Under Our Skin Documentary Trailer

I realized that most people don't know what the controversy is about Lyme Disease and what is raelly going on. I'm working on a post about that because people need to know.

This is the trailer of the Lyme Documentary that explains all the controversy. There are several excerpts from the documentary on youtube. The documentary is called Under Our Skin.

http://www.youtube.com/watch?v=uSsnMQHIJZk&feature=channel

National Invisible Illness Week

The theme this year is "Each One Can Reach One". There are so many people who have invisible illnesses. What does having an invisible illness mean? It means that you get told...

"you look great!"

"I can tell you feel better because you look good!"

"I'm so glad you could be here. I'm glad you are finally getting some relief".

While we appreciate that we look good, it's so hard to get people to understand how much we are suffering because we look "normal". Of course I want to look great and love when people tell me I do! But sometimes I wish my illness was visible because maybe people would be more understanding. There are times when my illness is visible because I'm pale, have gray skin, have a PICC line in my arm, or have to use a wheelchair. But most of the time I look normal.

People don't understand how you can look normal but claim to be so sick. Many times you will lose friends because they think you are faking it. Doctors will send you away because you look "okay".

When you finally get up the strength to leave the house because you feel like you've been hit by a truck, the last thing you want to hear is how good you look. We just want someone to validate how bad we feel and how hard we worked just to leave the house. When you look good all the time, people assume you are better and feeling okay. That's not how it works with invisible illnesses and it's so hard to get people to understand how hard it is.

That is what living with an invisible illness means. What is horrible is that there are so many people who suffer silently because people don't believe that they can be so sick and still look "normal". The theme this year is meant to get people to just help one person who suffers. One of the best things you can do for a chronic illness is leave random notes for the person suffering that will make them laugh or tell them that you are behind them 100%.

This questioner came from the invisible illness website.

30 Things You Might Not Know About My Invisible Illness

1. The illness I live with is: Lyme Disease, Fibromyalgia, Babesiosis, Bartonella, Ehrlichiosis, and other infections

2. I was diagnosed with it in the year: 2008

3. But I had symptoms since: 2006

4. The biggest adjustment I’ve had to make is: being taken out of the fun teenage world and thrown into the adult medical world.

5. Most people assume: that if I'm out of the house I feel good. And if I'm having a good day, that means I'm completely better and can do everything again. That's not how it works though.. One step forward, three steps back. When I'm having a "good" day it still means that I might not feel good. A good day for me could be equivalent to a bad day for a normal person.

6. The hardest part about mornings are: waiting for the strong sleep medicine to wear off and dealing with being sick all through the night.

7. My favorite medical TV show is: House

8. A gadget I couldn’t live without is: Itouch and phone. When you're homebound, that's the only way to talk to people sometimes.

9. The hardest part about nights are: being so exhausted and still not being able to sleep from the pain.

10. Each day I take over 20 pills, 2 or more shots, IVs, tons of liquid medicines.

11. Regarding alternative treatments I: completely believe in them. I am on alternative treatment because I can't handle regular treatments.

12. If I had to choose between an invisible illness or visible I would choose: Anything besides Lyme that is so politically split and has no recognition.

13. Regarding working and career: I do school from home. I haven't been to school since November 2008.

14. People would be surprised to know: I secretly laugh when people tell me how strong I am. So you're telling me I'm strong for fighting for my life? I'm just trying live, not be strong. It's something that has to be done and there's no way around it. I also laugh because I'm not strong. My God is strong and through Him I am strong. Only through Him. I do appreciate being told I'm strong, but it's not me, It's Him.

15. The hardest thing to accept about my new reality has been: the unknown and controversy about my disease. We have to make medical decisions because most doctors won't treat me. It's so hard to have a disease that the government says doesn't exist, therefore we have to stay under the radar with it. But that doesn't mean we don't spread awareness. Also, the fact that I spend the majority of my time hooked up to IVs, taking medicine, spending all day at the doctor in the in the hospital.

16. Something I never thought I could do with my illness that I did was: help give others hope.

17. The commercials about my illness: I haven't seen any.

18. Something I really miss doing since I was diagnosed is: Going to school and being a teenager

19. It was really hard to have to give up: Everything. My independence. So much has been taken away.

20. A new hobby I have taken up since my diagnosis is: Trying to spread awareness about this disease. Talking to people and actually listening.

21. If I could have one day of feeling normal again I would: Do normal teenage things with my friends, not worrying about medicine schedules.

22. My illness has taught me: to cherish the small things like being able to get out of bed and walk.

23. Want to know a secret? Even though I hate this disease I wouldn't change anything. I'm so much more aware of my blessings and helping others.

24. I love it when people: visit me or send me a text or message saying they support me.

25. My favorite motto, scripture, quote that gets me through tough times is: "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalm 73:26

26. When someone is diagnosed I’d like to tell them: Do research for yourself and trust God. If you trust Him and His plan you can get through anything.

27. Something that has surprised me about living with an illness is: How many things we take for granted.

28. The nicest thing someone did for me when I wasn’t feeling well was: actually tell me how sick I look. Thank you for validating how horrible I feel.

29. I’m involved with Invisible Illness Week because: I don't want anyone to have to go through what I've gone through.

30. The fact that you read this list makes me feel: very very blessed. I hope you understand how many people are silently hurting. We really can change the world one person at a time.

"Each One Can Reach One"

Thank you for reading and for your support and prayers.
Check out the invisible illness website to see how you can help.
http://invisibleillnessweek.com/

Surgeon and School

Yesterday the surgeon's office called and said he had an emergency surgery that would take the whole day so my appointment was cancelled. I was disappointed but I'm praying that everything is okay with person that had to have the emergency surgery.

My appointment is rescheduled for this coming Tuesday! I'm actually really looking forward to this appointment. First one ever, I know! I don't know why I'm so excited...I'm just ready to hear him say that everything is good!

It has been two weeks since my surgery. I went for another short walk today! Hopefully I will be able to go to church on Sunday! That is my goal. The pain is still a challenge so I'm still working on that.

Tomorrow afternoon my homebound teacher and another person from the school are coming to evaluate me. I'm not quite sure what that means but we will find out soon!

In My Own Little World

by Matthew West

I heard this song recently I and love the message it gives. We get so comfortable in our own world that we just go through the motions. But we are told to help those around us and live to serve others, not ourselves.

"Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world." James 1:27

"In my own little world it hardly ever rains

I’ve never gone hungry and always felt safe

I got some money in my pockets, shoes on my feet

In my own little world

Population me

I try to stay awake through the Sunday morning church

I throw a twenty in the plate but I never give ’til it hurts

and I turn off the news when I don’t like what I see

it’s easy to do when it’s

population me

What if there’s a bigger picture

what if I’m missing out

What if there’s a greater purpose

I could be living right now

outside my own little world

Stopped at the red light, looked out my window

Outside the car, saw a sign, said “Help this homeless widow”

Just above this sign was the face of a human

I thought to myself, “God, what have I been doing?”

So I rolled down my window and I looked her in the eye

Oh how many times have I just passed her by

I gave her some money then I drove on through

in my own little world there’s

Population two

What if there’s a bigger picture

what if I’m missing out

What if there’s a greater purpose

I could be living right now

outside my own little world

Start breaking my heart for what breaks Yours

give me open hands and open doors

put Your light in my eyes and let me see

that my own little world is not about me

What if there's a bigger picture?
What if I'm missing out?
What if there's a greater purpose?
That I could be living right now
I don't want to miss what matters
I wanna be reaching out
Show me the greater purpose
So I can start living right now

Outside my own little world
My own little world
My own little world"

I love the lines that say this:

"Start breaking my heart for what breaks Yours

give me open hands and open doors

put Your light in my eyes and let me see

that my own little world is not about me"

This is the chorus to a song by Brandon Heath.

"Give me your eyes for just one second
Give me your eyes so I can see
Everything that I keep missing
Give me your love for humanity
Give me your arms for the broken hearted
The ones that are far beyond my reach
Give me you heart for the ones forgotten
Give me your eyes so I can see"

Funny story about side effects and twins

A few weeks ago I had a HIDA scan done on my gallbladder. They inject radio active dye into your IV and watch it go through the liver and gallbladder with a machine. It tells them how the gallbladder is functioning. It was that test that told us that my gallbladder wasn't working well so I had to have it taken out. After the test we left the hospital and went to get something to eat because I had to stop eating at midnight the night before. As we were walking out of the hospital my eyes started doing weird things. My vision was blurry and I was seeing spots. We figured it was from the dye. So we go to the restaurant and order and sit by the door to wait for our food. While we were waiting, I saw 2 girls walk in who looked identical. I mean they could be the same person. They were older than me so I thought that it was my eyes playing tricks on me because twins older than me wouldn't dress alike and have their hair the same way right? I still couldn't see really well so I thought that there was only 1 person but I was seeing double vision. I started to freak out a little so I asked my dad if he was seeing twins that are dressed the same with the same hair. He said yes!!!! We both started laughing because on the day that I have weird side effects and my eyes are blurry, in walks identical twins making me think I'm going CRAZY! but they were really there! Hahaha it was pretty funny!

I spent my weekend building a ziggurat

Jealous? I thought so! My brother has several projects due next week so we decided to do one! Of course he picked the hands on projects from the list so we had to build a ziggurat. They went to Hobby Lobby (what would we do without that place?) and got the supplies and we started building a ziggurat. Thank goodness for the internet pictures to help us, because I don't know if you've noticed but there aren't too many ziggurats here in Oklahoma to model ours after. We cut and put together styrofoam (who knew that's how you spell styrofoam. I didn't...). Then, we created lines to look like blocks. Next, we painted it and who knew that painted styrofoam actually can look like mud! Amazing! Then we added details and finally finished today! I have to say it looks pretty amazing! So, whenever if you ever need to build a ziggurat in your life, you can call us to help! Business is pretty busy though so you might want to call several years in advance. Probably 3.2 years in advance. Thanks for understanding.

Last Friday I walked down the street! That was pretty exciting!! Then, I got to go for a car ride with my mom!

I'm doing well! Last week I started sleeping upstairs again but this weekend I moved back downstairs because I was having some bad nausea problems. I think tonight I'm going to try to sleep upstairs again! I still haven't gone anywhere but I have an appointment with the surgeon on Wednesday! I'm excited to get to go somewhere and see what he says!! I still have tape over 3 of my 4 incisions but it is beginning to come off! It's weird because the stitches are poking through on a couple of the incisions. The stitches are inside but for some reason are coming through! It's very odd!!

This is my dog Tucker! I don't think I've ever put pictures of him on here before so here you go! He loves to think that he owns the world but we all know that it's only a dream of his.

Here is my card board testimony that I talked about in one of my posts!

This is the front...

And this is the back!

Last week there were several beautiful sunsets! This one had such vibrant colors!! I didn't edit this picture at all.

"Light is shed upon the righteous and joy on the upright in heart." Psalm 97:11

I promise I am going to start posting more. My brain has been a little foggy since surgery from all the pain medicine. But I'm slowly recovering and doing well so I will back to normal soon!! Today it has been a week since my surgery so we have one week down!

I've had so many random thoughts lately...

I thought I would take a moment out of my busy post surgery schedule of tv watching and banana pudding eating and write a blog post!

I've been watching Gilmore Girls from season 1 on and it's such a great show! It makes me want coffee every time I watch it. I've watched it so much that I really feel like the characters are my best friends. Then I come back to reality and realize it's just a show... that's what pain medicine does to you! It's quite funny actually.

There's a new song on Klove called Light Up the Sky. I found a couple verses that go along with it. This world is so dark. But Christ game to be the light of the world. We no longer walk in darkness, but in light!

"Light is shed upon the righteous and joy on the upright in heart." Psalm 97:11

My aunt showed me this verse and I love it!!

"The path of the righteous is like the first gleam of dawn" Proverbs 4:18

Light Up The Sky by the Afters

"When I'm feeling all alone

With so far to go

The signs are no where on this road

Guiding me home

When the night is closing in

Is falling on my skin

Oh God will You come close?

(Chorus)

Light light light up the sky

You light up the sky

To show me You are with me

I can't deny

No I can't deny that You are right here with me

You've opened my eyes

So I can see You all around me

Light light light up the sky

You light up the sky to show me

That You are with me

When stars are hiding in the clouds

I don't feel them shining

When I can't see You beyond my doubt

The silver lining

When I've almost reached the end

Like a flood You're rushing in

Your love is rushing in

(Chorus)

So I run straight into Your arms

You're the bright and morning sun

To show Your love there's nothing You won't do

(Chorus)

That You are with me

That You are with me"

Well I'm off to watch more Gilmore Girls, very productive I know!