Wednesday, July 29, 2009

Lyme Disease Hearing

I have had a pretty good week! Last Thursday I started volunteering at the Lighthouse Medical Clinic. It's a clinic started by our church to help with inner-city families who might not receive health care. I am doing the filing for the clinic once a week for a few hours. It is a great ministry! I am really enjoying helping out there!
I've been able to get out of the house a lot lately which has been so great. I am feeling better and it's nice to be able to do some normal things in between all the shots and IVs. I'm still dealing with pain and fatigue, but I've been able to handle it for the most part. The big problem right now is me not being able to sleep. I'm up until 3 every night and some nights six. Sunday I went to church after only 2 hours of sleep. It was a rough day for me, but I'm glad I went. It's very frustrating and tiring not sleeping. Those infomercials that are on all night every night are getting really annoying... I mean seriously, who is going to buy a nose hair trimmer after watching a whole hour about it at 3 in the morning...not me! They were interesting at first, but every single night is a little too much for me!
Today there is a big Historic Hearing for Lyme Disease in Washington D.C. There are finally enough good doctors who are angry at all the doctors who don't think Lyme exsists in some states and who don't treat it properly. The hearing is to discuss treatment and how Lyme should be handled. We have been to so many doctors here that don't think Lyme exsists in Oklahoma and they aren't even open to talking about it. Most of the doctors we have called won't even take me because I have Lyme. It really is a huge political battle. Maybe this hearing will change their minds...something needs to happen.

"We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body." 2 Corinthians 4:8-10

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 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 4:16-18

Tuesday, July 21, 2009

Another ER trip...

Last week was a pretty good week. I went to visit church camp on Thursday! That was so much fun!! Saturday was a good but busy day. I went to a party for someone at church. We played lots of games outside and I did too much... I didn't sleep Saturday night so Sunday was a really hard day. I was in a lot of pain and was so exhausted. I did get to go to church so that was great! Yesterday I was able to rest so I was doing a little better.
Around midnight last night my PICC line started itching and hurting like crazy. I took some Benadryl and got to sleep at 1:30. I woke up at 2:30 because my PICC line was so much worse. It was an unbearable itch which made it hurt. I tried putting an ice pack and heating pack on it. Nothing was working. I went and got my dad at 4 and we decided to change the dressing. That seemed to make it worse. My mom got up and there was nothing else to do except to go to the hospital. We got to the hospital at 5:30 and my favorite nurses were there! The doctor gave me some steroids and something else instead of Benadryl. It seemed to help immediately. They sent me home at 6:30 this morning and I was able to go to bed. I just woke up and my nurse came to change my PICC dressing again. I started a 6 day steroid pack today so hopefully that will help.
Tomorrow I have an appointment at Children's Hospital with an infectious disease doctor. We're hoping that he will be willing to work with my doctor in Nevada. I will update tomorrow after my appointment. Thank you for all your prayers!

"For I know the plans I have for you,' declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart." Jeremiah 29:11-13

Tuesday, July 14, 2009

Home sweet home!

It is SO great to be home! Sunday was such a wonderful day. Missions Sunday is probably my favorite day at church!!!
I am still doing IV fluids at home every other day or everyday. All my medicines and shots haven't arrived in the mail yet so obviously I can't do sad. ha not! They can take as long as they want to get here!! It is nice to have a break from having a schedule full of medicines and shots.
Yesterday my home nurse came to change my PICC line dressing. Every time she comes we fill out a bunch of paperwork and she takes my vitals. For some reason my blood pressure has been super low for a month or two and my heart rate is always really high. Dressing change day is the best day of the week! Yes it hurts some, but when she cleans it, she is scratching it for you and it feels so good! My skin gets really irritated from having a dressing on it all the time so it always itches like crazy!!! I always ask her to clean it extra good so that she scratches it more...ha!
So yesterday afternoon I started getting a horrible rash around my PICC line. It started itching even more (which I didn't think was possible). I took some Benadryl and that did nothing. I figured out that now I am allergic to the stat-lock, which is what keeps the PICC line from coming out. By last night, there were blisters starting to form and it was a little swollen. I kept an icepack on it for a while. At midnight I couldn't take it anymore. It was hurting and itching so bad. Our only choices were to go to the ER or for me to change the dressing and put some itching cream on it. We were not going to the ER so, I got all geared up with a mask and gloves and started taking off the plastic dressing. I cleaned it with Iodine and then apparently alcohol. I didn't realize that it was straight alcohol until it got in all the blisters. At that point I wanted to scream. Never ever ever again will I do that. I put a new dressing and some cream on the blisters and rash.
I woke up this morning and it has gotten worse. It looks pretty nasty. I won't show you pictures this thankful!
On Thursday I am going to visit church camp since all my friends are there this week! I'm really excited!! It's weird not being at camp. I will try and put up some pictures soon!

Thursday, July 9, 2009

Coming home tomorrow!!!!

I'm coming home tomorrow!!!

We met with the doctor yesterday. He wanted me to stay longer, but we just can't. He gave me some natural sleep medicine to try because I am not sleeping well at all. Two nights ago I was up until 6am and last night I was up until 3:30. That is crazy!! He said the medicine could take a week or two to start working.

Last night was my last bad push! Tonight I am getting the lowest dose so I can pack. The clinic is full with people from everywhere! There are people from Brazil, Canada, Mexico, New Zealand, Kansas, Virgina, Texas, North Carolina, California, and lots of other places. It's really interesting to have people from all over the world here!

This morning I had more skin testing for my food allergy shots. They gave me 10 shots in my lower arm to see if I would have a reaction to them. They made sure I had the right level of medicine and now I have to do more testing with the shots. I do a shot every 30 minutes and I have to watch for a reaction again. Once I'm done testing all 10 shots, then they send me the real shots. I have to do those shots 3 times a day at meals. I will have to give those to myself since I won't always be at home for every meal.

I just finished my IV for circulation and I got another bag of fluids. I have to wait an hour until I can get my shots.

Outside in the back of the clinic there is a really pretty fountain and a putting green and maze. If your good they will let you take your IV outside and walk around. It is so nice to go outside and get out of the blizzard temperature of the clinic...

Thank you for all of your prayers!

"I always thank my God as I remember you in my prayers, because I hear about your faith in the Lord Jesus and your love for all the saints. I pray that you may be active in sharing your faith, so that you will have a full understanding of every good thing we have in Christ. Your love has given me great joy and encouragement, because you, brother, have refreshed the hearts of the saints." Philemon 1:4-7

Wednesday, July 8, 2009

Friday is the day!!!!!

I am coming home Friday!! I will have been gone a month! I am so excited to come home!!!!

Yesterday I had my weekly blood work done. I also had a thyroid test. Hopefully we will get those results soon! Last night was a really bad push. I got so cold and shook for a couple hours and was so nauseous. My head hurt so bad. I had to be in the pitch dark because the light seemed so bright. After about 2 hours of horrible pain I took some Tylenol. I was so out of it for several hours. I finally was able to eat something around 8. At 10 I took my pain medicine because I had let the push going on for about 6 hours. It finally started to help and I got to sleep around 3.

I had a dark field today. That is where they look at my blood under the microscope. The Lyme is back out of my blood!! Praise God! My body is all messed up though because they found out that I have some virus. So they are going to check me tomorrow to see if it's gone. Tomorrow we have our last appointment with the doctor. When we are home, we will have a telephone conference every week or two.

Today I feel a lot better! I got a bag of fluids along with the regular IV. Everyday I get SGA in my IV. That is an adrenal booster. I also get the arthritis push everyday that helps with pain.

Here I am getting the push shot in my vein today

I just came out of the worst push that I have had. The push hit so fast, so I got in an extremely hot bath to try and calm the shaking and help the pain. I had to turn all the lights off because I was so sensitive to light. During the push tonight, I was shaking and couldn't breathe at all. I started hyperventilating and crying; it was so scary. The push can make it feel like your chest in closing in. Also, the virus that we found out that I have could have been in my chest and lungs causing the push to attack it and bring it out. We called the doctor immediately and told him what was going on. He said for me to breathe into a paper bag and take some Tylenol. It took me a long time to calm down. The pain all over was almost unbearable so I took another bath then took my pain medicine. I didn't let the push run for the full 6 hours this time. I just couldn't handle it. I'm finally feeling better now. Only 2 more pushes to go!

This song is beautiful and has such a great message.

Go Light Your World by Chris Tomlin

"There is a candle in every soul
Some brightly burning, some dark and cold
There is a Spirit who brings a fire
Ignites a candle and makes His home

So carry your candle, run to the darkness
Seek out the helpless, confused and torn
Hold out your candle for all to see it
Take your candle, and go light your world
Take your candle, and go light your world

Frustrated brother, see how he's tried to
Light his own candle some other way
See now your sister, she's been robbed and lied to
Still holds a candle without a flame

So Carry your candle, run to the darkness
Seek out the lonely, the tired and worn
Hold out your candle for all to see it
Take your candle, and go light your world
Take your candle, and go light your world

Cause We are a family whose hearts are blazing
So let's raise our candles and light up the sky
Praying to our Father, in the name of Jesus
Make us a beacon in darkest times

So Carry your candle, run to the darkness
Seek out the helpless, deceived and poor
Hold out your candle for all to see it
Take your candle, and go light your world

Carry your candle, run to the darkness
Seek out the hopeless, confused and torn
Hold out your candle for all to see it
Take your candle, and go light your world
Take your candle, and go light your world
Take your candle, and go light your world"

"You are the light of the world. A city on a hill cannot be hidden. Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. In the same way, let your light shine before men, that they may see your good deeds and praise your Father in heaven." Matthew 5:14-16

Sunday, July 5, 2009

4th of July Weekend

We had a crazy but good weekend! My aunt got here Friday so we headed to Lake Tahoe. We went to the North Shore and it was great weather! Yesterday we went back to Tahoe. On the way there, someone was switching lanes and didn't see us. They hit the front left of our car then drove away. So we stopped and got out to see if there was damage and there wasn't a scratch on the car!! That was pretty scary, but thankfully no one was hurt. We then went to South Tahoe. We drove around all day and decided to stay for the fireworks! The fireworks were over the lake so we found a great beach to watch them from. It was a full moon over the mountains and lake; it was so gorgeous.

This morning we went to church. After church we decided to go see a movie at the outdoor mall here. When we were pulling into the parking spot someone didn't see us and hit us again in the exact same spot. What in the world is going on?! Two days in a row we get hit. There was damage this time. We exchanged information and waited around for a while. We are finally safe at home.

This week is going to be a really hard week. I have some hard treatments to do so that I can hopefully go home Friday! The doctor will
let us know early this week if I can go home...I am praying that I can go home. This will be my fourth straight week of treatments. I am SO SO SO ready to be home.

These are pictures from the weekend at Tahoe

Thursday, July 2, 2009

3 Weeks Down!

"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light." Matthew 11:28-30

Today was a pretty good day! This morning I had an IV that helps with circulation. Then we had an appointment with the doctor. He said that my weekly blood work showed that I am really dehydrated, so I got a bag of fluids. He also said that if my migraine doesn't go away I will have to have a bunch of shots in my head. I'm having thyroid tests run too. I've been having some weird side effects to the treatments. I have had mouth and throat sores that are really painful and I have been bruising easily. I'm praying that won't last long.

We are planning on coming home next Friday the 10th. Hopefully the doctor will let me go home.

We are going to Lake Tahoe tomorrow and Saturday! They have fireworks at the lake on Saturday!

This is Dewey, Morgan, and me hanging out at the clinic! They were here in December and January too!

Wednesday, July 1, 2009

Yesterday I decided to get a half dose of the push. I didn't have a reaction. Last night we were able to just rest and watch TV. We had a great dinner from Whole Foods! That is the best store in the world. Why don't we have one in Edmond?!?! For those of you who don't know what Whole Foods is, I'll explain. It's an all organic and natural grocery store along with a take out bar
with fresh soups and meals. It is all SO good and it's fun to see what all they there! I could eat there everyday.

I have had a migraine for a couple days now and it got worse today. I decided not to get the push today since I already have a migraine. They gave me a headache push instead. I'm not sure what that is... it's suppose to get rid of headaches.

Tomorrow is our last day at the clinic this week. They close on Friday for the 4th. We have an appointment with the doctor tomorrow too.

"How great is the love the Father has lavished on us, that we should be called children of God! And that is what we are! The reason the world does not know us is that it did not know him. Dear friends, now we are children of God, and what we will be has not yet been made known. But we know that when he appears, we shall be like him, for we shall see him as he is. Everyone who has this hope in him purifies himself, just as he is pure." 1 John 3:1-3