Things are about the same today. I wish I could say it's better, but it's not. I've been sleeping about 12-14 hours at night and I'm still so exhausted. All the pain medicine makes me pretty groggy too. Yesterday my stomach started swelling up, most likely from all the fluid and blood in my abdomen and pelvis. It's still very swollen. I took a shower today which felt really good since I hadn't showered in a while from just being too sick. I take multiple baths a day to see if that will help with the pain. Sometimes it does, sometimes it makes it worse. I'm still not okay will the "wait and see" thing that's going on, but I honestly don't know what to do about that. How can they tell me to wait for 2 weeks, when they don't know how much it hurts and how sick I feel? I don't ever want anyone to know how this feels, but I wish someone would listen and do something about it instead of sending me home. I'm trying to be tough but i'm so tired of this terrible pain! It seems like everyday it hurts a little more, but there's nothing I can do about it. I keep wanting to take myself to the ER but I don't think that will happen. I just need relief soon. Please keep praying.
Here's a song by Steven Curtis Chapman and then some Bible verses.
"This is not how it should be
This is not how it could be
But this is how it is, and our God is in control
This is not how it will be When we finally will see We'll see with our own eyes, He was always in control
And we'll sing holy, holy, holy is our God And we will finally really understand what it means
So we'll sing holy, holy, holy is our God, while we're waiting for that day
This is not where we planned to be
When we started this journey
But this is where we are And our God is in control
Though this first taste is bitter There will be sweetness forever
When we finally taste and see That our God is in control
And we'll sing holy, holy, holy is our God
And we will finally really understand what it means
So we'll sing holy, holy, holy is our God While we're waiting for that day We're waiting for that day We'll keep on waiting for that day
And we will rise
Holy, Holy, Holy
Our God is in control"
"Though the fig tree does not bud
and there are no grapes on the vines,
though the olive crop fails
and the fields produce no food,
though there are no sheep in the pen
and no cattle in the stalls, yet I will rejoice in the Lord,
I will be joyful in God my Savior." Habakkuk 3:17-18
"The Lord is good,
a refuge in times of trouble.
He cares for those who trust in him" Nahum 1:7
"When you pass through the waters,
I will be with you;
and when you pass through the rivers,
They will not sweep over you.
When you walk through the fire,
You will not be burned;
The flames will not set you ablaze." Isaiah 43:2

More appointments, more treatmentment plans

Warning..there is lots of information in this post and it's very long...
Last Thursday we went to Children's Hospital for my appointment with the pain management team. It's actually a team of pediatric anesthesiologists. I've been seeing them for a little over a year and they have helped a lot! Unlike most doctors in Oklahoma, they believe that Lyme is a big problem here, and they have taken care of several kids with Lyme. They understand how hard it is to find doctors who support Lyme.
Last year, they put me on Amitriptyline (Elavil) to help with pain and most of all, sleep. It is the only medicine that has helped me sleep, and believe me, we have tried everything. There is a little problem though with this medicine. It can cause tachycardia (super fast heart rate) and heart arrhythmia. I had to be on the highest dose that they can give because nothing knocks me out. Because I was on such a high dose, I was having the tachycardia and arrhythmias. Earlier this year I landed in the hospital because of that. We stopped the medicine for a while, but then I started not sleeping again. So we decided to start me back on the medicine, but at a lower dose. Right now I'm on the lowest dose and it's working pretty well! I don't think we need to go back up on it.
On Thursday at my appointment, we discussed the risks of the medicine vs no sleep. They also told us about a medicine like Amitriptyline, but for some people it doesn't have as bad of side effects as Amitriptyline. I forgot what it's called. They didn't know if it would work for me though. We talked about switching to that, but for right now we decided to just stay with Amitriptyline since we know it works. We will just have to monitor my heart and make sure everything is okay.
Friday, my mom had a phone conference with my Lyme doctor in Nevada. We've talked to him several times in the past couple of weeks.
The main problem right now is brain problems. I wish I could completely explain what is going on, but it is so hard to describe. I'm having headaches almost daily. There are memory problems that I'm having. When I read things, I really can't remember anything. This summer I read some books but it was so frustrating because I would have to re-read every chapter several times before I could kind of remember what happened.
I haven't mentioned a lot about the brain problems because it's one of the most frustrating things. It can change you into a completely different person. I know of a person who was my age that had Lyme and one day woke up and she didn't even know who her family was. She would try to run away from home because she thought they had kidnapped her. It's so sad to hear about things like that. I will have conversations, and then immediately have the same conversation because I don't know that I just talked about that. Simple tasks now become so overwhelming. Tasks like looking for something that someone asked me to find. It just overwhelms my brain and I forget everything they said. I'll go downstairs to get something I need, and find myself just standing there for ten minutes not knowing what I'm doing.
I hope this doesn't sound like I'm bragging, but before I got sick, I didn't have to try in school. I just made good grades and planned on graduating with straight A's. Now, I can't even do 20 minutes of work at a time without getting overwhelmed. I just sit there are stare at my work trying to figure out what to do. There's so many things that Lyme does to the brain...
So we talked with my doctor about that and what to do about it. He said part of the brain problem is from toxins. As you kill the Lyme bacteria and co-infections, they give off horrible toxins. Lyme patients bodies are so unbelievably toxic. I'm starting lots of detoxing to try and cut back on the toxins. I'm also starting back up on all of my shots and medicines. I had stopped when the gallbladder problems started.
My doctor was so glad to know that I had surgery to take out my gallbladder. He suspects that I've been having gallbladder problems for several months. After we went to the clinic in Nevada in May, I started having stomach problems. He said that even though the surgery is laparoscopic and supposedly "not a big deal", it's a big deal to have gallbladder problems. He's so glad that we got that taken care of because you do not want to mess around with that.
A few times this weekend, I have eaten spicy and fatty foods and then have gotten sick with nausea and abdominal pain. We told my doctor this and he told me to stay away from spicy and fatty foods for a while. He explained what the gallbladder does and so it makes since as to why my body needs time to adjust. I'm glad to know why I've been getting sick!
Last week I was feeling pretty good! I left the house almost everyday last week! Thursday night my parents and I went to a thing for Oklahoma Christian University. It was 'A night with the president'. There was a reception at the president of Oklahoma Christian's house for juniors and seniors looking at OC. It was great! We were the last ones to leave because we were talking to the president and first lady. It's funny because at church or any event my family is always the last to leave. It's like a law or something. It never fails.
On Friday I got to go to senior lunch and then to a movie that night!
On Saturday I did IV fluids at home. I started not feeling well Saturday afternoon and am still not feeling well. I've been achy, had a little fever, and just feel terrible. I went to church Sunday morning which wasn't a smart idea. Yesterday I took a nap and felt a little better. Hopefully I'll feel better soon!

Surgery Follow Up Appointment- Surgery is kinda like an invisible illness!

I did try to go to church on Sunday! It didn't go as well as I hoped but at least I got there. I didn't stay very long because I broke down from the pain and fatigue. But it was really great to see everyone!

On Tuesday I had my first follow up appointment with the surgeon! It went very well! We really wish the surgeon was a regular doctor. He is so genuinely caring and wants to listen to what is going on.

He took all the tape off of my incisions and scraped some dried blood (eww) off of them. He said the incisions are looking very good!! Some of the stitches are poking out from inside and he asked if I wanted him to take them out or just let the dissolve. Of course I said let them dissolve! Duh!

It's been 3 weeks since surgery and a week ago I ran out of pain medicine. We called the surgeon's office to tell them and they said they don't refill pain medicine. They said to use Advil and they were very rude about it. So that's what I did. It wasn't pleasant and I was in a lot of pain.

We told that to the surgeon and he got so mad. They never told him that we called. He kept apologizing and was very nice about the whole thing. He explained that usually they want you to be off the pain medicine soon after surgery and that they don't refill pain medicine. But because of my situation, he knew I needed to stay on it longer. Before surgery he was really good at wanting to understand my pain and how surgery would affect it. He actually cared and was concerned.

So on Tuesday he wanted to know about all the pain I'm experiencing. I'm having pain in places that normally shouldn't hurt. He wants some tests done to make sure everything is okay. On Tuesday he sent me to the lab for some blood work. Depending on what the blood work shows I might have a ct scan.

Before my appointment I was a little discouraged because I'm still in a lot of pain. I only have 4 small incisions so why am I hurting so much? He reminded me of what is going on inside my abdomen. He explained what he did during surgery and that to get to the gallbladder he had to cut through muscle. And he did take an organ out and cut adhesions off my liver. My body has to adjust. I felt better after he explained that a little more. It is a bigger deal than I think

Surgery is just like invisible illnesses sometimes. Yes I only have 4 small incisions. But there's so much going on inside that I can't see. That is where the pain is coming from.

He said that I look good, but that I look uncomfortable and in pain. He actually told me to take my pain medicine for a while longer. What?! A doctor actually saw how much pain I'm in and told me to take pain medicine? I never thought I'd see the day! He apologized again for the lack of communication regarding the refills.

I go back to see him in a week and a half!

Thank you for the prayers for my recovery and for the cards and everything!