Who Am I to Judge?

When I'm looking for a new wig I go to my favorite wig website, and then begin to filter my options. I usually select, synthetic, straight, average cap size, and finally, priced under $50. At that price range, sometimes you can really see some interesting options.

Of course, some of the stranger ones are for cosplay (costume play), but some really have me questioning who thought anyone would want to wear that? Seriously, if the model can't even look good wearing it why would I think I'd even have a chance?!

But, and this is a big but, I looked through a photo album of my childhood. I had both of these hair styles and I'm embarrassed to say I went back to them more than once. So, who am I to judge?

Now I think that these might all be from the same year, but I know for a fact I had a similar cut in first grade. I refer to these as my "mushroom" cuts or a girls bowl cut.

My Mom claims that I insisted on these hair styles. I don't remember, but I'm sure at least once that was true. How unfortunate my sense of style was as a child. I've also been told I had an affinity for gold lame...yikes!

I hope someone will stop me if I ever head back in this direction again. I know that like history, fashion tends to repeat itself. This is definitely a look that should remain in the past. What could at least be called cute on a child is not okay for 30 something woman.I truly hope that I've learned my lesson and if I haven't, at least my children will still think I am beautiful!

What I've Learned About Wigs

In almost 10 years I have worn 6 different wigs. I've purchased 9. Here is what I have learned. Some of these are pretty obvious, but I'm going to share them with you anyway!

Wigs are HOT!
   
     I got my first wig at the cusp of spring turning to summer. It was super dense with hair on the cap. The feeling of sweat between the wig cap and my scalp was disgusting. On the flip side, taking my wig off after coming inside from the hot outdoors was almost as relieving as taking my bra off after a long day.

Wigs can be purchased on the internet.
    
     With the exception of one wig, I have made all the rest of my purchases online. Sure, I wish I could try before I buy, but at the same where else can you view hundreds of wigs at the same time.

Human hair is not always best.
    
     My first wig was human hair and heavy. My second wig was synthetic, light weight, and comfortable. I loved it and I wore it until it was noticeably thinning.

More expensive does not mean better or even more comfortable, but you also get what you pay for.
    
     I've had wigs that cost $600-$800 and wigs that have cost $40. One of my more expensive wigs was beautiful, but heavy and a bit uncomfortable. The other expensive wig was light, comfortable and wonderful.
    Similarly, my first inexpensive wig did it's job, but was itchy, stiff, and shiny, which definitely took some getting used to. My next, and so far favorite wig cost less than $40, was comfortable, the hair soft, very realistic, and moved like hair is meant to.

     I've also had some truly horrible, yet inexpensive wigs. I made the mistake of buying two wigs via Amazon. The buying process was fine. Once the wigs got to me the reason for their low cost was evident. One, which was only $6, had no discernible part and left me looking like Cousin It and it shed. All wigs shed, similiarly to normal hair, but every brush stroke seemed to pull chunks out. The other wig was supposed to have chunky blonde and red highlight. It looked young and fun and I was really excited for it. When it showed up the "blonde" streaks were really white. Needless to say, I didn't wear either and as they had come from China I was stuck with them.

Lace front wigs are intimidating!
    
     I've only bought one lace front wig and I'm not in a hurry to buy another. A lace front wig is supposed to give you a more natural hairline. Perhaps it does and it's entirely possible that I did something wrong or incompletely. When you get a lace front wig it comes with excess lace on the cap around the front hair line. You are supposed to cut the lace to you desired hair line. My hands shook so much for fear of making a mistake while cutting. I haven't been so nervous cutting something since the first time I cut my baby girl's finger nails after her birth.

Buyer Beware!
    
     As I already mentioned I've had some buyer's remorse after purchasing a few wigs. The wigs from China were not cost effective to return.

The lace front wig I bought I did want to return, not only because of the intimidating lace cutting, but because it also had combs/clips on the inside of the cap that were not mentioned in the description. That said, I had already taken off the tag to make it easier to try on. Once the wig has been tried on it can no longer be returned. I was stuck with another wig, but at least this one was wearable. It might not have been super comfortable, but it was serviceable.

I tend to wear my wigs until they are very worn, so I guess it's good to have a spare, even if I wouldn't typically wear it.

Something else I've learned is to explicitly tell my family and friends to speak up if something isn't right with a wig I am wearing. I know that I can be sensitive to hair criticism, but I don't want to look like a fool.

Several years ago I went on an epic vacation with 14 members of my family. In the middle of it, one night in our hotel room. I asked my husband if he notice how thin the hair of my wig had gotten in the back. He said that he did. I was mortified. I hadn't realized how bad it was until that day. It felt like when I first started losing my hair all over again. I cried myself to sleep and I know my husband felt guilty for saying anything, but I needed to know. Next time, hopefully he will say something sooner.



I've definitely developed a preference for synthetic hair wigs. As a parent of 3 young kids, I have more important things to spend money on than a new wig. Buying wigs that cost less than $50 suit my purposes and my budget. Plus, if I decide that I'm ready for a change I don't feel guilty.

As much as I love my budget friendly wigs, I do lust after the Medical Hair Prosthesis by Joseph Parish. It claims that it can be worn up off the face, you can swim with it on, ultimately, do most things you would do with your own natural hair. I could never justify the cost...$2500 to $3600, especially knowing it would need to be replaced at most in a few years.

It mostly comes down to comfort. What are you comfortable spending? Are you comfortable wearing it? But also, do you feel good about you? Do you feel confident? Do you feel beautiful? It doesn't matter what anyone else says. Yes, compliments are gratifying, but if you don't feel good about you, it will show.

One of the hardest parts of alopecia is mental toll it takes. Losing your hair is easily equivalent to losing your femininity and beauty. So much value is put into a persons looks. You are more than how you look.

Although beauty may be in the eye of the beholder, the feeling of being beautiful exists solely in the mind of the beheld.
-Martha Beck

My First Wig...

When I finally broke down and decided to buy a wig it was awful. The wig was fine, but making the decision to buy a wig felt like giving up. It felt like I was saying there was no hope for my hair to ever grow back. I would have this albatross, in the form of a wig, for the rest of my life.
I had no idea where to begin.

Where does a person go to get hair? I knew where to go to get hair cut off, but that clearly was not a problem anymore. I was directed to a lovely woman that worked at a salon that had worked with cancer patients before. I should have done more research on my own, but I didn't know better.

Disclaimer: Although I understand the impulse to jump to an assumption of cancer with baldness, I hate it!

Still, people with alopecia and people undergoing cancer treatment frequently have baldness in common. So, I went to the salon and was left to look through catalogues of wigs and make a selection. I was there no more than an hour. Never having an experience with wigs before, I assumed that a human hair wig would be the best choice. So, I picked a long, Raquel Welch, human hair wig. It was beautiful. Unlike my own hair which had been straight, my wig was wavy. I figured if I'm going to have different hair I am going to have different hair.

Here's the other thing...wigs can be very expensive. It wasn't that I didn't expect a cost. I did, but I wish I knew then what I know now. When I left that salon, my heart was lighter for having made a choice and knowing that soon I would be able to stop wearing my scarf which seemed to only reinforce the cancer assumption. I was also $800 lighter. A tremendous expense as I was recently laid off and had a 7 month old baby. I am grateful to my family, my parents, grandparents, and aunt, who all chipped in to ease the burden.

I learned through research that I could try to go through insurance. It was likely that I would have a hard fight ahead of me, only after I had a doctor write a prescription for a hair "prosthetic" and a note explaining the need for my mental well being. Seriously?! I am bald! clearly there is a need. I would think that having a doctor's documentation of hair loss and unsuccessful treatment would be enough for an insurance company to be willing to foot the bill for a wig every couple of years...kind of like getting new eyeglass frames. It has to be cheaper than whatever the insurance company shelled out every 4-6 weeks to the dermatologist during my treatment.

Anyway, back to the wig. I waited a few weeks for the wig to come in and the day I went to pick it up I was filled with such nervous anticipation. Of course I wanted a full head of hair, in whatever form it came in. What if I didn't like it? What if my husband didn't like it? Did I just waste almost $1000 for nothing? If I don't like it I was not going to wear it. This is what I ended up with...

It was okay, but felt foreign. I tried to find the funny in my situation, so I put it on my daughter. She looked like an adorable little doll.

It took some time. I took help from a friend, a breast cancer survivor, to teach me how to accessorize my wig, and help me to feel more comfortable with my new normal.

Luckily me for me, my friend KC owns the Diaper Bag Wrangler. KC stocked me up with head bands. At one point I think I had about 17 and they were double sided, so at least a months worth if I chose not to repeat. Before wigs I would typically wear my hair in a ponytail and only leave my hair down if I was dressing up. At least the head bands kept the hair out of my face.

So began my life with wigs. It was a hard thing to come to terms with. It took a long time for me to see it as an advantage, at least some of the time. Even now as I am in the market for my next wig I lament that I even need to have one. Yes, I know could just be bald, but that's not my style. Now, I can look at them as an accessory. I choose when or if I wear it. I choose who can see me with or without it. It is my choice and I own it!

The Beginning!

When I meet new people I don't typically start off with "Hi, I'm Suzanne. I have alopecia." If I'm out of my house I am typically wearing a wig or a hat. I'm comfortable with my hair loss and will "go bald" when I'm in familiar company or just hanging around the house. At some point though, especially in female company, the topic of hair comes up, and I have to tell my story. So, here goes...

I was diagnosed with Alopecia in April 2007, just 2 weeks before my 23rd birthday and 6 months before my wedding. I was at work, in a meeting, and I just happened to run my fingers through my hair. Typically, my hair would be in a ponytail, but for whatever reason, it was down that day. I noticed a patch that felt different. It was smooth, soft, and about the size of a quarter. I turned to my boss, moved the hair from around the patch and asked "Do I have a bald spot?!" Of course she said yes, and for the rest of the day I kept feeling that spot, silently freaking out.

I got home a few hours later...how I lasted that long I have no idea. I immediately started searching my scalp for any other spots and I was heartbroken to find several more dime and nickel sized patches. I searched, tears streaming down my face, wondering how I hadn't noticed them before.

In the days to follow, I went to the doctor, had blood work done, and then got the news I had already figured out from Dr. Google. I had Alopecia Areata. I had a lot of questions.

Is there treatment?
Will my hair ever come back?
Will I pass this on to my kids?
I'm getting married in October, will I still have hair?

For anyone that doesn't know:

Alopecia areata is a common autoimmune skin disease, causing hair loss on the scalp, face and sometimes on other areas of the body. In fact, it affects as many as 6.8 million people in the U.S. with a lifetime risk of 2.1%. 

People of all ages, both sexes and all ethnic groups can develop alopecia areata. It often first appears during childhood and can be different for everyone who has it. (National Alopecia Areata Foundation www.naaf.org)

In May, I began receiving intralesional corticosteroid injections. In other words, I had a teeny tiny needle injection medication directly into my scalp. I honestly don't know if it helped. I think at most it slowed my hair loss, but that was still happening. I went every 4-6 weeks until December. I remember once counting every injection...I stopped after I got to 160. It was disheartening to say the least.

 

In case you were curious, I did make it my October 6th wedding with a more or less full head of hair. There was some clever arranging to cover certain spots, but it was mine and I was thrilled!

Just 6 weeks later I was a bridesmaid in a friend's wedding and I still had most of my hair, but it was an even greater challenge for the hair dresser to cover what she could. I had a bit of a break down at the salon. It was only the beginning. Having always had a very thick and full head of hair anything less was shocking.

I was still under going treatment, but it was not working. At my December appointment I was told I could continue treatment, though it was not effective or I could try a more aggressive treatment, taking ciclosporin, an immunosuppressant. The possible side effects, which include cancer, and the fact that I absolutely, should NOT, get pregnant while on it made the choice an easy no. I might say that I would give anything to have my hair, but ultimately risking cancer was not worth it.

 On January 16, 2008, I broke up with my dermatologist. Not only weren't the treatments working, but I was PREGNANT!!! During my pregnancy, all of my patches filled in. My hair watch thick and full. I knew I wasn't cured, but I was hopeful that my pregnancy induced remission would continue post partum.

Almost immediately after the birth of my daughter on October 1st, my hair became brittle and started falling out...again! I had my last salon hair cut in December 2008. By February 2009 I made the difficult but freeing decision to shave my head. Any efforts I made to cover the (in hindsight) large spots were not effective. I wrapped my bald head in a scarf until I bought my first wig in May 2009.



 

Over the next year I lost my eyebrows and eyelashes. You really don't realize how weird a person can look without eyebrows until you don't have any. I HATED IT!!! I became pregnant with my second child, a boy. Unlike my first pregnancy, nothing grew back. My son was born in May 2010. I love him, but hated having my picture taken.

During my pregnancy with my second son my eyelashes grew back. It wasn't until after his birth in November 2011 my eyebrows showed up.

My eyelashes and eyebrows have stayed with me ever since, but my hair seems gone for good.

Seriously, in the grand scheme of things if I am going to "suffer" from a disease let it be one that may bruise my ego, but leaves my health (mostly) in tact.

I have been happily married for almost 10 years. I have 3 happy, healthy, thriving children. I really couldn't ask for a better life. Well, I wouldn't mind winning the lottery, but that is a topic for another day.

💜 Suzanne