200th Post! and random things

This is my 200th post! Woohoo! Thank you for continuing to read and support me!!

This week has been good. Yesterday and Wednesday I got to spend the day with my friend while she gets treatment at the hospital. We've just watched tv and played words with friend. It's been fun!!

Tuesday I received a package from Vienna, Austria! We have friends that moved there and they sent me the sweetest thing. They made me a necklace with the Lyme disease awareness color, lime green. I cannot believe they made this! It is gorgeous!! I also got a card made by their sweet kids. They said that while they made the necklace, they prayed for me. How cool is that?! I love it!

Today it has been raining and storming. It has been so dark all day! My poor dog has been in the laundry room all day and won't come out. It's quite funny, I mean sad.

Have any of you watched the new series the Event? It's very difficult to explain, but part of it reminds us of what is happening with Lyme disease. In the show, this group of people has a disease that the CDC doesn't know how to treat. So what do they do? They lie to the public and don't acknowledge it. They try to hide it so that they don't have to deal with it. Well there are a couple of people who are trying to expose the truth to the public, but the government is trying to kill them so the truth doesn't get out! Kinda sounds like Lyme...doctors are having their licenses taken away if they treat Lyme. Lyme advocates are being threatened and being called liers. It's just very strange that this show is happening while the same type of thing is happening in real life. The show is very good though!!

I spent my weekend building a ziggurat

Jealous? I thought so! My brother has several projects due next week so we decided to do one! Of course he picked the hands on projects from the list so we had to build a ziggurat. They went to Hobby Lobby (what would we do without that place?) and got the supplies and we started building a ziggurat. Thank goodness for the internet pictures to help us, because I don't know if you've noticed but there aren't too many ziggurats here in Oklahoma to model ours after. We cut and put together styrofoam (who knew that's how you spell styrofoam. I didn't...). Then, we created lines to look like blocks. Next, we painted it and who knew that painted styrofoam actually can look like mud! Amazing! Then we added details and finally finished today! I have to say it looks pretty amazing! So, whenever if you ever need to build a ziggurat in your life, you can call us to help! Business is pretty busy though so you might want to call several years in advance. Probably 3.2 years in advance. Thanks for understanding.

Last Friday I walked down the street! That was pretty exciting!! Then, I got to go for a car ride with my mom!

I'm doing well! Last week I started sleeping upstairs again but this weekend I moved back downstairs because I was having some bad nausea problems. I think tonight I'm going to try to sleep upstairs again! I still haven't gone anywhere but I have an appointment with the surgeon on Wednesday! I'm excited to get to go somewhere and see what he says!! I still have tape over 3 of my 4 incisions but it is beginning to come off! It's weird because the stitches are poking through on a couple of the incisions. The stitches are inside but for some reason are coming through! It's very odd!!

This is my dog Tucker! I don't think I've ever put pictures of him on here before so here you go! He loves to think that he owns the world but we all know that it's only a dream of his.

Here is my card board testimony that I talked about in one of my posts!

This is the front...

And this is the back!

Last week there were several beautiful sunsets! This one had such vibrant colors!! I didn't edit this picture at all.

Where I spend a lot of time

I thought I would show you where I spend a lot of my time. My room. I've spent weeks up here bedridden. I've spent lots of hours hooked up to IVs in there. But while I've been on IVs or bedridden I've also had lots of fun times in my room playing games and watching movies or tv with people who come to visit me! I love my room!!!! It's so cheerful!

My room is upstairs which I like! Climbing the stairs is sometimes quite a challenge but I like being upstairs. This is what you see when you first walk in the door.

My room is pretty big and a great shape!

As you can see, it is a tropical theme! I love the beach so much!!

At Christmas time, and sometimes other times, I will come home to find that there are Christmas lights on my palm tree. I will give you one guess as to who does that.

If you guessed my brother you are correct!

My window seat!

There are some cards that my brother put above my bed when I was at the medical center in Nevada one time! These are like 1/12th of the cards I have gotten. I love reading them!!

I forgot to take a picture of my karaoke machine but I think you know what that looks like! I used to do musicals and voice lessons so I have used that a lot!!

Rambling about nothing

I am so ready for all my favorite shows to begin again. When I don't feel good all I can do is watch tv, and let me tell ya, there is nothing on in the summer.

School starts in two weeks. What does that mean for me? Nothing really. Except that all my friends will be starting their senior year.

I would be starting my senior year in high school too, but thanks to Lyme Disease I'm not going to school anymore.

I haven't been to school in a year and a half. I miss it. A lot.

Instead, my days are filled with IVs, medicine schedules, shot schedules, and way too much fun. I would definitely go to school over that.

Also with school starting, that means that for several days a week it will just be me, myself, and I at home.

Oh and my dog. But he is unconscious all day until I get out the food. Then he miraculously comes alive.

He also comes alive when there is another dog within 200 feet of our house and suddenly becomes our "tough guard dog". How he senses a dog while he's unconscious I'll never know.

Also, why are there so many people who walk their dogs all day during the school year. Shouldn't they be at work?

Oh and my mom will be home with me some days.

I am officially obsessed with Mystery Diagnosis and Untold Stories of the ER and shows like that. They are a little dramatic though. Like when a patient comes to the ER with a pulse above 100 bpm and they tell them they are going to die and they shock them to restart their heart. Uhh my pulse is 100 bpm on a good day.

They also yell to someone to grab the crash cart because the patient is crashing when their blood pressure is 90/50. That is my blood pressure on a good day. I get so excited if my blood pressure is that high!

It's weird to watch those shows and see that symptoms that send people to the ER in a panic, are just things I have to deal with on a daily basis now. When you're seriously sick, you have to change your concept of a real emergency or you would be in the ER every single day.

Well that's all I have for today. I hope you're having a great week!

Excersie daily- walk with the Lord

I have this book called Faith Notes that has some pretty funny notes to give to people. I thought I would share with you! Some are so cheesy which is why I love them! I'm sure you've heard some of these before.

Don't bee afraid honey, God is with you

Can't sleep? Don't count sheep, talk to the Shepherd!

Practice random acts of praise

Life is fragile- handle with prayer

If God had a wallet, your picture would be in it

Don't fear the future- God's already there

Feeling down? Just look up

Upload prayer, download peace

God's promises are like the stars; the darker the night, the brighter they shine

I can do all things through prayer, and coffee

No Jesus, No peace. Know Jesus, Know peace

Fight truth decay- Brush up on your daily Bible

Awareness Necklace and random things

This will be a really random post because I just have a lot to talk about!

I've wanted to get some kind of awareness jewelry for a while and I decided to go to Hobby Lobby to see what I could find! I found a charm that says hope and an awareness ribbon charm. Lyme disease awareness color is a light green color so I put a couple beads with the charms! Now I have an awareness necklace!!

Here is one of the nastiest things I have ever tasted. Today I started this ultra meal stuff. It did not go well. First of all, why does it have such problem dissolving in water which makes it lumpy? Gross. As I tried to drink it, I started gagging and almost threw up several times. I plugged my nose and 20 minutes later had drank about 3/4 of it. By then I had had enough. I was full and it was disgusting. A few minutes after I was done drinking it, my stomach started hurting so bad and I felt horrible. I don't know what the problem is.

I've been feeling okay lately. Still not sleeping well.

My friends get out of school this week which is so exciting!!

Last night was the last Thirst Bible study. We went to someone's house and spread out along the property and spent an hour alone. Almost everyone I talked to said how fast it went! We practiced the disciplines we have learned or whatever else we wanted to. I will really miss the Bible study!

Three weeks from today my family and I will be on the way to Brazil!!! I'm so excited!

I'm planning on going to church camp and the mission trip this summer! It will be so much fun!

My medicines still haven't come in the mail yet from Nevada...aww how sad! :) I'm really enjoying the break! But I know I need to be on them.

As I was filling out paperwork for camp, there was a medical form of course. It just makes me laugh trying to fill that out! It gives you 2 lines to list the medications you are on. Good one! How about I list the medicines I'm not on!

This week I'm just hanging out with friends everyday! It's wonderful!

"Sing praises to God, sing praises; sing praises to our King, sing praises" Psalm 47:6

What Am I Doing?

I gave into temptations and got a Twitter. If you don't know what that is, it's just a page where I can update with short phrases about what I am doing or my thoughts. You can see my updates on the right side of my blog under the about me section. My actual page is http://twitter.com/InBetterHands33. In Nevada, I will be updating that a lot so you can keep up with what treatments and different things I am doing. I will also update it in Brazil so you can see what we are doing there! I think this will be a good way to let you know more specifically what I do during treatments. I hope this is helpful!

Dear construction workers,

We are not friends anymore. Now that you live across the street from me, I just wanted to tell you whats going on between you and I. We have been spending too much time together and I've decided that it's just not going to work out.

I am sending you my resume because I think know that I can move around dirt faster than you.

Also, I would appreciate if you would go green like the rest of the world, and not use machines that use so much fuel break my ear drums.

I do not approve of your 6am - 6pm dirt moving party. I repeat, I do not approve. I did not invite the deep rumbling noises you cause to my party of nausea and sensitivity to noise. I already have too many fun side effects from me, myself, and I.

I ask that you stop your dirt moving parties now.

Thanks for not going green,

Victoria

Youtube video and an update

I finally put my video on Youtube! It should be easier to look at now. I put it above the latest post.

YouTube - Victoria Wilguess' Story of Chronic Lyme Disease and hope of a cure

This weekend we did nothing because of the snow and ice storm. I thought the world was coming to an end. Before it came the stores were out of everything and everyone was preparing to be stuck in their houses for the rest of the winter. We survived thought! This weekend I read Same Kind Of Different As Me. It was a very good book! Sad, but good.

Yesterday we only had one church service at 3pm! It was great to be worshiping all together in one service.
Last night the youth group went to the Thunder game! We had a great time!!

I haven't had any doctor's appointments which is great! But this week starts again with at least 2 appointments a week.
I'm hurting a lot today because I haven't done an IV since Thursday. I really didn't want to do an IV Saturday so I didn't. I'm tired of being held hostage by an IV machine. I also hate having my port accessed. I mean, would you like to have a one inch needle stuck in your CHEST every other day? Yeah me neither. But I don't have a choice. So I'm doing an IV today and probably tomorrow. I could leave my port accessed all the time so I don't have to access it every time but it's really hard to get used to having a needle and a tube in your chest all the time... I'm scared of pulling it out in my sleep. And it can't get wet which means I couldn't shower. I will probably leave it accessed until tomorrow night though.

The funeral for Tacy's grandma is Wednesday morning. My parents and I are going to Tipton for the funeral. Please keep them in your prayers.

our backyard

Look how pretty those red birds are!

"We do not want you to be uninformed, brothers, about the hardships we suffered in the province of Asia. We were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many." 2 Corinthians 1:8-11

Live laugh love

Yesterday was a really good day even though I felt horrible! On Saturday night I got about 30 or 45 minutes of sleep...I went to church not knowing if I should be there since I felt so bad. But I was so glad to be there!! Worship was great and we talked about what to do when life gets your attention. I actually did a lot yesterday which was exciting.

Today we took the Duttons to the airport so they can go back home to Brazil. My parents even checked Landon out of school so he could come too!

Laura and I at church yesterday! Haha notice Allen in the back... and yes we did plan to match. Seriously.

Our friendship bracelets that say live laugh love.

We are going to miss their family a lot!

The faithful one

My appointment with the pain management team went good. I really didn't want to go because I'm tired of appointments. Having to catch up every single doctor every single time is tiring.

I went up on the dose of Amitriptiline to 150mg every night. They said this is the highest I can go unless I really need to go up more but then I can only go up to 200mg.

I told them that I've been having a lot more migraines lately and they reminded me how unique this disease is. Everyday it attacks different parts of you. It changes constantly and there is no possible way to know what I will feel like. It also changes in the middle of the day.

Yesterday when I woke up to go to church I was so jittery and felt so spastic. During church I just crashed. I don't know why, that's just how my body reacted that day.

I've been able to babysit for our missionaries from Brazil. It's been great! On Saturday our campaign that went to Brazil in 2007 got together which was so much fun!

Robbin Dutton (Missionary from Brazil) has Lyme and MS. A few years ago my mom went with her to Nevada while she was being treated at the clinic there because your too sick to go alone. Robbin is doing great and only has to go to the clinic every couple years I think. That is how we got connected with the clinic in Reno. There is something called muscle testing which shows if your body is allergic to something at that time. Everyday is different. Look muscle testing up. It's really cool! Robbin has been testing me on things we clean with, wash clothes with, my medicines, and everything I use. We found out I'm allergic to every soap we use and the shampoo I use and tons of other stuff. She said that when we find products I'm not allergic to, it will make such a different. My body is so sensitive to smells and everything.

This weekend my youth group and I are going to something called Winterfest in Arlington, Texas. It's a program that has 4000-5000 teens worshiping together and doing various things. It is one of the best trips that we take. They bring in speakers, college performing groups, and have some amazing testimonies. I am going and am praying that I will be okay. Please pray that I can make it all weekend.

Thursday I'm going to another new doctor that specializes in thyroids and adrenal glands. He will probably run lots of tests and everything.

This song is called Faithful One by Selah

"I find no hope within to call my own
For I am frail of heart, my strength is gone
But deep within my soul is rising up a song
Here in the comfort of the faithful one

I walk a narrow road through valleys deep
In search of higher ground, on mountains steep
And though with feet unsure, I still keep pressing on.
For I am guided by the faithful one.

Faithful, faithful to the end,
My true and precious friend,
You have been faithful,
Faithful, so faithful to me

I see your wounded hands, I touch your side
With thorns upon your brow you bled and died
But there's an empty tomb, a love for all who come
And give their hearts to you, the faithful one.

Faithful, faithful to the end,
My true and precious friend,
You have been faithful,
Faithful, so faithful to me

And when the day is dawned and when the race is run
I will bow down before God's only Son
And I will lift my hands in praise for all you've done
And I will worship you, my faithful one"

"The sun'll come out tomorrow so you gotta hang on till tomorrow, they'll be sun!" ...probably not though

It has been a long week! Last weekend I was really sick from the antibiotics. I haven't had another dose and we're waiting to see what the doctor wants to do. Ever since I've been really sick I randomly get a rash on arms. It comes and goes all the time. We asked the doctor about it and she said that I probably have the hands, foot, and mouth disease still in my system from when I had it when I was a kid. I thought it was weird that I could still have that virus in my body. I still have a different kind of rash on my back. We're not sure what it is from but it's been there for 3 or 4 weeks. My muscles have been twitching a lot which is a little annoying.
I also started steroids last week. I absolutely hate them. They make me feel weird and I don't feel like myself.

I haven't left my house at all this week..which makes everyday go by so slow. Plus it's been raining non-stop for a while. I'm ready for the sun to come out! Earlier this week my brother was home with a stomach bug. Apparently there are tons of viruses going around... swine flu, strep, stomach bugs, and everything else.

I've done a lot of my school work this week! I've been doing 2-3 lessons a day which is so much better than when I did 2 lessons a week. I really need more motivation though.

In the youth group at church we have a leadership team. Tomorrow night until Saturday we're having a retreat to brainstorm and figure out how to organize events for the youth group and how to get everyone involved. Usually the retreat is somewhere else but this year it is just at church. I'm so glad that we aren't actually going somewhere far away so that I can go! I'm trying to rest as much as I can and do a lot of IVs so that I can make it through the retreat. I'm really excited! It will be SO great to get out of the house and go somewhere that doesn't involve the hospital or doctors.

"Whenever the rainbow appears in the clouds, I will see it and remember the everlasting covenant between God and all living creatures of every kind on the earth." Genesis 9:16
"The LORD watches over you—
the LORD is your shade at your right hand;
the sun will not harm you by day,
nor the moon by night.
The LORD will keep you from all harm—
he will watch over your life;
the LORD will watch over your coming and going
both now and forevermore."
Psalm 121:5-8

I haven't uploaded any pictures lately so here are some from our trip to Europe last fall! These are some of my favorite pictures from Vienna! It is such a beautiful place!

I hope you have a great weekend!

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