My Story- A healthy or maybe unhealthy perspective

 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 circumstances. Things have been good after all. 

Last year they came out with a generic version of my DMT. (Disease modifying treatment) Naturally, insurance said I had to switch. I called the pharmacy- did you know that when the generic is released, the name brand price spikes. Like it went from approximately 8k per month to 15k per month. The generic is about 5k. Not so fun facts. 

I lost my assistance because it was only for the name brand. I had a surplus so it was ok. I finally found some assistance last month and it was time to order so I did. I have learned the generic CAN have different side effects than the name brand. I think I knew that, but didn’t KNOW that. So I started it a few weeks ago and started having awful headaches. Not migraines just bad headaches. I asked in my aubagio group and many people have had increased side effects. Some say they passed after a few weeks. No big deal. We can do hard things after all.

Last week it became more than a headache. I had what we believe was a really bad migraine. I couldn’t walk without holding on to the walls/furniture. It scared me. I cried. It scared my kids. It scared my husband. It scares my coworkers who I had to call at 6:30 in the morning so I could tap out. They were all amazing by the way. They just took my load like it was nothing and handled it. 

We had to go to the ER. They were wonderful to me. My nurse was named Jamie. She was so kind. I was so scared. They scanned my head, drew my labs, and we landed on a bad migraine. Beat case scenario, truly. I can walk fine. That is pretty big. It is one thing to know you could lose your functional ability at any time. It is another thing to think it is happening. 

Today, I am so thankful for so many things. I am still scared. Emotional. Tired. So tired. I am not “normal” yet. Daily migraines. Fatigue. So fatigued. Dizzy spells. I m super lucky to have the provider I have. We started me on a steroid dose pack today. If that does not work, we will try depakote. Then if that is not the answer, an infusion. Today my text to her was- am I limited to just 3 days of nurtec😂 Brenna is so patient with me. So kind. 

This will pass. I dont plan to restart treatment until I feel normal again. I think I can stop for 2 weeks without concern. 

This is a journey. I am often reminded of how lucky I am and sometimes I feel guilty for feeling so sad, angry, scared about it. I see people with the same diagnosis and a different fate. I feel lucky and blessed amidst the negative feelings.  I am acutely aware that I have it “easy” in comparison to so many. That is an unhealthy dose of perspective in some ways. It is healthy in others. I have to remember not to compare my struggles to theirs. Remember that it is OKAY to not be okay. It is OKAY to recognize and name my struggles. It is also OKAY to feel so so lucky that I have as few struggles as I do. Some days the struggles are mountains to me. Some days, they are simply an ant hill I can step over.  Both days, I am ok. Even if OK is sitting in a chair on a heating pad waiting on bed time while I enjoy my family. Because so many days OK means doing it all. 

If you made it this far. Thanks for the support. I’ll take some prayers and good thoughts if you have them to send. When it is hard, writing it out helps me process. Even if no one reads this, it acts as therapy to me. Sometimes writing it down helps me release it❤️

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