Sunday, April 29, 2012

Quick update

I'll write more hopefully tomorrow, but here's what's been going on. Last Wednesday night we talked to my Lyme doctor in Nevada. Thursday I went to my primary care doctor to get a steroid shot and a 5 day steroid pack to see if that will give me some pain relief. That is at the recommendation of my Lyme doctor.

Saturday night we had to go to the ER once again because of the pain. I developed a cold on Friday and that made everything worse. The pain Saturday was the worst I've had in a while. I got the usual medicines in the hospital plus IV steroids.

Tomorrow I'm going to see a doctor who is an anesthesiologist, but works at the clinic I go to here that does homeopathic treatments. He does pain management. The kind of treatment I might do is done with lasers. I'll explain more about that after we meet with him.

Friday, April 27, 2012

You never let go

I've noticed lately that there are so many songs that I just sing without actually listening to the words. Since I've heard the songs for so long, I just "go through the motions" when I hear them. This is one of those songs. It's been on Klove (Christian radio station) as long as I can remember, but up until a few days ago, it didn't really mean much to me. I actually listened to the words of it.

"Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I'm caught in the middle of the storms of this life
I won't turn back
I know you are near

And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?

Whom then shall I fear?

Oh no, You never let go
Through the calm and through the storm

Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We'll live to know You here on the earth

Yes, I can see a light that is coming for the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You"

Sunday, April 22, 2012

Relay for Life

I've never done Relay for Life before, but this year, we created a team in memory of Rebecca. Our team is the Purple Warriors since purple was her favorite color! If you would like to donate to the American Cancer Society through our team, you can do so on the link below, or give me your donation in person. Relay for Life is on May 18 so we need to raise our money before then. Any amount will help! Together, we can make a difference. Thank you!

Another night in the ER

I slept well on Wednesday night after we got home from the hospital. My pain on Thursday was a little better than it has been, but the pain got worse Thursday night.

Friday started out rough because I didn't sleep well from the pain Thursday night.  All day we tried everything to keep from going back to the hospital. I tried scorching hot baths, heating pads, medicine, my parents rubbing my legs, and more medicine, but nothing worked. I got some relief, but the pain kept coming back and was too much to handle at home. Around 6pm we decided to go back to the ER.

When we got to the hospital, I was taken right back to a room. The doctor came in and said he would run the usual tests to make sure that everything was still okay. He also looked at my bone scan and it was normal! That's great, but it doesn't give us any answers.

My nurse came in and she was the best!! She actually accessed my port instead of starting a peripheral IV! I showed her the bruises and rashes from all the IVs on Wednesday, so she was very happy that she could save me from multiple sticks by using my port.

As she was accessing my port and taking blood, we started talking about Lyme Disease. She thought that it was absurd that we have to go to Nevada for treatments, and that doctors say Lyme doesn't exist here. She thought that was the stupidest thing she had ever heard. I agreed! I told her that obviously ticks with Lyme Disease are smart enough to stop at the border of Oklahoma. She thought that was that funny.

She hooked up the fluids and gave me the first round of medicines and I started feeling better. She gave me Zofran, Ativan, and Dilauded. When she left my room, we heard her telling someone how ridiculous it is that I have to go to Nevada for treatment, and that doctors say Lyme doesn't exist here. I love when nurses and doctors agree with us about how ridiculous the whole situation is. A lot of times, I'm the talk of the ER because the nurses can't believe the fight that we have to go through.

A while later, another doctor came in and he was amazing! It's funny because his name is Dr. Payne. He knew about neurological Lyme! He was trying to figure out what my pain could be from. Could it be neurological or muscle skeletal or something else? I don't remember much of what he said because by that time, I had had a lot of medicine. But we were very impressed with that doctor!! The Dilauded makes me itch, so I got Benadryl too. The amazing doctor, Dr. Payne, got me more medicine because I was still hurting and I had gotten all that the first doctor had ordered for me. He also gave me a prescription for some Ativan to help the pain at home, and help me sleep when the pain is bad. We will definitely remember that doctor in case we run into trouble at that hospital.

After about 5 doses of Dilauded, plus the Benadryl, Zofran, and Ativan, I finally felt better and my pain was mostly gone and I got to go home!

The nurse went to get a wheelchair and this is what she came back with! It was not very comfortable, but was more exciting than the normal wheelchairs.

We got home late Friday night. We had the best doctors and nurses and received the best care at the hospital on Wednesday and Friday. I've been very scared to go to the ER or any new doctor because of what the doctors say to me when they find out I have Lyme. But the care last week was great and once again reminded me why we go to that hospital. We never should have gone to the new hospital that we went to 2 weeks ago. I'm very thankful that our time in the hospital last week was as pleasant as could be.

Thank you again for your prayers! I know I say it a lot, but please keep praying!

Thursday, April 19, 2012

Bone scans, rapid response team, ER, and more

Yesterday turned out to be a very long day at the hospital. I always post about all the bad doctors, so today I'm going to tell you about the good doctors. The care I received at the hospital yesterday was great.

On Tuesday I talked to my primary care doctor and told him I wanted to do something to try and figure out what is causing the pain. I am tired of just taking pain medicine and not trying to figure out what's wrong. So he ordered a bone scan and we got it scheduled for the next day (yesterday).

Yesterday, my dad picked me up from home and we got to the hospital at 11:30. I got registered and was sent to the waiting room. At 11:45 I was called back to get my injection of radioactive dye. The lady who took me back was very nice. We walked through what looked like three locked vaults to get to where they keep the radioactive medicines. She began asking questions and I began to look for veins in my arms. I told her which ones are the best, but she wanted to do it her way. She thought she got one and then said, "man, you weren't kidding when you said your veins were hard to find". Yeah, cause joking about that stuff is funny. She was asking questions about my health and she had never heard of Lyme Disease. She spelled it lime like the food. I wasn't sure whether to hug her and thank her for not knowing anything about the controversy of the disease, or wonder where she's been living the past few years. She finally got a vein and injected the dye. She said I had two hours until I needed to be back for the scan. My dad and I decided to leave the hospital and get lunch.

We drove around for a while trying to decided where to eat, and my dad saw a restaurant called Twin Peaks. He said that on Facebook, several people had "liked" that restaurant. We pulled up and it looked like a building that would be in Colorado! It said, "great views" on it. The parking lot was full, so we assumed the food was great. We walked in and noticed that were ONLY guys there. We thought that was odd. We then saw the waitresses and realized what was going on. The twin peaks and great views there were NOT talking about Colorado. We immediately started laughing and left as fast as we could. We could not stop laughing! My dad couldn't believe that he took his daughter to that place! So we decided on Chili's for lunch instead.

After all the lunch excitement, we headed back to the hospital. We were a few minutes early so we walked down to the ICU because I wanted to see where it was since I don't remember anything from my stay there last summer. I still didn't remember anything. It's very weird not to remember anything about that week.

We returned to the nuclear medicine waiting room and only waited about 5 minutes before they came and got me. My mom got there soon after they called me back, but they made my parents wait in the waiting room. I got on the table and they covered me in warm blankets. Warm blankets are the best part of the hospital. The scan started and I fine for about fifteen minutes. I had taken my pain medicine a couple hours before the scan so that it would kick in right before the scan. It did kick in before the scan, but during the scan the pain got so much worse. About halfway through the pain was excruciating. It felt like all my bones were being crushed. I tried not to cry, but I couldn't help it.

Once the scan was over, they helped me off the table and I struggled to walk. Thankfully we weren't far from the waiting room where my parents were. I saw them and sat down in the chair. I was shaking from the pain in all my bones. My dad ran to get a wheelchair. We sat there for a few minutes trying to figure out what to do. My dad went to get a nurse, but they said they couldn't do anything for me there because I was outpatient. We didn't know if I was having a reaction to the dye or if laying on the table just caused the pain to intensify. We talked to the nurse and decided we needed to go to the ER.

She called the rapid response team to come get me. Very quickly, at least 6 people showed up. They were asking us lots of questions and got me in the wheelchair. There was an ICU nurse, a paramedic, the chaplain, and a few other people that I don't remember who they were. As they took me to the ER, several more people stopped us and asked if we had all that we needed. The ICU nurse said that usually the team is called when an inpatient patient has taken a turn for the worse and might need to go to the ICU. The chaplain is there to provide comfort for the family and patient. On the way to the ER, one of the nurses started the process of getting me registered for the ER and letting them know I was coming.

When we arrived at the ER they immediately took me back. They quickly cut off my outpatient bracelet and put on a new one. There was already a team of people in my room waiting for me. They started hooking me up to monitors and asking questions. The doctor came in soon after and it was our favorite doctor! I wanted to hug him! It's always comforting to see a familiar face. He did as he always does, kneels by the bed and just listens to us. He said he wouldn't think that I would have been having a reaction to the dye, but that with my history, he wouldn't be surprised. He said that he would get me to feeling better soon.

The rapid response team was still in the room, but once they saw that I was stable, they left. The chaplain came over and shook my hand and told me it was going to be okay. He told me that he has a daughter my age, and that he felt my pain. He had tears in his eyes. I could tell he really cared.

My two nurses were very nice, but it took two people to get an IV started since I had already had one earlier for the dye. Of course they didn't want want to use my port. They got it on the third try! They hooked me up to fluids and then went to get all the medicines that the doctor had ordered. The doctor ordered Benadryl (in case I was having a reaction to the dye), Dilauded (pain medicine), Ativan (anti-anxiety and pain medicine, I had hyperventilated from all the pain), Zofran (nausea), and one other medicine that I took orally. I don't remember what it was.

After that nice cocktail of drugs, I felt so much better. Anyone would feel better after all that. What I love about that ER doctor is that he actually listened to us. We told him that my primary care doctor is trying to find the cause of the bone pain, so the ER doctor knew that all he needed to was to get the pain under control. He didn't run any other tests. No blood work, no urine analysis, nothing. He actually listened to us, unlike the ER doctor we had two weeks ago.

I think we were in the ER for several hours. After all that medicine I was pretty out of it for the rest of the night. I slept well last night!

So even though yesterday didn't go as planned, we are so thankful for the care we received. We are so thankful for the rapid response team getting me to an ER room fast. We are so thankful for the ER doctor who listens. We are so thankful for the relief that I got from the medicines in the ER. We are so thankful for your prayers.

We should have the bone scan results tomorrow or Monday. Until then, I'm staying on top of the pain. Thank you so much for the prayers. Please keep praying!

Wednesday, April 18, 2012

ER again

I'll write more later, but during and after the bone scan I was in excruciating pain. They called the rapid response team and took me to the ER. Please keep praying for comfort and answers.

Tuesday, April 17, 2012

Bone scans tomorrow

I'm still having lots of pain in all my bones, so we talked to my primary care doctor again and he ordered bone scans of my whole body. I'm having them done at the hospital tomorrow afternoon.

Encouraging and comforting music

Since I got sick, music has been very encouraging and comforting to me. I can always listen to it no matter how sick or well I am. The nights when I don't sleep well, I turn on my music and just lay there and listen to it. The past couple of months, music has been what has comforted me the most. Reading has been difficult because of medicines, my memory, and various things, so I just listen to music. God has really used it to speak to me and comfort me. 

Here's the playlist I made when things started getting tough a couple months ago. I've added a few songs that have been comforting to me since Rebecca went to be with Jesus. I've posted a couple lines of lyrics from each song. 

-It Is Well by Todd Fields
     This is the old hymn, but there's a part added that says, "it is well, it is well, through the storm, I am held, it is well, it is well with my soul"

-It Is Well by Aaron Keyes
     Just the normal hymn. I love it.

-God Gave Me You by Dave Barnes
     "God gave me you for the ups and downs, God gave me you for the days of doubt, for when I think I’ve lost my way, there are no words here left to say, it’s true, God gave me you."

-Live Like That by Sidewalk Prophets
     "Sometimes I think, what will people say of me when I'm only just a memory, when I'm home where my soul belongs, I want to live like that, and give it all I have, so that everything I say and do points to You"

-He Said by Group 1 Crew
     "I won't give you more, more than you can take, and I might let you bend, but I won't let you break, and know, I'll never, ever let you go"

-Long Way Home by Steven Curtis Chapman
     "But I had no way of knowing, just how hard this journey could be, cause the valleys are deeper and the mountains are steeper than I ever would of dreamed, but I know we’re gonna make it and I know we’re gonna get there soon, and I know some times it seems like we're going the wrong way, but it's just a long way home"

-10,000 Reasons (Bless the Lord) by Matt Redman
     "The sun comes up, it's a new day dawning, it's time to sing Your song again, whatever may pass, and whatever lies before me, let me be singing when the evening comes, bless the Lord, O my soul, o my soul, worship His holy name, sing like never beforeO my soulI'll worship Your holy name"

-Homesick by Mercy Me
     "You're in a better place, I've heard a thousand times, and at least a thousand times I've rejoiced for you, but the reason why I'm broken, the reason why I cry, is how long must I wait to be with you? In Christ, there are no goodbye and in Christ, there is no end, so I'll hold onto Jesus with all that I have to see you again"

-Save A Place For Me by Matthew West
     "I have asked the question why, but I guess the answer’s for another time, so instead I’ll pray with every tear and be thankful for the time I had you here, I wanna live my life just like you did, make the most of my time, just like you did, and I wanna make my home up in the sky just like you did, oh, but until I get there, until I get there, save a place for me"

-I Will Rise by Chris Tomlin
     "Jesus has overcome and the grave is overwhelmed, the victory is won, He is risen from the dead, and I will rise when He calls my name, no more sorrow, no more pain, I will rise on eagles' wings before my God, fall on my knees, and rise, I will rise"

-With Hope by Steven Curtis Chapman
     "We can cry with hope, we can say goodbye with hope, cause we know our goodbye is not the end, and we can grieve with hope, cause we believe with hope, there's a place by God's grace, there's a place where we'll see your face again"

-Our God by Chris Tomlin (We sang these last three songs at Rebecca's funeral)
     "Water you turned into wine, opened the eyes of the blind there's no one like you none like You! Into the darkness you shine, out of the ashes we rise, there's no one like you, none like You! Our God is greater, our God is stronger, God you are higher than any other. Our God is Healer, Awesome in Power, Our God! Our God!"

-Mighty To Save by Laura Story 
     "Savior, He can move the mountains, my God is Mighty to save, He is Mighty to save, forever author of salvation, He rose and conquered the grave, Jesus conquered the grave"

-There's A Stirring by Caedmon's Call
     "There's a stirring deep within me, could it be my time has come, when I'll see my gracious Savior face to face when all is done, is that his voice i am hearing? come away my precious one, is He calling me? Is he calling me? I will rise up, rise up, and bow down, and lay my crown at His wounded feet"

I hope you these songs encourage you too! What are some of your favorite songs right now?

Saturday, April 14, 2012

Easter!...a few days late

Yes, I realize Easter was several days ago. I was in too much of a pain medicine fog to form any kind of thoughts. Slowly, I'm coming out of the fog.

Back to Easter. This year, Easter was different. This year, Easter meant more. I wish I wouldn't have just gone through the "Easter" routine for the past 18 years. You know the routine. Buy new clothes, eat a big lunch at home, get Easter baskets, have an Easter egg hunt, oh and you get to wear white after Easter. For so many years, I've just gone through the motions. During church I'll listen to the sermon and think about the Resurrection, but once church is over, I'm mostly focused on the earthly things that we do on Easter. I hate that I've taken it for granted so many years.

Last year, Easter meant more because my mom and I were at my doctor in Reno, Nevada. We had been there for a little over a month by then. I was too sick to go to church and the rest of my family was back home in Oklahoma. There was no big Easter lunch because I didn't feel like eating. So last year, I thought more about the true meaning because I was unable to do the normal activities.

This year, on my 19th Easter, I was more thankful for Christ's resurrection than I have ever been. Because Jesus rose from the dead, death does not have the final say! Because Jesus rose from the dead, I will see Rebecca again! Because Jesus rose from the dead, you and I, and anyone else who accepts Christ will LIVE! Death has no sting! Death has no victory! Jesus conquered sin!

Before Rebecca went to be with Jesus, no one that close to me had passed away. Sure, I know lots of people who have gone to Heaven, but no one as close as her.
Ever since she went to Heaven, I've noticed so many songs that talk about Christ conquering the grave, and death having no sting! I still can't believe how I have missed that my whole life. Here are parts of songs that talk about that.

I Will Rise
"Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead 

And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles' wings
Before my God fall on my knees
And rise
I will rise"

Mighty to Save
"Savior, He can move the mountains,
My God is Mighty to save,
He is Mighty to save.
Forever, Author of salvation,
He rose and conquered the grave,Jesus conquered the grave.

In Christ Alone
"There in the ground His body lay
Light of the world by darkness slain:
Then bursting forth in glorious Day
Up from the grave he rose again!
And as He stands in victory
Sin's curse has lost its grip on me,

For I am His and He is mine -
Bought with the precious blood of Christ.

No guilt in life, no fear in death,
This is the power of Christ in me;
From life's first cry to final breath.
Jesus commands my destiny.
No power of hell, no scheme of man,
Can ever pluck me from His hand;

Till He returns or calls me home,
Here in the power of Christ I'll stand."

Glorious Day
"Living He loved me, dying He saved me
And buried He carried my sins far away
Rising He justified freely forever
One day He's coming, oh, glorious day, oh, glorious day"

Because He Lives
"God sent His son, they called Him Jesus
He came to love, 
heal, and forgive.
He lived and died to buy my pardon,
An empty grave is there to prove my Savior lives.

Because He lives, I can face tomorrow.
Because He lives, All fear is gone.
Because I know He holds the future,
And life is worth the living 
just because He lives.

How sweet to hold a newborn baby,
And feel the pride and joy he gives.
But greater still the calm assurance,
This child can 
face uncertain days because He lives.

Because He lives, I can face tomorrow.
Because He lives, All fear is gone.
Because I know He holds the future,
And life is worth the living just because He lives.

And then one day I'll cross the river,
I'll fight life's final war with pain. 

And then as death gives way to victory,
I'll see the lights of glory and I'll know He lives.

Because He lives, I can face tomorrow.
Because He lives, All fear is gone!
Because I know He holds the future
And life is worth the living just because He lives!"

Here are some verses about the Resurrection. 

"I am the resurrection and the life. He who believes in me will live, even though he dies; and whoever lives and believes in me will never die." John 11:25-26

"Where, O death, is your victory?
Where, O death, is your sting?”
The sting of death is sin, and the power of sin is the law. But thanks be to God! He gives us the victory through our Lord Jesus Christ." 1 Corinthians 15:55-57

"Why do you look for the living among the dead? He is not here; he has risen!" Luke 24:5-6

"Now if we died with Christ, we believe that we will also live with him.  For we know that since Christ was raised from the dead, he cannot die again; death no longer has mastery over him. The death he died, he died to sin once for all; but the life he lives, he lives to God." Romans 6:8-10

"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." 1 Thessalonians 4:14

As two of my friends and Rebecca's mom and sister took flowers to Rebecca's grave on Easter, we were able to smile and laugh because we know this isn't the end. Because of Jesus conquering sin and death, we know that Rebecca is alive and well in Heaven. Because of Jesus conquering sin and death, we know that one day, we will be reunited with her when we meet Jesus face to face.

Everyday is a day of rejoicing because Jesus has overcome death and sin! Praise God! I'm thankful that I now have a new perspective. I am able to really appreciate what Jesus has done for us. Since Rebecca went to be with Jesus, a day hasn't gone by that I haven't thanked God for Christ's resurrection. I won't be able to live life the same now, and for that I am thankful.

"Because He lives, I can face tomorrow!"

Thursday, April 12, 2012

Chronic Lyme Disease on the Dr. Phil show

Tomorrow on Dr. Phil's show, he is discussing Chronic (late stage, neurological) Lyme Disease! One of the show's producers has chronic Lyme, so he has seen how devastating it is. He's going to talk to several people who were told "it was in their head" for years. I'm so thankful that they are finally starting to recognize Late Stage Lyme! The show tomorrow is called "Deadly Consequences". For us, it's on
 ABC tomorrow at 9am central time. You can watch a preview of the show on this link!

Great quote

"When you feel like you're drowning in life's situation, don't worry. Your life guard walks on water!"

Tuesday, April 10, 2012

A couple quick thoughts.

I'm doing better than I was last week. My pain is mostly controlled with the new pain medicine. Yesterday, I didn't take scheduled doses of pain medicine so that I could see if I could get off of it. However, the pain came back which led to a restless night with lots of pain. I'll try again soon.

A month ago today Rebecca went to be with Jesus. It seems like so long ago, but also like it happened yesterday. I miss her so much, but I'm praising God that she's safe with Him-cancer free. I can only imagine how joyful and peaceful she is.

I don't like when people say someone lost their battle to the disease if they pass away from it. Christ has overcome everything. If they were a Christian, they actually beat the disease when they went to Heaven. If they were a Christian, the disease didn't win. Those people who know Jesus and pass away battling a disease are finally free from it! Diseases can't win. Diseases don't have the final say. Death doesn't have the final say. Jesus conquered them!

I can't remember if I posted this song already. I heard it for the first time the day after Rebecca went to be with Jesus. I love it. It makes you think about how you live each day. 

Live Like That by Sidewalk Prophets
"Sometimes I think
What will people say of me 

When I'm only just a memory
When I'm home where my soul belongs

Was I love
When no one else would show up 

Was I Jesus to the least of us
Was my worship more than just a song

I want to live like that
And give it all I have
So that everything I say and do
Points to You 

If love is who I am
Then this is where I'll stand
Recklessly abandoned
Never holding back

I want to live like that
I want to live like that

Am I proof
That You are who you say You are
That grace can really change a heart
Do I live like Your love is true

People pass
And even if they don't know my name
Is there evidence that I've been changed
When they see me, do they see You 

I want to live like that
And give it all I have
So that everything I say and do
Points to You 

If love is who I am
Then this is where I'll stand
Recklessly abandoned
Never holding back

I want to live like that
I want to live like that

I want to show the world the love You gave for me
I'm longing for the world to know the glory of the King

I want to live like that
And give it all I have
So that everything I say and do
Points to You 

If love is who I am
Then this is where I'll stand
Recklessly abandoned
Never holding back

I want to live like that
I want to live like that"

I love the part that says "when they see me do they see you?" When people look at me and my life, do they see Christ? Do they see that even in the hardest times, I have hope and joy through Christ? Does everything I do point to God and glorify Him? 

Friday, April 6, 2012

Good news and not so good news (Health Update)

The good news! I know I haven't actually posted about my health much lately. Part of the reason is that I've been doing better! There hasn't been much to post about!

That was up until this week. The bad news. Monday I started having bone pain all over. All my bones just hurt. Tuesday I went to my primary care and got some pain meds and she ran lots of tests. The tests came out normal which is great!

The pain has continued to get worse this week and last night we went to the ER. We went to the new hospital by our house and it was not a good experience at all. I was sent home in the same amount of pain as I arrived in. The nurses and everyone were great. The doctor however was not. The ER doc sent me home with another oral pain medicine, but it didn't give much relief. It gave me enough relief to where I stopped begging to go to another hospital.

I've been up all night (probably from all the pain meds and pain), but my primary care doctor just prescribed some even stronger pain medicine. I just took it and hopefully that will give me relief. We really need this to work as we don't want to go to another hospital today. I'm actually not giving that as an option anymore since we have a (hopefully) better pain management plan now. So we are planning for this new med to work!

Thank you for all your prayers. Please continue to pray for relief and rest. After being up all night, I'm ready to have enough relief to sleep.

Wednesday, April 4, 2012

A few pictures

Here are some pictures from recently. 

This was on Feb. 26th on my birthday. So glad that Rebecca got to come. That made it the best birthday ever. 

If you need to cook dinner while doing an IV, don't worry! You can just hang the bag above the oven!

I'm not sure if I ever mentioned it, but we got a new dog a couple months ago! Her name is Charlie and she's around a year old. She's a chocolate lab and is very sweet. She and Tucker are now partners in crime. 

Charlie and I outside one day. Squirt Jr (my IV pole) got to join us outside.  

All the flowers are gorgeous right now.