Saturday, August 16, 2014

It's Happening....

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:

Ruby said...

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.

Raelyn said...

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