Thursday, March 31, 2011

update - Thursday night

Today I got the Vitamin C IV and fluids with adrenal support. We had an appointment with my doctor today. Ever since I've been here, we've just been trying to figure the abdominal problem. We have ruled out any serious, life threatening things that would need immediate attention. Now, it is time to start killing Lyme, and any other things that are going on. We switched my pain medicine, so hopefully that will help to keep me more comfortable. The body can't heal when it's in so much pain. The time will come when I don't need pain medicine, but for now, I do. My mom and I have been really worried about me being on so much pain medicine for so long. We've been reassured that for right now it's okay. Not ideal at all of course, but they're watching it closely. It made us feel a lot better.

We are still going to do the rest of the MRI next week, because we still are worried, as are my doctors.

So today I got my first push of this trip. I got it at 3 and a few minutes later, the body pain down to my bones started. I had 3 blankets because I was so cold. Thankfully, I fell asleep for a few minutes. So far I've just had fever, body pain, migraine, and the abdominal pain has increased. I've twitched some, but not bad. Im also feeling very weak. But today wasn't too bad. We stayed at the clinic for a while, and then got to leave. Im still hurting and weak, but it's not terrible.

We found out my protein and iron are very low, so we need to get those levels up again. Im sure there's more that we found out at my appointment, but i can't remember it at the moment.

Thank you so much for praying for me today about the push! It was tolerable.

We'll see how tomorrow goes!

Wednesday, March 30, 2011

Update - Wednesday Night

Today I got the usual Vitamin C IV and fluids. I got another breathing treatment, which is helping my coughing.

I woke up in the middle of the night coughing so much and gagging from it, so I was up a lot. Im very tired today.

We are trying to figure out another plan to get my pain under control. The IV Demerol that I've been getting isn't working as well, since my body is getting used to it. I've had it almost everyday for 3 weeks now. Also, the morphine pills aren't working very well. So today I got a double dose of Demerol, and tomorrow I will again if I need it. We're probably going to switch my oral pain medicine too. My body has built up such a resistance to pain medicine because I've had to have so much, that it takes a lot to relieve my pain. Sometimes I feel like everyone is mad at me because I need so much medicine. I know it's not my fault, and I can't help it. It just seems like everyone gets mad at me because Im getting some strong medicine, and still hurting.

We actually got to leave the clinic early today! We left around 6.

Tomorrow I am supposed to start the push. It is a shot that goes in a vein, and stimulates the immune system. Lyme is very tricky at hiding from the immune system, and even shutting it down. So when you show your immune system that the Lyme (or any bacteria. The push works for anything) is there, it fights to kill it. Because it's so overwhelming and the toxins are so strong, you get a reaction. Usually I get a high fever, pain down to my bones, body shaking everywhere, migraine, nausea, and weakness and pain to the point where I can't walk or move much. This can last all night, and if it's a bad reaction it can last for days. It brings out your worst symptoms, and magnifies them to an almost unbearable degree.

Because of all the pain I am already in, the doctor wants me to stay at the clinic for the push. Usually you get it around 4 and then immediately go home to get ready for the reaction. It takes about an hour to hit after you get the shot. So I will get mine a little earlier, and stay there because they are a little worried about how my body will handle it, since it's really intense. Every night you are encouraged to go up a dose on the push to get a better reaction, but sometimes it's just too much. To tell you how strong the medicine is, they give people ONE drop of it, and they will react for days. That's what happened to Grayson, the boy my age here. It threw him into seizure like activity for days. He is not doing the pushes anymore, they will wait till things are more stable.

Sometimes the pain and shaking are so bad, that you have to stop the reaction. It won't stop the pain, but it stops the shaking. You have to take a bath of Apple Cider Vinegar, and it draws the medicine and toxins out. I've done that lots of times.

For me, the first thing that happens when I get the push is that deep inside me I start to hurt, and it feels like ice is running through my veins. Then, the shaking and fever starts and last a couple of hours. Next, the horrible pain that makes me not even want to move hits as your temperature rises. A lot of times I have to sit in the dark because of the migraines. Sleep does not happen because of the pain and fever and shaking. It makes for very long days and nights. Then you get to do it all over again the next day!

It really is terrible, but I have no choice. I came here to fight, and I have to do it. If I want to get better, this is what needs to be done. The push is so good for everything in your body, whether it be viruses, bacteria, scar tissue, and things like that. It just takes a lot of pain and suffering to get there.

There's a song, but I can't remember the name of it but I love one of the lines. It says, "You never said it would be easy, but you said you'd see me through the storm". I love that.

"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” John 16:33

Please pray for me as I start the push tomorrow, and that the reaction isn't very severe. I'm pretty nervous, since I'm already hurting so much, but they will monitor me and give me things as I need it.

Tonight I noticed that my abdomen is very swollen all over, so we need to have the doctor look at and see what's going on. We also have an appointment with him tomorrow to go over everything.

I hope you are having a good week so far! I know I say this a lot, but thank you so much for the prayers and encouragement! It helps me so much. As you can imagine, it's very lonely out here, so I love the messages from home.

Tuesday, March 29, 2011

Update- Tuesday night

Monday we got to the clinic early because of my MRI. I got IV fluids and adrenal support, and then we went to my MRI. It was an "open" MRI, but I was so claustrophobic still. I calmed down enough to be still though. We only did half of the test because of my coughing. I'm sorry, but can YOU hold your breath for 23 seconds while coughing up your lungs, with being short of breath from the pain? Yeah, I couldn't do it. We will have to go back when I'm over the cough.

After the MRI, I went back to the clinic for a Vitamin C IV, and shots. We got home around 7 last night, and I went to bed very early. I also got lots of IV pain and nausea meds like usual. The doctor called in some stronger cough medicine, so that helped me rest a little more last night. I still woke up at 5am coughing and hurting, but I was only awake for a couple hours.

When I woke up today I felt worse. My cough was deeper and worse, and I was hurting more. We woke up early for my lymphatic therapy. We got through about half of it before I broke down crying, saying it was too much. I hurt all over and her massaging me and working lymph knots out of me just made me hurt more. I was so upset that I couldn't handle it. I was lying flat the whole time, which made my coughing worse. We quickly left and headed over to the clinic.

For some reason, they couldn't access my port. We tried FOUR times, each time with a different needle. None of them worked. So we tried my arms. Of course, my vein blew. So we finally got a vein on the sixth try! My poor arms and port look terrible.

They started IV fluids with adrenal support and some pain medicine. I got 2, 30 minute breathing treatments, which helped my coughing. I got another Vitamin C IV and more pain and nausea medicine.

We just got home and it's 9:15 pm. We left at 9 this morning, so it's been a long day. I'm going to try to post shorter, more frequent updates, since the days are a blur from all of the medicine. And, since you are so diligently praying for me, I want you to know how I'm doing. Thank you so much for praying.

A couple of us at the clinic were talking about the verses of Jeremiah 29:11-13

"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 on 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"

Praise God that He has a plan for everything, and has more planned for us than we could ever imagine.

We have a better plan of what this week might look like, but I'll post that later. For now, I'm going to bed! Goodnight!

Saturday, March 26, 2011

Not the day we planned, but it's been nice.

Today didn't go quite as planned. But no day goes as we planned, right? We woke up planning on going snow tubing this afternoon. We called several places, but they were all closed because of the amount of snow fall. Every place was having to dig the lifts out of the snow. We were going to still try to go later today, but as I started getting dressed, I realized how bad I felt. I so wanted to go, but they still might not have been open, and I was too sick. It never gets any easier having to cancel plans with people. It makes me feel terrible.

My mom went and got me some cough medicine, which has helped some. I'm still on pain medicine around the clock, which helps keep me a little more comfortable.

This afternoon, my mom and I decided to get a pedicure. There is a spa less than a minute from our apartment, so I could do that. It was so nice! They massaged our feet and legs for a long time, and it was really relaxing.

We rented a couple movies and are making dinner at the apartment tonight. It's been nice not having to go anywhere, but I wish we could have gone tubing. We'll try again next weekend.

These are a few pictures from around our apartment! This is the entrance of the apartments on a snowy day.

The view off of our balcony

One of the gates to the apartments

I know I say it a lot, but thank you so much for the prayers and encouragement. I really mean it from the bottom of our hearts.

Friday, March 25, 2011

More Lake Tahoe pictures!

Today has been a good day mostly. We got to the clinic early since it is Friday. I got fluids with adrenal support, and Vitamin C for the virus I have. My cough is deeper and worse today, which makes my stomach and chest hurt so much more than they already do! At the clinic I had to have 3 doses of pain and nausea medicine (Demerol and Phenergan). My stomach felt like it was having a spasm, so they gave me a natural pain medicine, which made the pain worse so I ended up just getting the regular pain medicine. After my IVs, I had another lymphatic massage. It went well. We only did it for an hour this time, to try and ease into it. When I threw up after the treatment on Tuesday and Wednesday, she said that is a good thing because it was a fast way to get rid of toxins. So it's good that I feel horrible and throw up all night? Yep. Well, if it is good then I guess I can't complain.

They are thinking that I have a kidney or bladder infection because of some things they found, so they sent my urine off for a culture. There could also be a kidney stone that is hiding from the CT scans. Hopefully the MRI Monday will tell more!

I'm feeling okay tonight. The pain started getting worse after my lymphatic treatment, so I took some medicine and that has kept it down a little. I took a bath, and am going to get in bed early.

Tomorrow we are going to try and go snow tubing with Grayson and his mom! It will be so much fun! We could go to the clinic tomorrow morning, but both of us need a 2 day break to survive the week.

On Sunday, the missionaries from our church who live in Brazil are getting here! I've talked about them on here before, and they were at the clinic last year when were here too. So this is the second time we will be at the clinic with them. We have so much fun with them!!

Here are more pictures from this weekend. On Sunday, it was snowing so much!

I hope you have a great weekend!

Thursday, March 24, 2011

Thursday update

I still have pictures from last weekend to post, but here's an update on me.

Monday was a crazy day. Sunday night, after I took the morphine, I started having bad muscle twitches and the pain got worse. My whole body would twitch. Monday morning, I didn't take the morphine because of the reaction, so I was hurting so much by the time we got to the clinic. They started my IV, and then it was time for my dad and brother to go to the airport. We said goodbye, and my mom took them to the airport to fly back home to Oklahoma. The pain started getting worse so fast. I lost it, and was trying not to scream. I had to have the trash can because I felt like I was going to be sick. They had to give me double doses of Demerol and Phenergan. It was terrible. My doctor thinks that the cyst burst then, because it was so bad. After a couple more doses of medicine, the pain was less, so we got to go home.

Tuesday was a decent day. It was the first day that I didn't require IV pain medicine. I went to a lymphatic massage Tuesday afternoon. And why it's called a massage I will never know. It's not relaxing or anything. This treatment is to try and help the lymph system drain and release toxins. Mine is very backed up and not working properly. There are pressure points on the feet and body that correspond to organs. She worked on each, and which ever ones hurt, there could be a problem there. The worst for me where the bladder, kidneys, ovaries, and uterus. I almost jumped off the table as she pressed on those. There are also lumps all over my body that she has to work out, to get the lymph system moving. I can feel the lumps all over me, and once she works on them, they are smaller.

Everything was fine until an hour after the treatment. I got the worst migraine and body aches. My abdomen hurt even more. I had to go ahead and take morphine, and thankfully didn't have a reaction to it. Through out the night, I took 2 migraine pills, and the migraine was still there. I threw up several times starting at 6am, but went to sleep after that. I only got a few hours of sleep, and when I woke up, I felt terrible. I barely made it through a shower, before I begged to take me to the clinic. I couldn't stand light, so I hid under my blanket. They gave me IV pain medicine, and natural migraine medicine. That all helped my migraine, but not the abdominal pain and back pain. It was like I got a bad push.

Getting sick from the lymphatic treatment shows us that it's releasing toxins, which is a good thing.

Today I woke up feeling better than yesterday, but still not good. I've had to sleep with a trash can by my bed because I've been getting sick so much. I was able to take a shower this morning and get dressed, which was an improvement. I woke up with a cough, and my voice is hoarse. Coughing causes more pain in my abdomen, which is not good! I got IV fluids today, along with another IV of things to help my cough hopefully. I also got IV pain and nausea because I hurt so much more with the coughing.

I have an MRI scheduled for Monday afternoon. They are going to do a full abdominal and pelvis exam. I'm having bladder problems, so they need to make sure everything is okay with my bladder and kidneys. But the main reason for the MRI is to check for endometriosis, or something else in my abdomen that is causing the pain. Depending on what the MRI shows, I might have to have exploratory surgery again back home. The pain is just not better, and it's gone on for long enough. We are anxious to see what it shows.

I'm feeling better tonight, just hurting some and tired, but better than the past couple days. We met with the doctor today and just talked about things. We got a stronger medicine to try and keep the cysts and endometriosis from coming back again, so we'll see if that helps.

It started snowing so much this afternoon here! It's really pretty. Tomorrow I have another lymphatic treatment, so please pray that goes well, and that it's not too hard on my body.

Here is a picture of Grayson and I at the clinic today. He is the one I asked for prayers for a couple of posts ago. He's doing okay, not worse, but not better.

We saw these fake palm trees covered in snow tonight and had to take a picture!

I hope you are having a good week so far. The weekend is soon! I can't thank you enough for your prayers and support.

"I thank my God everytime I remember you" Philippians 1:3

Sunday, March 20, 2011

Lake Tahoe - Part 3

We tried to drive to a bay on the other side of the lake, but the roads were closed because of the snow. But we still saw amazing things!

"The heavens declare the glory of God; the skies proclaim the work of his hands." Psalm 19:1

Thank you God, for giving us these beautiful things to look at!

I think I have one more post of pictures from this weekend!

Lake Tahoe - Part 2

Today we had planned to go snow tubing. Well, you think we would have learned not to plan by now. Because of the high winds that came in with the blizzard, the tubing was closed. We decided to ride up the gondala anyway, and just look around. It was beautiful, and we ate lunch up there! Afterwards, we drove to the ski places to get my mom and brother signed up for skiing tomorrow. Then, we drove around some more! I know it doesn't sound like we did a lot, but it took up the whole day (oh yeah, and we slept in till 10:30 this morning).

Landon and I

Lake Tahoe in the background

At the top of the mountain!

You can see in the distance the mountains that don't have snow. That's the desert. How crazy!

The lodge at the top

Nevada to the left, California to the right

More pictures to come!

Saturday, March 19, 2011

Lake Tahoe in Pictures - Part 1

Yesterday afternoon, we drove an hour from Reno, to Lake Tahoe. We didn't go to the clinic yesterday (Friday) or today. It's nice to have a break. My doctor loaded me up on pain medicine so that this trip was possible. We ate lunch in North Tahoe before heading south.

The view from where we ate lunch

The blizzard started coming in right after lunch, and by the time we got to our hotel, this is what it looked like!

Our hotel

The blizzard right when we got here

Ice skating rink

They had to get the snow off of the skating rink so they had this cool machine!

We walked around some shops for a while, then went to the Hard Rock Cafe for dinner. We were all exhausted after yesterday, so we came to our room and relaxed.

The heaters in our room are very loud, and I was hallucinating all night from the Morphine. Every time the heater came on, I was convinced there was an avalanche...I was terrified all night. Now, it is so funny to think about, but then it wasn't! I was so scared!!

I'll post more pictures very soon!

Friday, March 18, 2011

Update on the past few days.

I'm sorry it has taken so long for me to update. The past few days are a blur from all of the pain and nausea medicine. Monday I was supposed to start the push but we decided not to. We talked with my doctor and all decided it would not be smart. I would end up having to be admitted to the hospital because of the pain if I got a push. So we decided to start me on 2 antibiotics to try and kill the infection in my abdomen. I am on Cipro and Flagyl. I did a major auto hem procedure on Monday. I took the antibiotics while I was at the clinic and when they kicked in, the pain got so much worse. The pain was so bad that I threw up. I had to have 3 doses of Demerol and Phenergan. I started feeling better after a while, so we got to leave. When we got back to the apartment, I got sick several more times through the night. That was Monday.

I woke up Tuesday feeling terrible. I barely got dressed before I was so sick. We got to the clinic and within 5 minutes my doctor sent me to the hospital. He called them to tell them I was coming. So off we went to an unfamiliar hospital. My dad and Landon were at the airport in OKC getting ready to fly to Reno.

We got taken back to a room at the hospital and I changed into my gown. When the nurse was taking me to my room, he accidental hit me in the head with his elbow. We had to laugh because we were already crying. They started an IV which took 3 tries. They drew blood, and gave me Dilauded for pain. Next I went to have a CT scan. I have had so many in the past six months, its ridiculous. They discussed the pros and cons of exposing me to more radiation, but decided it was necessary.

The CT scan showed that I have a large ovarian cyst. It also showed dilation of my small bowel. What does that mean? They said they aren't sure. It could be from things slowing down from the pain medicine (too much information I know), or it could be the start of an obstruction.

After my scan, I started hurting so much again so I got more medicine. Everyone at the hospital there was so nice, but it was hard being in a different state and hospital.

They were willing to admit me for pain control and monitoring, but after talking to my Lyme doctor, we decided to leave. My mom dropped me off at the apartment and went and got my dad and Landon from the airport! I wasn't in as much pain because of the dilauded, but I still didn't feel good.

I woke up yesterday morning (Wednesday), feeling a little better. I fasted Tuesday night and yesterday morning for my blood work. We went to eat after that, then came back to the clinic. I took my antibiotics and within and hour, the pain got so much worse. I had already taken a morphine pill, but the pain was still so bad. I also had fever (which I've had for days, maybe even weeks) that was higher than before. I ended up having to get a couple doses of Demerol in my IV. That seems to work better than oral pain medicine, it just doesn't last long. We had an appointment with my doctor yesterday afternoon. He put me on morphine pills around the clock to try and get the pain under control. It's so bad that not even morphine and Demerol can knock it out completely.

Last night in the middle of the night, I woke up in so much pain and was nauseous and I couldn't move because I hurt so much. My phone wasn't by me, so I could not get my parents. I eventually fell asleep again though. I felt terrible again this morning, even with the morphine pills. We got to the clinic, and I was given a dose of Dilauded and Phenergan. The pain came back after a couple hours so they gave me Fentanyl. That did not go well! The pain got worse, and I was doing everything I could not to scream. They gave me another dose of Dilauded, which helped a lot.

So today I had 2 double doses of Dilauded and Phenergan, morphine pills, and Fentanyl, and my pain is still there. It is a lot better than it was, but it's still there.

My poor arms are so sore and bruised! They ER nurse said several of my veins are as hard as rock from all the sticks, so we can't use them anymore. In the past several days, I've had at least 14 IVs and blood draws in my arms. They're all swollen and look terrible. Thankfully, I can use my port again!

Today when my doctor saw me crying in so much pain he asked if I would be okay with them giving me the IV pain medicine. I told him that I really don't want to get addicted. But he reassured me that it is okay to be taking this much right now, because he can see how much pain I'm in. He can't stand to just let me cry in misery. If you're in that much pain all the time, your body can't heal. It made me feel a lot better about taking such strong medicines around the clock. My metabolism is so fast, and my pain level is so high that it just takes so much medicine for me to be comfortable.

I have been so exhausted from all the medicines. Right now the plan is just to support me with pain medicines, and IV fluids with adrenal support, as the antibiotics get rid of the infection in my abdomen. My Lyme doctor wants to talk to my gynecologist since I have another big cyst, and possibly more endometriosis. My family and I are going to try and go to Lake Tahoe so my brother can ski, and we can snow tube!

Thank you for your encouragement, I love getting notes from you all. I check everyday, even if I'm not able to post. I love you all so much!!

Wednesday, March 16, 2011

quick update

Just wanted to say that things are going okay. Im sorry that it's taking me forever to post a real update! I've been so exhausted and out of it from the pain and pain medicine. Being in so much pain is very tiring. I've also had fever, which wears you out. My dad and Landon got here last night, so that's been great!

Hopefully I'll feel like posting more very soon. Thank you for your prayers and encouragement. They mean so so much to us!!

Tuesday, March 15, 2011

in the hospital in Reno

Yesterday and today have been horrible. My Lyme doctor just sent me to the hospital here in Reno. My dad and brother are on the plane, and will get here tonight. I'll try to keep you updated as much as I can. Please pray. It's so weird being in an unfamiliar hospital

Sunday, March 13, 2011

Weekend update

Friday night we went out to eat with the family who has the boy my age. We were at the restaurant until 10 that night, just talking!

Yesterday was a crazy day. On Saturdays, only a couple nurses are at the clinic for a few hours. So we got there yesterday morning, and found out that I had no orders for what I was supposed to do. We went ahead and started an IV in my arm, and began the Vitamin C IV. I'm not using my port right now because I have a terrible rash around it. We started talking to the nurse and found out that if I needed the pain medicine (which we knew I would), that I couldn't get it because the doctor wasn't there. We immediately stopped my IV, and I just got my shots and left. We wasted a good vein in my arm! They did talk to the doctor and he got me a prescription of Loritab for the weekend, and to try that instead of IV pain medicine during my IVs.

My mom and I decided to drive to Lake Tahoe yesterday for a couple of hours to look for ski pants for when my dad and brother come. It's only an hour away from Reno. We went to a few stores, and ate there, and then came back to Reno. The lake is so pretty!

Tomorrow, I am supposed to start The Push at the clinic. The Lyme tricks the immune system, and shuts it down. The Push is a shot that stimulates the immune system to fight the Lyme, causing a reaction. The shot goes in a vein in the arm, and you get it right before you leave the clinic each day. Since it helps your immune system to kill the Lyme, it causes you to be very sick. It takes about an hour to hit after you get the shot, so you race to the apartment to get ready. First, it feels like ice is running through you and you start shaking like you're having a seizure. That can last for several hours. Next, the migraine and body pain hit to where you have to be in a dark room and you can't even move or walk because you hurt so bad. I also get jaw pain, so I don't want to talk. Your fever goes up really high. This lasts all night.

Everyday you decide if you want to go up on the dose of The Push, or stay the same, or go lower. They make The Push every weekend, so it's always stronger at the beginning of the week, and the strength is always different. It's different for everyone too.

You are encouraged to ride it out for 6 hours each night, before taking any medicine to bring down the fever. But at anytime, you can take a bath in apple cider vinegar, and that will draw out the medicine and toxins and stop the shaking. Sometimes you just can't handle it anymore, so you have to do this or take pain medicine. The pushes have been really strong lately here for everyone. It leaves some unable to walk for a couple of days, or in extreme pain. You also get very dehydrated from not eating or drinking during the reactions, so they give you fluids at the clinic along with things to help you feel better.

I'm supposed to start that tomorrow afternoon, so we'll see if the doctor still wants me to start it. If I do start it, I most likely will not update until Tuesday unless I don't have a reaction, which can happen. We will see how it goes!