Maybe another surgery...

I hope all of this makes sense, I'm posting from my phone.

We talked to my Lyme doctor Monday night. The main thing is that he said that I'm not even stable enough to make the trip to Nevada to get treatments. I've had to go to the ER so much and there's so many problems that he doesn't even think I can make the trip out there yet. We need to get the pain and cysts under control. He wants to know what my gynecologist said at my appointment yesterday, so we talk to my lyme doctor again in a week.

My appointment yesterday was very long, and heavy. We were there for over 2 hours, discussing options. We first saw a PA that we've seen before. Once we talked, she went to get the main doctor (who did my surgery). We talked about doing the Lupron injections. At first we decided that we were doing them, then we all decided to not do that. The said effects are terrible and it takes up to 3 months to work. It puts you in menopause to stop the cysts and endometriosis. That's just not normal for a teenager, so it would be hard on my body. Ever since I got sick, I've been the 1% who has all side effects possible of every medicine. That's just how I am now. The doctor was very good about listening to our concerns, and agreed that doing the injections would be risky for me. They would cause sleep problems, hot flashes, mood issues, depression, and other things. It sounds like it would make me feel how I do when I'm on steroids, which I can't tolerate anymore. There are medicines to try and treat the symptoms, but that's just more medicine.

As we discussed more in detail everything that's happened since surgery, the doctor got more frustrated. He could tell how frustrated we are as I cried while we were talking, and he's upset that he doesn't know what to do. I'm not a usual case, and he's stumped as to why I'm in so much pain all the time. He made sure and said he's not frustrated at me, just at what's happening.

He now thinks that I have scar tissue/adhesions and that is what is causing most or all of the pain. It can attach to organs or anything and move them or make them get stuck somewhere that they're not supposed to be. This can happen because of surgeries, along with other things. It can twist  and bind the bowels and cause tons of problems, which is what he is thinking is happening with me. It can cause complete bowel obstructions. It doesn't only happen to the intestines, it  can happen to anything. The ultrasound lady at my most recent ER trip, actually saw my intestines all twisted on my right side. Some people just have that, so she said it was not a big deal. But now that he brought that up, I remember her commenting on that. So what does this mean as far as a plan of action? I'm starting this medicine to try for a week. It's actually an anti-depressant, so I'm not quite sure what it's supposed to accomplish. I think it might help with pain. Next week I return to the gynecologist. If he still suspects scar tissue, surgery will be our only option. The only way to know if it's scar tissue for sure is surgery. Because cysts come and go, and my pain is in the same exact spot and consistent, he really suspects scar tissue. My pain is only on the right, but I've had cysts on the left and they have not caused pain. It completely makes sense, as I have almost every symptom of scar tissues and adhesions. Scar tissue has a very high rate after the removal of the gallbladder, appendix, gynecology surgery, endometriosis, and pelvis surgery. I have had every single one of those. I had two big abdominal/pelvis surgeries in three months. My appointment next week couldn't come fast enough. I'm so ready to get this taken care of. If we are going to have to do surgery, I want to do it as soon as possible. I think it would be best(not a great choice at all, but none of our options are good) if it is scar tissue, because that means that the cysts are mostly under control and we won't have to do the Lupron at this time. I would just have to recover from the surgery, and continue on the birth control. Do I want another surgery? No way. But surgery is sounding better than at least 6 months on the Lupron with the side effects. There are ways to take care of scar tissue without surgery. But if it has binded the intestines and who knows what else, you have to get in there and take care of it. So until my appointment, we're just trying to manage the pain, praying for direction. We're trying to avoid another surgery, but that might be the next step. I would appreciate your prayers for this, that the doctor has more clarity about what to do. Thank you very much.

I just love going to the doctor. Love it!

So maybe the title isn't true. But you sure would think I like it since I'm there all the time. Yesterday I woke up and there was a lump on the bottom of my foot. As the day went on, it got more painful and harder to walk. When I woke up today, the lump was bigger and discolored. It was a lot more painful and I can't walk on it. Since the doctors will be closed for the holiday, my parents decided to take me in today. The doctor was very nice! I had an
xray of my foot and it didn't really show anything. So she didnt really know what it was. It could be a cyst or something else. She gave me a prescription for an anti-inflammatory, as well as some inserts for my shoes. We also told her about my other cyst they found in the ER and how it's not really getting any better. She pressed on places on my stomach and I about screamed! It hurt so much! She scheduled an altrasound for a month from now to see how the cyst is doing. We're praying the anti-inflammatory helps the lump so I can walk again without trouble. One of the nurses at the doctor saw me and said,"you're here again?". I just laughed and said yes.

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!

So many appointments

There has been a lot of medical things to figure out lately. I am probably forgetting something but hopefully I'll remember everything that has been going on. Last week at my pain management appointment we mostly discussed my heart rate problems. They asked if I had the heart problems before my port. I said no and they explained that the port goes from my right chest, up to my neck through the jugular vein and down straight to my heart. If the port is too long it can actually kinda stab into your heart and irritate it. So I had some xrays done at the hospital to see if my port was too long. They said it would be easy to fix so we were hoping that was the problem.

We called them back today and they said that my port is fine..

We talked to my Lyme doctor in Nevada yesterday and he said that if it is not the port, then there could be a couple things going on. The Lyme could be really getting inside my heart and attacking it, causing the fast heart rate. Or I could have an infection in my blood causing the fast heart rate and nausea. He wants me to go to my primary care and have a blood culture.

I'm still taking the Neuronton (the anti-seizure medicine) and I hate it so much. The pain management doctor wants me to stay on it. I also go to the sleep doctor tomorrow so we'll see what he says about that. I take it when I get up and when I go to sleep so I just feel out of it and confused all the time. I feel like I'm in a dream. I don't think there are any other options though so I guess I'll have to stay on it.

On a happier note, my family is going to Destin, Florida for Christmas! We are renting a house right on the beach. I'm so excited! My grandparents and aunt are going with us too!

Christmas is so soon! I'm getting excited!

"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.

The Sovereign LORD is my strength;
he makes my feet like the feet of a deer,
he enables me to go on the heights." Habakkuk 3:17-19

Another new plan

I'm finally over the flu! It didn't last too long which is great!

On Wednesday I got to get out of the house and we went to my doctor in Seminole. We discussed how everything is going. The plan is for me to start a detox kit and then start more antibiotics. I need to start killing the Lyme bacteria again because I'm having more neurological symptoms. I have constant muscle twitches and my foot has gone numb a couple times. That means that the Lyme is really getting into my brain. We cannot let it spread or get into my brain anymore.

We also discussed what to do since I don't eat very much. I've lost even more weight since I've had the flu. She said hopefully it's just a virus that is making me nauseous and it will go away soon. We're praying that's what it is!

At the doctor I got an IV called a Meyers Cocktail. No it's not alcohol...haha but it is full of vitamins and minerals. It made me fell better!

I got to go to church Wednesday night!!

I'm going to start saying what I'm thankful for each day until Thanksgiving. I challenge you to do the same! I think we need to remember how much we are blessed even in these hard times.

Your Hands by JJ Heller

"I have unanswered prayers
I have trouble I wish wasn’t there
And I have asked a thousand ways
That you would take my pain away
You would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crooked lie Oh Lord, before these feet of mine Oh Lord, before these feet of mine

When my world is shaking, heaven stands
When my heart is breaking
I never leave your hands

When you walked upon the earth
You healed the broken, lost and hurt
I know you hate to see me cry
One day you will set all things right
Yeah, one day you will set all things right

When my world is shaking, heaven stands
When my heart is breaking
I never leave your hands

Your hands that shaped the world
Are holding me
They hold me still"

I am thankful for God's promises that tells us that He never lets go of us.

I hope you have a great weekend!

Are you kidding me?!

My parents took me to my primary care doctor today. Yesterday I started getting a lot worse. Today I couldn't get warm and when I moved my eyes around they really hurt, so we decided I needed to go to the doctor. My cheeks look like I've been sunburned because of my fever. My fever has been 101 all day. I took some Advil and it went down to 100 but it's going back up again. I have a bad cough too along with the body aches and pain. I just feel like crud. I always feel like that but this is like crud x4.

We were thinking I just had a sinus infection or something. If I had a sinus infection that would just be too easy to take care of. Life can't be that easy. Good thing we went to the doctor because I have THE FLU. What?! I can't get the flu...too late. I guess I've had it for a few days now. So I got some medicine and we're praying that the medicine will work.

Please pray that I will get better soon and that it doesn't get too serious. I appreciate all your prayers so much!

Crazy Day.

I just got home from the doctor. We had to go to my primary care doctor for a lot of things. We got the results of the sleep study and it showed that I stopped breathing a couple times but not enough for sleep apnea, which is good. It did show that something was causing me to wake up 6 times every hour. He said it had to do with my legs. My primary care referred me to a sleep specialist to see what is going on. So I had to get blood drawn today for the sleep specialist to look at. I have horrible veins. I got to the lab today and asked if they could use my PICC line. Of course they said no. They began to look at my arms to try and find a vein. I had to tell them where my veins were. I know, it's crazy that I have to tell them where my veins are. She stuck me at least 4 times, probably more. It took 45 minutes until she gave up and told us we had to go to the ER so they could draw blood from my PICC line. Thankfully another nurse came in and said she could take it from PICC line. My arms are going to be so bruised!

We asked the doctor about the rash on my back that has been there for over a month. He said it's just a virus that has to run its course.

My PICC line has been in for almost 7 months which is a long time. Everyone says it's the best PICC line they have seen! It has started to hurt all the time which means it needs to come out. We have talked to several doctors and we decided that I need a port. A port is under the skin right under the collar bone. It can last for years and is great because it's under the skin! The port will let me continue to do IVs at home! The doctor referred me to a surgeon at Edmond hospital and said I can hopefully get in to see him next week. When I have the surgery, he will take the PICC line out and put the port in at the same time! I'm ready to get the PICC line out!

In the doctor's office they had the radio station Klove playing and one of my favorite songs came on while they were trying to get blood. It's I Will Rise by Chris Tomlin.

"There's a peace I've come to know
Though my heart and flesh may fail
There's an anchor for my soul
I can say, "it is well"

Jesus has overcome
And the grave is overwhelmed
The victory is won
He is risen from the dead

I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles' wings
Before my God, fall on my knees
And rise
I will rise

There's a day that's drawing near
When this darkness breaks to light
And the shadows disappear
And my faith shall be my eyes

And I hear the voice of many angels sing, "worthy is the Lamb"
And I hear the cry of every longing heart, "worthy is the Lamb"

"My flesh and my heart may fail,
but God is the strength of my heart
and my portion forever." Psalm 73:26

Quick Updates

I went to our primary care doctor this morning for the cold, throat, chest crud that is going on. I finally went to sleep around 4:30 this morning after having to breathe in a paper sack for a while...We're still waiting on the lab results, but he put me on an antibiotic. I feel like I have strep but thankfully my strep test was negative. So we'll see what the blood tests show.

I'm actually not going to the doctor in Seminole tomorrow. We didn't get the paperwork to them or something so I'm going next Wednesday. That is better since I'm sick right now.

Lots of appointments..

There has been a lot going on lately. We found a doctor in Seminole, Ok that treats Lyme with both conventional and natural medicines. My appointment is next Wednesday with her. We're praying that she really does treat Lyme and actually knows something about it.

I'm going to a pain management team at Children's hospital on September 8th. They said that they treat tons of teens with Lyme and they understand the pain and lack of sleep in a Lyme patient. The pain management doctors are also the anesthesiologists for Children's. They sounded really helpful!
We're still waiting on the sleep lab results.

My homebound teacher called today and I'm starting homebound again on Thursday. She'll come to my house once a week to answer any questions I have or help with anything. I will do all my work online through the school. They have been really helpful and encouraging.

My home nurse still comes once a week to change the PICC line dressing and take my vitals and everything. My PICC line has been in for almost 6 months so it's almost time to get it out. We're trying to decide what to do next. Not doing IVs is not really an option. Our choices are another PICC line or a port. I pick the port. It's a device that is inserted into the upper chest and goes to the heart. The nice thing about a port is that it is under the skin and you can't see it-unlike the PICC line. The port can also be left in for years. But you do have to have surgery to get it put in. We are hoping that the pain management team could order the port since I don't really have a doctor that can order it. Plus, they would be the ones we worked with anyway since they do the anesthesia for surgeries. We are just looking at options right now.

There is a really cool website where you can make something with words and print it or do whatever with it. Mine is hard to see, but there are verses and different words. You can click on the picture to see it bigger. Here's the website:

http://www.wordle.net/

"But as for me, I watch in hope for the LORD, I wait for God my Savior; my God will hear me." Micah 7:7