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.