It's been a long week

Which means I am not sure where to begin...I wrote down a lot of different things I could talk about...I'm not sure if this post will end up being really long because it contains it all or if I will break it up and post multiple times this week talking about the past week...(I'm adding this after finishing...I put everything in one hopefully it's not too long...it took me forever to write I kept getting distracted or losing my train of thought...and now it's late and I don't want to proof read this so I'm not going to...enjoy all my spelling errors or typing mistakes)

This week was long for multiple reasons...I was at camp and it always seems like so much happens in such a short period of time at camp...and I have still been sick with diarrhea and on the phone with my doctors office like everyday despite being at camp...plus I have come to a lot of realizations this week about many things and it's sort of got my slow moving mind spinning...so I'm not quite sure where to start...but since some of them sort of tie together and I have this thing about order I guess it would make sense to start from the beginning...

Even though I still didn't feel good it felt so great to be out at camp...we headed out early on Saturday to get things ready and it put me in a good mood just to be out of the house and feel like maybe I could actually be useful for a while...plus being around people that love me so much is always a bonus...we took out my grandpa's golf cart so that I could use it to get around camp without draining all the energy out of me in five seconds...at first I was unsure about it but then my brothers got all excited about driving it and decorating it so that made me feel good for sure...they even stayed up to work on it...here's a picture of the end result...

It became known as the whambulance or the wonder woman wagon or the BB mobile...not all the decorations stayed on all week but it was still fun...and my brothers loved driving me around too...

For me the best part of the week was probably being around my brothers and so many people that loved me and wanted to support me and encourage me and take care of me and comforting me...I know I have said it before but I really do have the best friends in the world...I am such a lucky girl to have so many older and younger brothers who are always looking out for me wanting to make sure I am ok...some of them more silently then others...but seeing the way they care for me makes me think that they are going to make some girl very happy someday and I love seeing their love for me and for God in the way they care for me...they make me endlessly proud (quick side note on the making me proud thing my brother House and one of my girl friends Jojo got baptised...I cried like a baby the whole time cause I was so proud)...they weren't the only ones taking care of me...my mom as always was taking care of me all the time...I don't know how she did it all...all the things she does for camp as a counselor and as pretty much every one's mom and take care of me...and after I got super sick (bad diarrhea possibly passed out) on Monday morning after we lost power (which we didn't get back till Tuesday afternoon...a challenging adventure we weathered well)...my girl friends Nicole and Annette helped mom take care of me which meant a lot (Annette almost made me cry right away on Sunday with a gift she gave me...a ring that says "say our souls" in Russian on it...she just came back from a missions trip to Ukraine)...I was a mess on Monday but then after that everything felt easy so I knew I was going to push through it all to stay at camp...

Even though they would and have taken care of me no matter what I think a lot of people's eyes even some of my brothers were opened to how sick I really am...being so sick at camp was a blessing and a curse...obviously I didn't want to be sick at camp when I am supposed to be counseling and helping lead worship and do all the other things I do at camp with the campers...but as I headed into my 4th week of diarrhea while knowing for sure I had lost at least 16 pounds (I found out I lost a total of 20 over the past 5 weeks when I got home) I couldn't hide that I was running to the bathroom or that I looked and felt horrible...I looked and still look like I'm anorexic or a skeleton with skin or as I put it like death...I can't hide that I have a super hard time remembering things and paying attention because my body is so messed up right now...I can't lie to people which for me is hard but not being able to lie is a great thing...I can't brush off how I am feeling and say "no big deal" because it obviously is and I can't pretend or act like it's not...no one even has to call me out on it like normal because we all know I can't lie...that was a challenge for me this week because I am a good liar and even though I do like being called out on my lies I don't like the attention that can come with being sick and people wanting to care for you...so learning to deal with that has been a growing experience as well...

I have come to the realization that I need to be easier on people and the ways they react to me being sick...I need to consciously change my attitude with a lot of people...most of the time when people say things that I think are dumb to say that are the typical things you say to sick people I get upset with them instead of thinking about how they are just being polite...sometimes I even get upset when people don't say anything to me at all...I don't give people a break and just get set into my moody Mandy attitude...I need to do something about that...I need to be more conscious of how I am reacting to people in the moment and think about where they are coming from...I don't often think about how people really just don't know what to say because they cannot even begin to imagine the life that I live...like someone said to mom this week "I feel bad that I haven't said anything to you about BB but I can't begin to comprehend what it is like to be sick and suffer all the time I don't know what to say so I just don't say anything"...since I don't know what it is like to be healthy I forget that others don't know what it is like to be sick all the time...and when they have compassion for me I get annoyed by them...I need to do something about that...it's going to be hard I need to change my attitude...I may say that my heart has changed but when my attitude has not then how will others know I have changed at all...if I say that I am different and that I am less jaded or whatever but then still hold on to my massive attitude problem then I still haven't changed or at least not all the way or in a way that people can actually see the change in me...

Part of the challenge of changing my attitude is that when I don't feel good which is like all the time I can be super moody...and even though I can't hide that I don't feel good because I don't look good I can hide things like how my emotions are going crazy...a lot of this week at camp I was battling with a lot of conflicting emotions...like should I continue to stay at camp where I love being or should I go home because I really am sick...most of the time I felt like what do I do...I am here and I feel at times useful but at other times I feel like I am getting in the way of others on the staff serving the campers because they have to take care of me...it was a battle and I cried a lot...especially after talking to the doctors on the phone during the week...though I have been acting like it's no big deal I now have an appointment with a transplant specialist in Peoria in August...which means we are one step closer to a transplant...and truthfully I am freaking out on and off about that and about the future...at camp I was feeling very much like the year had come full circle...I was back at the beginning...last year I was terrified out of my mind about the future and moving to Arizona...this year I was back in the same emotional state thinking about how though I don't know for sure that I will have another transplant within the next year the future is still scary and will be hard...I kept thinking if I can barely make it through camp this week and I really am only going to become more sick how will I make it through BOND in a few months or camp next year...will I even be able to make it out...will I be in the hospital...will I be able to get out of bed...how crappy will I feel...not knowing what the future holds but knowing it will be rough freaks me out more than I would like to admit...

Much like on Friday night at camp last year I found myself crying my eyes out...last year surrounded by friends this year just crying out to Jesus...admitting to him how scared I am and how I know that He can do this and get me through this but I am not sure if I want to go through this because I am tired of it all...then after crying about that for like 10 minutes I made my decision...and this next part will sound bad at first but hear me out...I made my decision and made some deals with God...but they were things he already had plans...it was more like me affirming to myself that here is what God is going to do because here is what he has done before...it was sort of like a little pep talk to myself...and when I say I made some deal with God it's not like I said here's what I will do and here's what you will do in return...I don't play that game...my deals are always here is what we are going to do together cause I can't do it any other way...and I am only telling you these things so that you can keep me accountable not so that I look better in some way...I told Jesus "we are going to actually be honest with people and tell them what is really going on" "we are going to be nice but we aren't going to put up with people's crap because I really already have to much in my life and don't have time to put up with more" "we are going to get through this together even though it's going to be hard" "we aren't going to give up because the decision has already been made but I still reserve the right to freak out and be freaked out because this is scary even with you by my side and having human emotions about this all is ok" "when we get through this Jesus, you, not me are going to change lives through this cause I am not going through all this crap for nothing I don't have to be famous or anything but you have to change lives through this or it's going to feel pointless to me I need to feel like there is some purpose in this" "at the end we are gonna laugh in Satan's face that he can't bring me down even though that may not be your style I need to do that for me" and then instead of saying (I was praying out loud not very loudly though) "amen" like usual I said "lets kick some butt" made me feel good made me feel like even though I am still freaked out I can do this and I am going to do this...and then I got home and was listening to one of my favorite bands Building 429...I turned on their new CD Listen to the Sound to here my new favorite song by them I'm not Home Yet and fell in love with another song titled Walls are Coming Down that I feel like totally describes how I have been feeling about this whole situation...my favorite (which is kind of long) are these lines "let my fear and faith collide cause I don't want to miss the reason I'm alive I don't want to stand at an arms length from the arms that are reaching to save me right here right now his hands are reaching out I don't want to stand at a arms length from the hands that are reaching to hold me right here right now my walls are coming down and I've spent all my life holding back holding back but now I wonder what for I won't hold back anymore"...that's me...I don't want to miss out on why God has me here and what he wants to do with my life because I am scared and I don't want to stay closed off from him or from anyone else that wants to help me along the way...I don't want to look back on my life and think why did I hold back...why didn't I let God use all of me and why didn't I let others close enough to help me or to let God speak to them through my life because I was afraid of having too much attention on me...I don't want to keep wondering why I am holding back and I know without a doubt God's got it all under control...