I wanted to start sharing with you monthly Alopecia updates.
It is, unfortunately, a huge part of my life right now. So I should start telling you what’s going on!
This is my first update and a few weeks ago when I decided to do this, I couldn’t wait to write this post. Although I’ve now lost all my long hair, I have been graced with a new funky Mohawk and along with it a dose of real optimism.
Thick with dark brown hair, that’s about 2 inches wide! It’s a joyous sight to see. This area is where I got a round of steroid injections 2 months ago, which tells me the treatment is working. Plus in addition to my Mohawk, areas that have not been injected are also growing patches of hair! Wooohooooo!!!
But hold up.
Stop the victory parade.
Two days ago, my optimism and excitement were harshly robbed of me. While washing my hair, my Mohawk started to fall out.
It’s happening again. I am loosing my hair for the second time. I now have 2 large bald spots in my regrowth.
And it is still falling.
I honestly believed that I was on this straight path towards healing. The new regrowth indicated I was coming out the rough and starting the road to recovery. But now I realise I’m not on a straight path at all. I am on a circular track. A circle that might never end.
I loose hair. I grow hair. I loose hair. I grow hair. I loose hair. I grow hair.
It is exhausting.
And it is depressing.
As if I wasn’t wounded enough, it gets worse.
This morning I noted my right eyebrow has lost a large percentage of its hair too.
With the eyebrow thinning I think my doctor will tell me I am now, what they would categorise as, Alopecia Universalis. An advanced state of Alopecia, resulting in total loss of all body hair. And if I am right, it’s the hardest, rarest, and most extreme type of Alopecia you can get.
There is no cure or reason why it’s happening. It just is.
When I was first diagnosed with Alopecia Areata doctors would tell me “don’t worry it’s not Universalis. That’s hard. This is easy. We can fix this.”
Well, turns out it is highly possible I have Universalis.
I wish I could end this post on a positive note. But right now I have lost all positivity. My hope has been snatched away.
I still have options to explore and doctors to speak to. And of course, I still have my Bonono’s to help me smile. But right now, with thinning hair all over, my thoughts are the opposite of positive.
Can you imagine fearing your future?
Waking up and worrying what you see in the mirror each morning. Wondering how someone will employ you again. Considering if a holiday is a good idea because your not sure if you can cover your head in an airport? Thinking about how Baby Bonono’s future friends might tease her for having a mum with no hair.
I am probably being dramatic. In fact, I know Mr Bonono will tell me I am being extreme and silly. But I think I’m allowed to be dramatic and silly every once in a while.
As I try to process this new development and desperately find positivity, I am afraid tears, drama, and fear are the winning emotions right now.
All my hair.
ALL MY HAIR!
ALL MY F*#@ING HAIR!!!