stories of a real life wonder woman

First I should probably update you on how my doctor's appointment went the other day...it was super great...no for real it was...I got the stitches out of my cath and it hurts way less now cause of that...and it looks really good...healing super nicely despite the pain I was having in it...I am slowly gaining weight as my doctor has been raising my dry weight...that may or may not make sense but if you don't understand ask me and I will explain it...my last blood test looked really good and my hemoglobin was high for me so that good cause it was just about the low end of normal for everyone else...he said I was eating good and to keep doing what I was doing there which is nice cause I am back to eating whatever I want...I don't remember everything else that was good...but he also wants to start me back on epo at a low dose to try and boost my red blood cell count to keep me from getting transfusions...I told him I was ok with trying that but it I started getting major heada

For those of you who don't know I am involved with a youth ministry thing that happens on Tuesday nights at the ministry center behind Bethel Church called Coalition...it's a lot of fun and you should come if you can...and if you already come you know how great it is... Anywho after tonight I have been thinking about a few things that really stuck me...tonight we didn't have a message like we normally do...we played a game that took awhile and then just did some praise and worship...one of the songs we did is the song "None but Jesus"...in the song there is the line "now I live to bring you praise" and as I was singing that line I started to cry because I thought "is that why I am still alive?"...how often have I been so close to death and how often have a wanted that because I look forward to Heaven and seeing Jesus and the hope I have there...and yet I am still here...and how often have a wondered why...and those words tonight hit me pretty

Because I don't quite know what to say...I wish I could tell you that I have been feeling great and have been enjoying life living it to the fullest...but I find myself in a deep rut...upset about everything...not knowing how to change that...it's not that I feel physically sick and gross because for the most part in that respect I have been feeling good...and I have been doing things to try to enjoy myself and have fun finally getting out of this house once and a while...like I went bowling/laser tag playing with some friends on Saturday and then today I went to the mall with Nicole...but I find myself still just feeling out of it and like I can't get happy...I don't really know how to describe it expect to say that on Saturday when I was at the bowling alley with some friends we were laughing and having a good time and as we were sitting their out of nowhere I felt like I was just going to completely lose it crying...I didn't because I didn't want to cry in th

First I want to say if you haven't read the post before this from my mom do that right now before reading mine...you don't want to miss out on what she has to say... I'm not quite sure what to say about this week...I've had more downs than ups even though a lot of good things have happened this week...that's the thing though with being depressed...you feel like nothing can get you out of the funk you are in...sure I laugh and I smile and I carry on with people but I still am pretty upset at life right now...so that puts a damper on everything...which is no fun and I don't like at all... Out of everything good that happened this week though (despite my pissy mood) the best part was when I went out by myself just driving...sure I did a lot of other fun things like go to the Saunders ranch with mom and watch The Help with Betty, Nicole and Mom...and Daniel for a few minutes...and I went to the Smorgasbord at church and got to spend time with friends and family.

(guest post from my momma) There are a lot of misconceptions about chronic illnesses.  You don't "get better", "get over", or "get well" from a chronic illness.  You just learn to live with it.  Think of it this way, if someone loses an arm, you wouldn't say, " i hope you get better".  As if that person can actually grow a new arm! When Abby first got sick, at 21 months, both Lew (my husband) and i knew our lives would never be the same.  Abby's first doctors at Rockford Memorial were afraid she would die before we got to the hospital.  Then after spending 6 weeks in the University's Children's Hospital in Madison we quickly learned this was not something she would outgrow.  This is something we have learned to endure.  Because Abby was so young, she doesn't ever remember a day that she wasn't chronically ill. She has only known sickness.   A few health examples: When other kids her age were learning t

I had to go to the hospital yesterday to get a blood transfusion whwn I was nine days away from my six week mark from my last transfusion...I had to deal with Dr. Bruha from Peoria again....and a nurse that worked with him...both of them were difficult...Friday night Dr. Bruha wanted me to go to Peoria and be admitted to the hospital when all I needed was a blood transfusion...when I said I wasn't going to do that instead I would go to the local hospital thats close to my house to get a transfusion in the morning since I wasn't about to leave my friends wedding to go to the hospital...the nurse continued to talk to me like I was an idiot...then in the morning when on the way to the hospital the same nurse called me agian and said Dr. Bruha really wanted me to go to Peoria to be admitted...when I said no yet again she said that Dr. Bruha wasn't going to send orders to my local hospital...so then I told her I would get a doctor from Dixon to write an order...so we had to figu

I am unsure of what I want to write on here...not because I don't have thoughts or ideas about what to write but because I am afraid I will share too much...or that I will share and open up and it will be pointless... So while I try to decide how much of my thoughts I want to share with you I will tell you a little about my Thanksgiving...It was wonderful...I got up and watched the parade...all of it even the pre-parade Broadway stuff...and I loved it...especially the parts where people messed up doing lip sync...I do feel bad for some of them now cause they are catching heat...it would appear that people think that singers actually sing during the parade and don't think about how that wouldn't work very well...just saying ti might be hard to do while on a moving object...sure you could be loud enough for a small parade but this is Macy Thanksgiving Day Parade...there's no way you're going to be loud enough in that one little float...anyways...I did that...and the

Rise from the struggle I've found and this rubble on the ground I will rise - Shawn McDonald - Rise I know this is a little early then I normally post but I'm in the mood to write so I kind of thought why not... First I want to say I am really happy to be home...feels good to lay in my bed in my house...and to have an actual place for all of my stuff...not having that sort of control drives me a little crazy so feeling like I have that back is a plus for sure... Second I should tell you how the appointment on Thursday with the surgeon went...when he saw my arms he did say they were small but not to small for a fistula...but he doesn't want to do a surgery to give me a fistula right now...instead he wants to wait and see what happens with Randy's testing process...he said if Randy and I are a match and I get a transplant soon then it would be dumb to put in a more permanent dialysis sight especially since it requires another surgery...he thinks that would be pointl

Our savior never fails even when all hope is gone God knows our pain and his promise remains He will be with you always - Always - Building 429 I have been thinking about this song a lot recently...I think part of the reason I have been besides the fact that I love this song is that people often make sort of a big deal of my family and I dealing with this mess of my life the way we do...people always say that its encouraging or they don't know how we do it or they comment on how good of attitudes we have about it all...when this happens I often think what else am I supposed to do I have no real control over any of this not even giving up because the only time all of this stops is when I am dead so I can't really give up cause I have no control over when my life ends...and I don't always have the best attitude either...I only really go out when I am in a good mood so I don't snap on people that I don't really know...but I do believe that God never fails and that fo

Part of my day today...it was either when Papa Kerr came to give me a hug right away when he saw me...a little boy named Levi (my favorite little boy at church) giving me a picture he drew for me during church...or napping this afternoon in my bed with Nicole...in other words today was pretty dang great...this whole weekend was because I was out of the hospital and back in Dixon for the weekend...got back late Friday night and didn't do much...then Saturday spent some time with my mom and my sister while my dad and some guys from the church put our new windows in...then my brother sister-in-law and nephews came over for a little bit...then after that Nicole came over and helped mom make pizza...and I got a haircut which I really needed...then my brother Danny came over...it was a great day...and then as I already said today was great... Mom and I are at Taylor's right now...we got here like 5:30 or 6...somewhere in there...then went grocery shopping with her...we haven't

Well my doctor Dr Sader figured out a couple months ago that the things my body does are a mystery and now more people here at the hospital are figuring that out... I've now been at the hospital for this stay for a week so that's awesome...not...but they might have finally figured out what is up with my jacked up body... The other day the GI doctors decided to run this blood test to see if I had this certain hormone in my body that can produce ulcers in the body...they ran that to see if that's why I have the ulcer that I have but they might have just found out much more...the results take a couple days to come back and as of this morning Doctor Sader looked at it and though he is not a GI doctor he was concerned...he did a little research to make sure he was looking at things right and here's what he found out...this hormone level in your body is supposed to be around 100...mine was 1300 something...which obviously is bad...from what I understand from what he said

Well by now I am sure if you are my friend and/or if you read my blogs you have heard I was like 2 seconds form death this week...so I am still chillin in the hospital as of today...they are trying to treat the ulcer in my stomach still to try to keep it from bleeding out and to make sure my hemoglobin (red blood cell count) doesn't drop way down again since they are not sure why it is doing that...hopefully its from the ulcer because that is being taken care of which means it shouldn't be as crazy anymore but we will see I guess... I don't really know what to tell you about this week since I have been chillin in the hospital since wednesday and I already posted about Nicole saving my life that day...being in the hospital is pretty boring...I have been sitting around doing really nothing...doctors come in to see me and order tests done on me like EKGs chest x-rays endoscopies blood tests...other than that I don't do much but sometimes do homework play word puzzles sle

Is a day I think I should always remember from now on... October 26th 2011 is the day my best friend Nicole saved my life... She came over around 9 o'clock in the morning to check on me and found me pretty out of it...I threw up blood yet again and then after getting to the bathroom was unresponsive...she kept her cool and was able to call my mom who called 911...when I got to the hospital emergency room they found out my hemoglobin was 2...people die when their hemoglobin is that low or even a little higher...after getting some blood into me fast I was airlifted to OSF again...this time I remember it though...so even though this time I really was at deaths door I could tell you the story this time...unlike last time where there is like two days that I don't fully remember... Right now I am sitting in the medical icu...I will do dialysis later today and have another endoscopy done to check out the ulcer in my stomach again...they need to figure out why I keep losing so mu

OK so soon after I posted on Saturday night about how much I hated that I was still in the hospital I decided I had had enough and was leaving the hospital wither a doctor signed me out or I signed myself out... I can't really tell you what the last straw was I just was thinking all these things...like how what the doctor was saying wasn't adding up...how he was making me feel like an idiot when I have been dealing with this illness my whole life...how he's not my doctor and he didn't even act like he cared about me...and how in my eyes he tried to have power and control that really doesn't belong to him...when I say that I mean that I feel he tried to do what a lot of doctors do and that's play the God card...let me explain...I have encountered a lot of doctors and some of them can get a complex...because they have all this knowledge and do all these great things like saving lives some of them begin to think that they are like God and it's in their contro

So since I am sitting in the hospital with nothing to do I thought why not blog about my INSANE week... If you haven't seen my facebook wall all week to see my mom's updates that she tagged me in then this will come as a surprise...if you have seen that then this should just be a quick recap... Monday night/Tuesday morning I started to throw up...as the night went on I became very disoriented then last thing I remember I couldn't see anything...I remember I felt around for my phone then turned it on and was holding it right in front of my face but could not see the light from it...mom says that later that night I had a seizure and that's when she and dad took me to KSB ER...there I had another seizure and because of my kidney health history was airlifted to OSF Peoria...pretty much what happen is that the vessels in the brain began to leak into my brain causing swelling which caused the seizures...my hemoglobin also dropped way down and I was put in ICU...Tuesday I

When people react in a more extreme way to a situation you personally are dealing with than you do...makes it kind of awkward...and can be really confusing... Take for example this week...we found out my sister is not a match and therefore not a good candidate to be a donor to give me a kidney...I'm not upset with that because I figure that God has something else planned so this really is no big deal...just because my sister doesn't match doesn't mean that God isn't in control and that He is no longer worthy of the name "healer"...it means that the Healer who is in control is doing something unpredictable that will as always end up great...now I get that and most of my family gets that...but it seems a lot of people aren't as calm about all of this stuff as I am...when they come to me freakin out about it...I feel like I don't know what to do...should I now be upset because they are...this is after all my life they are getting upset about...gosh it c

Yesterday was interesting... I had a really good day and I wasn't about to let anything ruin it...not even the fact that I found out my sister isn't a good match to be a donor... So begins the process of testing other family members to see if they would be a good match...the next choices are some of my cousins... I'm not really upset...I sort of just feel like "ok no big deal moving on"...I think I am used to my plans not matching up with gods plans and I know that His plans end up better than my own...so obviously He has some sort of sweet trick up His sleeve...plus I don't feel like getting upset would help me any right now...I don't feel like I need that release that comes with crying...it's weird I get upset about things that don't matter that much but then I don't get upset about things that are a bigger deal...I keep thinking that the reality of the situation right now will sink in and I will start to get anger or frustrated but tha

I may be an English major but some of the books I have to read for class are boring...plus when you tell me to read something it usually makes me not want to read it...unless I super trust your judgement when it comes to books and that is not something that is done easily...the worst part about that though is that even in those cases I still often don't want to read what others tell me to read...I bring this up not just because of my classes but because I can also get that way about reading my Bible...I am really bad about reading my Bible...I know I should read it...but the more often people tell me I should the less I want to because then it feels like a rule I have to follow instead of being something I want to do because I love Jesus...I really don't like that I get like this where I have this "oh yeah I do what I want attitude" but I still do it and have that attitude and it sucks...when I do read my Bible I love it and I learn new things all the time but for som

Which means I didn't have to start dialysis today... My numbers changed for the better quite a bit and the doctor and mom and I are hoping that we can continue to maintain me feeling pretty good without having to start dialysis before getting a transplant...Ash just did some more testing and if that comes back showing that she is a good match and my health doesn't change to much he said he won't put me on dialysis...which is nice... He changed around my meds a little again to see if that will help with all my ailments... It was a good appointment and I am relieved that I didn't have to start dialysis and yet I am not...I know it doesn't make sense but I am at a point right now where I don't really know what I want...I just know I want to feel better...I want to have a transplant as soon as possible so that I can feel better longer and not have to deal with all this crap...as for dialysis...well it does suck and I hate it...but I know it will make me feel b

Before I get to far into this note...cause I actually have some fun things to talk...but before I get to the fun things I want to give some more advice of how to deal with sick people...well really anyone...well maybe not everyone because maybe it's just me...but it really drives me nuts when people in any situation say "I know how you feel"...when I hear that I think no you don't...you can sympathize with me...you can understand to an extent but you don't know how I feel...you are not me...I say this doesn't just apply to sick people because I personally would never say this in any situation...let me give an example...my cousin Lisa has two kids and a husband in seminary...I can understand that you be crazy and I can sympathize with that...but I don't know how Lisa feels because I am not Lisa...I feel like if I were to say I know how you feel that would take value away from what she is dealing with and then things would be all about me instead of about he

Some sort of balance when you are sick and moody is tough...and in my case it tends to make me more moody... What I mean when I say balance is that fo what to do with my emotions and my experiances...I need to face them and acknowledge them...not dealing with those is unhealthly...yet dealing with them and dwelling on them is unhealthy and well and can make a person seriously depressed...so where is the middle ground...I wish I knew...and I wish finding it was easy... I feel like I have to find a new balance each time something else comes up...like right now knowing I will start dialysis in a week...how do I deal with that...how do I add that to the equation...on one hand I don't want to think about it because it I don't want to acknowledge that I have to do that...it makes me mad that I have gotten that sick and didn't speak up sooner...and it makes me mad that I blame myself for my body being stupid when we all know I can't control it...then when I do acknowledge

Is read the thanks you that artists write in their CDs...I always have...sometimes they say really cool and profound things...so when I bought Matt Maher's new CD The Love in Between I popped it in the player and flipped the booklet open to the thank yous like I always do...and I must say Matt Maher did not dissappoint...here's what he opened with... "One thing I notice as time goes by in life...you really wannna say as mush as possible and use as few words as possible. When you consider that God, who is infinite, summarized Himself in a finite book, it makes you realize how maybe, just because we can communicate, or rather, because we can, means we should be intentional with not only what we say but how we say it." With that being said I am going to try to keep this note short... Though it has been a good week for me physically mentally I am drained...I'm having many mixed emotions about many things...mainly dialysis...I know starting it will help my body b

Since I just had a doctors appointment and I know a lot of my friends and family are thinking "what did the doctor say"...which I am glad that you all care...but I feel like I don't really know what to tell you...so maybe I'll try it like this... Good news we took two pies into the office today for the staff there we got there 30 mins early and got in to see the doctor right away my doctor knows how to joke with us my doctor likes lists like the one I made of all the things that are wrong with me (aka the aches pains and side effects I deal with) He was able to breifly talk things over with the transplant doctor whiel we were there I am off another med my blood pressure was good today I haven't had swelling in my ankles in a while when mom asked if we had all the testing done and had a match how long would it be before a transplant and he said within the next two months hopefully that means I have a new kidney before Christmas we stopped at an apple o