Saturday, August 30, 2014

Look Fear In The Face

Blogging Friends.... This was the July quotation from my wall calendar. Only they did not print her every word!! Sad!! So here is the quotation in whole!! I like it.... Her words feel somewhat symbolic to my folliculitis decalvans journey!! How so? I'm choosing to "look fear in the face" as I gradually accept Reality that I will eventually lose my beautiful hair, go bald and unveil twain surgically-created craniosynostosis scars!! One step at a time!! Love you later.

You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do. --Eleanor Roosevelt

Look for my September fictional children's book to be posted on Minuscule is good! {Lord willing!!} on September 1st!! And do not forget to leave a comment!! 

Tuesday, August 26, 2014

"Beautiful"--To Me--Is....

Blogging Friends.... Sorry for not posting at all last week!! I feel like a terrible Blogger lately!! And I haven't got any reasons or excuses for my absence from Beautifully Unique, as last week was not very busy!! Love you later.

Taken from my private Word document journal/diary entry!! Some changes were made, as per usual!!

Feel-sorry-for-me pity parties. I have--throughout my adult Life--thrown several. More than I can count, I'm afraid!! All because I live with unwanted learning disabilities. I especially despise my premature short-term memory loss!! Yes. I have--throughout my adult Life--thrown some feel-sorry-for-me pity parties. Nothing serious, lest anybody wonder!! I've learned over the years that I can quickly bounce back from feel-sorry-for-me pity parties!! Not to mention. I can also learn from them!! And, while I do experience thoughts/feelings/emotions regarding having folliculitis decalvans {Some positive. Others negative.} I have--somehow!!--evaded any feel-sorry-for-me pity parties!! Yet, whenever I read about other people's journeys with hair loss-related diseases/issues, their stories are all the same. Hopeless. Despondent. Depressed. I was researching folliculitis decalvans sometime in the beginning of Summer, and came across several forums that were written by fellow Kindred Spirit sufferers of my disease. Same sad stories. One person even wrote these words. "It is attacking my confidence and driving me into depression at an age where I should be getting ready to graduate and begin my career. I'm at the point where I've lost my drive for self improvement and my desire to even leave the house." Mmmm.... Then, being driven by such desolate thoughts/feelings/emotions, I made a promise to myself. I will not let folliculitis decalvans and hair loss issues make me hopeless, despondent or depressed!! So instead? I count my blessings and am grateful. I find humor in the situation. I smile. I laugh. I maintain a positive attitude. I evade tearful mood swings. I choose joy. Because I have at last learned that happiness is a choice!! And I choose to let folliculitis decalvans change me in only positive ways!! For during the course of this Summer alone, I have evolved, grown and matured as a person!! All because of an embarrassing disease called folliculitis decalvans. How so? Aside from counting my blessings and being grateful? Finding humor in the situation? Aside from smiling? Laughing? Maintaining a positive attitude? Aside from choosing joy and happiness? Uncharacteristically evading tearful mood swings? Oh, where to begin....? I have learned unexpected lessons in vanity. By the way? I continue to learn this lesson!! I have found myself crushing on Vin Diesel. What? He is completely bald!! And I have never crushed on a celebrity who does not have any hair!! Ever!! This is a cosmic first for me!! See, every male celebrity that I've ever crushed on has hair!! I have accepted folliculitis decalvans' inevitable progression. Because there is absolutely nothing I can do about it, anyway!! I have gained self-acceptance. And I continue to learn this lesson!! I have become less self-conscious. And I continue to learn this lesson!! Yeah, I am actively working on that one!! I have begun noticing bald/balding men and--for the very first time!!--I find them attractive!! Did I mention that I'm crushing on Vin Diesel?! I have gained self-acceptance. Again. Because Life--for me--is seemingly one self-acceptance issue after another!! And I have completely redefined my definition of "beautiful". I know now more than ever that it isn't physical appearances!! For "beautiful"--to me--does not mean a pencil-thin body. No. "Beautiful"--to me--does not mean being laugh line-free. Quite the contrary!! I, for one, find laugh lines very attractive!! Especially Robert Downey Jr.'s!! And "beautiful"--to me--definitely does not mean having no surgically-created Frankenstein-like craniosynostosis scars and a full head of hair!! Because "beautiful"--to me--is what's inside.

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.

Wednesday, August 13, 2014


Blogging Friends.... So I disappeared off the face of this Online planet, and, for nearly twain--TWAIN!!--weeks, I did not post on Beautifully Unique!! Whoops. That was purely unintentional!! But with being happily preoccupied as an Aunt to "Amethyst" and "Opal", I stopped posting for thirteen days!! So I guess you can say I went on a "Blog-cation"? I have, of course, continued writing {Nearly every single day!!} because writing keeps me sane!! Love you later.
Ten thousand years will give you such a crick in the neck! --Genie

Did you rub my lamp? Did you wake me up? Did you bring me here? And now all of a sudden you're walking out on me? I don't think so, not right now. You're getting your wishes, so sit down! --Genie

Tell her the truth! --Genie

I awoke yesterday morning at 5:45 AM. I was groggy, physically tired, and needed at least one more hour of sleep. Which, by the way, I got!! But my crazy never-shuts down head always seemingly wakes up faster than my body!! And I do not even drink caffeine-loaded coffee!! The very first thoughts that appeared within my head yesterday morning? Those above Genie lines from Walt Disney's animated film, "Aladdin"!! Now this was anything but random. And definitely unlike when I quote Tony Stark/Iron Man lines on a daily basis!! It was completely unplanned. I mentally quoted those three Genie lines in memory of Robin Williams, as he played his voice. Then my emotions were confused. Should I smile? Cry? Laugh? I think I smiled!! Confession. I haven't seen many--if not most--of Robin William's films. However. This does not erase the very fact that--thanks to Genie--I grew up with Robin Williams. When I saw's shocking red-boxed "breaking news" about this beloved Hollywood actor's death, my reaction was a dramatic, "Oh my gosh. Oh my gosh. Oh my gosh!!" And I had yet to even read the words "apparent suicide" or later hear on a local/nation-wide radio news station how, exactly, Robin Williams killed himself. Like every single one of his fanatics, I was left feeling shocked, saddened, and heartbroken. Then I thought this. Just last year, I read a Parade magazine article about him. I thought he was doing good!! After those three Genie lines appeared within my head at 5:45 AM yesterday morning, the song "Friend Like Me" from "Aladdin" also did, as Robin Williams sang it himself. I love an actor who can sing!! So did the song "Prince Ali", as Robin Williams also sang it. Once I awoke around 7AM, I began thinking. If those three Genie lines can just pop into my head, then I must have really liked that character!! Huh. I do remember crushing on Aladdin. As well as--thus according to my sister--Jafar. Because I'm an oddball, I have always had a thing for villains!! My sister has even teasingly said that I am "addicted to bad guys"!! Maybe. Maybe not!! Now as for my liking Genie? I makes perfect sense, since I have always loved crazy dudes!! Robin Williams was a cosmic part of my childhood. And truth be told? Genie has remained a cosmic part of my Life!! See. In my Life Story, I wrote this. You know what? If some crazy blue genie voiced by Hollywood actor Robin Williams in a shiny golden lamp were to allow me three wishes, I would request away my premature short-term memory loss. That's right. Three times. Perhaps in doing so, one could at least become reality. Wouldn't that be nice? Of course. Genie would most likely never allow me the same three wishes, as he was a stickler for rules. But I had to try. Right?! Then later I wrote this in my fictional book, "Made For Each Other". {February} All I want is to be 'normal', whatever 'normal' is, Julian has often thought, If some crazy purple genie in a shiny golden lamp were to give me three wishes, I would ask away my short-term memory loss. Yes. That, too, was inspired by Robin Williams/Genie!! I will close this with these lyrics.

You ain't never had a friend, never had a friend,
You ain't never had a friend, never had a friend,
You ain't never had a friend like me!
You ain't never had a friend like me!

Goodbye, Robin Williams....