My Story : what is fine?




 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 sad that her body forced this choice on her. That she has lost some independence. Ultimately, when the sun sets, we all know that we have her and the gift of time. Nothing on earth is more valuable than that sweet time. 

I am so grateful for so many things. The last 2 years have changed me. I hope for the better. I have struggled with pain. Muscle spasms, but I can still walk. My bladder fails me, but I am still independent. My vision is fuzzy, but I CAN still see. My body does so many strange things. Stress has such a visceral response in my body now. That is a new thing. But I am still living a very normal life. 

When I was diagnosed. Do you know what I heard more than anything else? And it os OK. We never know what to say. I heard this person has it and they are fine. That person has it and they are fine. And are they “fine” or afraid to tell you the truth?You see, fine is relative. And sometimes, we just need someone to sit with us in our grief. To recognize our fears. And help us find fine. And you know what? Everything IS fine. I am very open about my struggles. I am open about my diagnosis. I am open about saying well- I have x,y,and z so I am unavailable because my body needs rest before I can do the fun things again. My therapist says I am normalizing invisible illness. I am still trying not to be embarrassed to admit it. And hating that I may miss out. 

I never want to be a downer. Not a complainer. I also do not want to be a liar. I want to be more than fine. And I am. MOST of the time. Most of the time, things are normal. Until they are not. When they are not, it is scary. Is this another attack in the war on my body? Is this a stress response. Is my vision damaged again. Will it pass with rest? Will I have to be hospitalized for IV steroids. Will I be able to do them at home. Will I need them at all. Is it all in my head- figuratively not literally. Because when it is literal, it is permanent damage. Will more of my hair fall out. Will it ever all be curly, or just the new stuff from what I lost. Will I have to change meds and learn new side effects. Am I still a good mom. A good wife. A good employee? I am more of a patient advocate. Because one day, someone like me will have to fight for me. MS meds are EXPENSIVE and I may be that patient that nobody wants to take. That is a hard pill to swallow. 

But here I am. 2 years in. I am still ME. It did not ruin my life. My kids are happy. We play. We live. We talk about the hard things. We laugh. WE LIVE. We rest when we need to. But we have not stopped living. That is the best part. I don’t know what I feared this day would look like exactly. Or what I fear for the future. I know I do not live in fear. I monitor my boundaries and work to expand them. I know that I may never have another attack. I may run the MS walk course next year. I know that I laugh every single day. I know that I am surrounded by people I get to love. Who love me. 

I have an amazing husband. I have beautiful children. I have a mom who is wonder woman. I have my emotional support dog, Blanche and her psycho sister Rose. I have a job that feeds my soul. I have friends who make me laugh and let me cry. Life is good. And when I scan this week, no matter the results, life will still be good.  In the instance I am not fine (for a miment), just sit with me in my grief. Only processing it makes it better. And I will be fine. I always am. Life will still be good. There is so much good. ❤️


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