A “MONTHLY” I CAN LOOK FORWARD TO

I thought I would have more to write about with this blog, but a lot of my posts were just working up to the present. Turns out my life is pretty boring, lol. But, I do have good news.

I am currently sitting for Day 2 of my infusions at the hospital, and it has been 4 weeks since my last one. I have been doing 2 days every 3 weeks since I was diagnosed with CIDP in July of 2021. So this is huge for me. The extra week didn’t affect me adversely at all. I kept monitoring myself, was it harder to open a jar, was it harder to come up the stairs, was there weakness when I reached for something high. It was a no to all of those, so I was quite happy. Maybe an extra week doesn’t seem like that big of a deal, but it is. Especially with a new full time job. It is the first time I am actually paid when I need the time off, but I blew through my sick days by the beginning of May and have had to take 2 days unpaid. So next school year when I am only needing 2 half days every 4 weeks instead of 3, it will be a much better situation.

In other news, I have been talking and texting with a gal who owns a salon here in town that specializes in helping people with hair loss, whether it be because of cancer treatments, genetic issues or whatever. I sent her some pictures of what I have going on and I plan to see her in the next couple weeks. It turns out Delilah is not going to work for me. I tried her on with the altered head band, that would help me from having to clip it to my existing hair, and it was not good. My daughter agreed.

The more I read things and monitor the LPP Facebook group, the more I am toying with the idea of shaving my head and going full on wig. If I were to decide to go with hair toppers or partial wigs, they would eventually pull my remaining hair out. And since I posted the pictures of my hair loss back in February, it has gotten worse. I continue to use collagen and red-light therapy but that takes a while to show results, if it ever will. There is a page I follow that is quite honest and brutal and refreshing, about one woman’s hair loss journey. She recently decided to take the plunge and shave her head and just wear wigs. And hers is very realistic. You would never know it was a wig. And her message through all of this is, you need to do what helps you go through life with no hesitation. That really resounded with me. I have constant concerns anytime I leave the house, that my hair loss shows. Did I comb it the right way to camouflage it? Is the hair spray holding it in place? Is it so windy all my careful work will be ruined? Is my ear sticking out of my hair? Why did yesterday I thought I didn’t look half bad and today I feel miserable about how it looks? There are so many emotions connected to how I look and how I feel others see me. I am very Judgy McJudgy on myself. I want my daughter to feel good about her mom, to look at me and think I’m pretty. To be proud when she might introduce me to a friend. I want my husband to still see the person I was, with pretty blond hair, confident that even though I am getting older, I still got it. Unfortunately, my insecurities leave me feeling none of that is true. So the idea of getting back a full head of hair, even though it isn’t really mine, is certainly appealing. It would bring on a whole new set of insecurities, I do realize that, but that set seems a little better than the ones I have now. They look more like, will people realize it is a wig? Will they look down on me if they do? Do I really care??

So the saga continues. I am anxious to see my neurologist in the next couple weeks to see what the plan is and I am anxious to meet with the hair dresser about options for me. I will keep you posted.

Peace out.