Living with Harlequin Ichthyosis

Disorder not a disease

I've written a post similar to this I think but I thought I'd get into more details now since I have time..
Living with H.I is no easy task... From my first appearance into this world I have been doubted, as soon as I was born the doctors told my mom that I wouldn't make it through the night, if I did I wouldn't last much longer.... After a few weeks they said I'd be VERY limited to what I could do and couldn't do. I stayed in the hospital for a good while since I was so prone to infections, dehydration, etc..I came home and  my momma took fantastic care of me, as well as my grandma.

Lets skip to Kindergarten- I started school at 5 years old and hated it at first! It had always been me and my mom so leaving her side for 8 hours seemed like torture to me. I cried every single morning then a little boy who I thought was the greatest boy ever because he made me laugh, bought me a Cabbage Patch Doll to cheer me up in the mornings.. I still have it! Kindergarten went fine, I learned to like it since I had no choice (haha!). The only negative comment I remember hearing was when another girl told my friend not to play with me because "I was yucky and if we touched the same things, she would get what I had." soon after hearing it another friend of mine quickly snapped back "WHATEVER! You're just a b*tch! Thats not true!!!" She said as she touched my arm. Probably not the best way to handle it but I believe she made her point.

First grade I started wearing wigs because I felt like it was easier to blend in.. Well the shiny red skin isn't too obvious, right? Shoot, put a blonde almost yellow wig on a red kid you'll hardly notice her! Before that I wore hats that matched my outfit perfectly! I grew up in the 90's so big floppy hats were my moms pick. Thanks momma. We talked to my teacher on the first day of school and she talked to the class before I went into class... Keep in mind I attended a very small public school that the same kids I went to Kindergarten with were the same ones in my Senior class, give & take a few.

Going out in public was and still is an adventure. My mom used to get SO mad at people when they'd stare, point, gasp, etc.. She would get very rude with them quick. I'm her baby! No mom wants their kid to have to endure humiliation, rudeness, down-right meanness. My momma def. didn't put up with it and would always tell me I have to stick up for myself no matter what and to not care what people thought of me because God made me how he wanted me and theres a reason for everything.  My hometown is VERY small so word got around over the years so when I'm home no one really looks at me too different anymore.

As I got older I started having a social life. Hanging out with friends at the local skating rink or bowling ally was a pretty regular Friday night activity for me. The nearest mall was 45 minutes away (in the town im living in now) and its a pretty big town. Needless to say LOTS of stares, gasps, whispers and pointing. As I got older it never really bothered me much but when it did, it 'ticked me off' more than it hurt my feelings. I've always been pretty quick to defend myself but when I was at the mall with friends or out to eat my friends are the ones that jumped to my defense. I still have to tell Nikki (one of my longest best friends) to calm down, I got this!

Its always frustrating in a new town because my skin condition is so rare, hardly anyone knows anything about it. I'm all about spreading knowledge about my skin disorder to anyone, thats the main reason for my YouTube channel and this blog. The problem is people dont ask, they assume! You know what they say about people who assume, dontchya? ;) They  alwats think I'm suburned, stayed in the tanning bed too long or have an awful spray tan.. Theres a million and three other assumptions out there but we're not getting to all of them! Very rarely does anyone actually ask about my skin without being a complete ass. Honestly, I'm not sure of a particular "nice" way to ask but nudging your friend to gawk at the red girl then whisper is a sure way NOT to.

In my old age of 19, I've learned some sure fire ways of getting them to stop with hardly any communication at all.. Because frankly, after you experience some peoples ugliness you just don't have the strength to nicely educate them on your disorder without throwing a few choice words in the lesson.
1. Most of the time if you make it obvious that you see them staring, they'll stop due to embarrassment of just how much of a jerk they are. So look at them back.
2. If number 1 don't work because of some reason such as, they're too mesmerized by your beauty to even notice you're looking back, googly eyes work as well!
3. If the first two don't work- flipping 'em the finger almost always works!. Since my fingers don't stretch out all the way my middle one of course is a little bent but I promise you it does its job well! It's a trooper. :)
4.If none of the above work, its time to get ugly. haha! Kidding!...A little.

I've wrote about the negatives but there truly are positives!

I appreciate peoples personalities.
I'm so much stronger than I think I would be if I didn't have this condition.
I'm very in tune with my body.
I appreciate the small things.
I try my best not to judge people until I get to know them.
I've forced myself to be outgoing.
I've realized I love teaching people about my disorder.
I've learned to defend myself and other people.
I'm very opinionated.
I'm very close to God, although I could def. be closer.

Theres so many other positives but thats all I could think of at this very minute. It may be hard for some people to understand but I do consider my skin disorder a blessing, not a curse. I believe I'm meant to make difference and thats what I intend to do somehow or another. Questions or comments? Let me know! :)

 

Bloom where you are planted..

This ain't an week for me at all. I'm supposed to be hitting that "TOM" this week, I'm already pretty sure this month wasn't  our month and even though I've known that all along, it still sucks. Also, another girl I went to school with is now pregnant... Are you kidding me? She'll be a great mom, no doubt but geeze everyone that comes up pregnant, feels like a slap in the face for me!

On a semi-positive note, Curt and I had a long heartfelt conversation Monday night and we decided that we're going to wait on the fertility & ovulation apps because right now, that's only hurting me. We're just letting nature do its business I reckon... Its hard but that's what's best... Atleast for now.

Our apartment isn't good for a child, its barely good for me, Curt & Max! Lol... But I've been thinking alot and have decided I've GOT to get out of this negative funk! I've never been a negative person & I refuse to start now. I've got amazing people in my life, a roof over my head & food in my belly.. That's more than some people will ever have. I'm so unbelievably blessed so I need to quit all this whining and get it together! That's just what I'm going to do! :)

I hardly ever get on Pinterest seeing as how I don't have a crafty bone in my body, haha- but I did today and found this little picture & loved it! Really fits me right now. :)

Blog here, blog there.

So I'm beginning to fall in love with blogging, its a fantastic way to vent, spread useful information and kill time. I'm trying to decide if Blogger is THE blogging site for me. I was thinking about trying out Wordpress? I'm planning on creating an account on there as well.as doing research today on the site. What exactly made you choose this particular blogging site? I'd love to know any information on any blogging site. Thanks :)

Not a happy day in this neighborhood

I hate our current neighborhood! We went two streets down to the closest grocery store around us, all we needed was milk and bread... Well Curt went in, me and Maximus stayed in the truck... I saw 12-15 kids ranging from 5yrs to 18yrs old go in all at once and soon they started coming out two at a time, of course it looked suspicious to me but I didn't think much of it, it wasn't my business. When Curt came out he told me he saw them stealing. What the heck? I can't stand thieves! We, my family, friends and husband (I'm a stay at home wife) work damn HARD for our money they're steadily making the cost of things get higher because they didn't wanna fork out 75 cents for a Hersey bar. Ticks me off! 

A week ago we heard a gunshot that was obviously close by then sirens almost immediately after. The apartment right below us was broke into a week before that... THEN we recently watched three cops arrest three people in the set of apartments in front of us for car theft. Needless to say we're both ready to get out of here asap.

We now have a plan- Our lease should be up in December so until then we're not going to make trips to Wynne or Newport unless its necessary (holidays, doctor, emergency etc..), we're not going to eat out at all and we're gonna try our best to save money! It's definitely hard to save money when you're just starting out but I don't have a doubt in my mind that we can do it... I  know we can! Hell, we have to.

If worse comes to worse and have no other choice to stay here, we're investing in more locks and guns. To alot of people, that sounds extreme but thats because you haven't been living with us. I, of course, wouldn't ever ever never ever use a gun unless I needed to (a break-in) but I'd rather be safe than sorry. Luckily I'm a pretty badass shooter. ;)

Curt starts night classes for his job in October which makes me even more nervous. He wont be getting home until late. I don't think you should ever feel unsafe in your home! I will not even consider the option of raising a baby here... The town isn't too bad, I'd much rather live in Newport or Wynne but I'd settle for here if need be, just not in this particular area.

  

Mommys best friend!

If you follow me on any social site, you know I L.O.V.E my Weenie Dog (Dachshund), Maximus. I've recently been told more than  once that I am "too attached" to him... I beg to differ. You've got your kids, Ive got my puppy. If you've ever really owned and spent time with a dog you know that they all have their own personalities just like humans. You've got to take him outside, make sure he has food and water, make sure hes eating and drinking enough but not too much (esp for dachshunds) and make sure he has playtime.

Max and I stay home all day until 3:30pm by ourselves, it's safe to say Ive grown pretty attached to him! Hes just like a baby- even sits own his butt leaned on the back of the couch to watch TV & crys and looks out the window when his daddy leaves. If you have spent time with a dog and not cared about it at all, you may need to seek a therapist.. Honest.

He's so much more than a "dog"... He's my best friend, dairy, son and sometimes my dress-up dog ;)..
So to say I'm too attached? You're probably right. I think God that I am because he and Curt keeps me sane in this old apartment. Love them!

You can't have a testimony without a test

Its the little things that hurt...

As you probably know, we're trying to concieve (ttc). Well tonight my grandma called me and told me that someone I used to be really close to and its my age is pregnant! As if its not already HELL for me to get on Facebook, twitter, YouTube, etc. because everyone is having babies. Its to the point that I'd much rater send curt into Walmart by himself cause its hard for me to see someone else with a beautiful little blessing that I may not can have.

We've only been trying a little over a month but every week drags on and I'm 99.8% sure that nothing "took" this month. I've done all kinds of research, downloaded fertility apps, prayed, prayed & prayed. It irritates me to no end how 14-16 year old girls can have sex with some random "Joe Blow" over there and get pregnant so easily! Before you get your undies in a knot, no I'm not saying young moms can't be great moms (my sister in law is a teen mom and is doing a GREAT job!), I'm just saying its so easy for them.

The girl I mentioned earlier is on drugs, we aren't just talking about pot & she's pretty far along. She's steadily in jail, so is the dad & she has no job. Are you kidding me?

Am I jealous? Hell yeah I am! Not jealous of her life by any means but of the baby that she gets to love and hopefully take care of! No matter how much she hurts that sweet baby before its even born, it will still love her unconditionally. If ya ask me, she doesn't deserve it. That's not for me to decide, everything is in Gods hands. I truly wish the girl and baby the best if luck. No baby deserves a strung out mom or harmful substances in its system. I really do pray that the girl gets her head on straight!

All this plus the fact that I feel awful due to weather change makes it almost impossible to keep my head up but I have God, my family, Curt & Max to be happy for so I really have no choice. It may not seem like it reading this post but i really do love my life!

I have a fantastic family, husband, perfect puppy & I'm steadily trying to improve my relationship with God... Even though I may fall back more than I should.

Anyway, please say a prayer for us tonight! Thank you very much.  :)

I'm not sure who wrote this beautiful poem but i love it!

There are women that become mothers without effort, without thought, without patience or loss and though they are good mothers and love their children, I know that I will be better. I will be better not because of genetics, or money or that I have read more books, but because I have struggled and toiled for this child. I have longed and waited. I have cried and prayed. I have endured and planned over and over again. Like most things in life, the people who truly have appreciation are those who have struggled to attain their dreams. I will notice everything about my child. I will take time to watch my child sleep, explore and discover. I will marvel at this miracle every day for the rest of my life. I will be happy when I wake in the middle of the night to the sound of my child, knowing that I can comfort, hold and feed him and that I am not waking to take another temperature, pop another pill, take another shot or cry tears of a broken dream. My dream will be crying for me. I count myself lucky in this sense; that God has given me this insight, this special vision with which I will look upon my child that my friends will not see. Whether I parent a child I actually give birth to or a child that God leads me to, I will not be careless with my love. I will be a better mother for all that I have endured. I am a better wife, a better aunt, a better daughter, neighbor, friend and sister because I have known pain. I know disillusionment as I have been betrayed by my own body, I have been tried by fire and hell many never face, yet given time, I stood tall. I have prevailed. I have succeeded. I have won. So now, when others hurt around me, I do not run from their pain in order to save myself discomfort. I see it, mourn it, and join them in theirs. I listen. And even though I cannot make it better, I can make it less lonely. I have learned the immerse power of another hand holding tight to mine, of other eyes that moisten as they learn to accept the harsh truth and when life is beyond hard. I have learned a compassion that only comes with walking in those shoes. I have learned to appreciate life. Yes I will be a wonderful mother.