Friday, March 30, 2012

Some Spring Break...

Well I didn't really have a good spring break. During the weekend I relized that I was having a hard time swallowing. I just thought it was cause I had a sore throat and then went on with the week. By Monday I wasn't able to swallow at all and everything I tried to drink or eat I would aspirate and spit up. Along with this I was still unable to do g tube feeds. My mom called my GI in a panic to see if he could get me in sooner than May 14th. The rescptionist said she wasn't suppose to do this but she said that if we come into the Altamont Springs office by 8:15 Wednesday morning then she would put us on the list first patient. My mom said YES!

Wednesday March 28, 2012:
I stopped my feeds about 6:00am and got dressed and we headed to Orlando. We got to the office and waited there for about 20 minutes and then I saw Dr. Sanjay. He was so nice an completly understanded. He said he would call his collegue to see if they could do the prodecure under IR today. (wednesday). We were so thankful. He then sent us to Florida Hospital in Orlando. We got there and waited in the waitng room for maybe another 20min and then they called my name. We went back the room and I got changed into a gown and they started an IV, which took them 5 tries. It was then about noon. The nurse said that they couldn't do the procedure till 2 because of when I got off my feeds at 6am. That stunk, then we waited for 2 hours and the radiologist came over an told me they were going to give my versed and fentl and do the procedure while I was awake. I had no problem with that. It was better that way cause I react to anestia. So they take me back to the IR and they give me the 2 medications and from what I am told, I had multiple medicated induced seizures. I can remeber the young kid raidologist saying "this is the first seizure I've seen" (when I woke up.) They sent me then to the ER. I blacked out a bunch of times in the ER. The ER dr was so confused on why they sent me down there. They then said they would put in a consult and the raidologist would have to deal with me tomorrow. So they took me up to a room. I can't really tell you much else that day becuse I don't remeber. But I do know that I had a very nasty nurse that night.

Thursday March 29, 2012:
They came and got me around 9am and said they were going to use the same medications to do the procedure. I was like no that's not happeneing. The nurse then said that anestia was going to come down and talk to me about using other form of general anestia. I don't remeber alot. Sorry, but my mom told me that they got the GJ button in and then in recovery I had very scary seizures. She said I was foaming at the mouth and vomiting and shaking and they were alot worse then the day before. We went back up to my room after the procedure was done. They said they were going to keep me over night and I said no and refused, espescially when I found out I had the same nasty nurse again. So we left the hospital around 10pm. I got emotional on the ride home. Just really scared for the Lyme treatment.

Lyme Treatment: 
I talked to Dr. Fox my lyme doctor today and basically I told her about my seizures which she says that a lot of her other lyme patients have seizures and the doctors can't figure out what they are either. She says she called them lyme seizures because the brain gets mixed messages because of the lyme. Anyway I am going on Lamictal (seizure med) and she said it might help the swallowing since she thinking that it is due to inflammation in the nerves. She said the Lamictal will help my RSD but maybe not my seizures. Anyway I am suppose to titrate up on to it. And I will start the actual treatment in 2 months.

Yes I am very scared. Terrified! It's so scary on what you don't know. Does that make sense? Idk. Well today was a resting day. Running feeds into my j tube at 75ml and hour! Had some seizures today but they were short and small.

thanks for all the prayers,

Sunday, March 25, 2012

Red Hair

I have red hair. Yes red. I dyed it on Friday and it was called intense auburn. It was a reddish orange color. I decided to dye it brown but that didn't work. Now it is a purplish brown. Oh well it only lasted 8 weeks.

As you may know I have decided to do the Lyme treatment. I am so scared. I have never been so scared in my life. And when I talk about it I cry cause I'm so scared. I just hope you pray for me. Right now I am just doing the part were I prepare my system with supplements and other medications. But in a few months I will start the treatments. 

I will take a year and a half off EMT school till I am done with the treatment. Because I don't know how my body will act I am not sure how much schooling I will be able to handle. But I intend to be a part time student while in treatment. (If I can handle it.)  

I still hope I can go to summer camp 2012. I am really excited about that. Well that's all for now. I am super exhausted so I am going to take a nap. TTYL.

PS. I am taking a lot of pills. LOL. 13 in the morning 17 at night. crazy eh! Pray for me.

Love always,

Tuesday, March 20, 2012

Talk Radio?

I am a girl who likes music. Christian music and Hillsong United is my favorite. But what have I been listening to? Yup, talk radio. The preacher stuff that my mom listens to. I enjoy it! I never thought I would. I always thought it was boring. But I look forward to it when I drive to school. I get a little tid bit on my short drive to school I should say. 

I saw my PCP yesterday. She is setting me up with this GI doctor that will do the surgery. It couldn't come any sooner. I am like dying here. Haven't been able to keep anything down for almost 2 months. My throat is raw and bloody. My stomach constantly hurts and I am nauseous. I am trying to eat though don't get me wrong. Sometimes when I am not nauseous I get so mad and just eat whatever I want but then it just repels back up. It's frustrating when you don't want this to happen and it happens. I am not sure the plan yet til I see this dr. However he is associated with Orlando hospitals so I would probably have to see him in Orlando to have the surgery, which stinks. My PCP said my UTI is clearing up, praise the Lord. However my tube infection is back and I will see her again to make sure its just stomach fluid.

This weekend is my spring break. I am looking for a job so if y'all know any good jobs out there for me please speak up. I may have a temporary one till I can find one. My best friend is also coming this weekend and we are going to the fair. So excited!

I went to Vocational Rehabilitation today. This is an agency that helps you go to college or a tech school and they help you pay for some if you don't apply for finical aid.  The lady said something to me that really really mad. I am not going to say it, but it made me so mad that I actually thought about leaving the office right then and there. SO MAD!!!

Anyway, how is life without my IPod you may ask? It is filled with God. I have never felt closer to Him. I thought that I would have a problem with taking it away and I still do but it's not as bad as I thought. I simply powered it down and stuck it in a drawer. I was going on Facebook 10 times a day. Now without it I get on once and sometimes not at all. It is great to have God then to have something of this world. Ya I may have Facebook for 20 years+ but I will have God for eternity! 

I just want to put these lyrics at the bottom:
I called you answered
And you came to my rescue and I
I wanna be where you are
Love Always, 

Sunday, March 18, 2012

Complete Surrender

This weekend was amazing! I had sooo much fun.

     I left around 3:30pm on Friday afternoon. My group got left behind because the driver forgot about us, so we didn't get to the camp until 6:30ish. I ate my sack dinner when I got there and then we had some free time. And then we headed to the chapel. That night we started to discuss Jeremiah 29:11. Now let me just say that I had a lot of things on my mind the begining of this weekend. Somethings I wanted to get over but didn't know how and I would say I was spiritually confused. We had worship which was so great and so meaningful and it just spoke to my heart. After we had worship and the message we had discussion group to talk about the message and how we were going to apply it to our lives. Then we headed back to our cabins for devotions. Then we went to bed. And that night I was super tired and running a fever so I fell asleep quick.

    We (me and the girls in my cabin) woke up around 6:50ish. When the lights came on I saw Pastor Ann shrug like she wasn't ready to get up yet. It made me laugh. We got up and did our devotions by the lake, then we headed to the dinning hall for breakfast. Breakfast there wasn't that great. I often did my can feedings. (not like anything is helping though, more on that later.) Anyway after breafast we head over to the chapel for morning message and worship. The message Saturday moring was about what structure of the house you need work on. Mine was I need work on my walls. I have the structure of God in my life but my walls are breaking down. The little things in life are falling thru. Then after message we got free time from 12-5pm. The girls in my cabin were going to put there bathing suits on and then go to the lake. I told then to wake me up when they leave, but I guess they forgot or something because I got a much needed 2 hour nap. I woke up around 2ish and head over to watch people paddle boat. I wasn't feeling great due to the infection, but as the day went on I started to feel better. After I talked to one of the concelors for a while I decided to play mini golf and then human Foosball was scheduled for 4 but it was no longer there. That was disappointing. But instead, we played a game of soccer. I love soccer and the game just showed how much I missed it. Our team won 5 to 1. I learned that I kick really well with my left foot. Surprising because I'm right handed. Anyway, well since it's soccer I get competitve and I kicked this little kid in the nuts and another kid in the foot. (totally on accident). I felt real bad too. We took shower and head to chapel. I walked in to the chapel and I had this tug on my heart to forgive this person in my life. I kept saying to myself "no I'm not going to do that, no, little voice go away." We started praise and worship and I felt the same thing over and over again. And once again I said, "NO God I don't want to do that!" Tiffany preached to us on our 'idols' and how we "worship" them more than we worship God. She made us write our idols on a piece of paper and then when we were ready we had to bring them to the cross. For me my idols are self image, and my IPod and bitterness. I went to the cross and pored out my heart to Christ. Telling him that I no longer want to be captive to these idols, and that I know these idols are keeping me away from my time with Him. I bowed at the cross for quite some time just praying and asking for forgiveness. After the sermon I went and called that someone and forgave him. After I surrendered I felt a huge weight lift off my shoulders. We then went back to our cabins to do devotions. I was in a super happy mood and me and my friend were laughing with each other. It was great! 

Sunday morning (this morning) we woke up and head to devotions by the lake and then to breakfast. I am sooooo sore from the soccer game. I feel like an old women trying to move my legs and sit down and stuff. After breakfast we headed to chapel for our last session. We had praise and worship and a message and communion. We had discussion group and then we left. We arrived at the church around 1. 

I can't even explain how much fun I had. I can't wait for Summer Camp!

"For I know the plans I have for you," declares the LORD, "plans to prosper and plans not to harm you, plans for 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 with all your heart."
Jeremiah 29:11-13

Love always, 

Thursday, March 15, 2012

News on the hip

     So the GI was suppose to call me this morning and he didn't. I called the office around 2 and asked to speak with him. I then realized he was doing procedures all day and wasn't even in the office. Anyway the nurse paged him and he left a voicemail on my phone. (I fell asleep and didn't feel like answering it.) The message said that he wanted me to call him in the morning around 7am. Whoo that is early for me. Because I wake up at 9am. I will probablly make the phone call and then go back to bed.
I went to the OB/GYN. That was an experience. Things went well though.

     When I got home there was a message on my home phone. It was the urgent care doctor I saw Sunday night. She said that she wanted me to call her about some test reseluts. The only thing I could think at the time was that she read the x-ray wrong. So I call her and tell her my hip is no better even after the 800mg of advil. She says that she thinks she knows why. I have E Coli in my bladder. A UTI. She said it is rare to get just pain in the hip region. Thing is...Yes you are probablly going to say I am so stupid. Well I have decided not to take the antibiotics till after I get back from spring retreat. It's just the Cipro she prescribed doesn't go well with my stomach and I don't want to have extra problems while I am at camp.

     Camp is tomorrow and I am really excited! I need to go pack now. TTYL.

Love Always, Kari

Wednesday, March 14, 2012

A doctor who understands

     So sorry to everyone who was reading my blog and then I deleted all my posts and stopped writting. I am not sure how often I will post, but whenever there is a lot of stuff happening I'll try to post then. This blog is mainly for my medical stuff, to help my friends and relative kept up and such but other things in my life will briefly be mentioned
     So as you may not have known I went to a camp in Missouri for 3 weeks to get in touch with my spirtualality. I left February 3 and came back February 23. The last few weeks I was there I notice I had some kind of infection around my G-J tube and it sent me into a flair up. I got home and went to the doctor and she tested it and a few days later it came back to be MRSA and Psuedomonas. I then was taking antibiotics for that. I ended up starting my J-tube feeds to give my stomach a rest. About six days later I was flushing my G-J tube and the balloon burst and the whole tube started coming out of my stoma.

       I then had to go to the ER in Orlando. My GI did not want to do the surgery that night to replace a new G-J tube so he put in a temporary G-tube. He then told me that, me and him would talk about putting a new G-J tube in the next day in the clinic. So the next day comes. I see him in the office, kinda mad, becuase I have a feeling he is not going to do the surgery. Anyway I go in and he is talking to me saying, well I know you have flair ups every now and again and sometimes you are not using the tube and that he wanted to see how I can just handle with a G-tube. I was going crazy saying it's the same as if I was eating and blah blah blah. I then asked if I could get an NJ tube for a month to see how that would go and he said no. He said he didn't want me to go under anestisia. I asked if I signed the paper to do no anestisia would he do it and he still said no. He wouldn't even do the NJ tube which does not need to be done with anestisia. It can be done in IR. Or even an ND tube might have worked. Nope. You wanna know his idea?... Ya ok he said, "I want you to do 15ml for 16 hours." I'm like your crazy! That is 250 cals a day! No human can survive with that many. He told me I could go to somebody else if I wanted to. So that is just what I did. And that is where I am trying to get to because my appointment was today. Let me just finish this and I'll work my way to that. Ok so anyway, I couldn't eat so I HAD to do what he said. I did 250cal a day. That is 1 can of Peptamin Jr. Yuck! After my stomach got 100ml I get so nauseated and vomit. It is awful. I am still doing that. I have been doing this for 3 weeks. I had to go to urgent care one day last week because I was severely dehydrated. I got my PCP to write me a presciption for IV fluids so I can go whenever I feel that light headed spaced out feeling.

     So today I went to see the New GI, Dr. Koretsky in Melbourne. My friend told me that the wait was going to me super long so I brought a book from my Sunday school class hoping to get some chapters read. I sat down and read two sentences and my named was called. Wow! And the doctor came right in. We went over my medical history and my Gastroparesis history. I told him everything my previous GI did. He was shocked to think any GI would give a patient with GP a G-tube. So what he told me was that he has never done a G-J tube placement but he was going to get someone locally who could and he would call me in the morning. The plan is to get a G-J tube. If I can't get it soon (perferablly next week) then I will get a NJ tube till I can get the G-J tube. I really like this doctor and I think he is really helpful.

Ha I also went to urgent care Sunday. I thought I had fractured my hip. The doctor was more concerned with a hernia then my hip. After an x-ray it was confirmed that I had a hip strain. So I have to take a break from spinning, which I am super bummed about. I took this week off and might have to take next week off too.

Ok one more thing. I am going on Spring Retreat this weekend. It is 3 days. But I am super excited. There are I guess water sports and human foosball. I can't wait!

Love always, Kari