Wednesday, April 17, 2013

A Big, Hairy Mess

Stress is not a joke.  If I can do anything right though, it is handling stressful I say to myself.

I, in my previous life, worked in very stressful situations and helped to guide others through some of the most difficult times of their life.  I've had my fair share of scares throughout my existence and have had to learn how to deal with a body that I can't control.

I remember a prank that my dad pulled one day on my family.  He loves practical jokes and is known for pulling off some of the best April Fool's jokes, ever.  He was carving a turkey with an electric knife and pretended to cut his hand open.  He had squirted ketchup in his hand previously, so when he lifted his arm it truly looked like blood from a distance.  He had to take my brother aside beforehand to tell him what he had planned, so he wouldn't be shocked.  Something to note also is that when I was very small, he had an accident where he literally cut his face open with a chainsaw while working on our farm.  So...cutting body parts with motorized sharp stuff=not funny in our family.  One sister screamed, curled up in a ball and covered her eyes.  Another just started to cry.  One started yelling obscenities (I have a lot of sisters).  My mom freaked and got mad at him for cutting himself.  I, got up and ran to him to help, asking him questions about how he felt as I ran over.  When he showed that it was a joke, everyone was really upset and did not think it was as hilarious as he did.  Funny thing...he hasn't tried to cut off an appendage since ;)

Now, I mean nothing against the females in my family.  I love them all dearly.  I am not trying to say that I am the good one, or the brave one.  This story just shows that I can handle stress pretty well.  I tend to freak out alone, in my head, after the fact.  See this more recent incident.  I know that my life right now is extremely stressful.  Brian and I took a test from his grad studies again recently and we are at the highest end of the stress spectrum.  Fun.  What I am getting at is that I know that things are rough.  I try to take it in stride and take as good care of myself as I can.

Then a few weeks ago, something happened.
 I was blow drying my hair and low and behold, I found a bald spot about the size of a quarter.  Isn't that every woman's (or mans for that matter) dream?  I knew that my hair had really been thinning a lot, but I just thought it was stress.
 I have (usually) extremely thick hair and have to get it thinned with a razor about every 6 weeks.  You can see here my new, lovely receding hairline.  Thank goodness I have been growing it out so I can rock a major comb over!
Alopecia Areata is something that can happen under extreme stress.  I also knew that it could mean something else was happening.  I have not felt well for a long time, but I just attributed it all to the hectic pace of my life and that fact, once again, that it is pretty stressful around here.

It doesn't matter how many support systems you have in place, caring for a child with extreme special needs is hard.  I know that we as a family have suffered in our  jobs, church callings, finances, relationships with our friends, each other, extended family...the list goes on.  Did you know that research has proven that primary care givers have the worst oral hygiene of anyone?  If you have to go to therapy 5 days a week and see 11 specialists for your child, getting your teeth cleaned totally goes on the back burner.  Next thing you know, it has been 3 years since you have seen a dentist.  That goes for lots of other things too.  SO-I haven't been in to the doctor for a while.  The going bald thing threw me for a loop and I made an appointment right away.  It could be stress, it could be something else.  But I wasn't going to wait around for the rest of my hair to fall out!  My head is just not shaped well enough to pull off the Bic look!  However, I will trade baldness for seizures any day.  I am seriously dumbfounded that I have not had a seizure during all of this.  A true blessing.

The initial results show that I have markers for Lupus or another Autoimmune Disorder.   So my body is attacking itself.  When it attacks the hair follicles, thinking they are foreign, it falls out.  So, therefore I am 32 and going to join the ranks of many senior aged men.  I have a lot of other symptoms that fit the bill.  The final diagnosis is yet to be confirmed, while awaiting more test results.  The bottom line is, something is wrong.  The first thing they tell you to do when you are diagnosed with an Autoimmune Disorder is to de-stress your life.  That is not going to happen! Cole had three major seizures last night, something that unfortunately is totally normal around here.  Thanks for the advice, but it is not my reality ;)

I honestly am not allowing myself to freak out about this or slip into a depressed state.  I have learned over the years that I absolutely can not control the fact that my body is frequently prone to freaking out. So, I just have to treat it as good as I can and hope for the best from it.  Sometimes it gives back, other times it feel like I am 93 years old.  Now I guess I know why! ;)  You probably can also guess that it has taken a toll on my blogging amongst other things.

With everything that is going on in our little world, I keep a positive outlook.  Someone said to me the other day when we were discussing the newest developments with Cole and I, "Niki, I can't believe that I am sitting here, listening to you tell me all of this really horrible, bad stuff that is happening in your life...and I still feel happy and reassured.  You are an example to me of a positive attitude while not being in denial of the hand that has been dealt to you."  I assured her that I was only human, but it is just a part of me to be this way.  I will put a little plug in for my attitude.  Yep, I still get lonely, hurt, frustrated, afraid and a bunch of other negative emotions with the rest of you.  I probably seem ticked off a lot of the time when I am just probably worried about how to best take care of Cole and my family; or being quiet because I simply want to be quiet.  If you don't ask what is going on, then you assume.  Sometimes it is hard to paste a smile on constantly and pretend, but ask someone what they are thinking about before you assume that you know what is going on inside of their head!  *off my soapbox* All in all I think that my attitude is the only thing that I have control over.  So while I am realistic about our situation, I don't want to (or frankly have time to) curl up in my bed and cry for a week.  I've got too much to do-including getting excited for our Make A Wish trip!  It has been a real bright spot.

Darkness exists, but we do not have to dwell there.  There are always going to be bad people, bad stuff happening and negativity.  Look at this week alone in America.  Multiple stabbings at a college, a bombing at the finish line of the Boston Marathon and a plant explosion that took many lives.  There is hard stuff all around us.  I was obsessed with Mr Rogers as a child and I love what he says about these kind of things, "When I was a boy and I would see scary things in the news, my mother would say to me, 'Look for the helpers.  You will always find people who are helping.'  To this day, especially in times of "disaster", I remember my mother's words and I am always comforted by realizing that there are still so many helpers - so many caring people in this world".  My faith teaches the same thing.  We can be there for each other in times of trial.

I know that the real friends will come out of the woodwork during this hiccup in our family's bumpy road.  I hate to be the one to not be the "helper".  A wise friend of mine once told me though, "Allow people the opportunity to serve you" and it has stuck with me.  If you are reading this, think of someone who might need you to be the helper.  It may be a family who has a child with special needs.  A widow.  A divorcee.  Someone who is lonely.  Someone who lost their job.  Someone who is sick.  We all need help.  Every one of us.  Even if it is not out there flashing in neon lights.  Don't just say, "Let me know if you need anything".  Show up and do their dishes.  Mow their lawn.  Take their kids so they can go on a date.  Come over on a weeknight with a tub of ice cream and a good movie.  Send them money, with no strings attached.  This is an excellent article about all being enlisted to help each other through this journey we call life and the lessons that we can learn from each other.  I am re-committing myself to look for opportunities to help others and to *sigh* let others help me.  As soon as I finish looking at wigs online ;)


  1. Ah! So sorry about the hair. What a great outlook, though. Reminded me of this blog that I read today.

    Hope it's just isolated Alopecia. xoxo

  2. Nik!!! You got prayera coming your way-thanks for the amazing example!! Love you big time girl...xoxo

  3. Hi! I wanted to connect with you. I found your blog while I was looking for people to interview who have epilepsy. I have juvenile myoclonic epilepsy. I have discovered some natural prevention strategies to implement every day instead of taking the drugs that caused me horrible side effects for 24 years.
    I lost my hair to alopecia universalis 3 years ago. It is annoying. If you'd like to help me raise awareness, and are willing to be interviewed in my book, please contact me through Facebook - Melinda Curle or
    Best wishes,
    Melinda Curle


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