Wednesday, June 18, 2014

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 herniaI 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 babiesNow that is rare!! When I think about this head of mine? These surgically-created scars? I acknowledge that craniosynostosis is--and always will be--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. 




  

8 comments:

Molly The Wally said...

So sorry to read about your lovely hair but you are so strong and such a trooper you put the rest of us to shame. You are indeed a very special person and we love you for it. I think nothing life throws at you will deter you from your dream and that is as it should be.
Best wishes Molly

Raelyn said...

Molly....
Thank-you for the comment, Friend!!
"So sorry to read about your lovely hair but you are so strong and such a trooper you put the rest of us to shame. You are indeed a very special person and we love you for it." Awww.... Thanks, Friend!! ;op

Soggibottom said...

We're with Molly. So sorry babes. But well, it's not about the outside, it's about the inside...
We only ever visit beautiful inside people :-) lots of love x x x

Raelyn said...

Freya Rose Blossom....
Thank-you for the comment, Friend!!
"It's not about the outside, it's about the inside... We only ever visit beautiful inside people." Awww.... Thanks, Friend!! ;op

Tweedles -- that's me said...

And we only visit people with beautiful insides too
love
tweedles

Raelyn said...

Tweedles....
Thank-you for the comment, Friend!!
"We only visit people with beautiful insides too!" Awww.... Thanks, Friend!! ;op

Ruby said...

I know this must be hard for you. I know I would not want to lose my hair either. However, according to the Bible we are fearfully and wonderfully made. God knows what He is doing, and will work all this out for your good. I think you would look ADORABLE in knit hats! Also, think of all the new people you can meet now in F.D. forums? You are such a cheerful, light- just think of those you can encourage, and those who can encourage you? This will be used for good!

Raelyn said...

Ruby....
Thank-you for the comment, Friend!!
"According to the Bible we are fearfully and wonderfully made. God knows what He is doing, and will work all this out for your good." Thanks for that valid reminder!! ;)
"Think of all the new people you can meet now in F.D. forums? You are such a cheerful, light- just think of those you can encourage, and those who can encourage you? This will be used for good!" Awww.... Thanks, Friend!! ;op