Blogging Friends.... I feel like I need to be honest with you. I
just realized this week that--unbeknownst to me--I've been putting on a
"brave act" regarding my journey with folliculitis decalvans. Yes, I
do have negative thoughts/feelings/emotions. But they are short-lived and kept
private. Yes, I have experienced woe-is-me feelings. But they are short-lived
and kept private, as well. No, I am not strong every day, all the time. But I understand that even brief negative thoughts/feelings/emotions,
and woe-is-me feelings are completely "normal". Yet, I choose.... To remain positive. I
choose.... To count my blessings and be grateful. I choose.... To find a witty
sense of humor amongst my hair loss issues. I choose.... To laugh. I choose.... To
evade tearful minor mood swing infused pity parties. I choose.... Joy. And I choose....
To put on a brave act!! Love you later.
Taken from my private Word document journal/diary entry!! Some
changes were made, as per usual!! Written on 8-8-14 and 8-9-14.
It's
happening. The further progression of my folliculitis decalvans. It's
officially happening. And the most frustrating part about this? I am swallowing
a medication that is supposed to prevent F.D.'s progression. I'm even nearly
finished with bottle number two, for Heaven's sake!! I
noticed it on Tuesday, August 5th, as
my niece, "Amethyst" and I watched age-appropriate YouTube videos together. Like "Mickey Mouse Clubhouse". "Part of Your World"
from "The Little Mermaid". Or "Minnie's Bowtique". I
had been experiencing an itchy, itchy, itchy
scalp next door to Baldy ever since stopping medication number one--or as I
call it Plan A!!--so, naturally, I scratched the area. And
scratched it. And scratched it. And
scratched it some more. Doing so never
caused me any physical pain. Never.
If anything, it felt good, as though I were massaging my freakishly hard head!! Ahhhh....
And oh, boy did I love how it felt!! In fact. I have even cracked jokes about having "a few bugs",
like Kristoff in "Fixer Upper" from "Frozen"!! Now. My fingertips oft had a pus-like substance
on them after scratching the area. But. As an injury-prone, clumsy person, I
have never cringed, grimaced, or became grossed out about pus!! However.
While "Amethyst" and I watched kid-friendly
YouTube videos together--I honestly
cannot remember what!!--my nose
smelled an all-too familiar bodily
fluid. Blood. Certainly enough, it
was on my fingertips and twain nails. Yes, being an injury-prone, clumsy person, I can determine the smell of
blood. It's a gift!! I can also determine blood by its sticky substance!! My
immediate thought? Blood. I know all too
well what this means. Blood means furthermore hair loss. As I kept watching
age-appropriate YouTube videos with
"Amethyst", I attempted my very
best to forget everything. My itchy scalp. The blood. Probable
furthermore hair loss. This was easier
said than done as even Donald Duck, Chip and Dale could not erase Reality. Oh, yeah. Donald Duck was one of the classic
cartoons that we had watched!! Once I distracted
"Amethyst" and encouraged
her away from this very flat screened
desktop computer, I looked at my reflection in our Boy's Bathroom mirror.
First, I needed to part remaining
hairs. And there it was. In the area
where I had been scratching. It was
another bald spot. Red, enflamed, scaly and bloody, it is {Thus far!!} much smaller in size than Baldy.
Nonetheless. It is another permanent
bald spot. And I know all too well
what this means. My hair will not grow back there. Ever. And there is absolutely nothing
I--or anybody--can do about it. Baldy has a next door neighbor. Then I took
myself by surprise. Although I was not
nearly as Drama Queen or vain as when Michael noticed Baldy last year, I did
panic. Wait. What?! Was it
because the sight of my own blood causes an irrational fear that I am bleeding to
death? Or. Was it the dread which
comes with knowing that I am slowly
but surely losing my beautiful hair
and going bald? I'm afraid it is the latter. Which greatly confused me. See, I
thought I was completely at peace with losing my hair and unveiling twain craniosynostosis scars. No going back to
old thoughts/feelings/emotions. I even needed to remind myself this. I don't give a damn. I don't give a damn. I don't give a damn. But
truth be told? I am--this is not me putting on a "brave act"--completely at peace with losing my hair and unveiling twain craniosynostosis scars. No going back to old thoughts/feelings/emotions. No going back. But on the other hand? I
am still processing Life's Reality
that I will more than likely lose my hair!! And that, I think {As well as my
little panic attack!!} is absolutely okay. It's happening. The further progression of my folliculitis
decalvans.
2 comments:
I am so sorry it is happening so quickly. God is control of all things, and He is always working for the good of His children, so I know He will use this for His glory and your good. It is just hard to see it now- one day we will though.
Ruby....
Thank-you for the comment, Friend!! I truly appreciated it!!
"God is control of all things, and He is always working for the good of His children, so I know He will use this for His glory and your good." Thanks, Friend!! And God has used my FD journey for His Glory, as He is in the process of working on/growing/maturing/evolving me during this adventure!! More shall be revealed!! ;op
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