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.
