When one thinks of Multiple Sclerosis, hair loss is not usually the first thing that comes to mind. In fact in my many years of dealing with this crap-fest it rarely enters the conversation.
For the past three years in my battle with MS my main treatment has been a drug called Tysabri. It slows, and in some cases halts, further damage from the disease to the central nervous system. I was pretty excited at first as it is given via a monthly infusion which meant an end to the nightly Copaxone injections and the resulting angry red welts. In the beginning when discussing the risks with medical professionals and fellow patients, the conversation began with the really scary but rare stuff (like possible deadly brain infections) and often ended with something like; “At least it doesn’t make your hair fall out.”
In the beginning, I noticed the texture of my hair turning a bit wiry, followed by a few broken flyaway pieces at my part that stood straight up and would not lie down no matter what product I used, but nothing too noticeable. At about six months into my treatment I realized that my hair in back underneath my always straight top layer had become kinked and was quickly curling. Personally, I have always dreamt of having curly hair! I have secretly been irritated with my friends who are blessed with curls but choose to torture their hair into submission with a straightener. I briefly hoped that the rest of my hair would follow suit and I would have the curly golden locks which I have so longed for, until I realized that my curls were not the beautiful, uniform waves or ringlets written about in romance novels; instead they were frizzy, inconsistent and ratty. Soon my head of hair was a 50/50 split of curly at the back and straight in front and on top (a.k.a. business in front, party in the back.) It did not improve.
I decided to try a perm. I have gotten them on and off for years and never had a problem. I just wanted it to be all curly or all straight. Pick a lane, for goodness sake! It was beautiful… for two days when the entire top layer went flat again, but the bottom layer in back was curlier. I was still stuck with half curly and half straight!
I was so frustrated. I knew that if the Tysabri were the culprit others would be reporting problems as well. I visited a friend who had been on the drug for 6 months. She also had the telltale hairs sticking straight up out of her part. She said she just thought her gray hair was coming in with a “witchy texture.” I then went online and found forums with patients reporting everything from changes in their hair color and texture, to all out hair loss. I was shocked. No one had mentioned this to me. When I brought it up at the infusion center fellow patients and nurses confirmed that this was a fairly common complaint. With this in mind my perspective changed and I was thankful to still have my hair, albeit with a different texture and look.
I soon got into the routine of straightening it with a 420⁰F ceramic straightener, or curling it all to be uniform, or on low energy days just putting it up in a ponytail. I started investing in hats and hiding my hair up and underneath as a quick way to get out the door that did not require the daily trauma of high heat to my hair. I spent about a year or so stuck in this holding pattern.
One day I was talking to my oldest daughter who was excited that my husband, Chris had gone into the boutique where she worked and bought me an adorable 1920’s style cloche hat. She realized while we discussed this, what I was using it for. She said, “Mom, you have to wear it to be cute sometimes, not just to hide your hair.” At first, I was irritated. I thought, she doesn’t understand! It isn’t “cute.” I explained again what my hair had been doing, but she didn’t budge. She reiterated that I should try to do some new things with it. I spent a while longer feeling sorry for myself, but I kept going back to what Janelle said. I had spent two years growing it out. Two years thinking, “I’m going to look like that picture of Heidi Klum I’ve been saving.” As it got closer to the desired gorgeous length I kept adding to and checking my Pinterest hairstyle board for the perfect cut and style. I had been so excited about having it this length! I couldn’t just throw in the towel and keep it all hibernating under a hat.
I went back to Tasheena, my stylist at Bombshell Salon and talked about strategies. Here’s what we came up with.
- I decided to do something bold! If I couldn’t have texture I would have color. I am naturally blond so I decided to go red, really red.
- I had her put in some new layers to help me manage it and give it continuity while retaining my length.
- I invested in a new curling iron. I’m pretty sure I bought my old one back in the early 90’s when I was still feathering my mullet. The old basic low and high temperature settings weren’t cutting it. I bought one with temperature control up to 450°F. My hair would not curl decently with less than 400°F after its texture changed. This sped my curling time from two hours up to about 30 to 45 minutes.
- I purchased Marrakesh Hair Styling Elixir to help control frizz, add shine and protect my hair against heat in the styling process.
This is me before:
This is the end result!
It is most definitely my favorite hairstyle in years!
To achieve those loose curls my stylist used a curling wand (as seen below), instead of a basic curling iron. My step-daughters use a curling wand as well and they look beautiful and love it. It creates spiral tapered curls and is very fast once you’ve practiced with it. I love the look, but because of coordination issues I have personally stuck with a 1″ conventional curling iron. This haircut also looks great straight and is faster to style with a straightener when you’re in a hurry.
I have found that the one thing that is constant for someone with Multiple Sclerosis is change. I am a stubborn girl and don’t always respond well when my body presents me with another challenge. I am thankful for my family who loves me through it all, but can also recognize when I’m getting bogged down in self-pity and gently challenge me to rise above and fight through it. There is also a joyful and triumphant feeling when I come through yet another difficulty that has pushed me to try something new, and I discover something better than what I began with!
How about you? Have you ever had a side effect turn into an opportunity for growth or change for the better? Please feel free to comment. I would love to hear from you!
In my next post I will be sharing the rest of my hair story in Pixie by Force, part 2.