Things to do while getting IVs!

Yesterday I finally got my IV supplies delivered! The last time I had my port accessed was when I was in the hospital for gallbladder problems a week before my surgery. Usually I do IVs 3 times a week but I haven't done any since my surgery. I just didn't want the IV fluid to come spilling out of my incisions because that happens a lot you know. Just kidding, I just kept forgetting to order them. You have to flush the port often to make sure it doesn't get a blood clot. So my mom accessed my port yesterday and I did an IV! I left the needle in my port overnight so that I could do another IV tonight. The IV can take anywhere from 2 to 4 hours. It just depends!

Of course you have to make IV time fun! Here are some things you can do...

You can...leave the IV pole and machine in the living room and just carry the bag while you take medicine!

You can...again leave the pole in the living room because it doesn't roll very well and just hang it on the cabinet door handles over the oven or refrigerator while you cook up a delicious treat.

I mean, who doesn't hang an IV bag there?

You can... play wii with your brother! But you have to be very careful not to rip your IV out while doing intense moves. That would not be good and would guarantee a field trip to see my nurse friends at the hospital.
Notice Squirt (my IV pole obviously) on the left. They shortened the length of the IV tubing so I had to be extra careful and stay close to Squirt.

haha look at Landon's face


You can...take a stroll to the mail box and watch the faces of the people driving by. Then you wave and smile and wonder why they have that weird look on their face. Oh maybe it's because I'm hooked up to an IV...at my house.
You can... have your family bring you anything that you want because it's "too hard" to get things for yourself while hooked up to an IV machine. Make sure and really take advantage of this one!
You can...try to hypnotize yourself by watching the IV slowly drip...
You can...try to beat your record on how fast you can get to the bathroom with your IV pole and machine. Let me tell ya, it's not easy. Those rugs get in the way!
See, IV time doesn't have to be completely boring! I'm sure I'll come up with new things to do! Let me know if you have more ideas!

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!!

Mission's Sunday! and a few random things

Last Sunday was Mission's Sunday at church. I've heard that it was a great time of worship! It is always one of my favorite days at church. We raise a big contribution for mission work around the world and this year we exceeded our goal! On Mission's Sunday we have one big worship in the morning, lunch at church after, church at night where the amount is announced, and dessert before dinner after church! During the morning service, there is always special videos about the mission work going on, and we bring in missionaries or have them on Skype! It is always such a wonderful day! Sadly, I was in the hospital and missed almost everything. I got to be there for the last 20 minutes of the morning service. I didn't get to go to the evening worship because I was a little drugged and worn out from the hospital. I probably shouldn't have gone straight from the hospital to church either, but I really wanted to be there!

My friends and I matched that day and didn't even plan it! It was very strange! Of course we had to take a picture!! I was so glad I got to see them, even if I was a little drugged coming straight from the hospital...

Me, Alex, Miriam, and Kailey!

Tomorrow, the 11th and 12th grades from church are leaving for Memphis, Tennessee for their mission trip. I was planning on going but I just decided yesterday that I can't do that. I have had a bad few days and I don't feel well at all. I really need to do IVs to help with the pain and everything, but of course walgreens option care is closed on the weekends and won't deliver my supplies. Uhh hello, don't you understand that diseases DON'T take the weekend off?! So I've taken about 532 baths today to help with the pain and feverish feeling. It is not very fun. Almost all my friends are going on the mission trip and they will be gone for a week...it really stinks not being able to go. But I can't, so I will just have an IV party all week without them!

Psalm 23 and update

There is not much to report. Just the normal stuff. Over the weekend I starting eating more. That morphine really took me down. I started back on all my medicines and shots. I'm still doing IVs at home too. Yesterday I had a bad reaction to the medicines. It's good to have a reaction cause it means the medicines are working, but you have to make sure it doesn't get too bad. I had a horrible migraine and eye twitching that made the room shake. I've never had the eye twitching so that was weird! I have not been doing too much because I'm still weak. I've just been relaxing at home.

I did get to go to the Bible study this week! I love it so much!! We have done a few things since I have posted. One this is called examine. You think back on your day. You look back and see where God would push the pause button to tell you something. That is hard to think about actually. Then you think about how you handled different things through out your day. This is such a good exercise. You are supposed to write all the examine in your journal.

I don't remember what the one we did Monday is called. For that one, you read a scripture or scriptures at least 3 times out loud. You notice what phrase God wants you to focus on. After you have your phrase, that is what you repeat all day. It should be what you focus on all day long. On Monday, Phil read Psalm 23 to us.

After a while to reflect, we had a time of quietness where anyone could share the phrase that they felt God was showing them.

Every week we end with a prayer that is open to anyone. There is lots of silence during the prayer. But at any time, anyone can say anything to God. Usually it is a thanks, asking God to help them in specific areas in their life, or requests for others. Everyone that I talk to says this is one of their favorite parts of the Bible study. You get to hear what God is doing in people's lives. It's so honest. You get to hear what people specifically need to work on in their lives. A lot of people use scripture in their prayer. For example, like in Psalm 23 it says "He restores my soul". So during the prayer people would say "Lord please restore my soul".

I love that kind of prayer. It's so encouraging to be a part of that.

"The LORD is my shepherd, I shall not be in want.
He makes me lie down in green pastures,
he leads me beside quiet waters,

he restores my soul.
He guides me in paths of righteousness
for his name's sake.

Even though I walk
through the valley of the shadow of death,
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.

You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.

Surely goodness and love will follow me
all the days of my life,
and I will dwell in the house of the LORD"

Psalm 23

Spring break does not include a break from medical things.

This is the Bible I got! I love it!!

Thursday afternoon I got my hair cut. I was really tired but I went anyway. After my hair cut I went to my grandparents house to show them a video. By the time I got home I felt horrible. I hurt so bad and was more exhausted than normal. I took my temperature and I had fever. Awesome. I was also nauseous all day so I'm didn't eat much. Friday morning I woke up feeling the same way. I did okay all day until around four or five. We had people over for dinner that night and it was more than I could handle. My parents asked if I still wanted them to come over and said yes because I really wanted them to come! By the time they came I really didn't feel good. When it was time to eat my mom handed me my plate but I shook my head saying that I couldn't eat. She said I needed to eat. I broke down because I felt so bad so she gave me nausea medicine and pain medicine.

Saturday I did nothing at all. I layed on the couch all day.

Sunday I almost didn't go to church but I knew I should at least try. So I went and it was good! Ever since Sunday I have had muscle cramps all over. That never happens to me but it is not fun!

Yesterday I did an IV and rested. We called my heart doctor and asked if it was time to get rid of my heart monitor. So now I am free from the heart monitor!!!! They said it will take a few weeks to get the results.

My mom talked to my Nevada doctor yesterday. He thought that the strength of the beta blocker I'm on seems a little high to start with. Since beta blockers are also used for lowering blood pressures too, he wants us to check my blood pressure at least everyday. My blood pressure is already so low so he wants to make sure it's not lowering it.

He told us that the Lyme effects the heart sometimes by messing with the electrical system of the heart.

We told him that my pain and concentration have been getting worse. The pain is probably caused by two things. I could have a current Lyme infection that is causing all the pain or the Lyme has done damage to my joints. It could be and probably is a little of both. I'm starting on an arthritis medicine that helps with joint damage. I'm also starting more medicine to kill the bacteria. I am starting a natural concentration medicine too.

He decided to switch my pain medicine since I have been using it off and on for a long time. He is giving me an extended release medicine that is used for people that need something for long term pain. He thinks this will be better for me so that it lasts longer than what I had.

I have been feeling so tired and out of it ever since I started the beta blocker. I know it's the side effects but it's so annoying! I feel the same as when I was on steroids for a few months. I don't feel like myself and sometimes I feel like I'm going crazy!! It's hard to explain what it's like. But if my blood pressure is stable, I have to stay on the beta blocker. With every medicine I'm on, it's hard to see if the side effects are worth staying on the medicine. But I have no choice on this one! Hopefully I'll get used to it..

Laughter is the Best Medicine

I'm finally getting over this upper respiratory infection! I had a really hard night last night though. The pain was worse than normal. My joints hurt so bad. Right now the worst pain is in my knees and elbows. Last night nothing was helping the pain. I took my pain medicine which usually relieves the pain some. It didn't do anything last night. I read until about 2am then it went downhill from there. I was hurting so much and just wanted to go to sleep. At 4:45 I took another bath to help the pain. It was the fourth bath that night. I finally fell asleep at 5:30 but still woke up a lot. It was such a long night.

Right now I'm doing an IV and later I'm doing a homeopathic pain medicine through my PICC line called an arthritis push.

These are some funny things about everyday life with Lyme. You have to learn to laugh at all the silly things that come along with being sick.

"You Might Have Lyme if...

-You know what LLMD (Lyme Literate Medical Doctor) means, and you have one.

- At an appointment with your LLMD the nurse has asked why you are "all dressed up" when you wore sweat pants without holes in them instead of PJs to your appointment.

- Showering is a two hour process with a three hour recovery period.

-Some days are "shower-optional".

-The happiest day of your life was the one when you were diagnosed with Lyme.

-When you were diagnosed with Lyme you cried, shouted, or hugged your LLMD (which was slightly awkward for both of you).

-They know you by name at your local ER.

-You have more pills in your closet than a drug dealer.

-Your pain management specialist has informed you that your regiment of painkillers should be enough to tranquilize a horse, but they have little to no effect on you.

-You can't sleep even though you're always exhausted. See above for horse tranquilizer dilemma.

- The list of foods you CAN'T eat is longer than the list of foods you can.

-Your BMI is so low that you legally couldn't be a runway model in approximately ten countries.

-You have mysterious bruises, despite spending the majority of your day in bed.

-You (or your mom, dad, or caretaker) has come thisclose to having a fist-fight with a nurse or doctor who wasn't being sensitive enough to your needs.

-You bribe your home nurses with candy so they'll show up on time and keep the poking to a minimum.

- You cry if you have to go away for the night and realize when you get there that you forgot to pack the Glad Press 'n Seal wrap. (for showering with the PICC line)

-You have a PICC line, and were initially paranoid about keeping it sterile when the doctor who put it in told you a bunch of horror stories about sepsis, but now you don't even usually remember to cover in in public.

-You are totally un-phased by people staring at you in public. You suspect it might be due to your wheelchair, PICC line, Michael Jackson style surgical mask or something, but who really knows?

-You laugh when you and another Lyme friend simultaneously have to go to the ER, and swap amusing stories when you get back.

-Your favorite day of the week is "dressing change day" and you (politely) demand that your nurse scratch your arm with gauze for as long as possible.

-You can't watch commercials because of the sudden changes in light and noise, and you think that sort of thing should probably be illegal.

- Your friends no longer think its odd for you to randomly burst out laughing and/or sobbing.

-You've also devised tricks to scam your insurance company to pay for rejected medications.

-Your LLMD is programmed in your phone and under recent calls all too often.

- Your nurse gives you her personal cell number, and calls you just to chit chat.

-You look forward to having wheel chair races with the next person up to the challenge!

-Your sister goes to get her picture taken and someone says “say cheese” but she says “ LYME DISEASE!” instead.

- You could probably draw your own blood. And instruct the nurses which vein to use.

-When you can read your blood work better than your PCP, nurses, and most medical students.

-Going to the doctor is considered an outing.

-You are able to diagnose other Lyme patients before 20 specialists can.

Add LOTS more, everyone! Every case of Lyme is different, some are more severe than others, but I hope we can all have a giggle about its quirks while we're working to get well. We can beat this! Hope this puts a smile on your face!"

"He will once again fill your mouth with laughter
and your lips with shouts of joy." Job 8:21

Hard Week

The doctor finally called us back and said I have a virus. I've been feeling really bad and couldn't even go to church Wednesday night. It's going to take a while to recover. So I've been doing IV fluids and breathing treatments every 2 hours. I have a rash all over my back and we're not sure why. It doesn't itch or anything, it's just there.

Several people have been asking about my PICC line (peripherally inserted central catheter) and IVs at home so here's some pictures and details. The PICC line goes all the way from my arm to my heart through a vein. One PICC line can stay in up to a year if it is well taken care of. Most people have theirs 4-6 months. It can't get wet at all, which makes showering very difficult. When I get the PICC line out it will be great to shower again without having to wrap my arm in plastic wrap and tape and hold it above my head.

I can start the IVs and everything by myself, which is great. Not very many people get to become nurses at the age 16..try not to be jealous. Ok, real nurses do a whole lot more than I do.

Everyday I have to flush it with saline and heparin. An IV takes about 3 hours. Sometimes I do 2 IVs back to back so that's 6 hours. It's great fun, trust me. When I'm not using the PICC line, I wrap it up in a mesh wrap so that it doesn't get pulled out. I've had a few times where it has gotten caught on something and almost came out.

Flushing it with saline

All hooked up to an IV.

Flushing it with heparin.

Waiting...

"I wait for you, O LORD; you will answer, O Lord my God." Psalm 38:15
Well not much has been going on. I have been put on a few new sleep medicines, but none are helping. Last week I had a scary reaction to one. All day Thursday I was hurting really bad and just felt really weird. I went ahead and took the sleeping medicine early that night. An hour after I took it I got so confused and out of it and couldn't walk. I couldn't explain how I felt and just cried. I didn't know what was going on. I finally went to bed around 4:30 the next morning...my days seem so long since I'm up all night. Nothing knocks me out. Every medicine I'm on is suppose to make me tired, but it doesn't. The doctors warn my parents to watch me because I should be passed out from all the medicines. But I still can't sleep. It's very frustrating.

We are waiting on a referral for a sleep study in Children's Hospital. I'll spend the night in the hospital and they'll hook up to 19 wires all over my body and monitor my sleep, or lack of. I'm so ready to start sleeping again. It is completely wearing me out. We are also waiting on a referral to a pain management doctor at Children's Hospital. That will probably take a few months though.

These are some of my medicines and my IV pole (whose name is Squirt). How boring would it be if I didn't name my IV pole?

Syringes and needles for all my shots


These are the flushes for my PICC line


Dressing changes and tubing for my PICC line

Some more supplies

These are some of my oral medicines and formulas that I mix into water

I would like to know some of your favorite verses or quotes! So please leave a comment and let me know! I hope your having a great week!

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 them...so 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 time..be 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!