2023 THE GOOD AND THE BAD

I wanted to end the year with a post of reflection and hope.

2023 certainly had it’s ups and downs. We lost some very special people. A beloved neighbor who was like family, the last uncle left on my dad’s side and an angel named Ava who was a shining star and miracle in our family. And over the span of two months we also lost both our fur babies.

The roller coaster that is life also had some ups this year too. I started a new job that I really really like, we were able to take a nice summer vacation, we bought plane tickets to go visit family for  summer 2024, and I was able to space out my infusions more and more and am currently at six week intervals. That is great considering I was going every three weeks for well over a year.

There still is no word from the CICP on my case. I called recently just to make sure they showed they had all the documents they needed and was told they did. I envision my file sitting in some box with a lot of other files, collecting dust, just waiting for someone to get to them. In the meantime I am one payment away from getting Rush off my back.

Christmas brought family together and then sickness. It’s a good thing we are all on break because my daughter and husband would’ve missed a lot of school. I am not sure how I avoided catching anything. My immune system is supposed to be fragile and not up to par, yet I am the only one not sick, despite being the caregiver. This to me is another sign that perhaps this disease I was diagnosed with might be in remission, or at least controlled completely by the meds I take. Perhaps infusions will be out of my life for good someday. That would be fantastic, yet just today I read a post in the CIDP Facebook group I am part of talking about being in remission for five years only to have it come back with vengeance. Scary stuff.

It was my first winter break with the family, since I now work in the school system as well, and I discovered something about my self. We did some stuff, went to Chicago for a night, did some day trips here and there, but there were a couple days none of us even left the house. Those stay in your pajamas, no make up kind of days. Despite not going out in public and being around no one but my family, I still carefully arranged and hair sprayed my hair to cover all my sparse spots. So apparently I don’t mind being splotchy, pale and eyebrow less, but I draw the line at bare scalp. Vanity is a funny thing. I recently started seeing a massage therapist and she told me about a shampoo she heard about in Mexico that helped someone she knew with hair loss, with almost miraculous results. Hair loss is caused by a myriad of reasons and finding help for those reasons requires different approaches. Male pattern baldness has a different cause than loss caused by an autoimmune disease. So you really need to research and determine if something will even have a chance of being effective. The shampoo she talked about has chili peppers and rosemary in it. It comes in a giant bottle and is under $10. I am doubtful but I got some from Amazon. My hair loss has pretty much stopped from what I can tell, I haven’t noticed a lot of shedding in months. So trying something new that had fairly natural ingredients seemed safe enough. It is kind of green and gloopy and I smell like a pepper after my shower. I’ve been using it a couple weeks now. I’ll have to give an update in a few more weeks.

No big plans for New Years Eve. Lots of snacky foods and trying to entertain ourselves till midnight. It is my daughter’s favorite night of the year, she hates bedtime every night and is a real night owl.  I, on the other hand, will struggle to make it to 12 and will head straight to bed right after.

I wish everyone a Happy New Year. May this year be full of more good news than bad, (which may require no longer watching the news) and the ability to find peace, give kindness and learn empathy. Thank you all for taking the time to read my musings.

Goodbye 2023