Sunday, August 24, 2014

"Quiet"

"Quiet"

By Jason Mraz


I want to, I want to hold you

Every time I go home there's another cellphone tower
Construction getting louder, paving over yesterdays
You and I, we will try to find the side of it that's pretty
While our town becomes a city, we won't let it be erased
Empires rise, empires fall
Will you be my constant through it all?

I will hold your hand and watch the world spin idly around this life we're in
Oh yeah everything goes quiet when it's you I'm with

Every once in a while, you know I get these real bad headaches
Worried about the mistakes that I've made along the way
You and I, we can't hide from the fact that we need each other
How else will I recover when the fever comes again

Temperatures rise, temperatures fall
Will you be my constant through it all?

I will hold your hand and watch the world spin idly around this life we're in
Oh yeah everything goes quiet when it's you I'm with

There are no words, no words when I'm with you
Every time I hear music, they've added more stuff to it
Things are always moving into a futuristic place
Where you and I will try, we'll try to dance into tomorrow
But time will have to borrow, not a minute left to waste

Heartbeats rise, heartbeats fall
Will you be my constant through it all?

I will hold your hand and watch the world spin idly around this life we're in
Oh yeah everything goes quiet when it's you I'm with

Wednesday, August 13, 2014

A Spoonie's Outlet.

Hey World,

I know it has been a while since I have posted. I have been doing some upgrading in my life and has been taking up my time.

So as a quick update, I saw my doctor last week and we have decided to do some changing on my medications. I have to say this combination of medications is a dream. It has not been a week yet and I already see the difference. I don't wake up exhausted and my day to day pain is tolerable to none at all. At least that is how I feel now, we will see what happens as time goes on. Thank you to a lovely girl on Instagram who told me about her regimen, its a life saver.

(Also watching Shark Week right now while typing this up, is anyone else watching? How crazy is this stuff? I love me some Shark Week.)

Anyways, moving on to tonight's thoughts. As a spoonie, I need to find ways to cope with my illnesses and I can tell you I have not been doing that so well since the very beginning. Yet, lately I'm starting to become more and more aware of what I can do and trying to learn my limits instead of rebelling against them. By the way, fun fact about me, I hate being told what to do (thanks momma, love you!).

I would have to say my number one outlet would be music. I would be dead without music, it is just so universal and it is really magically on how one thing can bring a walks of life together. I love it so much. So if you ever see me just post some song lyrics on my blog, just see it as either my song of the day or how I am feeling for the day or at the moment.

I also love to do anything creative. I love to draw, design, color, etc. I also like to play video games, watch movies or tv, and just lay in bed relaxing. I can actually be kind of boring but I am okay with it. My mom says that if I were any more laid back I would be dead or in a coma or something like that. Which is accurate but don't get me wrong though, I do have my spontaneous moments.

My favorite creative thing to do as an outlet is, shocker, do my nails! If you already follow me on Instagram then you know I love to do my nails. I wish I could them more often but I need to hand out my spoons wisely. I have always been into doing my nails but then I discovered this community of nail art, courtesy of my best friend. I have probably been doing nail art for about a year and a half and I love doing it so much. It can be a frustrating process for me though sometimes and for many reasons. Either I don't have enough inspiration, too many options, I am not feeling well, or I am being too much of perfectionist and hate the execution of the design. Ask my best friend I drive her crazy most of the time. I still keep at it and try my best. Practice makes perfect, maybe?

If you would like to see what I do with my nails you can see at my handle @joycelynn_ann, I am currently working on some triplet shark week nails this week. My profile is public and if you don't have Instagram, I will try and figure out how I can post good quality photos on here for you to see at least my favorites.

Also, I have a feeling that working out will be another great outlet for me as well, besides sleeping. I did join the gym and yesterday was my first full day after two half days of just doing the treadmill. I was there for an hour and a half and I am definitely sore today. What do they say? No pain, no gain? Well, bring it on! I know its only been a few days but I love the feeling I am getting when I am done. It is like an accomplishment every day to a much bigger accomplishment I have been trying to do all of my life.

That's all I have for now! Until next time....

xo,

Joycelynn Ann






Wednesday, July 30, 2014

My Worst Obstacle as a Spoonie.

Hello World!

Today I would like to share with all of you my one worst obstacles that constantly holds me back in every single aspect of my life. My weight. Yes I know, I am a girl having an issue with her weight.... blah, blah broken record, but my weight has always been a problem for me ever since I was little.

Ever since I can remember, I have had to shop in plus size part of clothing stores. It didn't use to bother me as much as it does now because I was about 20 pounds overweight then, I weighed about 160 pounds, but I started to get teased in the 7th grade. I then become more self-conscious and insecure about what I looked liked and I compared myself to all the "cool/popular" girls in school. To this day I STILL compare myself to other girls. After all the teasing I started to actually look and stare at girls, strangers, celebrities, etc to see what was socially acceptable and pleasing to the eye, because of that I was called a lesbian until I was about  in the 10th grade.

During that time between 7th and 10th grade I gained 100 pounds, I now weighed any where between 150 and 175 pounds. I used to be super active and play basketball all the time until high school, then that stopped. I became super depressed and started eating constantly. My mom and dad, along the way, did take me to a nutritionist and mom would take me an all women gym. But nothing, that I can remember would work or I just wasn't up for it, probably because I was depressed. I was soon to learn it was not just depression. To cut to the chase I found out through many blood test, ultra sounds, and an iodine test I had Hoshimoto Thyroiditis.

If you would like to learn more about what each diagnosis is the follow links will tell you.)

(Hoshimoto Thyroiditis - http://www.mayoclinic.org/diseases-conditions/hashimotos-disease/basics/definition/con-20030293)

Fast forwarding to me being 19. I gained another 40 pounds, so I weighed about 300 pounds, from an experience I endured and all I did to cope with it was eat. Doing another fast forward to me being 22, I was in a relationship that became very dark and it ended. I then gained about 30 pounds, weighed max of 330 pounds at that point, because I was trying to cope with the decisions I made in that relationship. For the longest time the only way I knew how to cope with anything, was with food.

Stress + Food = Nothing good.

Then last May I was starting to get diagnosed with the rest of my illnesses including Raynauds Phenomenon, Fibromyalgia, Sjogrens, Scleroderma, and the one most recent as of last month of Schamberg's Disease.

(To learn more about what each diagnosis is you can go to the following links.)

(Raynauds Phenomenon - http://www.mayoclinic.org/diseases-conditions/raynauds-disease/basics/definition/con-20022916)

(Fibromyalgia - http://www.mayoclinic.org/diseases-conditions/fibromyalgia/basics/definition/con-20019243)

(Sjogrens Syndrome - http://www.mayoclinic.org/diseases-conditions/sjogrens-syndrome/basics/definition/con-20020275)

(Scleroderma - http://www.mayoclinic.org/diseases-conditions/scleroderma/basics/definition/con-20021378)

(Schamberg's Disease - http://en.wikipedia.org/wiki/Schamberg_disease)

Coming to present day, I can admit that I am a perfectionist to a fault. Therefore through all of the teasing, having no self confidence, and not knowing how to stand up for myself or knowing who I am.... I have done some major mental damage. I am negative nancy when it comes to myself and anything that I do. I will call myself the most horrible things from Shamu to Jabba the Hutt and that all I was good for was for one thing and one thing only. A add on to all this negativity is that I don't feel like a good enough friend, girlfriend, daughter, granddaughter, sister, relative or a good enough person. When "they" say you can be your own worst enemy... they weren't joking. It has caused so many issues to the point were I think I don't deserve anything good in my life, when it comes to work, friends, family, love.... just anything. I don't feel like I do anything to deserve it because I over analyze everything, I have so much anger inside, I am not happy with how I look, and the way I project that is destructive. I self sabotaged practically everything and most of the time, unknowingly. I just want for once in my life to feel pretty and that I could possibly be wanted by any man and feel good enough for them but most importantly, myself. I hate how that sounds so shallow and superficial but it is what it is.

Point is after many tries and giving up of trying to lose weight, I have decided to make an actual effort and I am joining a gym tomorrow. I am super excited that I am going to be working towards seeing a person in the mirror that I actual feel was on the inside of me the entire time. I feel like that will release so much guilt, stress, anger, make my relationships with family and friends so much better, and make the relationship I have with myself a great one.

I need to do this not only for my mental state or confidence or any relationship but for my health. Me being medically obese makes my illnesses much worse than what they need to be. I just hope that this time I will stick with it and it brings me more of a positive mindset, no matter how much I will bitch and complain along the way. I have to do it at this point, I have no choice. If I want the life I dream of, this has to happen.

Wish me luck!

XO,

Joycelynn Ann

(P.S. I am not a very good writer and I am super tired so I do apologize if this blog seemed jumbled.)







Monday, July 28, 2014

What is a Spoonie?

Hello World!

I am Joycelynn, I am 24, and this is my journey through this beautiful mess of a life as a spoonie. What is a spoonie? A spoonie is someone that lives with a chronic illness such as Lupus, Fibromyalgia, Scleroderma, etc. The name for people who live their lives with such illness came from, in my opinion, "The Spoon Theory" written by Christine Miserandino. If you would like to learn about "The Spoon Theory", here is the link to the article.

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

I think that article is the best description of what someone with a chronic illness has to deal on a daily basis. I hope it helps every one, whether you have a chronic illness or you have someone that has one, have a more understanding of what it is to be like in spoonie's shoes. It honestly put so much in perspective for me and people around me so I think it will sincerely help others if you have not discovered it yet.

With that being said, the title of my blog is very self explanatory of what is to come. I personally have Fibromyaglia, Sjogrens, Hoshimoto Thyroiditis, Raynauds Phenomenon, test positive for Scleroderma, and more recently Schamberg's Disease. This is my thoughts and feelings of my every day life as a spoonie, from my darkest moments to the most colorful moments in my life and everything in between. It will be my life and figuring out my new "normal" as my momma likes to say. Come along on my journey, it is going to be an amazing and scary roller coaster ride of my life.

XO,

Joycelynn Ann