No Map Needed

 We are a few years in to this adventure that we never signed up for. Most days are good. Some days are hard. Some days I can do it all. Some days I can barely do anything at all. Every day I see people who struggle more than I. Each day I have a healthy dose of perspective to remind me how blessed I truly am.  July of 2020, I had 1 lesion. July of 2021 there were 5. I have held steady since then. I gained weight and lost hair. I grew hair and lost weight this year. Thank God for small victories. :) I have learned that summer is full of anxiety. Maybe because it is the anniversary of my diagnosis. Maybe because I am always convinced my scan will be worse. Most likely it is because heat makes me (and many other MS’ers) have crazy symptoms that convince you the disease is progressing. I keep waiting for the day that I am not scared of my own body. When ai can just KNOW that those weird symptoms are normal. I am better at it. I am better at not being hit with grief over my circum...

 So we are approaching the 2 year mark. I scan next week. I expect changes, but hope every malfunction of my body is stress related. It has been a hard year. It has also been good. I am so grateful for so many things, but it has been so heavy. There has been so much good. So many things to be thankful for. I could have lost my mom. That is a thought I still struggle with. While I watch her learn to navigate her new normal, I am so thankful that she is no quitter. That she admits what is so very hard, while also thinking about what is such a huge blessing. I find myself reminding her that is is ok to not be ok. It is not supposed to be embarrassing to admit when you cannot keep up. But it is. And I get it. Mom has a week of work left. And we have so much riding on faith. Everything will be ok- but ok is relative and no one knows what OK looks like. At the end of the day, I still have my amazing mom. I get to have more time with her now. I am so happy about that. I am also so damn sa...

 So, I had my follow up appointment. Before my scans, I tried to prepare myself for it to have changes. I had 2 flares after all. I WAS NOT PREPARED. I wanted to be. Tried to be even. I was not. I had to go alone to my appointment, and there was a resident. She started by asking me if I had decided what medication I wanted to switch to. That was not the way to go. I just cried. You see, I did not know that would be a question. My lesions were not active. I HATE change. It got better from there.  Dr. Chenault came in next. She told me it was reasonable to presume the lesions were from my flares last fall. I do not have to change treatments yet. I have to see the pulmonologist next month. If she thinks my sickness and breathing troubles this summer were related to my aubagio, I will have to change. Then we will rescan in December. If pulm clears me and my scans are normal, I get to stay the course. If there are changes, we will face that then.  In other news, school has sta...

 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 diagnos...

 I was talking with my friend “Ellen”(I must protect her privacy LOL) the other day, and she had a great deal going on. I said I am so sorry, I know it will be crazy. Her reply was, It’s no step for a stepper, and I am a stepper!” This was just another kindred spirits moment with my friend. I told her I do not hear that saying often, but I like to say it and it is one my mom often uses! It got me to thinking about my disease and my struggles. How I am and will always be more than a diagnosis. How every day is not hard. And on the hard days, It is no step for a stepper and my momma raised a stepper.  You see, Ellen and I, we see people who have really big struggles. Struggles they may or may not recover from. We help them as much as we can. We have bonded through our love of these people. She reminded me of this phrase that is motivational to me. She is not a quitter. She adopted that phrase long ago, like me. And I am not a quitter. It really stinks to have to say no. To not g...

 MS is not a pretty disease by definition. There will always be beauty in its parts. There will always be lessons learned. There will be laughter. There will be friends made. Some days I get to encourage others, and that is amazing. Some days though. The ugly side is bigger. It is meaner. It is just harder.  Recently- for the last 3 full weeks-I have dealt with that. The knocking down of my once too good immune system is hard. My sweet boy caught a cold. He shared it with me and I cannot recuperate. Upper respiratory became lower respiratory which became bronchitis.  Steroids. Doctors. More doctors. So damn grateful for my physician friends. The ER. I hate the ER. Not the people working it, they are heroes. The situation of the ER. The people who use it for their PCP driving the cost of healthcare higher. The chaos of the waiting room. The fear and anxiety. The needles. I hate it. I am thankful it exists, and for what they did for me.  This last 3 weeks has taken a t...