The "Breakdown"

Blogging Friends.... Remember when I wrote that I had experienced a minor mood swing-infused pity party and I'll write about it later, because I'm still processing everything? Well. It is later!! And I am definitely finished processing complex thoughts/feelings/emotions now.... This is me being real. Love you later.

Look for my October fictional children's book on Minuscule is good! as it strangely has yet to have any comments or pageview counts!!

Gasoline. Exhaust. Oil. I grew up as a girl frequently inhaling all of these smells and then some because my Dad was an amateur mechanic. As odd as this may sound? Today, I love these "car smells"!! See. My Dad would purchase various rusty old cars. Pop open their hoods. Take tools to engines and such. And then he would fix these rusty old cars' mechanical issues!! I recall my Dad pulling out entire engines and setting them on our backyard patio. Then? He would put them back in completely repaired!! And I have some fond childhood memories of my Dad's cars!! Many, I'm afraid, I do not recall!! But there was a baby blue Ford pickup truck. If memory serves me? My Dad used to take me for drives in that old baby blue-painted Ford pickup truck!! Just him and I!! There was a green Datsun 510 wagon with an orange door. If memory serves me? That Datsun 510 wagon broke down on my Mom in a Safeway parking lot once!! Whoops. Then, like an apologetic knight in shining armor, my Dad rescued us, alongside a tow truck driver!! He later repaired its issues at home!! My Dad was also a mechanic by necessity. See. Our family vehicle was an old yellow and white Chevrolet suburban. Talk about years of memories we have with that car!! Its breaks went out on our way home from a park. That was an incredibly terrifying experience!! Yikes!! Our nerves were the only things that became wrecked, as Mom somehow managed to safely park it a few short blocks from home and we all walked back!! No injuries or collisions!! Thanks be to God!! Speaking of injuries. I slammed my right hand thumb in this Chevy suburban's middle seat door. Ouch!! Because I'm insane or stupid or both, I yanked my thumb out of that door, which was not closed tight. Blood freely gushed through its nail. So I sucked on my thumb like a sleepy toddler!! Yum? I actually like the taste of my own blood!! I never fractured the thumb, though!! However. My thumb nail did turn various hues of blue, purple and yellow before about 1/3 of it fell off. Which greatly fascinated me, because I am an oddball!! I also fell out of this old Chevy suburban while on roller skates. Ouch!! See, its spare seat folded down which caused a smooth surface. As resulted, I hit the back of my freakishly hard skull and sustained a head injury, while blood freely gushed out!! Is that why I am so crazy?! This yellow and white Chevy suburban also broke down on our way to camping one August day. We slept in a hotel overnight so that my Dad could fix its mechanical issues. Yes, old cars are prone to breakdown. Even if they have a good mechanic who performs routine maintenance work on them, and an incredibly reliable engine underneath the hood. Breakdown happens. Metaphorically speaking? Throughout my journey with folliculitis decalvans, I am an old car. Can I be a baby blue-painted Ford pickup truck?! Wait. Then I am not a car after all.... But this old truck can carry around "loads" such as her nieces, "Amethyst" and "Opal"!! I'm alright with that!! So metaphorically speaking, I am an old truck!! I'm "rusty" in some areas--I do have occasionally visible bald spots--but "underneath the hood"? My "engine"--sanity, mind, heart and soul--have been running strong!! For the most part. With seemingly a lot of routine maintenance work done--sorting through negative thoughts/feelings/emotions regarding having folliculitis decalvans--there were no "breakdowns"!! Not yet. But rusty old trucks are still prone to "breakdown". Right? And precisely one month ago yesterday, on September 12th, 2014? This rusty old baby blue-painted Ford pickup truck--me!!--"broke down". Hello, minor mood swing-infused pity party!! On September 12th, 2014? I was scheduled for a follow-up appointment with my dermatologist, Dr. E.   Which had been changed twice!! Ugh. For reasons beyond my comprehension? I was nervous during our appointment. Despite the fact that Dr. E. feels more like an amazing friend than a dermatologist!! Was it perhaps because I had been awake since 5AM? Yes, I felt tired. Yet, I had been running on adrenaline during this entire appointment!! Was it perhaps because I'd already felt uncharacteristically tearful for twain days? I do not know. But I was nervous. Dr. E. and I talked while I showed off Baldy's next door neighbor. I asked her some prepared questions about folliculitis decalvans, as I had Google-searched it. She answered them to the best of her knowledge, since there truly is very little information available on this rare disease. Dr. Erin examined my scalp, then administered several steroid injections. Which do not even hurt!! Because I possess a freakishly hard head.... Remember?! I expressed my thoughts/feelings/emotions about swallowing ineffective medication to Dr. E., as "Plan C" {Our third prescribed antibiotic that I cannot remember the name of!!} was obviously ineffective. "It wreaks havoc on my emotions," I told her, "To take something that's supposed to be working.... But still lose my hair." I drove this point home. Yes, I repeated myself, because I'm obsessive compulsive like that!! But ultimately? Dr. E. gave me several sample bottles of "Plan B", which, we had barely tried before quitting it's prescription for non-side effects reasons!! Well. Technically, since Plan B is a contraception, I should not call it that!! So how about this? It is "Experiment B"!! Dr. Erin also gave me several sample bottles of a topical steroid spray.... Because my form of folliculitis decalvans is now considered "severe". Wait. What?! This was not how I planned my appointment with Dr. E. would go!! Uh-uh. I was planning to let it go!! Is the song from "Frozen" in your heads yet?! Good!! I was planning to finally accept folliculitis decalvans' fate and lose my beautiful, straight, brunette hair. That's right. I was planning on saying goodbye to Dr. E. .... Forever. Yes, I was planning for this to be my last follow-up appointment with Dr. E.   Which may have been why I felt so freakin' nervous that day!! Hmmm.... I was even planning to voluntarily go hat shopping!! Yes, I was planning.... Perhaps I should have been more assertive with Dr. E., as I'm now beginning to feel like a human medical experiment. I mean, come on. This drug is proving itself ineffective? Alright. Try this one, instead. I even wrote a fictional children's book in August expressing how I was planning this appointment with Dr. Erin. Guess what? My character, Victorya, was not nervous. Quite the contrary!! Victorya was definitely assertive!! And she even donated her hair to Locks of Love!! Remember?! Writing this story was both emotionally difficult and therapeutic for me at once!! I even wrote Dr. E. a goodbye letter. Which I was never planning on giving her!! Doing so simply proved itself touching, emotional and therapeutic. As my nurse {Not Dr. E.'s usual "sidekick". I'm afraid I do not recall this nurse's name!!} looked through my thick medical file, and discussed "Experiment B"? I could sense that something was "mechanically" wrong "under the hood". And sure enough. This rusty old baby blue-painted Ford pickup truck--me!!--"broke down". Enter my first--and most likely not the last!!--folliculitis decalvans-related minor mood swing-infused pity party!! I wept uncontrollably all day. Afternoon. Evening. And night. I could not even hold back my tears in a darkened, deserted movie theater while watching "Dolphin Tale 2"!! Which, I felt terrible about!! This rusty old baby blue-painted Ford pickup truck--me!!--was seemingly not showing any signs none whatsoever of starting its "engine"--sanity, mind, heart and soul--again. As per usual? I did not expect this "breakdown". No, I never saw it coming. Because my "engine" had truly been running strong throughout this entire folliculitis decalvans journey {With humor, gratitude and perspective gained along the way!!} I have never even allowed myself to cry over having folliculitis decalvans or hair loss issues. However. I do invite negative thoughts/feelings/emotions in. Because they are perfectly "normal" and always fleeting. I have been putting on a continual "brave act". This rusty old baby blue-painted Ford pickup truck--me!!--was bound to "break down" at some point!! I then journeyed through a period of confusion. I was bombarded with queries. What on earth has God been teaching me all this time?! I thought.... That He had been teaching me lessons against vanity. I thought.... That He had been teaching me the truth in--to quote our dear, dear, dear friend and breast cancer survivor--"Hair is highly overrated". I thought.... That He had been finally teaching me a profound sense of gratitude for my twain Frankenstein-like surgically-created craniosynostosis scars. I thought.... that He had been teaching me self-acceptance. I thought.... That He had been teaching me how bald is beautiful and physical differences are indeed alright. I thought.... That He had been teaching me the strong, unmistakable, impossible-to-ignore message of letting go. What on earth has God been teaching me all this time?! Honestly? I did not have any answers during my "breakdown". Is God teaching me.... To trust His Plans--whether or not I lose my beautiful hair while swallowing "Experiment B"--throughout this entire folliculitis decalvans journey? Is God teaching me.... Gratitude for how Dr. E. has so very graciously leapt through hoops to help save my hair from the progression of folliculitis decalvans? I suppose I should have been thrilled, excited, relieved and jumping for joy after my appointment on September 12th. But I was not. Instead, I felt so very lost, like a hiker in unfamiliar woods sans her compass. Do I want to lose my beautiful hair and go bald? Of course not!! Who would?! But the difference in my thoughts/feelings/emotions now as opposed to one year ago? I am no longer Drama Queen desperate about embarrassing hair loss issues!! Because I don't give a damn!! But truth be told? I would never wish folliculitis decalvans on an enemy. Ever. Perhaps my plans did not unfold quite like I had imagined they would that September day. But God's did!! Because, perhaps this rusty old baby blue-painted Ford pickup truck--me!!--"broke down". But God? He is my "Mechanic", if you will, Who took His "tools" then fixed this "engine"--sanity, mind, heart and soul--so that I can run strong once more!! Because, ever since I "broke down" last month? God has reminded me that we are all students during our Lifetimes. What on earth did I think....? That He was finished teaching me folliculitis decalvans-related lessons?! Quite the contrary!! Because aside from God teaching me lessons against vanity? Aside from Him whispering that hair is highly overrated? Aside from God instilling in me a profound sense of gratitude for my twain Frankenstein-like surgically-created craniosynostosis scars? {Because, after all. Without them, I would be dead!!} Aside from God gradually working in me self-acceptance issues? Aside from Him whispering that bald is beautiful? Aside from God broadening my perspective about visible physical differences being absolutely alright? Aside from God encouraging me to trust His Plans {Whether or not I lose my hair and go bald despite swallowing "Experiment B"} throughout this entire folliculitis decalvans journey? Aside from Him teaching me humble gratitude toward Dr. E. for so very graciously leaping through hoops to save my hair? Aside from God's strong, unmistakable, message of letting go? God is also teaching me.... That Hollywood actor Vin Diesel can turn me on with his boyish smile and charm alone--despite being bald-headed!!--so I do not even need to notice guys with long, flowing hair anymore!! God is also teaching me.... To never, ever, ever lose hope.... And that I must place it in Him, not medications or treatment. God is also teaching me.... That this folliculitis decalvans journey is an adventure.... Not a trial and tribulation. God continues to teach me.... So metaphorically speaking, I am an old baby blue-painted Ford pickup truck. And now? Whenever I see my "rusty" areas--bald spots--in a mirror? I smile. Because they are reminders of all the ways that my "Mechanic"--God--is working on me. They are reminders of all the ways that He is growing, evolving, and maturing me!! But sometimes? Rusty old baby blue-painted Ford pickup trucks "break down".                     

Cranio Girl Power

Blogging Friends.... Did you know....? That September is Craniosynostosis Awareness Month?! Well. It is!! In honor of my birth defect--and everyone who was born with it--here is a Blog post from an adult survivor's ever-evolving perspective!! {Mine, of course!!} Whoops, that sounded so very self-obsessive!! Carrying on. Love you later.

Sorry for not posting on Beautifully Unique since--gasp!!--August 30th. That was purely unintentional. Truth be told? My heart has apparently not been into Blogging lately. Plus this post wasn't yet ready!! But writing? It keeps me sane!! So I have written nearly every single day!! Now. Do not worry about me. I am fine.... I'm not experiencing any minor mood swing-infused pity parties!! I have just simply found myself in a prolonged season of soul searching regarding living with folliculitis decalvans. Life is good!! And I am happy!!

{These facts were taken from my Life Story!! Which, originally? They were taken from--if memory serves me!!--The Jorge Posada Foundation!! He has a son who was born with my birth defect.}

Craniosynostosis is when an infant’s sutures fuse too early and it affects the growth of the brain. Often, the end result is an infant with an abnormally shaped head. An infant’s brain begins to grow before birth and continues to grow throughout the infant’s first three years of life. At birth, an infant has 40% of his/her adult brain volume and this increases to 80% by three years of age, and to 90% by seven years of age. An infant’s skull consists of bones that are separated by soft joints called 'sutures'. The 'soft spot', or fontanel, is where the sutures meet on the top of the forehead. As an infant’s brain continues to grow, the sutures continue to grow. Throughout an infant’s first three years of life, an infant’s sutures will close or 'fuse' in sequence. Craniosynostosis may involve the premature closure of a single suture or multiple sutures in the case of a syndrome. Craniosynostosis, if left untreated, can cause severe and permanent damage. An infant may have increased intracranial pressure, seizures, neurological deficiencies, eye problems, malalignment of the spine, and cognitive and developmental delays.

Craniosynostosis. Over thirty years ago, I was born with a head of curly brunette hair. And I had craniosynostosis. Translation? I was born without any soft spots!! 1 out of 2,000 babies are typically effected by craniosynostosis. There are five different forms of this birth defect. Unicoronal. Metopic. Bicoronal. Sagittal. And, the rarest type of craniosynostosis. Lambdoid. It affects 1 in 100,000 births. Since I'm fairly confident that--according to pictures--my form of craniosynostosis was sagittal, I am 1 out of 2,000. You know what? I have grown to really love that statistic!! 1 out of 2,000!! Although. 1 in 100,000 would have been even more awesome!! My skull had been horribly disfigured--Mom said that it protruded from the forehead and back--when Dr. J. entered our Lives. He would perform twain separate reconstructive skull operations. Together, these surgically-created scars form an upside down "T". My "part"? It is twain craniosynostosis scars!! As a matter of fact. Dad even teasingly referred to me as "Frankenbaby" due to these scars. Yes, Frankenbaby!! But it was spoken lovingly, of course!! Ha. And Dad was not kidding. I have seen pictures. I did resemble Frankenbaby!! "Surgery will be just like setting a broken arm," Dr. J. confidently told Mom and Dad. However. If I--an adult "Cranio" survivor--were to describe the operation in three words, it would be this. Invasive. Terrifying. Miraculous. See, Dr. J. removed parts of my skull--and at one point threw some forehead bones away!!--then "rebuilt" it like an intricate, detailed Lego creation!! Not once. But twice!! Dr. J. said that my craniosynostosis was "severe", and he had never seen such a bad case!! Shudder!! I had also been apparently suffering from painful migraines because of skull pressure and I'd stopped sucking Mom's breast milk, unbeknownst to her. See. My mouth had latched onto Mom's breast. But I was not sucking any milk. That figures. Even back then I was putting on "brave acts" during times of suffering!! Was this an inborn trait?! I cannot help but wonder. See, I was a different case of craniosynostosis. Because while this birth defect--best as I can tell from research--is not in any way, shape, or form, fatal, when Dr. J. surgically repaired me, he saved my Life!! Yes, without his hard-earned skills and God's Amazing Grace, I would be dead!! Craniosynostosis, for the most part, only affects male infants. I am, most assuredly, a girl!! Although females can be--and are--born with craniosynostosis. It just is not as likely to occur. Any Google-search of craniosynostosis will--honestly!!--spin in this direction. A concerned mother expressing that her son has just been diagnosed with the neurological birth defect. It is seldom ever daughter. There are even craniosynostosis awareness Websites that manufacture onesies, bibs, and T-shirts which feature the phrase: "Chicks dig scars". Why yes, they do!! This I can personally prove!! So, I am a girl, who was born with craniosynostosis. I broke that medical rule. Thus, as per usual, I am exempt!! Which can only mean one thing. I was born a rebel!! Yes, it is my birthright!! Being a rebel!! I shall call this "Cranio Girl Power"!! You know what? That has a nice ring to it!! "Cranio" Girl Power!! The cause of craniosynostosis is unknown. It is sporadic. It can be present at birth (congenital). It can be hereditary. The hereditary form often occurs with other defects. Uh-oh. I was also born with congenital diaphragmatic hernia and Wolff–Parkinson–White syndrome!! Well!! I do have a nephew, "J.", who was born with craniosynostosis!! Not sagittal, though. And they told my oldest sister that it was not hereditary?! Hmmm.... However, most cases of craniosynostosis occur in a family with no history of the condition. See. It is by "chance" that infants are ever born with craniosynostosis. Like the rolling of dice. Or some gambling game. I--among every other individual born with craniosynostosis--am like Heaven's poker game with chips, cards, and money bet. I must have been "chosen". For reasons beyond anybody's--beyond my own--comprehension. But not God's. I didn't know until recently that my craniosynostosis was "severe", or I'd been suffering from painful migraines and stopped sucking Mom's breast milk. However. I have always known this. Mom and Dad accepted Jesus Christ as their Savior because I was born with craniosynostosis!! See, I had been scheduled for operation number three. Dad complained to a co-worker about our problems. "Take your daughter to my church," he boldly suggested, "There she'll be prayed for. She'll be healed!!" Which is exactly what Mom and Dad did!! They drove to his Pentecostal foursquare church {Which, sadly, no longer meets there!!} I was prayed over, and God healed me, for I no longer needed operation number three!! Thanks be to God!! You know what? I believe this was a triple miracle!! Dr. J. reconstructed my skull!! God healed me!! Mom and Dad became Christians!! Yes, I have always been aware of our family's testimony!! But I never looked at that positive. Why? Because, as resulted from being born with craniosynostosis and having my skull reconstructed {Twice!!} I live with unwanted premature short-term memory loss. And that is what--for far too many years!!--I chose to focus on. The negatives. But my premature short-term memory loss {This learning disability} is what I lost through being born with craniosynostosis. Look at everything I have gained in Life despite having been born with craniosynostosis!! Because today? I am thirty-years old!! I have owned twain beautifully unique mutts--first Shadow Sunshine and now Rose Elizabeth!!--since I was nearly sixteen years old!! I just wrote my thirteenth--13th!!--fictional book!! I have twain adorable nieces under the age of three, "Amethyst" and "Opal"!! Wow. None of this--and then some--would have ever occurred sans Dr. J.'s hard-earned skills!! Not to mention God's Amazing Grace!! And now? Over one year ago, I was diagnosed with folliculitis decalvans. I am losing my beautiful hair. Eventually I will be completely bald. In a matter of time, I'll unveil those twain hidden craniosynostosis scars. And lately? I have felt self-conscious--ashamed even--of my craniosynostosis scars!! And during the rare, fleeting occasion when I delve into feel-sorry-for-me thoughts/feelings/emotions? Honestly? I think that somebody such as myself should not have folliculitis decalvans. Somebody such as myself should not be losing her hair. But complex thoughts/feelings/emotions set aside? Until my diagnosis of folliculitis decalvans, I was never grateful for any of the positives that have arisen from being born with craniosynostosis/Dr. J.'s skills. And now? Although, I do continue to feel self-conscious of my craniosynostosis scars. I am actively working on that!! When I think about my Frankenstein-like craniosynostosis scars? I am thankful for them both!! Because I'm so very glad to be alive!! Question. Why did it take a journey with folliculitis decalvans for me to truly become thankful for my craniosynostosis scars?!

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!! 

"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.

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.

An Unlikely Superhero

Blogging Friends.... Did you know that it is Batman Day?! No? Neither did I until finding out!! Apparently the Dark Knight turned 75 years old today, hence why this date is dedicated to him!! Honestly? Batman was never truly my very favorite superhero. {But I loved Robin!!} However. Because I have an older brother, Batman was my first word!! True story, I'm afraid!! Anyhoo. In correlation to this being Batman Day, here is a superhero-themed Blog post!!

{Taken from my private Word document journal!! Some changes were made, as per usual!! It was written--for the most part!!--on July 20th!!}

I have often considered myself as somewhat of a superhero. Like an X-Men. By the way? I like Wolverine!! Oh, and Jubilee!! I have often considered my powers as being inborn, like Superman's. Because I am an alien!! I have often considered myself as not having been a self-created superhero, like Iron Man. No offense, Tony Stark!! However. I am an unlikely superhero. In more ways than one. According to my Blogging Friend, Robyn {Who founded TinySuperheroes!!} having been born with craniosynostosis, congenital diaphragmatic hernia, and Wolff–Parkinson–White syndrome--therefore overcoming such severe birth defects--would qualify me as a superhero!! I like that!! As a matter of fact. My journey with folliculitis decalvans {And somehow maintaining an out of character, un-victimizing, positive attitude!!} might also, according to Robyn, qualify me as a superhero!! I like that!! And according to my Blogging Friend, Ellen {Who has a Beautifully Unique son with cerebral palsy named Max!!} my developmental delays, learning disabilities, attention deficit disorder and--yes--dreaded premature short-term memory loss, would qualify me as possessing superpowers!! I like that!! Today Michael {Who has at last accepted my probable furthermore hair loss!!} called me Ben--aka The Thing--because of his "bald head". To which I laughed!! "I'm The Thing!!" I exclaimed, a cockeyed smirk written on my face, "I love it!!" I then lowered my voice to a deeper man-like tone. "It's clobberin' time!!" I said. "We have something in common, The Thing and I," I added in my "normal" voice, "Neither one of us can hide the way we look. When I lose my hair and go bald, my hair won't grow back." I am The Thing!! So much for my superhero powers being inborn....

I Am A Freak!!

Blogging Friends.... This has easily been the busiest Summer of my Life {And I am not in any way, shape, or form, complaining!!} Every Tuesday, we have been watching my niece, "Amethyst"!! All. Day. Long!! And every Friday, we have had my ten-year old cousin. All. Day. Long!! So please pardon me for being a stranger to all of your Blogs!! I will return.... Eventually!! And please excuse Beautifully Unique's random posts of late!! I am working on a story about Rose!! Slowly but surely!! My Life right now has seemingly become a purpose-given combination of spending quality time with Rose, watching kids, and writing!! Love you later.

Taken from my Life Story!! Which was written in 2012 through 2013!!

I am a freak. This birth defected, learning disabled, weird and crazy freak!! Plus, I am an oddball, too!! I shall announce this "loud and proud", as that phrase goes. Yes, loud and proud. For I shall stand atop the balcony of some tall skyscraper. And scream. I!! AM!! A!! FREAK!! Because I am definitely not human!! And, that is okay. You know what? Society says "freak" as though it's a negative thing. Yes, negative. Oh, and you must automatically need therapy on account of being a freak!! I do not like that mindset. And, why is it, exactly, does society think of "weird" as being negative? Like "weird" is some fault or shortcoming. I do not like that mindset, either. For society has long-ago deemed anybody who is different--whether developmentally, physically, or both--as some "freak". Like they are an animal infected with rabies. But I think that the word freak (And weird!!) should be used only in positive ways. I am a freak. I am a freak!! Or, as my phrase goes, I'm Beautifully Unique. A Beautifully Unique freak. (Hey, it rhymes!! The poetess within me likes that!!)

Taken from my private Word document journal entry!! Which was--for the most part--written yesterday!!

Ever since I was a teenager, I've considered myself a freak. Inhuman. How so? I was born defected, with craniosynostosis/congenital diaphragmatic hernia/Wolff–Parkinson–White syndrome. I have, my entire Life, lived with premature short-term memory loss as though I'm some middle-aged person. I am a learning disabled individual. I'm "hard to kill", as that phrase goes. I am both physically and emotionally resilient. I'm a weird, crazy, misfit, outsider oddball. You know what? I have long felt like a mutant from X-Men. However. I am--throughout time--gradually gaining self-acceptance regarding my birth defects, premature short-term memory loss, learning disabilities, and being a weird, crazy, misfit, outsider oddball!! I. AM. A. FREAK!! And now? Thanks to folliculitis decalvans, I will possibly eventually look like a bald-headed freak with Frankenstein-like craniosynostosis scars. Bring it on!!

Not Brave

Blogging Friends.... I found this quotation Online the other day. Gail Porter has alopecia {Which is not quite the same as folliculitis decalvans!!} She has experienced hair loss and is now completely bald. I learned a little about Gail Porter this morning. She absolutely refuses to wear wigs or hats!! Wow, I think I like her!! I hope that when--if--I lose my beautiful hair and go bald, I, too, will tout it.... Surgically-created Frankenstein-like craniosynostosis scars and all!! Somehow, I think I will!! What an inspiration this Gail Porter is.... Love you later.      

What's so brave about being bald? I've not fought for my country or found the cure for cancer - I've just gone out without my hat on! --Gail Porter

I'll Still Be Me

Blogging Friends.... This was written in my private Word document journal/diary on June 20th. Some changes were made!! As per usual!! I wrote it specifically with my youngest brother, Michael--who does not take well to change--in mind. But truth be told? As I still find myself {Occasionally!!} processing the Reality that I'm more than likely going to lose my hair because of F.D., I also wrote it for me!! And I meant every single word!! I'll still be me!! Love you later.

Look for my July fictional children's book to be posted on Minuscule is good! {Lord willing!!} on July 1st!!

  

I'll still be me
Just a normal girl from small town nowhere
I'll still laugh at your jokes and argue over silly things

I'll still be me
If you can count on one thing, I'll be here
The same girl that you've known for centuries --Martina McBride

When--or if--I lose my beautiful straight brunette hair, go bald, and transform into Frankenstein, will it be a cosmic Life change? Absolutely. But one thing is definitely certain. I'll still be me!! Because when--or if--I lose my beautiful straight brunette hair, go bald, and transform into Frankenstein? I will still have unwanted premature short-term memory loss. When--or if--I lose my beautiful straight brunette hair, go bald, and transform into Frankenstein? I will still possess the reputation of being clumsy. When--or if--I lose my beautiful straight brunette hair, go bald, and transform into Frankenstein? I will still be a Children's Book Writer. When--or if--I lose my beautiful straight brunette hair, go bald, and transform into Frankenstein? I will still be a church-going Christian. When--or if--I lose my beautiful straight brunette hair, go bald, and transform into Frankenstein? I will still be Rose's Mama. When--or if--I lose my beautiful straight brunette hair, go bald, and transform into Frankenstein? I will still play Wii with my youngest brother, Michael on a regular basis. When--or if--I lose my beautiful straight brunette hair, go bald, and transform into Frankenstein? I will still be a proud Aunt. When--or if--I lose my beautiful straight brunette hair, go bald, and transform into Frankenstein? I will still be known as "the fun one". When--or if--I lose my beautiful straight brunette hair, go bald, and transform into Frankenstein? I will still be silly. When--or if--I lose my beautiful straight brunette hair, go bald, and transform into Frankenstein? I will still laugh. When--or if--I lose my beautiful straight brunette hair, go bald, and transform into Frankenstein? I will still experience minor mood swing-infused pity parties. When--or if--I lose my beautiful straight brunette hair, go bald, and transform into Frankenstein? I will still be hopelessly flawed with a laundry list of character defects. When--or if--I lose my beautiful straight brunette hair, go bald, and transform into Frankenstein? I will still be a huge Robert Downey Jr. fanatic. When--or if--I lose my beautiful straight brunette hair, go bald, and transform into Frankenstein? I'll still be me!!

I Have Folliculitis Decalvans

Blogging Friends.... I wrote this in last week's post.... I have been embarking on yet another cosmic self-acceptance journey throughout the past few days, experiencing some soul searching, maturity, and thinking profound thoughts. Ooohh, scary!! Love you later.

My entire thirty years of Life has been seemingly one cosmic self-acceptance issue after another. I live with unwanted learning disabilities. I can't--no shouldn't--pursue my lifelong dream of being an author. And.... I am most likely going to lose my beautiful straight brunette hair. Why? Because I have a condition called Folliculitis decalvans {F.D.}, and have since last Summer. I finally took the time to research it!! This ailment, apparently, also has several other names, as well!! Folliculitis decalvans is a form of alopecia (hair loss) that involves scarring. It is characterised by redness and swelling and pustules around the hair follicle (folliculitis) that leads to destruction of the follicle and consequent permanent hair loss. Folliculitis decalvans is one cause of cicatricial alopecia (baldness with scarring) and is sometimes known as tufted folliculitis. I've even found several Online forums written by others who have suffered from F.D. before me, so now I know what, exactly, to expect. Such as watching clumps of my hair fall out in the bathtub during showers. Awaking to blood-stained pillows. Or taking ineffective medications. Folliculitis decalvans. Do all head ailments have long impossible to pronounce names?! Like, say, craniosynostosis?! Speaking of which. I have been bald before. Years ago, when I was an infant, and Dr. J. shaved off my curly hair prior to repairing the craniosynostosis. With twain surgically-created scars forming an upside down "T", I looked like Frankenbaby. That was what my Dad lovingly called me!! "Bald is beautiful". So the phrase goes. Which usually pertains to cancer patients. But nonetheless. "Bald is beautiful". Nothing against cancer patients--they are truly inspiring people--but I sit here unconvinced. Bald isn't beautiful. Not on me. Bruce Willis rocks a bald head. As did Britney Spears. It was during her wayward child years. This I know. But she has turned out okay!! Right?! And, yes, cancer patients rock a bald head. But me? With my surgically-created craniosynostosis scars? Bald will make me Frankenstein. You know what? I have never been a vain individual. Ever. I have never been interested in clothes. I don't wear makeup on my face. Not eye shadow, blush, or lipstick. I do not stare at my reflection in mirrors for hours and hours and hours on end. I have always lived the firm conviction that God does not care about outer appearances, for it's what is within us {Character qualities} that matters most to Him. No, I have never been a vain individual. Then, suddenly, everything that I firmly believed in drastically changed. All because I lost a patch of hair on my head. All because of F.D. I will never forget the moment when my youngest brother, Michael--who has Down syndrome--noticed "Baldy". I had just showered. This is when dripping wet hairs tend to part so that "Baldy" {Always red and inflamed after showers} shows itself. Shamelessly. And I have never been more self-conscious before in my entire Life. Ever. I began checking mirrors and my reflection on our Chevrolet van's windows to be certain that "Baldy"--which can be covered by hairs--is not showing itself. Then I wondered why I was acting so vain. We made an appointment with this awesome dermatologist, Dr. Erin. Attempting my very best to maintain a sense of humor during an unfortunate situation, {Something I learned from being Robert Downey Jr.'s fanatic!!} I referred to my hair loss as "Mr. Snake Skin Bald Patch", meanwhile charming everybody!! I loved making them laugh!! Dr. Erin performed a needle biopsy on "Baldy". The area was numbed. However. Having been born with craniosynostosis, I possess a freakishly hard skull!! I never even felt the needle as it was injected into "Baldy"!! My face swiftly became numb. I felt that!! The numbing medication accidentally dripped onto my arm. I felt that!! Blood dripped onto my arm during the needle biopsy. I felt that!! I will never forget my thoughts, feelings and emotions which followed the needle biopsy. Waiting for an unknown diagnosis--as everyone very well knows--can transform you into a hypochondriac. Even if you are not one!! I will never forget how devastated I felt upon learning of the diagnosis--my hair is falling out--I just wanted to cry, because I'm a Drama Queen like that. Yet. No tears streamed down my cheeks. Somehow. Just what I needed, I thought, Another physical imperfection to add to all of my other physical imperfections!! I already have a scar on my abdomen because I was born with congenital diaphragmatic hernia. I already have a short right hand ring finger and no knuckle there. I already have a cockeyed smirk because I had Bell's palsy. I already have two scars on my head because I was born with craniosynostosis. Did I need another physical imperfection?! I will never forget the feelings of denial I'd experienced regarding "Baldy" always being there. I just repeated this question to Dr. Erin over and over and over after several appointments. "My hair isn't gonna grow back there?" So I have been attending check-up appointments with Dr. Erin. At first I was very reluctant, and possessed a bad attitude--because we wouldn't even need to see her if not for "Baldy"--but she swiftly became our friend. As did Nurse Olivia!! I was prescribed a medication in pill form. Plus we drive to Dr. Erin's office regularly and she injects my skull with steroid shots. Which only feels like several little pricks!! Both treatments have kept "Baldy" tame and I've not lost any more hair!! Thus far. But then I experienced a rare side effect from the pill form of medication. My skin is turning blue. Or, black, to the naked eye!! So now I have been prescribed a different pill form of medication. Which, for reasons that shall remain unknown here, I am discontinuing. I'm in the process now of obtaining yet a third pill form of medication. Provided that it is even available. However. Based on research, there are merely a few other treatment options available. And I am running out of treatment options. Which, inevitably, leaves me with absolutely no other choice. I will most likely lose my beautiful hair. Upon learning this, I just wanted to cry. Again. I could practically hear the sound of my heart breaking. Yet. No tears streamed down my cheeks. Somehow. I've never experienced any minor mood swing-infused pity parties over F.D. . I have, however, said/thought this cliché phrase. "It's not fair!!" Countless concerns have since ambushed me. When I lose my hair, will I look like some Frankenstein mutant from X-Men? What will people think? Will my appearance terrify children such as "Amethyst" and "Opal"? What about when I look at my bald scarred reflection in mirrors? Will it reduce me to tears? Will I look away or close my eyes? Will I become a mental/emotional fugitive and run from Reality, as I'm way too good at doing that? I have so many questions. So many concerns. And they keep building up within my head brick after brick after brick. Yet, I have very few answers. Further concerns will most likely ambush me. My Mom has promised that she'll crochet some cute chic hats. Ironically? I have worn hats before according to baby pictures. With my odd head shape, I cannot wear fashionable fedoras, as they don't fit. And baseball caps? For reasons beyond my comprehension, they tend to give me headaches. And wigs? Aren't they specifically manufactured for cancer patients?! Another concern. Will wearing cute chic crocheted hats--hiding my scarred head--help, or hinder, this ongoing self acceptance journey? I foresee images of me in a public restroom {Such as at church.} pulling off a crocheted hat, and staring at my bald scarred reflection. Another concern. Will I be forced to wear my crocheted hats in public places because mean people will stare, be frightened, or kick me out because of my scars? But then when I think about this head of mine? These surgically-created scars? I remember that because of Dr. J.'s miraculous skills--plus God's Grace--blood pulses through my veins and oxygen fills my lungs. For, honestly? If Dr. J. did not reconstruct my head like "he was setting a broken arm"--his exact words!!--chances are, I would be dead. See. I was born with a severe case of craniosynostosis. I'd suffered from unbearable migraines, and, as resulted, I quit eating. Despite my Mom's knowledge. So. Being "hard to kill", as that phrase goes, set aside? Dr. J. saved my Life!! And, more importantly? When I think about this head of mine? These surgically-created scars? I am reminded that because of craniosynostosis, I'm alive in Christ!! See. My parents became Christians as I was scheduled to have a third craniosynostosis operation. Yes, a third. But one of my Dad's co-workers suggested that I be brought to his Pentecostal church. There I would be healed, he confidently promised. My parents accepted the Lord as their savior, and I did not need any more craniosynostosis operations!! Thanks be to God!! When I think about this head of mine? These surgically-created scars? I realize that Dr. J. did a remarkable job, as he even took some bone from my forehead and threw it away!! When I think about this head of mine? These surgically-created scars? One thing is for certain. I would definitely not have currently written ten fictional books within less than twain years' time!! When I think about this head of mine? These surgically-created scars? I am 1 out of 2,000. Unless. Unless I was born with lambdoid craniosynostosis which is the rarest form. It effects 1 out of 300,000 babies. Now that is rare!! When I think about this head of mine? These surgically-created scars? I acknowledge that craniosynostosis is--and always will be--a cosmic, integral part of me. In more ways than one. When I think about this head of mine? These beautiful surgically-created scars? I cannot help but wonder this. Why shouldn't I proudly flaunt them?! My entire thirty years of Life has been seemingly one cosmic self-acceptance issue after another. I cannot help but question why. And more often than not, I haven't got any answers. However. In this such case of having F.D. and losing my hair? God is teaching me how to be less vain. And I did not think I needed this lesson!! But now? When I think about going bald? Losing my beautiful straight brunette hair? To quote from "Gone with the Wind". This line sums up every feeling that I have perfectly!! Frankly, my dear, I don't give a damn.