Tuesday, December 30, 2014

You Carry Me

"I will be your God throughout your lifetime--until your hair is white with age. I made you, and I will care for you. I will carry you along and save you." Isaiah 46:4

I love this song by Moriah Peters. God is there through it all. He's never left our side. 

Feels like it's been miles and miles
Feels like it's an uphill climb
Sometimes I get weary on the way
But when I look back at where I've been
When I look back, I'm sure of it
I was right there in Your arms and I can say

Every moment of my life
God, You never left my side
Every valley, every storm
You were there, You were there
I don't need to know what's next
You'll be with me every step
Through it all, through it all
I can see You carry me

There are days I wonder if
You can fix the mess I'm in
Times when nothing seems
To go the way it should
But then I look back on every season
I can find there's ten thousand reasons
To trust that You can work all things for good

Through the wind and waves
Through my worst mistakes
Through the times I thought I walked alone
You were holding me
You were whispering
I will never leave you on your own

Friday, December 26, 2014

Tuesday, December 23, 2014

Christmas time- All is well

This year, Thanksgiving was different, and Christmas will be too. It's the first year that both of my grandparents are gone. I know they're having the best Christmas in Heaven, but we miss them so much. This picture was at Christmas several years ago. I love how my grandma and grandpa are laughing in this picture. 

The past week has been very challenging. On Tuesday, a week ago, I was in Walmart and I had a big seizure. I was alone but people saw me and called 911. I was unconscious until the paramedics got there and then I started to wake up. My back and neck hurt so they put me on a backboard and a neck brace. They kept trying to start an IV but never could. They got me in the ambulance and gave me a sedative through my nose since they couldn't get an IV.  My parents were called and were meeting us at the hospital. The hospital is literally across the street from Walmart. They got the seizures stopped and I was able to go home that night. 

I'm now not allowed to drive because of my seizures. I'm going to be seeing a neurologist here in OKC on Dec. 31st. 

It's so frustrating because since our trip to Nevada in September, I had been doing so much better, and then Tuesday happened. 

I'm so tired. Tired of being sick. Tired of taking medicines just to be able to function, tired of the hospital, tired of missing out on things. Tired of hurting.

When people ask what I want for Christmas, I don't know what to tell them. I want to wake up on Christmas without pain. I want to wake up on Christmas morning and not have to worry about the fatigue that might make me cut family time short. I want to go just one day without needing nausea or pain medicine. I just want to be better. 

Even though I want all of this so badly, I know that we have already been given the best gift we could ask for. We have been given the gift of Christ. Through Him, we have been given hope. Through Him we have been given joy. Through Him we have been given peace. Through Him we have been given a promise. We have been promised that if we follow Him, we WILL be healed one day from everything. My one Christmas wish has already been granted, even though it might not happen in this lifetime.

I think sometimes we think that we should just trust God's plan and that is enough. That is true. But it's still okay to ask for a miracle and for God to heal us on earth. God wants us to ask Him.

"Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:6-7

"And whatever you ask in prayer, you will receive, if you have faith.” Matthew 21:22

This year I will be more thankful for the gifts and thoughtfulness of people. I will be more thankful that we are here with family and friends. I will be more thankful for the gift of Jesus and what that means for us.

So really, this Christmas, I have what I wanted plus much more. I just have to change my perspective. If I hadn't gotten sick, I might still be wrapped up in the earthly things around this time of year. I am so blessed to have this new perspective, even though we wish things were different.

I love this song because all is well because of Jesus. We WILL be healed one day, even if not on this earth. And while that's so hard to accept, we just have to trust in God's perfect plan.

"Hear the heart of Adam's prayer
In the hold of Satan's snare.
But there is hope, and grace will tell:
God has a plan, and all is well.

Every son of Adam's race
Felt the grip of Satan's chains;
When the Lamb came to Earth's cell,
He broke the chains, and all is well.

All is well! All is well!
Praise the Lamb! All is well!
He holds the keys of Death and Hell!
Jesus reigns, and all is well!

To the cross I will come,
A sinner weak and undone.
God will break the tempter's spell,
And I will sing for all is well!

With this cup, with this bread,
We proclaim Your death.
The cross was raised and evil fell;
Death has died, and all is well!

All is well! Praise the Lamb! All is well!
He holds the keys of Death and Hell!
Jesus reigns, and all is well!"

"He who did not spare his own Son, but gave him up for us all--how will he not also, along with him, graciously give us all things?" Romans 8:32

So this year, our Christmas will be different without my grandparents. There will be two empty seats at the table. And I sure would have thought that by now, 6 years after I was diagnosed, that I would be completely better. But as I'm learning each day, all is well. Jesus was born to die so that we could have eternal life and be forgiven of our sins. All is well. 

Things haven't gone like I planned, but it's not my plan to begin with, it's God's. Things don't seem to be well right now. But even through it all, I'm able to say "even so, it is well with my soul"

I hope you all have a Merry Christmas and enjoy spending time with your families!

Friday, December 12, 2014

All is well

I was blessed to be a part of this video for church! They did an incredible job! It tells the stories of people going through hard times and the video was to show that things might not be well right now, but one day they will be. Jesus was born on this earth, crucified, and then rose from the dead, so all really IS well. I love the quote they used in the video too. 

"Everything will be okay in the end. If it's not okay, it's not the end." 

Jesus came to give us eternal life without pain or suffering, so that's why we can say "It is well", even when all is not well. This time of year is hard because it's the "happiest time of the year" but in reality, for some it's the hardest time of the year due to illness, the loss of loved ones, and other things. But with God, we can say "all is well", even when it's not. God is still faithful when things are not okay. 

For some reason it's not putting this as link, so you'll have to copy and paste this link to watch the video. 


Friday, December 5, 2014

Diagnosed 6 years ago continued...

Here are more pictures of my journey since I was diagnosed 6 years ago

So many scans 

Look how high the bed goes! We played with it for a long time. I was in the hospital because of severe abdominal pain and was having exploratory surgery 

My good friend Anne at the clinic in Nevada. So thankful for her! 

Going home from one of my surgeries 

Me sweet dog doesn't understand that it's not okay to jump on my stomach after abdominal surgery 

Another ER trip. They were really crowded and put me in a weird room where they put people if there's a chemical spill or something like that

This was in the hospital in Reno, Nevada. I got a staph infection in my port that was MRSA, so I was immediately admitted to the hospital and started on strong IV antibiotics. The day after I was admitted I had emergency surgery to take the port out. They would have done the surgery sooner, but they needed to make sure I was stable enough to handle surgery with how bad the infection was.

 You can kinda see the infection starting around my port 

Having fun at the clinic! I was getting my hair done!

2nd PICC line that I had for 8 weeks to receive the IV antibiotics for the staph infection

My poor hand was so swollen and bruised from all the IV tries before my PICC line

I'm allergic to the tape to hold the PICC line in place, and allergic to what they have to clean it with so I get really bad hives and it swells up really big 

My 3rd PICC line that was put in at the hospital in Nevada in September when we were there

Getting me hooked up to an EEG which measures brain waves and other things. We were trying to find a cause for my seizures, and we did!

Doctors looking at my EEG while I was seizing.

My Lyme doctor holding my hand during my constant seizures. He's the best 

This wasn't fun

Or this. There's nothing like an IV in the knuckle

3rd PICC line

So many monitors and IVs

Getting ready to take my 3rd PICC line out at the clinic in Nevada in September of this year

And it's out!

This is what a PICC line looks like and how far it goes in to your heart! Pretty cool. It goes all the way past the nurse's hand with the glove on and right to where my heart is

Diagnosed 6 Years Ago

6 years ago, on December 3rd, 2008, I was diagnosed with Late Stage Neurological Lyme disease. I was also diagnosed with at least 3 co-infections that can actually be harder to treat than the Lyme. I had been sick for 2 years before I was diagnosed but no one knew what was wrong, so I've been sick for 8 years now. I never thought that I would still be fighting this disease but I'm not giving up!! God has never left me and my story is not over. I wish I was healed by now, but no matter how long, the healing is in HIS hands! 

Plus, I've become friends with Chuck Norris because we go to the same clinic! They are such sweet people! We spent many hours praying together. We also spent many nights at the clinic with them because I needed extra care throughout the night and so did the Norris' so it was just them, my mom and I, the Norris' security guard, and one of the nurses. The clinic closes to everyone around 5 or 6 but the Norris' and I needed around the clock care so we stayed overnight some nights. 

Almost a year ago I was diagnosed with Gastropareis which means stomach paralysis. I've had 3 scopes this year to find the problems. Gastroparesis is very difficult to treat also and causes its own set of problems. I have problems with every organ from the Lyme, including my brain and heart. 

But I'm not letting any of this get me down! God is so good and faithful. As crazy as this sounds, if I had the chance to change the past 8 years, I don't know if I would. The reason why, is because I've grown so much spiritually. I've held God's promises close to my heart and His promises and hope can get you through anything. I've gotten to meet people I never would have met if I didn't have lyme, i've gotten to share my story on my blog and with people, and people on every continent, except Antarctica, read my blog. I'm able to share what God has done. If I hadn't gotten sick, I wouldn't have learned to appreciate the small things and I think I would still take things for granted. I feel like there's purpose in this pain because I'm able to help others through my blog or sometimes people will just call us to ask questions. 

Here is one of my favorite verses since I got sick and then the song is Praise You in this Storm which has always been one of my favorites since I got sick.

"My flesh and my heart may fail, but GOD is the strength of my heart and my portion for ever" -Psalm 73:25

"I was sure by now
God that You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
'I'm with you'
And as Your mercy falls
I raise my hands and praise the God who gives and takes away

And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm"

Here are some pictures from my journey since being diagnosed. The caption for each pic with be under the picture 

  Voice recital as I was starting to get sick 

The day I was diagnosed at the clinic in Reno, Nevada. 

Looking so sick as they drew blood and started an IV 

You can hang your IVs on anything! 

First ER trip. They gave me a couple bags IV fluids 

Another trip to Nevada. We've been 6 or 7 times I believe 

More treatments in Nevada 

Grayson and I at the clinic 

These are our good friends Robin and Allen who are missionaries for our church. They're missionaries in Brazil. They are the one who told us about this clinic and way before I got sick, my mom went with Robin to the clinic because her husband couldn't come that time. It was such a blessing that my mom already knew about the clinic 

First PICC line. A PICC is a peripherally inserted central catheter that goes from my arm, up through my jugular vein in my neck, and then down straight into my heart. 

All of my medical supplies. This doesn't include medicines, just supplies for IVs and things 

To get out of having to clean the house , you just hook yourself up to an IV!

Sleep study. So many monitors 

This is what a port looks like. I had it surgically places in my chest on the right. It also goes up through the jugular and down to my heart. This is more permanent than a PICC line. 

My mom accessing my port. The port us under the skin so when it's not accessed you can shower. You access it with a needle that's an inch long. 

What it looks like accessed 

Before one of my 6 surgeries. I think this was the experimental surgery where they found an orange sized cyst, endometriosis, and acute appendicitis that didn't show up on bloodwork or scans, so he saved my life. He went with his gut telling him that something was wrong so he did emergency surgery and found those things. 

Beautiful sign some kids from church made me! 

This is supposed to be a wheelchair...kinda weird 

Going home after one of my 6 surgeries 

These are all the supplies it took to access my port. I had my port for 4 years. I had to have emergency surgery i Nevada to take it out because I had MRSA staph infection 

One of my hundreds of ER trips

 You can cook and be hooked up to an IV!

Squirt (my IV pole's name!) I mean, how boring would it be if I didn't name it??

Chuck Norris and I! 

More treatments in Nevada 

My helper for the day! I was hooked up to so many things and needed help getting around 

After a procedure to take biopsies of my stomach and esophagus and look for any problems. I've had 2 of those this year

New laser treatments that go in your vein and kill bacteria and viruses and just cleans your blood 

Im going to start a new post with more pictures.