Tuesday, December 4, 2012

The Hardest Part

I began my search for answers doing what any person raised in the dot com era would do - I googled it. I was surprised by how little information I actually found. I'm not referring to the number of hits, but more to the vagueness of the information out there. 

According to my search results, I could have alopecia totalis. I will lose all my hair, even my eyebrows!?! Or, I could have Alopecia Areata and just lose my hair in this one spot and it will grow back. Hmmm... Is something causing this? Am I allergic to something? Do I have a thyroid problem? Lupus? 

I walked away from the computer with more questions than I had answers. I didn't even know where to start looking for an explanation.I told myself it wasn't so bad. I doubt it would grow much bigger. I just needed to take better care of my hair. That was it. I wasn't working hard enough to take care of myself. I had never done one of those "hair masks" I heard about on tv. I didn't get my hair trimmed every 6 weeks like you are supposed to. I always bought cheap shampoo and conditioner. It's my fault. I just need to work harder. So, I drove down to Ulta and began perusing the "expensive shampoo" aisle, the one I had avoided for years because it just seemed absurd to pay $34.00 for a bottle of shampoo. 

I walked straight up to an employee and stated, "I need your recommendation on a shampoo. I am missing a small patch of hair and I need to regrow it." 

"I have just the thing," She said. "Try this." She handed me a small bottle of shampoo for $24.00. "We have a lot of cancer patients that come in after chemotherapy and use this to accelerate growth. I would also recommend you use these organic products in your hair. That will really help." The total I would spend on this visit began to climb, but I didn't care. If I had to spend over a hundred dollars on hair products to fix this, then fixed it would be!

A month later, I checked my hair's progress and compared photos.

My God, it had gotten bigger!! I had taken better care of my head than I ever had in my life and my bald spot was growing. I needed answers and I needed them now. 

To be honest, the waiting for answers is the hardest part. When you go through something difficult, something scary, it's the unknown that frightens you the worst. You start thinking to yourself, "What if." Two innocent words, that when put together, make even the sanest person ready to jump off a cliff. "What if I lost all the hair on my head? On my body? What if there was no cure, no treatment? What if people found out and started treating my differently?" The problem with "what if?" is that your answers are never positive ones. You always begin thinking of the worst possible thing that could happen to you, and actually begin to think that it actually will.

I knew I needed to call in reinforcements, needed to find a professional. The next day after taking this picture I made an appointment with a dermatologist in the area. They specialize in skin, right? They have to have the answers!
"It's alopecia areata," she said. "To be honest, we don't know much about it. But it's usually caused by stress. Have you been stressed lately?" 

"Well, I just started a new job, I'm getting married in two months... Oh, and my HAIR IS FALLING OUT! Yes, I am a bit stressed," I replied with the tightest smile I could muster.  

"There's only one known treatment for this," she answered. "Steroid injections." 

"Like juicing?" I exclaimed. 

"Well, not really. I mean, yes, but a little different. We will take a small needle (4 of them) and inject steroids into your scalp. It doesn't hurt too badly."

I didn't feel I had much choice at this point. "Do it." I stated. I will try anything. I was desperate. And, it wasn't the last time I would feel desperate this year. 

Well, the good doctor lied. It hurt, and it hurt really badly. Needles pushing their way into your head, is just torture. Weeks later I still hadn't seen progress. The spot continued to grow. 

My next stop was a general practice doctor. I had my blood tested for everything that had ever been associated with alopecia. I told her that if she had any thought it may be related, just test for it. My blood tests all came back normal. "You know, I hear alopecia is brought on by stress," she said. Go figure. 

Frustrated, I went to another dermatologist. I needed another opinion. Same response, still no answers. The anger and the hopelessness really began to weigh heavily on me. No one understood. No one knew the fear I was feeling inside. I was still able to cover my spots with creative hair styles (my hair was permanently in a side pony tail), so it was easy for people to think it really wasn't that bad. I mean, I looked normal to them. But, I was dealing with something completely out of my control. I felt like I was falling off a steep cliff, grasping for a rope to hold onto, but hitting air with every swing of my arms. 

By this point, it was nearing my wedding. The BIG day, the one we had been planning for a year. I was running out of time to find answers. I just needed a solution. The baldness was still isolated to the top of my head and was about the size of a Christmas tree ornament. If I could get extensions added to cover just that area, then maybe, maybe I could look normal on my wedding day. I went to several salon specialists, with little hope for a solution. I finally landed on clip-in extensions. I could pull my hair to one side and the clip-ins would cover it. It was something at least. A lot of hair spray and a little creativity, I may just pull off an entire day with no one noticing. 

On our honeymoon, I thought just maybe my stress would finally start to dissipate  Maybe that would spur my hair to regrow. We were halfway into our week of bliss when I received the one-two punch. I was sitting across from Zerek at dinner, my head down to peruse my menu. 

"You have another spot," he said. The wind was completely knocked out of me. I didn't know what to do. I didn't know the next step to take. I had no plan, I had no answers, I had no solution. Not even happiness and love could cure what was going on with me. 

We returned from our honeymoon and a few weeks later I had to go to a salon to get ready for a friend's wedding. I joked with my girlfriends that maybe I should trick the stylist and act shocked when she brushed my hair, ask her what she did to my hair. Behind my jokes and laughter, however, I was nervous. I didn't let anyone see my bald spots. Most of the time, I even tried to hide them from my husband at home. The thought of a complete stranger running her hands through my hair, it was frightening. 

The stylist was really understanding and actually had a machine that took a microscopic look at my scalp. "Good news!  Your hair follicles are still intact, so we know you can definitely regrow hair," she said. She sold me some oils she was sure would work, and began to work my hair into something beautiful. I could see her reflection in the mirror as she stood over me, studying my head. I saw her face go white and my heart sunk. 

"You have another spot back here," she said pointing to the back of my head. "And another one here," she said pointing to my right side. Would this ever end? Why was the growth accelerating? Why couldn't anyone give me answers? 

As the spots began to grow, I found creative ways to cover my head. I bought fun hats and scarves and received many compliments about how "cute" I looked wearing them. The compliments felt like fire pokers stabbing me in the gut. I knew what they were really thinking, "Why is she wearing a hat all the time?" 

Four. Four patches, four bald spots and I still had no answers. Every day they grew. The oils the salon sold me didn't work, the steroid injections, reducing my stress, fancy shampoos... nothing was helping. It was hopeless. I was fighting a losing battle. I had been fighting, searching for answers, praying for a miracle, and I was tired. 

When the realization hits you that there are no answers, that you've lost, that's when bad goes to worse. Little by little my confidence had begun to crumble, and my self worth right along with it. When I looked in the mirror, I didn't see me staring back. I saw a bald, ugly, pathetic loser. It didn't matter that my sweet husband told me I was beautiful. And it didn't matter that I was surrounded by a great support system. Inside, I felt disgusting. The sad part is, when your emotions become that low, you start turning into the person you see in the reflection. I had stopped taking care of myself. I no longer worked out. I didn't eat well. I gained weight and now weigh more than I ever have. But, why did it matter? I was already ugly. I no longer looked like a woman, let alone a sexy one, so what's a few more pounds? 

And, it didn't just affect the why I saw myself physically. This disease had caused me to waste so much money. Between the treatments, the "solutions," the doctor's visits, the hair extensions... I had spent so much of our money on things that didn't work. I now felt like an awful wife. This wasn't the person that Zerek had married. He deserved better. 

It all culminated one day when we were out on the boat. I had been wearing a hat all day, as was typical for me now. I had spent the entire day wondering if anyone had seen my bald spot or the fat rolls under my one-piece swimsuit (two pieces were out of the question). The sun was setting and I was so hot, so tired, and so fed up. I felt suffocated and the heat was more than I could bear. I finally just gave up. I decided I would just take off my hat. It would be the first time I let my friends see the real me. They had only seen the smiling, positive woman that kept joking and talking about how things would get better. Now, they would see the ugly me, the real me. As the boat began to speed over the water, I leaned back in my chair and removed my hat. 

I was hit instantly with a sense of release. The cool breeze spreading over my bare scalp was absolutely refreshing. The heat of the day slowly began to escape as I leaned back and relished in freedom I felt for the first time in months. Something as simple as my hair blowing in the breeze - I hadn't let that happen in 5 months and it felt so good!!

Then, reality sank in. It was pitch black outside, but I feared that soon everyone would notice my hat was off and they would begin to stare. I couldn't look at my friends. I could only stare straight ahead. Tears began pouring down my face. I didn't put my hat back on. I was frozen. All the emotion of the recent months overwhelmed me at once. I couldn't stop crying. The conflicting emotions of freedom and fear were more than I could take. Was this how I was going to live the rest of my life? How much worse was it going to get from here? When would Zerek give up on me? I had already given up on myself. Was this what rock bottom felt like?  I was living in isolation, a mental isolation. No one knew how hard it was for me every day, not even my husband. I had no idea where to turn. 

But, like most things, answers come when you least expect them. Soon after I hit rock bottom, I met the two people that would change my life. More about that in the next post. Thanks for listening. 

1 comment:

  1. Alopecia totalis is an issue in a person’s auto-immune system. People who have the same condition would either go for wigs or a hair transplant. The latter is more popular since it offers a permanent solution to hair loss. Don’t lose hope just yet. You can still bring back the locks you used to have. Just go to a professional cosmetic and hair transplant doctor for a consultation.

    Paola Basilio