A year ago

A year ago if you told me that I would still be sick today, I wouldn't have believed you. I knew there was no way that I could still be sick. But here I am today, still sick. No, I didn't want this. But God has renewed His promises every day. Some days it is easier to act like everything is normal. But then there are those days that reminds me how horrible this disease is and what it has done to my life. I just want to say really?! Is this really happening?

We live in a culture that says we're supposed to always hide our struggles and be fake. If we never talk about our struggles, how can we tell others what God has done in our lives or even realize what God has done in our lives?

The past holidays have been days with lots of food and games. Then there was this year.. Diseases don't take breaks for the holiday's or your birthday or work around your plans.. They are a constant reminder of the reality of sickness.

This year, I didn't have an appetite so eating wasn't something to look forward to, which I hate because I love food! I love all food and before I got sick I ate all the time. It's weird to get nauseous even if someone just mentions food. I'm the oldest of my cousins but I couldn't really play with them because I was in too much pain or too tired. I had to spend today hooked up to an iv pole and I cried because of the pain.

And yet, despite all of this, I am more thankful than I was a year ago. No, none of this is fun or what I asked for, but I am SO blessed. I have hope about something better. I know that one day I won't have to deal with all of this in heaven. I am one of the luckier ones with this disease. I don't have seizures or paralysis which is something to be so thankful for.

I'm very blessed and thankful for everything God has given me. A lot of times I forget what I do have because I focus on what I don't have.

Days like today just remind me of how much my life has changed in the past year. Lot's of bad things have happened and are still happening. But spiritually, more good has come out of it than bad. Yes, there are lots of days when I just say "why?!". But I'm learning to trust God in every situation and remember His promises because He is so faithful and never lets us go.

The days seem so long since I can't sleep. It's 6:15am and I still haven't gone to sleep. I'm so worn out. So please pray that I will be able to get some sleep in the next few days.

Last night I was upset about being sick on Thanksgiving and I looked at the sunset and was reminded of God's awesome power and peace that He gives. I love all the reminders He gives us.

These are some of my cousins! They are great!

When the Tears Fall by Newsboys

"I've had questions, without answers
I've known sorrow, I have known pain
but there's one thing, that I'll cling to
You are faithful, Jesus You're true

when hope is lost, I'll call You Saviour
when pain surrounds, I'll call You healer
when silence falls, You'll be the song within my heart

in the lone hour of my sorrow
through the darkest night of my soul
You surround me and sustain me
my defender, forevermore

when hope is lost, I'll call You Saviour
when pain surrounds, I'll call You healer
when silence falls, You'll be the song within my heart

and I will praise You, I will praise You
when the tears fall, still I will sing to You
and I will praise You, Jesus praise You
through the suffering still I will sing

when hope is lost, I'll call You Saviour
when pain surrounds, I'll call You healer
when silence falls, You'll be the song within my heart

oh yes, You are good to me
You've always been good to me
so trustworthy

when hope is lost, I'll call You Saviour
when pain surrounds, I'll call You healer
when silence falls, You'll be the song within my heart

and I will praise You, and I will praise You
when the tears fall, still I will sing to You
(I will sing to You) I will praise You,
Jesus praise You through the suffering
still I will sing

how faithful and true
sustain me through and through
You are hope and truth
You're my spring of living water
You're my spring of living water

in the lone hour of my sorrow

who springs never fail
be faithful and true
like...
like a spring it never fails
you're my spring never fails"

"For I hold you by your right hand—
I, the Lord your God.
And I say to you,
‘Don’t be afraid. I am here to help you." Isaiah 41:13
"Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you." Deuteronomy 31:6

Thank you so much for all your prayers.

Another New Doctor

Today I went to my primary care for some random things going on. My heart rate is way too high. My heart should be about 80 beats per minute but mine is from 130-150 beats per minute. So we discussed what could be causing it to be so high. I had an ekg at the doctor's office and it just showed that my heart was really fast..thanks doctor for telling me what I already knew. Anyway, he wants me to stop taking my Amitriptyline because a side effect can be Tachycardia, which means fast heart beat. I'm going to monitor my heart and see if it slows down over thanksgiving since I will be off the medicine. If it slows down, great! If not, we will be sent to a Cardiologist for more tests. Hopefully it will slow down!
My doctor wants me to go to an Endocrinologist. We need to see if my adrenals and thyroids are working or not. So that will make my 8th doctor that I am dealing with right now.

Next week is my 1 year mark of diagnosis and treatment so I'm making a video of my story that I will post on here next week!

I cried out, “I am slipping!”
but your unfailing love, O Lord, supported me.
When doubts filled my mind,
your comfort gave me renewed hope and cheer. Psalm 94:18-19 (NLT)

When I said, "My foot is slipping,"
your love, O LORD, supported me.
When anxiety was great within me,
your consolation brought joy to my soul. Psalm 94:18-19 (NIV)

I hope you have a great thanksgiving!! I'm thankful for all of you and your prayers!

A little worried...

I just got home from the sleep specialist. He was very nice and helpful! We went through my story and he diagnosed me with restless leg syndrome. I am sleeping longer, but it's not restful sleep. So he is putting me on Neurontin. It is really an anti-seizure medicine that changes chemicals in the body. It will hopefully help with sleep, restless leg, pain, and a few other problems. Once I get up to a dose that works for me, I will be taken of the Amitriptyline.
My blood pressure is always 90/72 or around there. My pulse is usually 100 which is really high. For the past month I can feel my pulse when I'm still and my pulse has been 120 or so. Today my pulse went from 145 to 130 and moved back and forth around a lot. The doctor got really scared. I thought he was going to send me to the hospital. He called my primary care doctor to tell him so we'll see what he does.
My lab results showed that something with my iron is low. He's putting me on iron pills. He said that it can upset your stomach which is bad because I'm already nauseous. So if makes me too sick he said I would be put in the hosptial and get IV iron. Hopefully it won't come that.

So please be praying that my heartrate is not serious and that I can stay out of the hosptial.

Small Victories

Well, this weekend was busy and good! I didn't have a lot going on, I just got out of the house five days in a row!! My friend had surgery so I got to hang out with her everyday, which was great! On Sunday I was pretty wiped out. I still went to church though. I was debating staying home because I didn't feel good. I'm so glad I went! I know I go to church a lot for selfish reasons, so I love when God brings us to church and the lesson is just what we needed. The lesson in class was about sharing our story with people. It was a great lesson!

One of the key things I have learned is to look for small victories that God has gotten me through. Getting out of the house doesn't sound like a big deal for most people. But God blessed me with five days of feeling okay so that I could be there for my friend! Life would seem so much worse if we didn't look at the small victories. No I'm not physically well, but I got to leave my house for five days in a row!!

Today I was supposed to see my pain management team at the hospital, but they cancelled it. We've had to reschedule it several times since I had the flu so we are ready to see them.

On Thursday I go to the sleep specialist. We've rescheduled that appointment several times too. Hopefully I will be able to go!

Another strange thing that has happened is that my PICC line hole is still there.. my nurse said that it might never close in all the way. It's a little weird!

I haven't been sleeping well so I've been more worn out. I also have a cold right now..

Today I am thankful for the the medical knowledge that we do have.

"Even though the fig trees have no blossoms,
and there are no grapes on the vines;
even though the olive crop fails,
and the fields lie empty and barren;
even though the flocks die in the fields,
and the cattle barns are empty,
yet I will rejoice in the Lord!
I will be joyful in the God of my salvation!
The Sovereign Lord is my strength!
He makes me as surefooted as a deer, able to tread upon the heights."

Habakkuk 3:17-19

Another new plan

I'm finally over the flu! It didn't last too long which is great!

On Wednesday I got to get out of the house and we went to my doctor in Seminole. We discussed how everything is going. The plan is for me to start a detox kit and then start more antibiotics. I need to start killing the Lyme bacteria again because I'm having more neurological symptoms. I have constant muscle twitches and my foot has gone numb a couple times. That means that the Lyme is really getting into my brain. We cannot let it spread or get into my brain anymore.

We also discussed what to do since I don't eat very much. I've lost even more weight since I've had the flu. She said hopefully it's just a virus that is making me nauseous and it will go away soon. We're praying that's what it is!

At the doctor I got an IV called a Meyers Cocktail. No it's not alcohol...haha but it is full of vitamins and minerals. It made me fell better!

I got to go to church Wednesday night!!

I'm going to start saying what I'm thankful for each day until Thanksgiving. I challenge you to do the same! I think we need to remember how much we are blessed even in these hard times.

Your Hands by JJ Heller

"I have unanswered prayers
I have trouble I wish wasn’t there
And I have asked a thousand ways
That you would take my pain away
You would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crooked lie Oh Lord, before these feet of mine Oh Lord, before these feet of mine

When my world is shaking, heaven stands
When my heart is breaking
I never leave your hands

When you walked upon the earth
You healed the broken, lost and hurt
I know you hate to see me cry
One day you will set all things right
Yeah, one day you will set all things right

When my world is shaking, heaven stands
When my heart is breaking
I never leave your hands

Your hands that shaped the world
Are holding me
They hold me still"

I am thankful for God's promises that tells us that He never lets go of us.

I hope you have a great weekend!

Are you kidding me?!

My parents took me to my primary care doctor today. Yesterday I started getting a lot worse. Today I couldn't get warm and when I moved my eyes around they really hurt, so we decided I needed to go to the doctor. My cheeks look like I've been sunburned because of my fever. My fever has been 101 all day. I took some Advil and it went down to 100 but it's going back up again. I have a bad cough too along with the body aches and pain. I just feel like crud. I always feel like that but this is like crud x4.

We were thinking I just had a sinus infection or something. If I had a sinus infection that would just be too easy to take care of. Life can't be that easy. Good thing we went to the doctor because I have THE FLU. What?! I can't get the flu...too late. I guess I've had it for a few days now. So I got some medicine and we're praying that the medicine will work.

Please pray that I will get better soon and that it doesn't get too serious. I appreciate all your prayers so much!

Hope of Heaven

It has been a very hard weekend. Friday was especially sad for so many. My family went to the funeral for the 2 year old boy who drowned. There were a lot of people there to support them. The funeral was good if you can say that..

We laughed at all the cute videos and smiled at the sweet pictures. There was a precious video of him singing Jesus Loves Me. He had so much joy and didn't have a care in the world. He truly loved life. Jesus tells us to watch and learn from little children.

"And he said: 'I tell you the truth, unless you change and become like little children, you will never enter the kingdom of heaven.'" Matthew 18:3

We also cried because there is so much pain. Nothing can take that away.

After the service, we went to the grave site. A lot of people also went to the grave site. This family is so loved. Once everyone was there we read a scripture and released doves. While we watched the doves fly around, they played Jesus Loves Me again. We smiled at the thought of being in heaven, and being free from pain. But we came back to reality and realized that we aren't free from pain here. We hugged the family and just cried with them. Our lives will eventually go back to "normal"..but theirs won't. We need to keep reaching out to them for months and years to come. It's still hard thinking about it.

This song is one that they played at the funeral. If you have a chance, go listen to it. It's so sweet.

Glory Baby by Watermark

Glory Baby, You slipped away
As fast as we could say baby, baby
You were growing, what happened Dear,
You disappeared on us baby, baby
Heaven will hold you before we do
Heaven will keep you safe
Until we're home with you

Until we're home with you
CHORUS
We miss you everyday, miss you in every way
But we know there's a day when we will hold you, we will hold you
And you'll kiss our tears away, when we're home to stay
We can't wait for the day when we will see you, we will see you

so baby let sweet Jesus hold you, until mom and dad can hold you
You'll just have heaven before we do
You'll just have heaven before we do
Sweet little baby, it's hard to understand it
Cause we are hurting, we are hurting
But there is healing, and we know we're stronger people
Through the growing, and in knowing
All things work together for our good
And God works his purposes
Just like he said he would, just like he said he would
CHORUS
We miss you everyday, miss you in every way
But we know there's a day when we will hold you, we will hold you
And you'll kiss our tears away, when we're home to stay
We can't wait for the day when we will see you, we will see you
So baby let sweet Jesus hold you, until mom and dad can hold you
You'll just have heaven before we do
You'll just have heaven before we do

BRIDGE
I can't imagine Heaven's lullabies
And what they must sound like
But I will rest in knowing
Heaven is your home
And it's all you'll ever know, all you'll ever know

"Brothers, we do not want you to be ignorant about those who fall asleep, or to grieve like the rest of men, who have no hope. We believe that Jesus died and rose again and so we believe that God will bring with Jesus those who have fallen asleep in him. According to the Lord's own word, we tell you that we who are still alive, who are left till the coming of the Lord, will certainly not precede those who have fallen asleep. For the Lord himself will come down from heaven, with a loud command, with the voice of the archangel and with the trumpet call of God, and the dead in Christ will rise first. After that, we who are still alive and are left will be caught up together with them in the clouds to meet the Lord in the air. And so we will be with the Lord forever. Therefore encourage each other with these words." 1 Thessalonians 4:13-18

Almost my whole family is sick. My dad has pneumonia and my brother has a sinus infection. It's just wonderful.

I've not been feeling too well. I'm not really eating anything. It's been like this for a week or so. I'm just not hungry. If something does sound good, we'll fix it, but by the time that I start to eat, it doesn't sound good anymore. I'm always nauseous and when I eat it gets worse.

We talked to my doctor in Seminole and I'm going to see her next week. We have to figure out what to do about this because I can't lose anymore weight. I've lost so much already.

Thursday I'm going to see a sleep specialist. This will be another doctor to add to the list.

Today I've been so achy and in so much pain. I've had to take my pain medicine as often as I can. When the pain medicine starts wearing off, I don't even move because of the pain. I also have a fever and a cough. We're watching it very closely. I would rather not end up in the hospital with the flu or pneumonia.

My mom accessed my port for the first time today without a nurse here. It went well! I'm leaving it accessed for a few days since I'm feeling so bad. I'll probably do at least an IV a day.

Please keep praying for the little boy's family. And also that I will not get too seriously sick.