I am not my hair- introduction

“Hair loss occurs in 45% of people with lupus at some time during the course of their disease.”

Most frequently the hair loss occurs at the onset of the illness, and may be one of the first symptoms of the disease recognized by the person. Most often, the hair loss is from all over the head, but sometimes the hair falls out in patches. When the disease is brought under control, the hair should grow back. Sometimes there is a rash in the scalp—usually subacute or chronic discoid—that interferes with the hair follicle. In this situation, the individual is left with a permanent area of alopecia. Drugs used to treat lupus, such as prednisone and immunosuppressive therapies, also may be the cause of reversible hair loss.

Good-bye long hair!

I use to spend so much $$$ and time/effort on my hair. My hair use to be my identity and my creative outlet. OK- so maybe the masses were not jealous of my hair and maaaaybe they weren’t saying “Geez, that Diva has great hair!”  As much as I fought with my hair every morning, I still loved it and ROCKED it.  I noticed my first bald spot in May 2010 and didn’t think much of it. “No worries- I can hide this.” Before I knew it, my bald spot spread like wild-fire! I was leaving traces of hair everywhere. Showers were torture as I could see strands going down the drain. I was loosing hair in massive amounts. The strong strands that survived the massacre were those in the front of my head. At the time, I was with my ex, Mr. Aguinaga. We were together for 9 months at the time of my first strand departure. By the time the last strands were hanging on for dear life, Mr. Aguinaga disappeared into the arms of another woman who was healthy (more details to come.. it’s juicy). I knew Mr. Aguinaga was never going to be good enough nor strong enough to be with me- more on that to come.

There came a point when the inevitable had to happen- I had to shave my head. I remember the day my favorite stylist picked up the razor. I cried as soon as the razor hit my scalp (luckily- I had my one of my best friends with me- thank you Mr. Carmona). Through my tears I thought: I will never be the same. I knew that lupus was going to bring out the best in me by pushing me outside of my comfort zone and revealing my strengths.

I have an arsenal of wigs and scarves. Wig shops became a bi-monthly visit. I was not worried about the shopping expense as this was now a medical-expense. I bought hair and submitted receipts to my insurance company and for those not covered will be on my tax return. (Perks of a chronic disease, eh?) Over time I gained knowledge on the world of wigs and became an expert (“Wig knows wig“). I learned new terms (I had a “wig-face”- meaning all the wigs looked great on me), and learned to stay away from all natural elements (water, fire, and air).  Each wig had a name and a personality: Streak, Kikki, Lolita, ‘Nita, Bambi (my blonde one). My wigs were my new accessories and together we were fooling everyone. Joke is on you world!

Even with all the fun I was having with the girls,  there was one thing that bothered me: THIS ISN’T MY HAIR! It was exhausting just to make sure the damn thing stayed on my head and straight I would spit my drink out when men would come up to me at a bar and say “I really like your hair”. I almost want to respond with: “Well, if you like it so much, here ya go!” (As I whip it off my head- That would not be too classy of me). In upcoming posts, I will talk about how men react to my hair-situation.

Will I be bald forever?

Thanks to daily pills of prednisone, 15 steroid shots to my scalp once a month, and  calming of the lupus symptoms, my hair has started to grow back in- BUT not all at once. Of course, I have some lazy follicles that are taking their time to grow back in and, unfortunately, I do have some scarring which will result in permanent bald spots (i.e., scarring alopecia). As I had mentioned before, I am currently taking a form of chemotherapy, methotrexate, as an injection once a week. Like other chemotherapy, a side-effect is hair loss. I started chemo at the beginning of this year as a last-chance treatment option. When Dr. Lupus explained the side-effects, I laughed when he said, “oh, you may loose your hair.” I responded with “Doc, I have already crossed that bridge!” My experience with methotrexate in regards to hair loss has not been too bad. Actually, I haven’t really noticed- because I am keeping my hair short these days. Every once in awhile, when I rub my hand on my scalp I see little hairs breaking free- but I know they will come back. 😉 For the majority of patients experiencing hair loss, the hair does grow back once you start to feel better. Rarely, does the flare-up cause scarring, which prevents regrowth.

Wanna hear the perks of being bald? Stay tuned for a fantastic list in a future post.

I am not my hair- Going on the “cover-up” strike

A couple of months ago, I went on strike. Part of it was because of the Houston-heat– it was just too hot to be wearing hair. I was already having hot flashes from the steroids and chemotherapy! The main reason was because wearing the hair wasn’t suiting me style. My style is to be true to myself– to be a fabulous diva no matter what. Wearing hair felt like I was ashamed of myself and denying my true fabulousness. Don’t get me wrong- wigs are great and you will see me wearing one from time to time (especially on cool nights out). I am glad that I lost my hair- because I learned a great lesson- I learned that I am not my hair. Physical features do not define who I am. I am me and beautiful bald. I recommend you, my fellow patient, to put down that wig/scarf and let loose by walking proud with your bald head.

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