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 feoom 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.