My Story- The Year that Changed My Life

 We are a year in to this journey we never wanted to take. 1 year since my world felt like it may crumble around me. I can say I have MS. Sometimes without tears. I say it often bc I need to desensitize myself, I think. I also want to normalize it. Life is good, but there are struggles. Blogging helps release the stress. It also may help a new to MS’er one day. It is good to know that it is okay to mourn life as you knew it. It is ok to not be ok some days. I tend to come here when it is less ok. That is when I need the release of writing it down. 

This last year of isolation and loneliness has been tough. I have learned that sometimes the relationships you thought were unconditional  come with conditions. There has been what feels like an irreparable divide in relationships that were the most important to me. And in the midst of that, I was told I may have a tumor, or a stroke, or MS. MS was in many ways the lesser of the evils I was facing. I am thankful for the diagnosis for whatever sense that makes. Because it is not as detrimental as a brain tumor. Or a stroke at 39 which is terrifying to think about- those don’t typically happen just once. There was also a 10 or so day period where I had to wait to see if it was NMO and not MS. I have never seen a good case of NMO. They exist, but not in the world I see everyday in rehab. 

In all of the ups and downs, I had 2 relapses/flares. I had a round of IV steroids then later I had the equivalent in oral form. My pharmacist thought it was a mistake, “you have to take 72 of these pills in 3 days?” Yes mam. That is correct. I have fought though. Fought the fatigue. The spasms. The sadness.  The anxiety. I have fought for normalcy in a world that is so far from normal right now. 

Now I am fighting to avoid a virus that very well could be detrimental to me since I am compromised. I am vaccinated and believe it is our only answer to end this. I am fearful that I still may have trouble  fighting it. I am more fearful for my babies who are too young to take the life saving vaccine right now. 

I have made progress. When we first got back out in to the world, I could barely wake up on Fridays. By Friday night, I was in so much pain. My nerves are telling my muscles to move when I am not moving and it hurts. Now though, it is not so bad. I can do things with my kids on a Friday night. I wake up without too much struggle. We have even been able to go on some walks. My energy and stamina are improved. I lost most of my hair, and it is coming back. Some of these things seem small, but they are SO BIG. I feel better. Most of the time. I am so damn thankful. 

I am so lucky. I am so blessed. This could be so awful, but it is tolerable. More than tolerable, it is OK.  I am not surviving. I am thriving. There are moments that break me, but I don’t stay broken. And you know what happens when broken things heal? They make scars. Scars are stronger. So we can be beautifully broken. 

This last year has tested me. Tested my faith, I have been angry at God. I still have faith though. It has tested my strength, my family, my abilities. I feel like I have passed some tests and failed some as well. 

I had my 1 year scans last week. I have new lesions. That was a gut punch. I FEEL BETTER THOUGH. That gives me hope. I do not want to have to change meds. I see my Neurologist tomorrow. I will find out what the plan is then. I will learn if I have to face a new change. I hate change. It seems life has been a constant change lately. But I am learning to pivot and make a new plan. 

I am so thankful for my family and friends who have been there. Who have let me cry when I needed to, and helped me laugh even more. I am thankful for the texts that say how are you. For the, “now tell me how you really are moments” for the people who allow me to feel what I need to feel. For the friends who make sure Terry is ok too. This has been scary for him too. He is in so many ways my hero. I am just thankful. We shall see what the next steps are tomorrow. Today, we are going on an adventure with our kids to celebrate back to school. Today we will laugh and play and make all the memories. Today will be good. And tomorrow will be too! For everyday has some good, even when it is as J.O. says, “dis is the worstest day of my life”. :)