Greetings from the Inside

The view from the inside on a prettier day.

Here’s some news.

On what is usually my favorite day ever, that would be hair day, I experienced the first bleach disaster I’ve ever had while in a professional’s chair. My hair was flying off of my head like feathers in the wind. I could see it coming off on the blue towel I was using after my hair was washed and rinsed. Not good. Not good at all. Even my hair stylist was almost speechless.

I reviewed every medication I’m taking (no connection). Did research on autoimmune disorders and hair issues (no connection). We did nothing different than we do at every other hair appointment for the last three years! It’s like a goddamn mystery.

I guess it’s a good thing I like my hair short? I guess it’s a really good thing I like my hair really short. I’m going to be really sad if this is the end of my platinum blonde phase. I know my magician of a hair girl will not let that happen. But that whole thing was traumatic for both of us. I hope we both can get over it.

I purchased an industrial sized bottle of Olaplex #2, the stronger kind that they use in the salon, and I’ve been dousing my head in it since this morning when I woke up and realized my hair was still falling out. I plan to reapply all night and tomorrow until I shower for pre-infusion preparation.

Infusion is Monday morning at 8am sharp.

I have to eat breakfast, pack a lunch, drink tons of water and maybe bring a blanket. I’ll be there most of the day. My friend Michele is driving me and picking me up because I’m getting Benadryl first to avoid any infusion reactions. Another friend from the infusion room had his first infusion last week and he said he felt like shit after and pretty much slept all day (probably from the Benadryl). I’m hoping to be back to closer to normal by Tuesday, but Wednesday is probably more likely.

I also found out that I need an MRI to establish a new baseline based on my JC virus status. I thought this new drug wasn’t a risk for PML but I guess they’re being better safe than sorry since it’s so new and they probably have no real data to say whether or not it’s actually safer for me or not.

I’ve been sleeping a lot this weekend. After a client meeting and a disastrous hair day yesterday I felt like the walking dead by the time I got home from the salon. I went straight to bed. I read some and surfed social media some. But I also slept a whole lot. It felt good. The weather has turned cooler again (like the universe knows I can’t bear the heat on top of everything else right now).

I feel like I’ve dropped out of life in the outside world for the last ten days or so. I guess that’s because I mostly have.

Maybe it takes dropping out of your life for a spell to actually make you want to live it again. There’s some logic to it. Dropping out of your life makes you miss things. Like people. And clothes and outside and driving with the top down. It makes you feel disconnected from the things that make you you so you find yourself wondering who you are now.

I’m starting to feel better about trying to drop back into my life outside once this treatment gets up and running. I’m so afraid of feeling worse. I might feel worse at the beginning, that’s just a fact. It might take a while. But it should ultimately make me feel a bit better.

Maybe once I’m feeling better I’ll be ready to drop back into my life again. Walk out the front door (even if I have to walk slowly or even give in and get a cane), but I could walk out the front door and see what’s what out there. Maybe plant some flowers. Or go out and have a drink with friends. Go back to the office and see actual people and do work in the actual world instead of doing work from my actual living room.

When I’m feeling better maybe I’ll reach that point other more “mature” MS’ers always tell me about, the point where this disease isn’t the first thing I think of when I open my eyes, the only thought behind every other thought that goes through my mind every minute of every day and the last thought I think whilst swallowing my handful of nightly meds before I go to sleep every single night.

The people who’ve had this disease for awhile tell me everything I’m going through right now is perfectly normal. They went through it, too. I appreciate them sharing that perspective with me more than anyone can really understand. The thought that this might always be the way I feel is not a pleasant one.

Maybe when I feel better I will remember how to enjoy things again, including myself. That’s what I’m really wishing for.

Less than two more days. Two more sleeps before the next seesaw of hope and fear starts up all over again. I hope this one is the one that takes. I’m really wishing that hope wins more often this time.

2 thoughts on “Greetings from the Inside”

    1. Sorry to confuse you. The larger story is about my experience with being recently diagnosed with MS. The hair falling out part was just a weird thing that happened to me at my last hair appointment that compounded my stress at a very stressful time while I was in between MS treatments and not functioning so well in general. The point of this story (and all of my blog posts really) is to illustrate the reality of what this disease does to your life. Thanks for reading it.

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