Phone conference with Lyme doctor and Make A Wish

Last night, my mom talked to my Lyme doctor in Nevada for quite a while. We hadn't talked to him for a while, so there was a lot to discuss. He didn't know about my hospitalization and surgery last month. He was very shocked when my mom told him about everything, but so relieved that it's taken care of. As soon as he knew what happened, he immediately asked what my doctor (gynecologist) is going to do to prevent it. He said that he would put me on Lupron, which is EXACTLY what the gynecologist wants to put me on. He was very impressed with everything the gynecologist has done. So, I have an appointment with the gynecologist in a couple of weeks to start the injections.
He said that one of the first things that they all learn in medical school is to never rely on just test results. Sadly, most doctors forgot that. Thankfully, my Lyme doctor and gynecologist have not forgotten that! My gynecologist had a feeling that something was seriously wrong with me, even though the CT scan and blood work were normal. He went with his instinct and he was so right! My Lyme doctor was very impressed, since most doctors wouldn't do that. He was also impressed that the gynecologist wanted us to talk to HIM before putting me on any medicine.
After my gallbladder surgery, I had some kind of viral colon infection. My Lyme doctor thinks that that could have contributed to all of the problems I had. He said that in women, colon infections can cause ovarian cysts and other problems. He also said the Lyme contributed also. Did you know most of your immune system is in your gut? He said that healthy people with good immune systems would be able to have fought off the colon infection and it wouldn't have caused problems. This shows him that my immune system is very weak. The gallbladder problems and cysts, appendicitis, and endometriosis could have been there for several months without showing any signs, compromising my immune system even more. Because of this, I really need to go to Nevada to strengthen my immune system. As soon as I'm fully recovered from surgery, I have to start back on the butt shot (aka most painful shot that exists. Grown men pass out from it.) to help my immune system fight any viruses and bacteria that I have.
He also said that I qualify for Make A Wish, so he is starting the whole referral process!
This is a quick description of what Make A Wish is from their website.
"The purpose of the Make-A-Wish Foundation is to grant the wishes of children ages 2 ½ to 18 years old who have been diagnosed with a life-threatening medical condition (i.e. a progressive, degenerative or malignant medical condition that has placed the child’s life in jeopardy)."
Here is their website. They are such a great foundation that brings joy to so many kids lives!!!
http://www.wish.org/about
I didn't walk today or do any exercises because I have a migraine that's making my body and throat ache too. I didn't sleep very well so I could tell that I was getting a migraine. It's better this afternoon since I took some medicine, but I'm just very tired and worn out. I need to rest up because Winterfest is in 2 days! I'm so excited!!!!

Surgery update

Wednesday was surgery day! Tuesday night, the night before surgery, I did not sleep well at all. I guess I was nervous and excited! On Monday they told us to be at the hospital at 9:30 am for surgery at 11:30. On Tuesday they called and said they changed the time to 9:15 am. Haha really? Did they really just call to tell us to be there 15 minutes earlier? We thought that was really funny!

My brother went with us to the hospital and didn't have to go to school. He owes me big time. Because of my surgery he didn't have to go to school!

So Wednesday morning, we got to the hospital at 9:15 am. We filled out all the paper work and everything which took quite a while. I still don't understand why checking in takes so long. The lady checking me in was a little tired I think because she kept asking questions twice...it was funny!

When we checked in, the hospital gave me the bear on the left! How sweet of them. One of my friends brought a balloon with the frog!

While we were checking in, a couple of my friends came to the hospital! That helped passed time! They took blood while we were checking in and man did that hurt! She had to dig around to find my vein as always.

Finally after checking in we got to my room! I love the way this hospital is set up. Since it's a smaller hospital, you get your own huge room before surgery and the same one after! It's not like the hospitals with curtain areas. The rooms are very big and nice!

My nana got to the hospital right before we got to my room! Once we got to my room, several more people came! There were a couple of elders from church and some friends. My other grandparents came and brought donuts and drinks for everyone! Too bad I couldn't eat or drink. I almost kicked them out but I decided I shouldn't do that. Aren't I nice? I think so!

I was put in the same room as when I had my port surgery last October!

My nurse came in and said, "I remember you! I was your nurse when you had your port surgery. And you have Lyme Disease!". We laughed and couldn't believe she remembered me. But then we realized that she has probably never had a patient besides me with Lyme. She was so nice! We loved her.

She had a hard time getting my IV started and ended up putting it in a weird place. I'm used to getting IVs obviously and they usually don't bother me but this one hurt so much! The vein was deep in my arm and I thought the needle was going to come out of the other side of my arm!

Once she got the IV started and asked a million questions it was time to take me to the holding room. They took me to holding at 11. Only my mom and dad could go with me. The nurse who took me to holding was impressed with how many people were there for me. I told her how great our church family is!

The surgeon came to talk to us in holding. There was a problem because the only thing I'm not allergic to is alcohol to clean my skin with. They have to use 2 different solutions to prep with to make sure the incisions don't get infected. So we had to pick one that I was allergic to. Thankfully I haven't had any problems! I do have a little rash from the bandages they put on my incisions.

My surgeon looks and probably is very young so my parents joke that the only surgery he has ever done is with the game Operation. But so many people have said he is a great surgeon so we weren't too worried!

They wanted to make sure my heart would be okay with anesthesia so they did an EKG right before I went to the OR.

Next, the anesthesiologist came to talk to me. Then she asked the dreaded question. Why do you have a port? We told her I have Lyme and she immediately said I thought you couldn't get that here. Oh no! Here we go again... We explained that we have talked to one of the best tick specialists in the state who works at Oklahoma State University and travels the world studying ticks and she said that Lyme is definitely everywhere including here. Then the anesthesiologist changed completely. She said she went to school in the northeast and saw so many Lyme patients. Once she moved back to Oklahoma, she thought she had Lyme Disease because she got a tick bite and had the symptoms. So she went to a doctor here and they told her that was impossible. She believed them because they "know everything". We told her a little about my story and she said she now believes she actually could have Lyme. She said she would get tested. After we finished talking, we heard her telling all the other nurses and doctors that were in there about it!! We were so excited that she understands now and will help spread awareness!!!! We really liked her! I really hope she finds out if she has Lyme and starts treatment soon. We heard her say she is on some natural medicines to try and help her symptoms.

I told her that last time I had surgery I got sick afterwords from the anesthesia. She put a nausea patch behind me ear that would last for 24 hours!

At 11:30 the nurse came to give me some medicine to help me relax. Once it kicked in I said goodbye to my parents and they took me to the OR! I remember a lot from the OR. They all introduced themselves to me and I moved over to the operating table. They started to get things ready while I was still awake! We talked about random things while they positioned my arms. My right arm went straight out to the side and my left arm was down like normal. They they put things around my arms to make sure they didn't move. They did a few other things too while I was awake. Finally, they put the mask on me and I was out of it! I can't believe I stayed awake for that long and actually remember everything! I was awake for probably 10 minutes!

I woke up in recovery and was wide awake. Recovery is not what I expected it to look like! I also remember recovery very vividly. I woke up with oxygen and the nurse left it on me for quite a while. The only other time I've had surgery, I remember nothing from the recovery room. I remember waking up completely back in my room. But this time I was in recovery for 2 hours and was wide awake the whole time. My pain level was off the charts but they had given me all the medicine they could. They couldn't take me out of recovery until my pain was under control. I ate a whole cup of ice while I was in there! I always pictured recovery with curtain areas for each patient. This was just a huge room and the beds were side by side randomly spread out. I had fun watching the other patients who were not awake but were talking. It was entertaining! The nurse got mad at me because my pain wasn't under control after she had given me everything I could have. We think she might have been giving me pediatric doses because every time she gave me medicine, I didn't feel any different. Every other time I've had IV pain medicine, I can feel it make me heavy. I did not feel any different after several doses of what she gave me.

After a couple hours my pain was under control so I got to go back to my room! The pain came back so fast but the only medicine I could take was oral pain medicine. That meant that I would have to eat something. I started eating some crackers and got so nauseous. That did not go well!

After I was back in my room, my surgeon came to check on me! We thought that was so sweet! I was in surgery for a little over an hour I think. He said everything went as planned! They did cut off some adhesions from my liver too. He said inflammation can cause those.

We stayed at the hospital until my pain and nausea was under control. Before leaving the hospital I actually walked to the bathroom and changed into my clothes by myself! I'm not sure what time we came home but I think it was around 5 pm.

I got home and felt pretty good! Well, pretty good for just having surgery. I slept for a while when I got home and had several people visit.

I'm not allowed to go upstairs for a while so I've made my home in the recliner in the living room. Wednesday night I slept for probably a total of 2 hours.

Thursday, several people came to visit which was good! I had a pretty good day on Thursday. I've been getting up and walking a little each day to help get the air out of my shoulders and neck. My mom washed my hair in the sink so that made me feel better!

Thursday night and last night I actually slept some! But yesterday and today have been the hardest days so far. I've had problems breathing and can't seem to get the pain under control. I've tried to sleep all day but I can only stay asleep for 10 minutes at a time. It's very frustrating!

I'm trying to enjoy just being at home and doing nothing but I'm having a hard time with it. So please continue to keep me and my family in your prayers.

My friend Rebecca brought this balloon to me while I was in the hospital! I love it!

Thank you for all the prayers, encouragement, cards, food, visits, calls, and texts! We really appreciate it!!

I'm going to try to post more about non medical things in the next few days since I haven't done that in a while!

Outpatient doesn't mean easier...

The morning of surgery my nocturnal body decided to wake up at 3:50am. I didn't have to get up until 5 so I layed in bed and listened to Klove. It was so encouraging to listen to all the songs about God carrying me no matter what is going on in my life.

We left for the hospital at 5:45am. I'm still not sure why check-in takes so long..it took about an hour to get checked-in. They finally put me in my room at 7. The room was really big so my grandparents and everyone got to stay in the room too. Since we couldn't use my PICC line they had to start an IV. They had to take blood too so they had to find 2 veins. The nurse didn't have any problem finding the veins. She actually said that I have such great veins. Are you kidding me?! I started laughing because I couldn't believe she actually said that.

They took me to the holding room at 7:45. Only 2 people could come with me so my parents went. The surgeon and anaesthesiologist were waiting to talk with us. The nurse gave me something to start to relax me. I wasn't in holding for more than 10 minutes. Everything happened so fast in there. They took me to the OR right at 8. When they were taking me to the operating room, it felt like a movie. Everything was white and freezing cold. Everyone had the blue scrubs on and everyone was looking at me being wheeled past. It seemed like everything was in slow motion..I guess the relaxing medicine was starting to work. In the OR, they made me get on the table by myself. They didn't say anything to me, they just put the mask on my face and that's all I remember. The surgery lasted an hour and then I was put in recovery. I woke up after being in recovery for 45 minutes. I woke up in a ton of pain so they gave me lots of pain medicine. The pain medicine they gave me was 10 times stronger than morphine. I was still in a ton of pain though. My chest and neck hurt. It really confused me because the port was put in my chest, not my neck. They finally took me back to my room after being in recovery for an hour and a half. The gown I wore had a place to hook it up to a machine and the machine put warm air into the gown. It was the best part of surgery! It kept me so warm.

Once I was back in my room, I started hurting more. My mom said that I had a bandage on my neck too. So we asked the nurse why it was there. Apparently they had to cut my neck to get the catheter from the port into a bigger vein in the neck. I was in so much pain so the nurse finally agreed to giving me morphine. We tried to get the pain under control for a couple hours. They sent me home at 1:45pm. Since they attached the port to a muscle in my chest, it hurts every time I move or talk. The worst pain is my neck though.

When I got home, I was so nauseous from the anesthesia. Tuesday night I noticed that I was starting to get a rash on my chest. They hadn't washed the cleaning stuff off so i was covered in it. The rash kept getting worse everyday. It's all over my chest, neck, face, arms, and any where else they put the cleaner. Apparently I'm really really allergic to whatever they cleaned me with. Yesterday my chest and neck were so swollen. You can't even see my collar bones. So we went to the after hours clinic last night. They gave me a steroid shot and told me to keep taking benadyrll. After we got home the itching was out of control. I couldn't take it anymore. I was so frustrated. My mom went to a health food store at 9 last night to see if they had anything to help. She got some spray and it finally calmed the itching and pain down. I haven't been sleeping good because of the pain from surgery and the hives all over me.

Since the surgery was outpatient I thought it wouldn't be a big deal at all. I was so wrong. I'm still in a lot of pain and feel horrible. The surgery was bigger than we thought and on top of that I have hives. I don't have my appetite back either. I'm praying that the hives will go away soon and that the incisions will heal fast.

Thank you for all your prayers! Please keep praying for me to recover soon.

Surgery tomorrow

Tomorrow is surgery day. The PICC line is coming out and the port is going in! Check-in time at the hospital is 6am. The actual surgery starts at 8am. Since I had that big PICC line problem Saturday, we don't think they will be able to use the line during surgery. They thought that they could use it for IVs during surgery then take it out when I'm in recovery. But I think they will have to start an IV somewhere. That will work out well since I have horrible veins and I'm not allowed to eat or drink starting at midnight...so my veins will shrink even more from dehydration. Good luck nurses! I should use a sharpie and mark where my veins are for the nurses so that they might be easier to find.. I don't know when they'll take my PICC line out since they can't use it. I really hope I'm asleep when they take it out. It really freaks me out to think of them just pulling it out all the way from my chest! They say it doesn't hurt but still..it freaks me out.
These are comforting verses about God fighting for His children. God has everything already planned out for me. He knows about my worries even before they happen. He knows what's best for me and he is fighting for me.

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose."

Romans 8:28
'Moses answered the people, "Do not be afraid. Stand firm and you will see the deliverance the LORD will bring you today. The LORD will fight for you; you need only to be still."'

Exodus 14:13a-14
"The LORD your God, who is going before you, will fight for you, as he did for you in Egypt, before your very eyes, and in the desert. There you saw how the LORD your God carried you, as a father carries his son, all the way you went until you reached this place."

Deuteronomy 1:30-31
"your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be."

Psalm 139:16
"For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."

2 Corinthians 4:17

Let the Waters Rise by Mikeschair
Don’t know where to begin
It's like my worlds caving in
And I try but I can't control my fear
Where do I go from here

Sometimes it's so hard to pray
When You feel so far away
but I am willing to go where You want me to
God I Trust You

There's a raging sea
Right in front of me
Wants to pull me in
Bring me to my knees

So let the waters rise
If You want them to
I will follow You
I will follow You

I will swim in the deep
Cuz you’ll be next to me
You’re in the eye of the storm and the calm of the sea
Your never out of reach

God You know where I’ve been
And You were there with me then
You were faithful before You’ll be faithful again
I’m holding Your hand

There's a raging sea
Right in front of me
Wants to pull me in
Bring me to my knees

So let the waters rise
If You want them to
I will follow You
I will follow You

God Your love is enough
You will pull me through
I’m holding onto You
God Your love is enough
I will follow You
I will follow You

There's a raging sea
Right in front of me
Wants to pull me in
Bring me to my knees

So let the waters rise
If You want them to
I will follow You
I will follow You

"I thank my God every time I remember you. In all my prayers for all of you, I always pray with joy because of your partnership in the gospel from the first day until now, being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus."
Philippians 1:3-6

Here's another one of my favorite pictures from Vienna!

Surgery Tuesday!

We met with the surgeon yesterday! He was really great and it was a very simple meeting. He told us what we needed to know and then we were out of there! I like doctors like that.

I'm having a port put in and the PICC line will be taken out. The port will be placed under my collar bone and is attached to the muscle. It has a catheter that connects it to a major vein usually in the neck. Once the port is in, everything is under the skin. All you can see is a little circle sticking up under the skin. To access the port you just use a needle. When it's accessed you put a dressing over it so that it's sterile and that the needle doesn't come out. When your done with the IV or whatever your using the port for, you take the needle out and there's nothing there! So I can shower like normal! No more plastic wrap!!!!!!! The surgeon said that my parents can learn how to do it so we don't have to have a nurse come!

The surgery is this Tuesday! I have to be there at 6am...very early. But the surgery doesn't start until 8am. He said the surgery will probably take an hour. We're going to use my PICC line for the IVs during the surgery then they will take my PICC line out before I go home. Then after I'm in recovery some one will show us how to access the port and everything. Then hopefully I can go home soon!

I love this song!

He Is by Mark Schultz

"Father let the world just fade away
Let me feel Your presence in this place
Lord I've never been so weary
How I need to know You're near me
Father let the world just fade away
'Til I'm on my knees
'Til my heart can sing

He is
He was
He always will be
Even when it feels like there is no one holding me
Be still, my soul
He is

Father let Your Holy Spirit sing
Let it calm this storm inside of me
As I stand amazed
Lift my hands and say

He is
He was
He always will be
He lives
He loves
He's always with me
Even when it feels like there is no one holding me
Be still my soul

Through every fear
And every doubt
In every tear I shed
Down every road
I'm not alone
No matter where I am

He is
He was
He always will be
He lives
He loves
He's always with me
Even when it feels like there is no one holding me
Be still my soul
Be still and know
Be still my soul
He is"

"Jesus Christ is the same yesterday and today and forever." Hebrews 13:8

Great weekend!

This weekend was fall visit at Oklahoma Christian University! There were a ton of juniors and seniors from Memorial Road that went! On Friday during the day you could go to chapel, some classes, and tour the campus. I didn't go to all that though. I went to dinner at OC then we took charter buses to downtown OKC and they had a Summer Singers concert by the canal. We got ice cream and it was perfect weather! We were suppose to go to the OKC bombing memorial to have a devotional, but it started raining. So we went back to OC and had the devo there. After the devo we went to On Cue to get an icee then we went to one of our friend's dorms. My friends spent the night in the dorm, but I decided it would be better if I didn't stay the night. Saturday my friends and I went to lunch under the pavilion at the campus and heard the New Reign group sing! Then we went to Freshman Fanfare. It was a really fun weekend and it was perfect weather!

Alex and I at OC

We are meeting with the surgeon on Wednesday afternoon. They said that once we meet with him, they can usually get me into surgery really soon. I so ready for the PICC line to come out! It hurts all the time now. I think the port will be so much better!

I'm a little scared of the surgery because nothing knocks me out. I mean nothing. And I've been on some pretty strong stuff before. I'm scared that I will still be awake when they do the surgery! But the anesthesia is a lot stronger than any medicines that I've taken. It still worries me though..
"When I am afraid,
I will trust in you.
In God, whose word I praise,
in God I trust; I will not be afraid.
What can mortal man do to me?" Psalm 56:3-4
"The Lord is my light and my salvation—
so why should I be afraid?
The Lord is my fortress, protecting me from danger,
so why should I tremble?" Psalm 27:1