1.6, Winterfest, Steroids

This post is so random, just so you know.
As you know, I started a steroid pack to clear up my hives around my incisions. That didn't go so well. All weekend, I was angry and upset with everything and everyone. But I honestly couldn't control it. Saturday night I broke down because I was so frustrated that I was so angry and I couldn't control it. I also couldn't handle pain. I have a very high pain tolerance, so even though my abdomen where I had surgery still hurts, I'm mostly off pain medicine. I do have to take Ibuprofen and Tramadol sometimes. But on Saturday, I could not handle it. So I took some medicine and that helped. My mom told me to stop taking the steroids.  Thankfully, my rash is mostly better, and I can continue using the steroid cream. I continued to have the steroid side effects Sunday, but I think now they have stopped. My body just can't handle steroids for whatever reason.
I just walked 1.6 miles in 10 minutes! Yesterday I walked 1.7 miles. Have you all used the Wii Fit? It's really fun and helpful! Everyday, it weighs you, tells you your BMI, and shows you how your balance is. Then, you can do exercises to help accomplish different things.
I've lost a lot of strength during recovery from surgery, and from the past 2-3 years since I got sick. I really need to build it back up. For such a long time, I wasn't allowed to do any physical activity because of my heart problems. I haven't done anything since then.
I'm starting slow, since I am still recovering from surgery. I've been working on my balance, and walking everyday. I didn't do anything on Saturday and Sunday because my abdomen, where I had surgery, was hurting a lot.
One of the reasons I started building up my strength this week is because Winterfest is this weekend! If you don't know what that is, you can read my post about last years Winterfest here. I am planning to go, and can't wait!!
This weekend I got to sleep in my room again!! Although the stairs are still a mountain that stabs me with knives in my stomach, it's been great.
I also got to go to church on Sunday! I didn't go to class Sunday morning, just worship, but I did get to go to our prayer meeting and church Sunday night!
This week I am going to rest and not really go anywhere so that I can be ready for Winterfest!
Tonight, we have a phone conference with my Lyme doctor. We have lots of things to discuss. I'll update tonight or tomorrow with everything we talk about and find out.
Hope you are having a great day!

Update after appointment

We just got back from my appointment with the surgeon. We actually didn't see the surgeon because he is out of town, but we saw one of the other doctors who was in my surgery too. She was very nice!
She looked at my incisions and hives and said that the incisions are healing well! They don't look infected or anything so that's really good! She said I could be allergic to the stitches so that's what could be causing the hives. So she put me on a steroid pack to clear it up and gave me some steroid cream. Hopefully it will help soon.
To get the cysts and endometriosis under control, we are going to having to shut everything down. She said that I had lots of internal bleeding in my pelvis and abdomen from the endometriosis and cysts, so we really need to stop that. To shut it down, I will get a series of injections.
But, before we start that, they want us to check with my Lyme doctor to make sure that is okay. You mean they actually believe I have Lyme and want us to consult with my doctor?! Yes! We love them there! They have never, ever questioned us. So my mom is talking to my Lyme doctor next week. If he approves of it, we'll go back in to my surgeon and go over everything that will happen and then start it. They said that the side effects (hot flashes, irritability, hard time sleeping) are what's hardest for young girls my age. It will be a hard adjustment, but it will be worth it. We don't want anymore surgeries.
The concerning thing has to do with my blood work. Ever since last May, my platelet count has been low. We haven't really done anything about it, thinking it would resolve itself. Today the doctor said that my platelets are still low. They did blood work again today and if they are still low, I will need to see a hematologist/oncologist. Apparently they are the same doctor. She said not to freak out about going there, they just need to make sure everything is okay. We are also going to talk to my Lyme doctor about this.
My red blood cells are also low, so I don't know what's going on. There were several things on my blood work that were not right. I'm sure it's something simple and will be easy to fix.
For now, I'm doing the Wii fit everyday to try and build my strength back up. For a month I've done nothing but lay on the couch, so I've lost a lot of strength! I need to build it back up.

Hives, Acts, Spiritual Disciplines

I'm doing pretty good right now! It's been 4 weeks since surgery. I'm just taking it slow. A week and a half ago, I developed hives all over my stomach and incisions. Ever since they started, I've taken Benedryl as often as I can, and I've put cream on them. Nothing is helping! I wake up in the middle of the night to find them bleeding because I scratch them in my sleep. I have tried epson salt baths. I even took steroids for a couple of days to see if that would clear it up, but it didn't. I've gotten bad hives after another one of my surgeries before, but they only lasted a few days and they were right after surgery. We have no idea why the hives would pop up 3 weeks after surgery and last this long with no signs of improving. It's crazy! If anyone has any ideas for us, we would love to hear them! They are so miserable and make my stomach hurt. Hopefully they will get better soon.
We've had problems with my home health group for a while now. They charge us for things that we didn't even order. It's a huge mess. Now, they decided that our contract is over so they showed up last week and took my IV pole away. I was kinda freaking out because I've had that IV pole for almost 2 years. And I still need it! With my port, you have to access it and flush it out at least every 6 weeks so that it doesn't get a blood clot. The only way we can do this is if the home health brings the supplies. My mom is the one who actually accesses it. So now we are trying to find a new home health group who will accept me. We need to find one fast!
I've gotten to get out of the house a couple of times in the past week! On New Years Eve, we went to our friends house with a couple families. They live a mile from us so we didn't have to go far. We had a great time!
I also got to go to church on Sunday morning. I'm so glad I was there! It was such a great time of worship. This year as a church, we are striving to practice more spiritual disciplines. One of my youth ministers preached on Sunday and it was fantastic! It was about training. He started out with this verse.
"Everyone who competes in the games goes into strict training. They do it to get a crown that will not last, but we do it to get a crown that will last forever." 1 Corinthians 9:25
When you sign up to run a marathon, what do you automatically know you have to do? You have to train. There is no one who would EVER run a marathon without training. That would just be stupid.
When you have a test, you can not perform at your highest unless you study.
So why do we think that as Christians, that we are going to be able to do anything for God without training? Why do we think that we can just go out and do everything without going under strict training?
On Sunday we looked at the miracles in the book of Acts done by the disciples. They performed so many miracles! They did so much for God! We always look at the big things that happen in the Bible. As Phil showed us on Sunday, we fail to look at what happened right before each of the miracles.
Before the disciples performed each miracle, they spent time praying and seeking. Before God used them to do something great, they prayed.
What does that mean to us? We look around wondering why we aren't being used, but we haven't done anything to prepare us to be used. We think that we can go run a marathon for God, but we don't want to train.
On Sunday, we were all given a book for this year. Each month at church, we are going to focus on a different spiritual discipline. Each month we will add to our book. We need to start training so that we can really be ready to be used by God. We need to start training.
We were encouraged to sit in silence before God and just listen. You can learn so much from simply just being quiet before God.
When God told Elijah to go wait for Him on the mountain, He came in a whisper. God didn't come in the earthquake, wind, or fire. He came in a whisper. (1 King 19:10-18)
I pray that we will seek God and get a little bit closer to Him each day.
I'm still sleeping downstairs because climbing stairs is still painful. It's been almost 5 weeks since I've slept in my room. I'm also still wearing sweats all the time since other pants still rub my incisions. I did wear a dress and leggings to church though! That was exciting!
Tomorrow I have a follow up appointment with my surgeon. Hopefully he'll have a plan to help my hives!
I hope you all are having a great week!!

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