or call with any questions I had (She is my MS Fairy Godmother now!) A nurse from a different floor also came down to introduce herself because she was also living with MS. We talked for a long time.
If you’re newly diagnosed or living with MS, I encourage you to find someone you can talk to about MS. The National MS Society has Peer Connections. There are so many groups on social media that you can join to ask questions, there are in person support groups. You can leave a comment below and I’ll respond.