Have the Cake and Eat it Too

I have to start this post on a positive note. I am SO happy to say I am doing very well. I gained back 30lbs, I’ve put almost everything back into my diet, I’m back to working out, and although I’m still no where near where I once was, it’s progress, and it feels so good to be back and moving again. So what’s the problem? Everything should be good, right?

Unfortunately this 'invisible disease' has left me with another very un-invisible side affect, and one that I no longer want to hide. As some of you may have noticed, I've been wearing a hat every day. That's because I'm losing hair like its going out of style. It started slowly, and then within a matter of weeks it began falling out at a very rapid pace. Those of you who know me well, know that I’ve always had ridiculously thick, can barely get the rubber and around twice, kinda hair. Well now it’s more like, get the rubber band around 10 times. It’s gotten so bad that I refuse to go out in public without having a hat on.  

My doctor and I had mutually agreed it was the chemotherapy drug causing the hair loss. But he assured me I would only be on it for a few months, until I got off the steroids, and made sure my flare was completely under control. So I sucked it up. Or at least in public I did. Behind closed doors was a very different story.

Showering was a truly traumatic experience. I spent countless nights crying after every shower, and as a result, began washing my hair less and less. Just running water over it, I would I feel clumps of hair sliding down my back, and every time I ran my fingers through, I was left with handfuls. It was a horrible and helpless feeling that literally made me shake. Afterwards, it only took about two passes of the brush for me to have a full-on breakdown, followed by me telling myself I was being ridiculous. I should be grateful that it was just hair, and not what I was going through a couple months ago. I tried to be strong, but the vicious cycle continued. I would shower, cry, and tell myself to stop. Tell myself to be happy to be healthy, and not flaring, and 'it’s just hair.' My loving husband would remind me that losing my hair didn’t make anything change. Hair or not, I still had him and Oscar and nothing would change that. And he was right. Which made me realize that I wasn't just upset over my appearance, I was upset over the constant reminder that I have this illness, and will for the rest of my life. It was so nice to start to feel normal again, to some days forget that I was living with an autoimmune disease. But watching my hair fall out every day was that constant nagging reminder. I was finally getting my face back after months of swollen cheeks from steroids, and now this. I couldn't catch a break. It was the same feeling of embarrassment, helplessness and self-consciousness that I had felt just a few months back, when I was 98lbs and withering away. Once again I was looking in the mirror and didn't recognize the person staring back at me. 

Hair loss after just one shower

By this point, I had convinced myself I was going to have to just cut it all off. A pixie cut, or just shave it even. I thought, maybe being bald would be uplifting and empowering, and I could be strong and make a statement. But it scared the hell out of me. I wasn't strong, I was weak and I wanted my hair back more than I care to admit. I began feeling so ashamed of myself for feeling this way. But then it hit me. Why should I be ashamed? What have I done wrong? Why should I have to chose? Why should I have to chose to be healthy or have hair? Why can’t I have both? Part of being truly healthy is being able to feel 100% like yourself, and I did not.

Finally, I was able to stop the chemo drugs, and after a few weeks my hair had stopped falling out and was beginning to grow back. At the same time, I was introduced to Renee at Salon Studio in Bernardsville, NJ. She is a stylist who specializes in hair extensions for women with hair loss due to genetics or medications. When I met with her, she quickly assured me that I would not have to cut it off and she would definitely be able to help me out. She set me up with her amazing stylist, Tiffany, who brought me back to life within a matter of hours. She was able to attach hair extensions to the new short hairs growing in, which will aid me through the re-growth process. I can't say enough nice things about these two ladies. Not once did they ever make me feel embarrassed or ashamed, and their confidence and excitement radiated through me and made me feel such ease and comfort throughout the whole experience. 

I want to make sure I am not giving off the wrong message here. I am not saying that hair is what defines me and  I am not myself without it. I am the kind of person who doesn't take no for an answer. I don't give up, and I fight for what I want and what I feel is right. If I just left my hair as-is and continued to hide under a hat every day, THAT is what wouldn't make me, ME. Part of me feeling like myself again is, yes, having hair, but is also taking action, kicking this diseases a**, and not letting it take another thing away from me. It can have my hair, but it will not have my spirit or my confidence.

I'm sharing this with you because I want everyone to know that you are not alone. For me, it was my hair. For others it may be their weight, the loss of a loved one, money problems, or a new baby. Everyone is fighting some sort of battle, and it doesn't matter what battle you are fighting, it matters that we fight them together. The world is a much less lonely place when you can be open and share your stories with people. 

Until next time...keep eating that cake :)

cred:@tiffanyrafalko
salonstudionj.com