Risky Business!

With the exception of my very first wig, all the other wigs that I purchased have been bought online. This is wonderful in that I can browse at my leisure, explore a huge selection, and seek out the best price. This is bad, because you can only hope you're going to like what you ordered. Not all wigs have reviews and even those that do, wigs really are a matter of personal preference. I've found at most online wig retailers, unless there is a defect, once you have tried on the wig you can not return it.

A few months ago I purchased a wig that looked beautiful online. It was beautiful in person, too. The downside came in what was not included in the description. Inside the cap were several combs. This would have been fine if I had any hair at all, but as I do not, they were just hard thinks stabbing my scalp. The wig also pinched around my ears, not something that you want if like me you wear glasses.

After that I decided to go back to the wig I had before that...well not that exact wig, but I purchased the same wig again just in a different color. You would think that all would be well in my world of wigs. Alas, all was not perfect. This wig looked great, felt great, with one seemingly minor problem. The new wig parted on the opposite side! I know that it shouldn't be a big deal, but when you're used to parting your hair a certain way doing it the other way is just off putting.

Picking out something that will be part of your daily appearance is not easy. This is part of the reason I pick less expensive wigs, so that if it doesn't work out I can keep it as a back up or just wear it until I find something new.

This lead to my most recent wig purchase. This time I decided to go with a new style. All of my wigs until this one have been at shoulder length or longer. With spring here and the summer months approaching I decided to go for a shorter look.



Again, I say buying a wig online is tricky business. I got my new wig on Tuesday. From the pictures it seems to have a fairly defined part. This is not true, so I'm still trying to figure out exactly how to get it to look best on me. I thought that the front was all the same length or with long layers. It seems that it's more of a side swept bang and the bangs come to just below my eyes. This is slightly annoying and the reason I never had bangs when my hair was my own. However, this wig is light, comfortable, and different from my norm which I am enjoying.

 
 



 

So my new wig and I are still feeling each other out and working through the kinks. I'm glad that I tried something new. New is not always better and different is not always bad.

 

 



Accepting the Unexpected

For the past several years my hair loss has been what I consider stable. I know that I have lost more scalp hair, but once you are to the point of wearing a wig that doesn't matter so much anymore.

About 4 years ago

About 2 years ago

Today








 

Apparently, my hair has also become a lot whiter! So while there has been less on my scalp, my eyebrows and eyelashes (once they returned) have stayed full. Despite having caterpillar like eyebrows, I've been more hesitant since their regrowth to pluck or wax them. Obviously, I know they're unattractive at their fullest, but voluntarily removing something that I fear losing again seems wrong. However, I decided after losing them before that should they fall out again, I'll simply get them tattooed on. The art of eyebrow tattoos have come so far it seems like a no brainer.

 

This brings me to my recent discovery.

 

Earlier this week while applying my make up, I found that I am missing a small, maybe 1/8" section of my eyelashes on my upper right eyelid. I know it is minor, both in size and considering all of my other hair loss. To me though, it's crushing. I have wonderfully thick, long, and dark eyelashes. To be without them looks odd.

 

I never used to wear eyeliner until I lost my eyelashes the first time. It looks more normal for me to have something dark on the edges of my eyelids instead of nothing. Now, even if I put on no other make up, I put on eye liner. To me it's keeping up the habit in case the need should arise again. I doubt any other person will notice what's missing. I see it like a flashing neon sign every time I look in the mirror.

 

Seriously, I tired to take a picture of the missing section, but you can't see it. I guess that's good, but you can bet it won't stop me from checking for more loss every day, probably multiple times.

 

These are the days that are the hardest. I don't feel sorry for myself and I don't want anyone else to feel sorry for me. I know that something so much worse could be happening to me. I will allow myself to be sad, but I can't wallow in it. I will allow myself to check in the mirror, but every time I do, I have to leave myself a positive affirmation on a post-it on the mirror. I will accept the unexpected because what other choice do I have?

 

 



What About the Kids?

One of my biggest concerns when I was diagnosed was "what about my children?" At the time I didn't even have any kids, but I was going to be married in 6 months and hoped to begin my family as soon as possible. It was the first question I asked my dermatologist and the even before that, the first thing I researched with Dr. Google.

Scientists believe that multiple factors (both genetic and in the environment) are needed in order to trigger the disease, not just simply family heredity. In fact, most parents will not pass alopecia areata along to their children. (National Alopecia Areata Foundation)

To say that I was relieved was an understatement. I have always wanted to be a mom. I certainly wouldn't have given up my dream, but I may have decided to adopt if there was a greater likelihood that I would pass this condition knowingly to my child.

I went on to have 3 wonderful children. My daughter is 8 and my boys are 5 and 6. They have only known me with no hair, wearing wigs, hats, or wraps. To them, I am just me. As they have gotten older there have been questions...why don't you have hair? will my hair fall out? will your hair ever come back?

I started with explaining simply that something is broken inside me and it makes my body attack my hair so that it doesn't grow and what I do have falls out. As my daughter has gotten older, the explanations get a bit more in depth, talking about hair follicles and other auto immune disorders. I always want all of my children to know that it doesn't matter what a person looks like, but their character that makes them worthy of, respect, friendship, or love.

I will never forget the time I was brushing my daughter's beautiful long locks. Cursing them because her hair was a knotty mess and (jokingly) threatening to cut it all off. I was devastated when she started to cry, screaming that she didn't want to be bald! I know she didn't mean to hurt me, but man, what a slap in the face. I tried to explain that there were worse things in the world to be than bald.

I'm grateful that she seems to have moved passed the terror of being bald. In fact, this fall she made a hair donation to help children with hair loss.

Even though I have grown to accept my alopecia, I am still fearful that any of my children could develop it. Would it be the worst thing in the world? No. I know that, but what parent wants to see their child struggle. I am immensely grateful that I was not in school, particularly middle or high school, when I lost my hair. I had my shared of issues with bullies and I don't want to imagine how much worse it would have been if this had been added to it. I worry that my kids could be made fun of because of me when they're older. I never want them to have to defend me because I'm bald.

I try to teach my kids that they are valuable and important. I want their self worth and confidence to be off the charts so that if something like this should happen, they're able to accept it and move on with their life.

The important thing for me has always been being open and honest with my kids about my hair loss. I have been bald in front of their friends and it always amazes me how accepting young kids are of what is. They've never asked questions, at least not to me, but I would willingly answer any question they did have. I hope as they get older their friends, old and new, continue to be as accepting.



It's NOT Just Hair!

With all due respect for those that think Alopecia is just about hair, you are wrong!

In addition to losing hair and all the psychological side effects, there are other physical effects to this disorder. I am among the 10-50% of Alopecia Areata sufferers that has also developed nail pitting.

What is nail pitting?
Nail pitting is small, pin sized, dents on the nail. The image below is not me, but a good example of nail pitting.

In some cases, it can be quite extensive. Luckily for me, my nail pitting is very slight. The benefit of being a female with this condition is that, should I choose, I can always have fake nails put on. I hope it never comes to that, but after losing my hair, I've learned to expect the unexpected.

Another, more worrisome (to me at least), issue with Alopecia is that is an auto immune disorder and it seems that once you have one, you can be more susceptible to others.

I currently have 2 auto immune disorders. Alopecia, obviously, and hypothyroidism.

When I initially went to my doctor after finding my first bald spot, blood work was done. At that time I did not have any thyroid issues. After having my daughter in 2008, I decided to see a new dermatologist just in case I decide to resume my corticosteroid injections. At that time I had new blood work done and my thyroid levels were crazy. Despite not having this issue at my initial diagnosis, I was flooded with hope that this was the reason why I had almost no hair and surely once my thyroid levels were under control I would regrow all that I had lost.

I could not have been more wrong. I was put on medication, my levels eventually normalized, but I continue to lose hair. At one point I was even able to stop taking the medication as it was deemed to have been a post-partum issue.

Fast forward to 2014, at a routine physical complete with more blood work, I was again diagnosed with an under active thyroid. It took almost 9 months to find the right dosage and I've been on medication ever since.

What this means for me? Fear.

I fear that I will be diagnosed with another, potentially less benign, auto immune disorder.

•  alopecia areata
•  autoimmune hemolytic anemia
•  autoimmune hepatitis
•  dermatomyositis
•  glomerulonephritis
•  Graves’ disease
•  Guillain-Barré syndrome
•  idiopathic thrombocytopenic purpura
•  myasthenia gravis
•  some forms of myocarditis
•  multiple sclerosis
•  pemphigus/pemphigoid
•  pernicious anemia
•  polyarteritis nodosa
•  polymyositis
•  primary biliary cirrhosis
•  psoriasis
•  rheumatoid arthritis
•  scleroderma/systemic sclerosis
•  Sjögren’s syndrome
•  systemic lupus erythematosus
•  some forms of thyroiditis
•  some forms of uveitis
•  vitiligo
•  granulomatosis with polyangiitis (Wegener’s)

This is just a small sample of what could affect me during my life. I swear, I am not a glass half empty kind of person, I don't expect that I will get another auto immune disorder, but it would be naïve of me to think it impossible.

The point is, from the mundane to the debilitating, Alopecia is not just about hair.

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!