Tuesday, December 24, 2013

Happy Christmas

As you know I love the Beatles. But they don't have a Christmas song that I'm totally in LOVE with. But John Lennon does. It's called Happy Christmas (The war is over). I know the song is Christmas song protesting the Vietnam War. I don't know if I said this before: just because I LOVE the Beatles, it does not mean I support their political views. This song I love because of a couple different reasons. 

So this is Xmas
And what have you done
Another year over
And a new one just begun
And so this is Xmas
I hope you have fun
The near and the dear one
The old and the young

A very Merry Xmas
And a happy New Year
Let's hope it's a good one
Without any fear

I like these lyrics cause he's(John Lennon) is asking you to review your year. What have you done with your year. In my year, I have found the help I need to battle this disease. I love the part "A very Merry Christmas and a Happy New Year. Let's hope it's a good one without any fear" I'm going into 2014 without any fear in my life. I know God will take care of me. I know he will handle my disease. 

War is over, if you want it
War is over now

Like I said I know this song is about a protest against the Vietnam war, but I'm taking these words out of context. I think John Lennon is talking about any war. A war with yourself, a war against a disease, a physical war. But any war can be over if you want it to be. We just have to give it to God. My war is over. My dad just said something really inspiring. "You've declared victory" and he's so right! My God is bigger than any old IC or any disease! 

Merry Christmas everyone! I'll see you 2014!

Monday, December 16, 2013

Tis the Season

Yesterday was just an amazing day at church. One of the things that happened was "The Decorating of the Christmas Tree" ceremony. What happens during this each family comes up and gets an ornament and puts it on the Christmas tree. To me this symbolizes the coming together of many family to make one big family and that's what we are. We are family. And the most amazing part is we're part of a bigger FAMILY. God's family!

Into our singing of praise to God, Mr. George Darling said something powerful. He said that today's society use forms of the word awe too much. Like the word awesome. The definition of awe is "a strong feeling of fear or respect and also wonder"  There is a song called "I Stand in Awe" The words are very beautiful. 
"You are beautiful beyond description. Too marvelous for words. Too wonderful for comprehension. Like nothing ever seen or heard. Who can grasp Your infinite wisdom? Who can fathom the depths of Your love? You are beautiful beyond description. Majesty enthroned above. And I stand I stand in awe of You. I stand I stand in awe of You. Holy God to whom all praise is due. I stand in awe of You" 

You can't say the words about anyone or anything else. I had a bf back in high school and one of the reasons he really caught my attention was one night we were at his church and he said "You shouldn't say the word "Awesome" unless you are talking about God." These words have stuck with me since then. Now I'm just as guilty as anyone else but this song really made me think. 

Then our Communion was great too. David Waters talked about sacrifices. He said that everyone has had to make a sacrifice. Some may have had someone or something taken away. I immediately thought about myself. ( HOW selfish, right) Then he talked about what he and his wife went through losing babies. Then he talked about how God gave his only son to save us. How many of us could do that? I know I wouldn't be able to. David gave us time to talk to God ourselves and I just prayed to God thanking him for my disease. Because of my disease it has brought me back closer to Him. I think it was all part of God's plan to get me back to Him.

Next, was the sermon. Sid asked a few people what was their most memorable Christmas gift and why. This young boy, named Erik, came up and said his most memorable was a bicycle. Then Mrs. Monroe came up and told her story about how she didn't get the bike she wanted. But later her parents gave her beat up, old, ugly bicycle. The next part Mrs. Monroe said was "We are NOT victims, but we are survivors." God just kept sending little blessings my way yesterday. Do you know how bad I needed to hear this. So many times I have played the "victim card".
OH poor pitiful me. But I need to embrace the fact that I'm still here. I'm a survivor! 

Finally, we need to remember the real reason for Christmas. "Jesus is the reason for the season."

I want to share some lyrics from the song I sang at church last night. It's called "What Child is This?" by Carried Underwood. 
"The King of Kings salvation brings. Let loving hearts enthrone Him. Raise, Raise the Son on high. The virgin sings her lullaby. Joy, Joy for Christ is born The Babe, the Son of Mary"
Back to what David said God sacrificed his ONLY son to bring us salvation! I serve an AWESOME God, who loves me unconditionally! 

Thursday, December 12, 2013

I Believe I Can FLY

This post is about two songs. The first song, I think we all know. It's called "I Believe I Can Fly" I'm just going to post the whole song lyrics because this song is just that powerful!

                                                    "I Believe I Can Fly"

I used to think that I could not go on
And life was nothing but an awful song
But now I know the meaning of true love
I'm leaning on the everlasting arms

If I can see it, then I can do it
If I just believe it, there's nothing to it

I believe I can fly
I believe I can touch the sky
I think about it every night and day
Spread my wings and fly away
I believe I can soar
I see me running through that open door
I believe I can fly
I believe I can fly
I believe I can fly

See I was on the verge of breaking down
Sometimes silence can seem so loud
There are miracles in life I must achieve
But first I know it starts inside of me, oh

If I can see it, then I can be it
If I just believe it, there's nothing to it


Hey, cause I believe in me, oh

If I can see it, then I can do it (I can do it)
If I just believe it, there's nothing to it


Hey, if I just spread my wings
I can fly
I can fly
I can fly, hey
If I just spread my wings
I can fly-eye-eye-eye
Hum, fly-eye-eye

This song is me in so many ways! I used to think I could not go on. Last night I thought that, when I was referred to Pain Management. I felt like my doctor was giving up on me. But again my friend Morgan come through and told me she thought the same thing but that's not it at all. He is just trying to get my pain under control. I obviously need to be on Pain meds to keep my pain under control. I guess I felt like my body was giving up. Giving up on my dreams. Cause I can't function that well on Pain medicine. I have to rely on my parents for everything. And I'm going back to school. But I'm going to give it my all! And I thought life was an awful song. My life has been pure hell the past two years. From all this pain to being called a drug addict. From losing my job to applying for disability. "But now I know the meaning of true love I'm leaning on the everlasting arms" God LOVES me so much and I'm giving all my sickness, problems and stress to him! I'm leaning on him and you know what? HE WANTS ME TO!
I wasn't on the verge of a break down... I DID break down. And when I was alone was the worst thing for me. But now I'm going everyday and hanging out with people. Just keeping myself busy. Y'all now I believe I can FLY! I just have to believe it!

The next song is called Fly by Nicki Minaj and Rhianna. I love Rhianna's plart in this song and that's what I want to share. 

" I came to win, to fight, to conquer, to thrive. I came to win, to survive, to prosper, to rise. To fly. To Fly" 

Like I said I absolutely love this part. Cause this is how I'm starting to live my life with IC. I WILL win, conquer, fight, thrive, survive, prosper, rise and to FLY! I WILL BEAT THIS!!

Here's the links:


I just realized I haven't actually updated on my condition since July. Oh so much has happened. First of all, I have met the greatest doctor in the UNIVERSE! He is a true gift from God. I met him in August on a Thursday and that following Monday he did surgery. In this surgery he did an appendectomy, endometriosis removal, pelvic floor injection, uterus uplift, stretching of the bladder, and packed the bladder medicines different from the last time I had this done. I stayed in the hospital over night. This surgery most definitely cure me but in the end it made me better. After all the UTI's I had after the surgery, I finally got better.

I went a month with no pain. A month without any pain meds and then I started hurting again. And my depression got worse. Now I've just finished a program to help me with my depression and it worked. And I'm waiting on a referral to another pain clinic in Huntsville. I'm doing bladder treatments every week. And tomorrow I start seeing a nutritionist. Can't wait to start eating right!

Tuesday, December 10, 2013

I Hope You Dance

Okay, another music therapy! But this one is just one song. I heard the song, "I Hope You Dance" on my way home from Wendy's. When I hear this song my first instinct is to change it. You may ask "Why, Kayla? It's such an inspiring song." I thought that too. My senior year of high school I volunteered to sing this song at our annual National Honor Society induction ceremony. I was nervous so my start was rough. I was made fun of for singing that day and up to two years later. So, you can understand why I changed the channel every time I heard it. But tonight I had the urge to listen to it. I want to share the lyrics and then talk about them

                                                           "I Hope You Dance"

I hope you never lose your sense of wonder,
You get your fill to eat but always keep that hunger,
May you never take one single breath for granted, 
GOD forbid love ever leave you empty handed,
I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you'll give faith a fighting chance,
And when you get the choice to sit it out or dance.

I hope you dance....I hope you dance.

I hope you never fear those mountains in the distance,
Never settle for the path of least resistance
Livin' might mean takin' chances but they're worth takin',
Lovin' might be a mistake but it's worth makin',

Don't let some hell bent heart leave you bitter,
When you come close to sellin' out reconsider,
Give the heavens above more than just a passing glance,
And when you get the choice to sit it out or dance.

I hope you dance....I hope you dance.
I hope you dance....I hope you dance.
(Time is a wheel in constant motion always rolling us along,
Tell me who wants to look back on their years and wonder where those years have gone.)

I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you'll give faith a fighting chance, 
And when you get the choice to sit it out or dance. 

Dance....I hope you dance. 
I hope you dance....I hope you dance. 
I hope you dance....I hope you dance.. 
(Time is a wheel in constant motion always rolling us along 
Tell me who wants to look back on their years and wonder where those years have gone)

  • "May you never take one single breath for granted" I have really thought about this lately. We're not guaranteed tomorrow. So live each moment like it's your last. 
  • "Whenever one door closes I hope one more opens," Just because one door closes doesn't mean that a better one isn't opened somewhere. 
  • "Promise me that you'll give faith a fighting chance" Have faith! Never lose your faith
  • "I hope you never fear those mountains in the distance" Mountains are struggles. My mountains are my IC, Endometriosis, depression, anxiety, and pain.I shouldn't fear them. Everyone has different mountains they face. But the good news is you never have to face them alone. 
  • "When you come close to sellin' out reconsider" This one is a big one for me. So many times I have wanted to throw the towel in and say I quit. I was going to ask my doctor to do a hysterectomy for my endometriosis. That way it would be one less "mountain" I had to deal with. But my friend, Morgan, talked me out of it. She had gone through the same thing I did with the endo. She begged her doctor to do a hysterectomy and he would say "let's hold off'". Then finally one day he agreed to it and they scheduled her surgery and she backed down. She told me if she had thrown in the towel and quit then she wouldn't be giving a 100%. This stuck with me and I decided not to ask my doctor to do one. 
  • "And when you get the choice to sit it out or dance. I hope you dance....I hope you dance." Take chances. Live life to the fullest and DANCE! 
That's all I have for tonight. Take care everyone! And thank you for your support!

Tuesday, December 3, 2013

Let It Be

You might read the title of this post and think "Oh no, the Beatles freak is writing a post about a Beatles song" Well you my friend are wrong! Ha! I will tie it in though. 

Today we talked about letting it be. When something bad happens, sometimes there is NOTHING you can do about it so you just have to let it be. "And when the night is cloudy there is still a light that shines on me Shine until tomorrow, let it be" That light to me is God! 

When something bad happens to you, God is not surprised. That event was all apart of his blue print for your life. So if God is not surprised, neither should you. You should just let it be. 

I know this post is short but that's all I have today! Please remember me in your prayers. I'm having a bad flare but thankfully I got to see my doctor. Thank God, Alex Childs genuinely cares about his patients. I hope you all have a great and blessed night or day depending on when you read this! And as always Thank you for your support! Praying for a cure! 

Of course I have a link to Let It Be

Monday, December 2, 2013


Two years ago, my life changed. It drastically changed for the worse. I was forced to give up my young adulthood years. The years that are supposed to be some of the best years of your life. The years that you meet new friends and possibly the love of your life. The years that are supposed to set you up for success or failure. The years you decided what you want to do for the rest of your life. I should be out right now, having the time of my life instead of posting this. I should be angry. I should be mad because my life was stolen from me. But today in my group, I learned about acceptance. When you have some kind of problem thrown in your face you can either choose to throw a tantrum, be mad about and allow it to ruin your life or you can accept it. Today, I have chosen to accept my disease. I have chosen to live with this disease and try my best along with the help of my doctors to defeat it. Today was a rough day. I was in so much pain and just wanted to give up but I made it to group and I finished out the day and I was able to get an appointment with my specialist( Dr. Childs) and he was able to give me some relief. I got four steroid injections and got an instillment. And he also gave me some medicine to help with pain. I also have been referred to a urologist to help with my care. By no means is he giving up on me. He is just open to suggestions. It's hard to believe I've been struggling with this for two years now. When I was first diagnosed, I was so mad. Why ME? Why this group of diseases? Why NOW? I was so frustrated. But now I know God chose me for a reason. I just don't know what that reason is yet. Maybe it was to bring me closer to Him. Whatever the reason is, He knows I'm strong enough for it. I've accepted that I have these diseases. I have accepted I have a problem with depression and anxiety. I have accepted that I will never be normal again (not that I was normal to begin with). I have accepted that I will probably never be able to drink another Dr. Pepper( I had to give those up again). I have accepted that I will have bad days but I also know that if I work hard for it, the good days will OUTWEIGH the bad days. I can't be down about the past and I can't worry about the future. I need to live one moment at a time.

That's all I have for tonight. I hope everyone has a good night or day whenever you read this. Thank you for your continued support!

Friday, November 29, 2013

Music Therapy III

So I'm in a bad flare right now and listening to my IC Therapy playlist but I have found some new songs to help me get through flares or even my depression and anxiety. This Post will probably be written over several days so hang with me me if things don't add up. Like I said I'm in a bad flare. 

The first song is called "Firework" by Katy Perry.  This song helps you feel a sense of worth. "You don't have to feel like a waste of space You're original, cannot be replaced If you only knew what the future holds After a hurricane comes a rainbow Maybe you're reason why all the doors are closed So you could open one that leads you to the perfect road Like a lightning bolt, your heart will glow And when it's time, you'll know You just gotta ignite the light and let it shine Just own the night like the 4th of July Cause baby you're a firework Come on, show 'em
what you're worth Make 'em go, oh, oh, oh As you shoot across the sky" Good things tend to follow the bad. I just gotta show people that I believe that I am worth something. I am worthy to live another day. I can NOT be replaced. There is only ONE Kayla Nicole Vaughn with my DNA. I will make it through this rut. Listen to Firework .

The next song is called "Part of Me" by Katy Perry (I'm on a Katy Perry "kick" right now).
I just absolutely love this song. The video suggests its about a girl who stands up to her bf and decides he's not going to rule her life anymore. Well IC, depression, anxiety, and endometriosis are NOT going to rule my life anymore. "You took my light You drained me down But that was then And this is now Now look at me! This is the part of me That you're never gonna ever take away from me, no This is the part of me That you're never gonna ever take away from me, no Throw your sticks and stones, Throw your bombs and blows, But you're not gonna break my soul." IC has drained me emotionally and physically and it took my light, but you know what? I got that light back "I just want to throw my phone away. Find out who is really there for me" There have been so many times I wanted to do this. My disease has shown me that I had some fake friends but I also found out who my true friends are. True friends are rare to find these days. 

The next song is "Perfect" by Pink. This is a wonderful song for anyone going through depression. Just want to share some lyrics that really speak to me.
 "Made a wrong turn Once or twice Dug my way out Blood and fire Bad decisions That's alright Welcome to my silly life Mistreated ,Misplaced, Misunderstood, Miss no way it's all good It didn't slow me down. Mistaken Always second guessing Underestimated Look I'm still around" 
We all have made wrong choices in life. We have all made mistakes. We've all been done wrong but we have to keep out heads up. 
"You're so mean When you talk About yourself, you were wrong Change the voices in your head
Make them like you instead" 
We have judge ourselves more than anyone else. I have caught myself calling myself an idiot. I don't deserve that. I not only need to treat others with respect but I need to treat myself with respect too. 
"Pretty, pretty please Don't you ever, ever feel Like you're less than Less than perfect Pretty, pretty please If you ever, ever feel Like you're nothing
Less than perfect"
 I LOVE that chorus. I am perfect in my own little way. God made me this way and God doesn't make mistakes so therefore I am perfect. 

Speaking of  God not making mistakes, the next song is "Born This Way" by Lady Gaga. I don't agree with a lot of this song talks about but some of the lyrics I absolutely love.
 "There's nothin' wrong with lovin' who you are She said, 'cause He made you perfect, babe So hold your head up, girl and you'll go far Listen to me when I say I'm beautiful in my way 'Cause God makes no mistakes I'm on the right track, baby I was born this way Don't hide yourself in regret Just love yourself and you're set I'm on the right track, baby I was born this way, born this way" I was born to have this sickness. God knew I could handle it. There is a saying that goes something like " God will never give you more than you can handle"
 God knows I can handle this. Also I have to learn to love myself because I was born this way and I can't change it. 

The next song is called " I Need You to Love Me" by Barlowgirl. I just want to share all the lyrics to this song and that's all.
 "Why, why are you still here with me? Didn't You see what I've done?
In my shame I want to run and hide myself. But it's here I see the truth. I don't deserve You. But I need You to love me, and I, I won't keep my heart from you this time. And I'll stop this pretending that I can somehow deserve what I already have. I need You to love me. I, I have wasted so much time pushing You away from me. I just never saw how You could cherish me, Cause You're a God who has all things and still You want me.  Your love makes me forget what I have been. You're love makes me see who I really am. Your love makes me forget what I have been. And I need You to love me, and I, I won't keep my heart from You this time. And I'll stop this pretending that I can somehow deserve what I already have. I need you to love me."

That's all for this session of Music Therapy. Hope everyone has a good night! 

Sunday, November 24, 2013

Music Therapy Part II

It's been a while since I have posted anything. So I'm going to try to get back into the loop again on doing this. Today I want to do another music therapy. I did a music therapy class and came out with some very good songs. Then, I also have some that I found on my own.

The first song is called "I Gotta Believe" I've been having a difficult time with depression and after hearing this song, I now know I can't do anything without God. Just wanted to share some lyrics from the song.
"Seems that when I face one thing, another one comes Clouding up my vision, but I can feel the sun. I believe that I can do this; I know that I can win Just as long as I have His love within. I believe I can make it, I can make it though the night. I believe that I can walk on, with my head held high. I believe I am special in every way. But in order to have my victory-I gotta believe. I have to see myself at the finish line."
Powerful words and the music is just as powerful. I can make it through my depression and I can make it through my diseases. I just have to believe that I will see myself at that finish line when there comes a cure.
Here's the link to that song:  I Gotta Believe- Yolanda Adams

The next song is called "Words" by Heirline. This song is the opposite of  "Sticks and stones can break my bones but words will never hurt me" I think that is the most false statement ever made. I have been hurt many times by words. This is the chorus to the song. "Words Oh their power is real. They can hurt or heal. Can't be touched but you can feel. Words. There is strength in every one. And when all is said and done, Wars are lost and battles won with words"
Words are the most powerful weapon a person can have. The bible tells us to tame our tongues. I had found an acronym that goes along great with this song. Before you say something to someone you need to use this acronym!
T- Is it True?
H- Is it Helpful?
I- Is it Inspiring?
N- Is it Necessary?
K- Is it Kind?

Like I said I've been hurt many times by words. People tell me all the time that the only reason I am sick is because I used to eat Mexican Food so much. It's true that it didn't help my condition. But it did NOT cause my IC. I had no way of knowing that's what I had until I had my surgery. Plus this disease is hereditary. It runs on my dad's side of the family. Another time words hurt me was when I was in the ER one night. The doctor said that I came to the ER for the same thing way too much. I know this doctor and when he says something like to frequent flyers he is implying they are drug addicts just looking for a fix. So when he came back in my room to tell me I had a UTI. I told him I did not appreciate him treating me like a drug addict. I said that if I knew anything else to do besides go to the ER for my pain then I wouldn't be there. I told him yes I come for the same thing every time but it's because I have a chronic condition and I needed help to get rid of pain. He apologized to me and gave me some pain medicine to help with pain.
So words can hurt worse than sticks and stones. I couldn't find a good version of the song. But I'll go ahead and post this version: Words by Heirline

The next song is "Stronger" by Kelly Clarkson. "What doesn't kill you makes you stronger" My IC hasn't killed me. And I'm not going to let it kill me. I will be alive when they come up with a cure. "You think you got the best of me, Think you had the last laugh. Bet you think that everything good is gone. Think you left me broken down"  IC WILL NOT WIN THIS! I'm gonna stand a little taller because of this. This is a motivating song. Here's a link to the song: Stronger- Kelly Clarkson

The next song is called "Angel" by Sarah McLachlan. This song is so beautiful. I'm sure everyone has heard it. When I first read the lyrics, I felt like the song was about suicide and couldn't believe we were listening to it in our therapy. But then I read it in a positive way. I just want to share some lyrics from this song. Lyrics that really describe what I'm going through right now.
"Spend all you time waiting for that second chance, For a break that would make it okay. There's always some reason to not feel good enough and it's hard at the end of the day. I need some distractions."  Since I was put on Birth Control this has been me. I have feel like I'm a failure at life, that I will never find the man of my dreams, that I will never hold my newborn baby in my arms. And for me, it is so hard at the end of the day. I usually end up crying about something. But I'm "in the arms of the angel" so there is no need for me to feel down about my life. I am in God's arms and I'll never be alone. You can listen to this beautiful song by clicking on this link: Angel - Sarah Mclachlan

Next song is "Roar" by Katy Perry. I absolutely LOVE this song!
This is my theme song right now.
"I guess that I forgot I had a choice I let you push me past the breaking point I stood for nothing, so I fell for everything You held me down, but I got up Already brushing off the dust You hear my voice, your hear that sound Like thunder, gonna shake the ground You held me down, but I got up Get ready 'cause I had enough I see it all, I see it now"

I'm not gonna let IC beat me because "I got the eye of the tiger, the fire
Dancing through the fire
'Cause I am a champion, and you're gonna hear me roar
Louder, louder than a lion
'Cause I am a champion, and you're gonna hear me roar!"

Another song is called "Warrior" by Demi Lovato. I want to share some lyrics and explain how they fit what I'm going through. This song is obviously about a break up, but like I've said before, I am trying my best to break up with IC!

 "I need to take back the light inside you stole" I lost a lot of light inside of me when I got sick. I lost a ton of friends.
"You're a criminal And you steal like you're a pro" IC stole my life away from me and I'm trying to get my life back. I should be out having the time of my life. Not worrying if I'm going to have a flare today or how bad my nausea will be.
"All the pain and the truth I wear like a battle wound So ashamed, so confused I was broken and bruised" I have scars physically and emotionally from fighting this disease for two years now. But...
"Now I'm a warrior Now I've got thicker skin I'm a warrior I'm stronger than I've ever been And my armor, is made of steel, you can't get in I'm a warrior And you can never hurt me again"
I'm not going to let this IC defeat me. And I'm not going to let my depression defeat me either. The only person that can make me happy is myself. And I'm going to make myself happy!
You can listen to this song by clicking this link: Warrior by Demi Lovato

The next song is called "Here Comes the Sun" by the Beatles. It's one of my favorite Beatles songs. So beautiful. Here are some of the lyrics.
"Here comes the sun, here comes the sun And I say it's all right"
I am going to get the light back in my life. I will defeat it one day. I just have to keep telling myself that.
"Little darling, it's been a long cold lonely winter Little darling, it feels like years since it's been here Here comes the sun, here comes the sun And I say it's all right" IC is like a winter for someone who doesn't like the cold. Because it can make you a cold, bitter person if you're not careful. I know I wouldn't get out of bed. I slept so much because when I sleep I'm not in pain. But the sun came out for a few weeks and I was able to enjoy it.
"Little darling, the smiles returning to the faces Little darling, it seems like years since it's been here
Here comes the sun, here comes the sun And I say it's all right"
When I was in remission those few weeks, I had a genuine smile on my face. I didn't fake it at all. I was so happy to be pain free for once. I am hopeful that people will see that smile again. And I'm praying that it's soon. There are two versions of this song I would like to share with you. The first one is of course The Beatles version and the other one is The Glee version

The last song I have tonight is "Let it Be" by the Beatles. I'm not Catholic so I don't do the whole mother Mary thing like the Beatles. But I do believe God. So when I listen to this song I think of God. "When I find myself in times of trouble Mother Mary comes to me Speaking words of wisdom, let it be And in my hour of darkness She is standing right in front of me Speaking words of wisdom, let it be Let it be, let it be Let it be, let it be Whisper words of wisdom, let it be"
When I'm in trouble I need to go to God in prayer and ask for his help and he will always be there and when I'm in the dark He will be my light. Jesus said it best "While I am in the world, I am the light of the world." And I just need to learn to let it be.

Here's link to Let It Be

Well that's all for tonight. I'll have some more at a later date. Good night everyone!

Tuesday, July 16, 2013


Sorry I haven't updated in a while. I've had a rough time staying awake. My Cymbalta was raised to 120 mg a day. Most people take 60 mg. So all I do now is sleep during the day and then take Benadryl at night to help me sleep plus antihistamine is good for IC. I finally got some kind of pain relief. My pain doctor put me on Fentanyl patch 25 mcg/hr. I could tell it worked but not a whole lot. So when i went for a check up he raised it to 50 mcg/hr and it's helping a lot better but I'm still so sleepy. Yesterday I went to see my family physician to get my blood pressure checked out plus I've been having some anxiety problems and he put me on a beta blocker that should help all of that. So hopefully soon I will get some energy. I go to Birmingham next week. Hopefully if I feel like it I will update again next week. I just have no energy to get going right now. I'm supposed to go to my aunt's house tomorrow. We'll see how that goes. Hopefully I don't end up in her bed again like I did on the 4th. Hope everyone has a good day!

Tuesday, June 18, 2013


Today has been one of the worst days of my life. I woke up this morning in terrible pain. When you go to the doctor and they ask you what's your pain on a scale of 1-10. Today I could have easily said 15. Pain had been so bad. I decided to wait it out to see if it got better. Around two I called my doctor in bham to ask what I can do and she suggested I take a warm bath and see if that works. If not go to the ER. The ER is always my last resort. Only problem is I had to rely on my last resort 3 times in the past in the past three weeks. I know what you're thinking. I thought you had a pain doctor to help with this pain. You are correct. I'm taking morphine daily and it does not help with my pain at all. So after the bath I didn't feel any better soI ended up at the ER. I was given two shots and sent home. I wish I knew a doctor in my area that would promote IC awareness. I would put all my money into the program to make sure women in my area with IC don't have to go through what I am going through. There needs to be doctors that at least have an understanding of what IC is and not this generic idea that it's just a bad UTI that causes you to have frequent urination. Cause that's not what it is. It is PAIN. Pain compared to the pain of a cancer patient. Doctors are gonna make sure cancer patients are comfortable. Why not IC patients!?! This is ridiculous to be judged for going to the ER so many times in a month. I'm not seeking a high. I'm seeking HELP and RELIEF. Well my medicine has kicked in so I'm off to bed. Good night all!

Saturday, June 15, 2013

Happy Father's Day!

It's Father's Day weekend and to celebrate I'm dedicating this blog to my dad, Johnny Vaughn. My dad has always been there for me when I needed him. He has always worked hard to provide for me. Some might say I'm spoiled but I'm just Daddy's Little Girl.

Since I've been sick, my dad has been there even more for me. He has gone to doctor visits when he could. He has supported me by trying to do my diet with me. He didn't stick to it necessarily but at least he tried. Here lately he has been there for me more than I think I realize. I have recently decided to stop working and apply for disability and he has supported my decision to the fullest.

I don't know where I would be without my daddy. I don't know what I would do without him. He works so hard to be able to provide for his family. I thank God for giving me to the best daddy a girl could ask for.  Happy Father's Day Daddy! I love you!

Friday, April 26, 2013

I just need to rant!

One of the reasons I made this blog was to get some frustration out. Today I need to do this! I was so close to getting better. I had THREE days of little to no pain! I was so happy. Last week was a good IC week. This week is not the case! I am hurting so bad right now. I can barely walk because the pain has gone to my hips. I don't understand why I am hurting. I got in to the pain clinic and he prescribed me some medicine but it only works for maybe two hours. I am so tired of this! I just want my life back! Sometimes I wonder if I just stab my bladder a few good times if it will start acting right, but then I think no silly. This isn't just my bladder. It's my whole body. My body is fighting against me. Why can't me and my body just get along? I just want so peace in my body! For once I want there to be no pain. Please pray for me as I struggle with this. This not only takes a toll on me physically but also mentally and emotionally. Thank you!

Monday, April 15, 2013

Good News

I've always been told that good things come to those who wait. I have done an awful lot of waiting the past year and a half and it always seems like I just get bad news. Well as most of you know I have been patiently waiting to get in with the pain clinic. I can finally say I got in. They called me this morning and I'm not sure how this is going to affect my life yet. I hate taking medicine especially narcotics but if this place is going to give me some relief then I'm all for it. I'm tired of not being able to move much and being able to go places. I know the pain clinic will still cut down on my going places but I'm hoping it will allow me to be a little more active in life. I will just lay in bed and sleep because I know as long as I'm asleep I won't hurt. But the instance I wake up, BAM! Pain sets in again. Please pray for me as I start this new journey! Thank you!

Friday, April 12, 2013

Moving Forward

So the past few weeks have been tough. The nausea has been out of control. I've had more trips to the ER than a frequent flyer would. I went 5 times in 10 days to be exact and then I've had a couple more since then. Anyways, I guess the purpose of this post is to get everyone up to date on my medical care. What's being done for me. I am still doing the therapy once a week. And YES, I still love my doctor! She has helped me a ton in trying to figure out what to do next, since my urologist doesn't seem to care. We do know that something else is going on, but we do not know what that something else exactly is.

So I've gotten a few new doctors since the last time I've posted. I've only seen one and I love her! She is my new GI doctor. I really liked her approach on helping me. She isn't worried about the pain right now. She wants to get my nausea under control first and then we will worry about pain. I am taking Reglan 4 times daily and Prilosec twice daily. The Reglan seems to be helping. One thing I really love about this new doctor is she has IC just like me. She understands my pain.

I have a new doctor to go to about my IC. My initial appointment isn't until September 20, but they told me they usually have enough cancellations that will move me up a couple months. I think I can wait that long. I've waited this long. I have heard very good things about this new doctor. He is a chronic pelvic pain specialist and that is exactly what I need.

I'm hoping I will get a call next week about getting into the pain clinic at UAB Highlands. People ask me why I didn't try to get a pain specialist closer to home. Well to answer that question: when I got my paperwork from this clinic and it asked me what medical conditions I have and it listed Interstitial Cystitis, I knew I was in the right spot.

Yesterday, I went for my therapy and we talked a lot about some possibilities. There is a possibility I could have Fibromyalgia and Gastroparesis. Both are connected to IC, so I knew there was a chance to begin with. We tried something new in my therapy and it really seemed to help. She did an instillation of lidocaine. Which means she filled my bladder with a lidocaine solution. It helped tons! I was pain free for 30 minutes!

Today I started the Lupron Depot. This will put my body in temporary menopause and is supposed to help my endometriosis. FMLA(Family Medical Leave Act) paperwork is finally in and filled out. I do have limitations now. No more night shift and my shifts have been
cut to 6 hour shifts. Speaking of work I have to work a few hours this evening so I'm off to take me a nap. I haven't been sleeping well at night. Hope everyone has a great evening!

Tuesday, April 9, 2013

Food Problems

Today I'm having a hard time with foods. I want so bad to eat the things I love. Such as chocolate, Mexican food, and stuff with tomatoes in it. I want a Dr. Pepper so stinking bad! And it's so hard to watch others eat the things I want. Like tonight my mom ate chicken fajita nachos. It has grilled onions in it and as she was eating them I wanted some so bad. My heart breaks every time I see something I can't have.

I have an analogy. There is this puppy at your feet and you have a burger and french fries in your hand. Well this puppy has the cutest look on his face and so you reach down and pet him. Now that puppy has it in his mind that he is going to get some table scraps. But then you don't give the puppy anything. That is pure torture to that puppy.

This is what I feel when there is food around me that I want and can't have. It is pure torture to me. I want so badly to eat the things I used to eat. I will defeat this one day and will be able to eat things not all the time but rationally. I need strength to get through it. I can still taste a Dr. Pepper when I see one. But one day there will be a cure and I WILL be normal again!

Tuesday, April 2, 2013

The Good and Bad

Well I was going to wait til Friday to post anything, but i just feel like posting. The last time I posted I think I was doing pretty good for the most part just in terrible pain. Well I've had a few ER visits and doctors appointments since then. I guess I'll start with Tuesday a week ago. I felt much better well a little better and even got to go sing which is my favorite thing to do. I left there and went to hang out with a friend. When I got home. I started hurting again. So I took a pain pill. Well after two hours I still was hurting really bad so I decided to go to the ER to get me a pain shot. When I got there they gave me a shot of dilaudid and it didn't help me one bit. I started crying my pain was so bad. An hour after the shot they decided to give me an iv and give me some more dilaudid through the IV and decided to do a CT scan for kidney stones. This helped for about an hour and i was hurting again but this time in my epigastric area, which feels like your chest but it's just below. Well the doctor came back in and told me I don't have any kidney stones but he thinks I have some gastric stuff going on, like acid reflux and constipation. The acid reflux would be what's causing me to have the epigastric pain. He told me to make an appointment with Dr. Raju which is my gastroentologist and gave me a more effective pain medicine. Since then I have been very bad nauseated. I know I've mentioned nausea before but it's been worse than normal. Thursday I went to Bham after I worked a ten hour over night shift and stayed nauseated the whole ride there. While waiting on the doctor I got sick and when she came in I got sick again. But after the therapy I felt a little better. She said she could tell I was worse. SHe gave me a prescription for people who have IBS who have problems with constipation. On the way home, I stayed nauseated the whole ride home. Friday afternoon, my doctor in bham called to check on me and i told her I wasn't any better and she told me to go to the ER to get some relief. So I did and the doctor I saw gave me some medicine called compazine that really helps my nausea. Saturday I was bad sick again but I think it was just from pain. A very painful day. Sunday I went to church with my dad. I want to thank everyone who came up to me, hugged me, asked about me, and told me they were praying for me. Sunday evening I worked 12 hours, 6:30 PM to 7 AM. When I got off work I stayed up so i could go to my doctor's appointment with my gynecologist. I not really sure why but that appointment was so emotional. Maybe it was because I was so tired. The nurse asked me if I was related to anyone who had been diagnosed with breast cancer before the age of 50. I said yes. My grandmother was diagnosed when she was 45. They now offer genetic testing to see if I have the chromosome that carries genetic breast cancer. I agreed to try that. I also talked to my doctor about doing another surgery for my endometriosis. He told me he didn't think it would do any good but there is a medicine I could try called Lupron Depot. The only thing about it is the side effects. Which is menopause. I would be going through menopause temporarily. I told him I wanted to try it. After the appointment I got very bad sick and very emotional. I cried so much. At 2 I had an appointment with Dr. Boorgu, the kidney doctor. Finally an appointment with some very good news. Dr. Boorgu told me that my kidney function is great! But I have a concern about polycystic kidney disease running in my family. He agreed to look into so I was set up with a kidney ultrasound for this Friday. When I got home from my appointment I was so tired. I had been up for 24 hours and I slept until about 4 pm this afternoon, only to get up to pee, and take pain medicine. This evening I felt good enough to go sing and had a wonderful time. The picture is me after I got home tonight.  Here's a link to the song I sang tonight: http://www.youtube.com/watch?v=CF_uQ8Nh4X0 I hope everyone has a good night! I'm off to bed!

Sunday, March 24, 2013

An update

It's been awhile since I've posted anything. It has been a hectic time in the life of Kayla Vaughn. I would like to ask for prayers for my brother. He is going through a difficult time and could really use some prayers. I know God can help him through this!

So update on me. As you know I went to my first appointment with my new doctor on March 14. I love my new doctor. Well she is the CRNP but she is so awesome. She is a Beatles fan so we can relate. Another thing we have in common we both wanted to be a forensic pathologist. She is also a Christian. Well after my first appointment I was told to come back in two weeks. Well Friday, I went to Huntsville with my daddy and his friend and I had a really good time. On the way home I started feeling weak and I fell asleep. When I got home I ate a burger and started feeling sicker. A few minutes later I got sick and there was red in the vomit and I ended up at the ER Friday night. Everything checked out good and I was sent home. Well the rest of the weekend I felt ok not good but ok. Sunday I worked and had a pretty good day. I was too busy at work to notice. Monday I woke up very nauseated. and was taking zofran every 6 hours and it wasn't helping. I got sick again later that night and still just felt awful so I talked to my mom and asked her if she would take me to the ER so they could give me Phenergan and also check my kidney function while I'm there. Well everything checked out again. The next morning when I woke up hurting very bad and nauseated again. I called my doctor in Birmingham and asked if I could get in any sooner than two weeks that I was miserable. They told me to be there at 8 am Thursday morning.

Thursday morning, I got there and the CRNP came in and she said that we would go ahead and do the therapy since I was in so much pain. During my appointment she talked to me about what was going on in my life and she told me no wonder I was hurting so bad. After she done I was relaxed and had no pain whatsoever. I stayed this way for ten minutes this time! She did tell me that she could tell that I am getting better but there are some trouble places that we would have to work on.

I talked to her about pain management cause the medicine she gave me wasn't working and it was making me itch. Just making me more miserable. She told me to definitely come of that medicine. I told her that I was given some medicine in the ER and that I was taking it for pain but it wasn't working. This is the plan we came up with. I will keep taking the pain medicine and take it more often until they can get me in with a pain clinic. That will hopefully be this Thursday. I will go for see her every week until I feel like I'm getting better and then I will start going every two weeks or something like that. She told me to keep my appointment with my kidney doctor cause she feels like something else is definitely going on. I go see that doctor on April 1st.

Right now I'm sitting here talking with my mom and my uncle Pete(our walking miracle). I go to work at 6:30 and work all night. I have a busy week ahead of me. I work tonight and tomorrow night and then I got back to work Wednesday night and I get off at 5 and will be on my way to Birmingham for my appointment with the CRNP and hopefully the pain clinic. Then I'll go back to work Saturday night. WOO 4 days this week. I haven't worked more than one day in a while. This week is going to be rough and I'm not gonna lie I am not looking forward to it and I'm a little nervous about it. Working a lot and little sit and schedule change makes my IC so much worse. But hopefully I will be alright. Please say a prayer for me this week! Things are going to get better! Well it is time for me to get ready for work. I hope everyone has a good week!

Wednesday, March 13, 2013

Get it all out

This blog was written over a couple of days. So the timeline is a little off :)

Today(Wednesday) I am experiencing so many emotions but the main one is anger. It has been a terrible past 5 days. So much has happened. I'm so emotional right now it's crazy. Let's start Friday.

Friday morning I got really bad sick again with nausea. I had to take a Phenergan and it knocked me out so i slept most of the day. When I woke up that afternoon my mom told me my family physician's had called and left a message that I have been referred to Dr. Boorgu and my appointment is April 1st. Dr.Boorgu is a kidney doctor. I called Monday and asked the nurse why I was being referred to Dr. Boorgu and she told me that I had an abnormal 24 hour urine test. This didn't tell me anything so I asked her what was abnormal about it and she told me my kidney function is not at the level it is supposed to be at. I think my heart stopped. I was expecting a normal test and nothing like this. But I'm being optimistic. It can't be that bad since my appointment is still two weeks away. That means I don't have to see a doctor stat.

Also on Friday I got a phone call from my local urologist. Wednesday I had dropped off some paperwork for my doctor fill out so I can take Family Medical Leave. On this leave I can still work but if i need to be off because of my serious condition then I can't be punished. It protects my job. When My urologist's office called Friday they had more bad news for me. My doctor will not sign the papers since he has referred me to UAB. So I called my urologist at UAB to see if they would fill out the paperwork.  They agreed to it and I faxed it to them on Monday. Well Tuesday I got a phone call  from UAB and the nurse told me that my urologist would not authorize family medical leave because all I have is IC. Woah woah woah. All I have is IC? Let me get this straight. I only work one day a week and most of the time I have to call in on that day because I'm in so much pain. I cry every day from pain. I can't eat because I'm so nauseated. I am in the ER every two weeks because I can't take the pain anymore. I am in more pain than 80% of all patients I register at I work. I have a disability and you won't authorize family medical leave because all I have is just IC. IC a chronic inflammation of the bladder disease that can cause pain that can be as bad as stage 4 cancer. And all I have is just IC. Can you say I'm mad? I am IRATE! But I'm not giving up. I have two more doctors to ask to fill out the papers and hopefully one of them will. If not then I don't know what I'm going to do.

Today (Thursday) I headed to Birmingham to meet my pelvic floor therapist. I have so much optimism right now. I really think.this therapy will help. The doctor explained to me how this works and why it is causing pain. She is very good at what she does. And when she was finished I had zero pain. Now of course my pain is back but it's a different pain. Also since the therapist is an actual doctor they will fill out my family medical leave. I was prescribed some new medicine that is placed near where the pain is so it has a better chance of working. I'm so excited about this and so glad the latter part of this post has good news. God has blessed me so much! Thank you so much for all the prayers! I truly think I'm headed in the right direction now!

Saturday, March 9, 2013

Ready For Some Relief!

The past two days have been miserable I have done nothing but slept and be nauseated. Today has been worse cause pain is really bad. I'm hoping that a little blogging will help me get my frustration out. I'm trying my best to stay out of the heavy duty stuff and trying to just be ok with arthritis strength Tylenol and Tramadol. I've been watching tv to help keep my mind off of the pain, but there comes a point where that just doesn't work anymore.

The past few days I keep getting super nervous about Thursday, and the closer I get to Thursday the more nervous I get. For those of you who don't know what Thursday is for me: I go see my pelvic floor therapist for the first time. I've haven't done a ton of research on this therapy but I have done a little and asked others what they thought about it. I'm pretty sure it's 12 weeks long. I also know that in order for me to get better I will have to endure a ton of pain. That is why I'm so nervous. I don't understand why someone has to hurt worse in order to get better. Why can't i just be given medicine to help this? I've been through so much pain the past year and I'm so over it. It needs to go away and stay away.

Well I ended up having to take some medicine so I'm off to bed. Hope everyone has a good night! Praying for a cure!

Friday, March 1, 2013

Self Injury Awareness Day

I should be asleep since I have to work twelve hours tonight, but for some reason I can't sleep even after the HORRIBLE night I had. I guess I celebrated my good day a little too much, but I sure did have fun. I went to bed with a terrible migraine and woke up several times during the night with it. Then I had terrible nausea this morning. I took a fourth of a Phenergan around 7:30 and that usually makes me pass out but I'm still awake. So here I am writing another post.

I have experienced so many emotions since I started to get sick. Sometimes I have so much anger that I just sit and cry. Sometimes I am so sad that I sit and cry. Other times I am so happy that I cry. Regardless, I cry frequently. Here lately I've had a lot of anger. I'm so angry with my urologist at UAB. I feel like I don't have a doctor. I've waited a month so far and with 13 more days to go to see my new doctor that my UAB urologist referred me to. I don't have a problem with the waiting. I have a problem with waiting and my doctor not doing anything to treat my IC while I wait. If you don't treat something it just gets worse, and I can tell that I have gotten worse. Blood is being found in my urine now and that's not good. That means my bladder is so inflamed it's bleeding. And my urologist wants to do nothing about it. I feel like they think I'm faking everything. Believe me, my tears are REAL. Some people have asked me if they can just put me in the hospital to help me get better. Sometimes I wish the answer was yes. Maybe then people would take my invisible illness more serious. But you have to meet a certain level to be put in the hospital and since all of my lab work comes back normal, I never meet that criteria. I know there are other IC patients who are much worse than me and I don't see how they do it.

Today is Self-Injury Awareness day. Please pray for those IC patients who have had a hard time dealing with the terrible disease and have hurt themselves. I know what they are going through. And I can tell you that it would be easy for someone to hurt themselves. You get so depressed and you don't feel like things are ever going to get better. You feel like you will never find a doctor who will be able to help you. It gets depressing living like this everyday. For me, just seeing someone eat or drink something I can't have gets me depressed. These sufferers are going through a lot. Self-injury isn't just cutting yourself. These people can get addicted to pain medicine cause they feel that's the only way they will be able to function. That is self injury. The ultimate self injury is taking your own life. Please pray for those struggling that they will realize things will get better one day! Please pray for us to be strong! That we will be able to give all of our pain and worries to God and trust that he will take care of us.

I know this is an IC based blog but also take time to pray for everyone who is struggling with self injury. Pray that God will give them the strength to believe they are special. We are all special in our own ways. I pray these people will feel some worth.

Thursday, February 28, 2013

Two for Two

Thank you, God for another good day! Two days in a row that's unheard of! Today was one of the best days I've had in a while. It started off with watching a few episodes of Criminal Minds. If you know me then you know I love that show. After that, my dad and I went to get new tires for my car. I was proud of myself because I can finally say I did something for my car without having to depend on my parents for the money. Next, me and my dad went to Arby's and enjoyed a delicious roast beef sandwich. Then it was time for a nap :) I LOVE my naps haha. When I woke up, I decided to go karaoke and I do believe that was the best decision I have ever made. I love to sing but the people I sing with are just amazing! I told them tonight that I do believe if I could come karaoke with them every day then I might get rid of this horrible disease. I haven't laughed like I did tonight in a long time. I really enjoyed karaoke tonight! If you guys are reading this, THANK YOU! Today was just an over all awesome day and I'm so thankful for it. I am so blessed! When ever I have a bad day, I'm going to remember this day to help me get through the bad days! I'm just extremely blessed! Have a good night everyone!

Wednesday, February 27, 2013

Remember the Good Days

Praise God! Today has been a pretty good day so far. I know that can change at any moment, but I'm enjoying it while I can. My brother has come to visit me today and that makes me happy! Today just seems like it's going to be a good day. I haven't posted since Monday, so I need to catch up on what is going on now.

On Monday, I had a doctor appointment. Like most of my recent doctor appointments it didn't go as expected. I didn't get any answers as to why I'm nauseated. When I told them about my symptoms the first thing they thought was KIDNEY STONE. Imagine that. That's only the hundredth time in a year that they have thought I have had a kidney stone. They did a KUB and it turned out normal.. SURPRISE! Next they did blood work and urine. Blood was normal. In the urine no infection showed up but there was a trace of blood and a trace of protein. The trace of blood is easy to explain. My bladder is so inflamed now it is bleeding. The protein didn't really have an explanation for that. So the nurse practitioner wanted to do a 24 hour urine study. I also told her I thought I needed help with getting through the trauma of all this. I have been depressed quite often since I was diagnosed and even before that with the frustration of not being able to find anything. I had been traumatized and I needed help. So she told me to try Viibryd. So I'm trying that and it will take four to six weeks to take full effect on my body. I will keep you up to date on how that is going too. Yesterday I started my 24 hour urine test. You never realize how much you actually go until you do one of those. I turned it in this morning and got some more blood work done. I'm not sure how long it will take to get results back but hopefully soon.

Today I don't have much plans. Just taking it easy and hanging out with my brother for a while and then going to the gym later Mary. It will be the first time I've felt like going to the gym in over a month. Don't worry I won't over do it. I plan on having a GREAT day! Thanks for all the prayers and kind words! Praying for a cure! maybe 2013 will be the year!

15 days until my next appointment in Birmingham!

Monday, February 25, 2013

Birmingham to Today

Well after a TERRIBLE night, I just woke up and don't feel guilty one bit. The past four weeks I have experience intense pain and awful nausea. I have called Birmingham twice after two ER visits and they just don't seem to care. Oh yeah, let's talk about Birmingham. 

January 28, 2013. I was so excited! I was finally gonna meet an "IC specialist", a doctor who can help me. My adrenaline was rushing! So very nervous. I found out quick that would crash. During my appointment I was given what I thought was the worst news EVER! My doctor asked me how many times I urinated during the night (frequent urination is a symptom of IC). I told her I don't go that much. Maybe once a night. She told me right then that I was having symptoms because of the foods I was eating. This is when my adrenaline crashed. You see I FOLLOW my diet as best as I know how to. I have to cheat every once in a while but you try giving up all your favorite foods at once. Then she told me that she is not a fan of giving narcotics for something like this and I said that was fine cause I don't want to be on narcotics unless I absolutely have to be. Then the worst news came. She was referring me to a pelvic floor therapist to start therapy to help me learn how to control my pelvic floor muscles. Doesn't sound too bad right? It gets worse. I can't get an appointment until March 14th, 2013 and it's January 28th, 2013. That's a month and a half away and I am already in so much pain with no relief. So she gives me a new pain medicine. It's non narcotic but acts like one so that should help, right? WRONG! The only thing this medicine does for me is make me itch. I'm actually scratching myself right now. I feel like a dog! 

I go home pretty bummed. These were not the answers I was looking for. But what can I do other than to accept it. It was a sad ride home. But my dad made it better. I sang the entire way home and he told me he could listen to me sing all day long. Then he got me an ice cream cone. Made me feel better. That is now my go to thing whenever I feel bad. 

From this point it is just downhill. The pain has gotten worse, much worse. Unbearable worse. I started having nausea about 3 weeks ago. It has gotten out of control. Everything I eat makes me nauseated. I went to the ER a week ago and found out I have a UTI. That makes things 100% worse! They gave me some pain medicine and some nausea medicine. Well I had ran out so I called Birmingham and they told me I needed to see my family physician cause it sounds like I have something else going on. So this brings us to the present. I have a doctors appointment with my family physician at 3:30. It's 2:15 now so I need to get ready. I'll post later what went on with that. I pray everyday for a cure! I pray everyday for relief! Have a good afternoon everyone!

Sunday, February 24, 2013

Catch up: My Background

I've never blogged before. In fact, I HATE writing. It was never my strong point in school. But I was diagnosed with two invisible illnesses this past year and it has brought me tons of emotions. I had a friend tell me to try blogging to help me vent my emotions. So this is my stab at blogging. I've decided to start at the very beginning of my journey to help you understand what I have and what I am going through. 

January 30, 2012. I work a swing shift at one of the local Emergency Rooms.I had just gotten off a midnight shift at 7 am  and headed home to get some rest for my next shift. I felt this sharp pain in my side and felt like something burst inside of me. I called my doctor and was told that I might need to go to the ER for help. When I get there they do the normal lab work and get a CT of my abdomen. The only thing the CT showed was inflamed lymph nodes and I was told that I needed to see a surgeon right away. So the next day I saw a surgeon and he told me he wasn't concerned about the lymph nodes but thought my gallbladder was the problem. I was set up for a HIDDA scan. The HIDDA scan came back that my gallbladder was only working 29% so that meant I needed to have it removed. 

February 14, 2012. I spent my Valentine's Day having my gallbladder removed. So much fun, right? NO! Two weeks after my surgery I had a check up and I still didn't feel right. I was given a steroid shot and told to come back in two more weeks. Two weeks later I still didn't feel right. My surgeon wanted to do an EGD, which is where they go down your throat to look at your stomach. Thank God it wasn't a Colonoscopy, which is where they look at your stomach the opposite way! EGD came back normal and I remember waking up, hearing it was normal, crying until I fell back to sleep, and waking up and crying again. I was so frustrated. Why wasn't I feeling better? 

May 2012. My parents decided I needed to go to Birmingham, where the world's best doctors are found. Didn't have much luck in Birmingham. We did however eliminate some serious diseases. Five months after the initial attack and we still had no idea what was going on. 

June 2012. I decided to see my OBGYN to see if he could help figure out was going on. First appointment and he said he thought it was Endometriosis, but the only was to diagnose is to go inside and look. At the end of June I was set up for my second surgery in 5 months. Dr. Keith knew what he was doing cause he found the endometriosis and got rid of it and said I should be good in a few days. I was so excited we finally found out what was going on. After 6 months of searching we finally had answers. I was so relieved! Well a few weeks later I still did not feel right. I was still in pain. I made an appointment with my doctor and told him what was going on and he decided to start birth control. I tried that for a couple months and it still was not helping. My pain was getting worse. I went back to my doctor and he said I might have Interstitial Cystitis and referred me to a Urologist. 

September 2012. I had my first appointment with Dr. Smith. He agreed with Dr. Keith that I might have Interstitial Cystitis (IC) but the only way to know was to stretch my bladder and look at it. On September 29th, 2012, I under went my third surgery in less than a year. Out come: My bladder was completely inflamed. 100% inflamed. This was not diagnosis for the IC. During my surgery my bladder was coated with a cocktail of anesthetics and steroids. If that helps then I had IC. Well, the surgery worked! I felt better. Next it was time for my check up after the surgery. That's when the news of what I really have sank in.

According to PubMed Health: "Interstitial cystitis (IC) is a painful condition due to inflammation of the tissues of the bladder wall. The cause is unknown. IC is often misdiagnosed as a urinary tract infection. Patients can go years without a correct diagnosis. On average, there is about a 4-year delay between the time the first symptoms occur and the diagnosis is made. The condition is most common around ages 30 to 40, although it has been reported in younger people. Women are 10 times more likely to have IC than men."

There is known cure for IC. There are several ways to help treat it but it will never go away. I had to make many changes to my life in order to help myself stay better. The first thing I had to do was change my diet. This has been the hardest thing for me. The IC diet takes acid out of your diet. For me this meant: very limited fruits, no tomatoes, no cured meats, no processed meats, no peanuts, pecans or most nuts, no foreign foods, no alcohol, no carbonation, no caffeine....  Wait a second? NO caffeine? No carbonation? I LOVE Dr. Pepper. My uncle was an addict and it was apparently hereditary. And no foreign food? I am a Mexican at heart. I eat Mexican food every day! This was going to be the hardest challenge of my life. Along with the diet change I tried DMSO treatments. For a DMSO treatment a catheter is inserted and that cocktail of anesthetics and steroids is poured in. I have to hold it in for twenty minutes and then I can urinate. The "best" part about it is it makes me smell like garlic. My dad said it was more like mildewed hay. You get the picture. It makes me STINK! 

About a month later, I started hurting again. This time worse. I started having bladder spasms. One of the worst pains someone can endure. I was put on muscle relaxer and a non narcotic pain reliever to help.This stuff didn't even touch my pain.So I continued with DMSO treatments. Still no help! I finally told my doctor nothing was helping and he said I might need another surgery to stretch out my bladder again. January 9th, I was set up for my fourth surgery with DMSO. After the surgery I felt good for about 3 days and I went downhill. I was hurting really bad again and much worse than before. I talked to my doctor and told him this just wasn't working. And asked if he would refer me to a specialist that can help me. He agreed and I was referred to a urologist at the UAB Kirklin Clinic. I had my first appointment on January 29th and was referred to a pelvic floor therapist. My appointment is March 14, 2013 and I cannot wait to get in. 

Right now I am at the worst I've ever been. Most days I can't get out of bed or off the couch. I have to call in to work a lot. But I'll get into that more on my next post.  It's been a long day and I'm going to get some rest! Good night everyone!