stories of a real life wonder woman

I know I am late on my normal Sunday post...but I tried to go to bed early last night since I am still sick with the cold...note that I said I tried...I ended up coughing most of the night so that didn't really work out... Let me clear something up reals quick though...everyone keeps asking me how I feel from my surgery...I feel fine in that aspect...great actually...I can eat without massive stomach aches...it's kind of a big deal...the only reason I feel gross right now is because of my cold... I sort of feel like I should post something about the past year/the new year...but I don't really know what to say...I mean I don't make resolutions...I figure if I screw something up during the year I should try to fix it then...not wait for a set date to tell everyone I am going to change... I am hoping for some things in 2013 though...like to be off dialysis...to have a new kidney in my body that works...then maybe get a real job...and maybe travel with Nicole...I know...

Everyday is a new adventure in my life... On Wednesday I got done at KSB getting blood around 9 and then we got done with dialysis around 12:30...and this is at night...and originally we were thinking no big deal we don't have to leave early because I don't have to be at OSF until around 1...but then I got a call telling me to be at OSF around 10 am because my surgery got moved up...so less sleep but done sooner...not a bad pay off since originally we didn't think we would be getting home until maybe 8 at night on Thursday... Anywho...we got there and got checked in...they got my IV in right away...no problems...and they didn't know for sure when I would be going in for surgery but it ended up being a little after noon...and originally they said it could take an hour and a half to two hours...I guess I only lasted about an hour...so that's sort of nice... When the doctor talked to my parents he said the mass was really big and he had to take it out in pieces.....

Today I am sitting in a bed at KSB hospital to get a blood transfusion...I'm going to be here pretty late since I am getting two units over 3 hours each...kind of frustrating but I need it for my surgery...I will be here till maybe 8 or later and then I have to go home and do dialysis... And then I found out I have to be at OSF tomorrow at 10 in the morning...for my surgery that is scheduled for 2:30...maybe they are moving it to earlier in the day...so today will be a long day...and tomorrow will be a long day...so being grouchy tomorrow may be upped a notch..at first it was just going to be because I was hungry...but now I will be tired too...I will just be a joy to be around... Also I forgot to mention in my last post...If you think of it it would be really cool if you all would wear your BB shirts if you have them...or purple..tomorrow - that's Thursday...in support for me...I am pretty nervous about this especially now with needing to get blood last minute...I really w...

It's getting really close to Christmas...and I keep forgetting because I have had so many things going on with trying to get things set up and ready for my surgery...trying to figure out everything with my classes that are starting soon...and then dialysis while I am at U of I for a week taking the first class...it has kind of been a bit of a headache...and I was trying to think what would get me in the Christmas spirit...and I thought of the Peanuts...you know with Snoopy and Charlie Brown...we watch those Christmas movies every year...and every time I hear the passage about that little baby king being born into the world I think of this... Sometimes it blows my mind to think that God came down to earth to be Emmanuel - God with us...that he wanted a real relationship with us...he wanted so badly to restore what had been broken...that he sent his son...what a precious gift...what an act of love...thinking of this has helped put me in a good mood for Christmas...so has thinkin...

I had an appointment today with my kidney doctor...and well there really isn't anything to report...I mean we did talk about a lot of things but there is nothing new to report...he is happy I am having this thing removed from my stomach because he said swelling can prevent red blood cell growth and he thinks I could be losing blood from it...I also told him that my kidney felt hard and sometimes it hurt...he told me to keep a close eye on that because it could mean rejection...and more problems for me...he told me side effects to be aware of and call them right away about if they happened so that I could get into see one of the surgeons to get my kidney removed...but having my one kidney removed can cause a lot of problems too...I am praying that this kidney can hold out a little longer till we find a match...and would appreciate your prayers for that as well...he seemed really concerned when I told him I was having kidney pain...which makes me feel like I really need to pay attent...

I've tried to start a blog twice already today...but both times I didn't like anything I wrote...and while that is normal for me to not like what I write...I really didn't like it at all...it wasn't one of those 'this probably makes no sense but whatever I am posting it anyway' times...instead it's been a general overall disgust for anything I may have to say today... I even had my friends and my mom try to help me with ideas for my blog...they suggested that I post about them being over (Taylor and Nicole) and Taylor crushing Nicole's dreams...or about Cory and Nicole helping me fill out my personality profile thing in church today...and how we all know I am impatient...or about trying to figure out my schedule for when I have to go to U of I for a week for classes and fitting in dialysis with them... And though those things make sense to post about and would be things that I would normally post about...I'm not feeling it today... I have said ...

I guess I should tell you about my doctors appointment but nothing really happened...my doctor just seemed pretty convinced that my mass could be removed with the scope so that I don't have to be cut open...which is nice...and he kept stressing that I really need to the mass removed...which I get because I am the one who is in pain... I have been trying to get in the Christmas spirit...it works sometimes...at first I was wrapping present but that didn't really work because I wrapped over 30 present...or all the presents under our tree...and I kept thinking about how in the past it seems like I can only wrap the presents wrong...according to some people...so if I hear any complaining this year next year everyone is getting their presents in plastic bags...so that sort of killed my Christmas spirit...then today I made a gingerbread house and couldn't stop laughing the whole time...I also had to remind myself that Christmas is not about what people think about how I wrapped ...

Some of you have heard about this but I feel like I should post about it because I am so excited...I got into the master's program for library and information sciences at U of I...I didn't think I would...but I did...guess my recommendations and grades and everything else out weighted my super crappy GRE score...so that feels great...I am excited and nervous all at the same time...I wonder if I will be able to take on a work load while I have my transplant but I did do homework before in the ICU when I should have been dead...and I am trying to remember that as I look forward to classes...I also have to remind myself that I have Jesus on my side...so we've got this covered...I really can't get over the fact that I got in...it feels good because I really feel like this will be a perfect fit for me...it feels good to feel like I finally know what I want to do with my life...and now I don't have to pay a bunch of money to retake the GRE or to re-apply...so that feels g...

That I am super grouchy...so I am going to try to not be a negative Nancy but that might be hard... Can I just say you guys cracked me up with your use of amaze-balls...too fun...I loved it so much and it was making me laugh so much...definitely the pick me up I needed...If you don't know what I am talking about then you missed Thursday's post...which means you should check it out because I talked about my doctor's appointment from this past week... Also we are getting ready to order shirts...we only had one person pre-order a kids shirt so we probably aren't going to order any...but again if you want a shirt let me know... Another quick note...I have an appointment with my GI this week...so that should be fun...it's on Thursday and I have to leave the house pretty early to be there on time...I am sort of not looking forward to it because it will be early...but also looking forward to it because I can ask him questions about my surgery...so that should be nice...

Ok so I had a doctors appointment yesterday and we talked to him for a long time because mom and I wrote down a lot of things to tell him or to ask him about...at the start I told him right away that sometimes I don't tell him things because I don't want to be a complainer or a difficult patient...and even though I could care less if anyone else likes me I really want my doctor to like me...what is that all about...I told him that and almost started crying because that's how anxious I have been getting about telling my doctor about what is going on with me...then I started going down the list and some of it he said don't worry about it...some of it he changed around my meds or put me on more meds...like I am on what is called a binder now because my phosphorus is high...which is what is making me so dang itchy all the freakin time...I am happy about that...even though I have to take that pill with all meals and snacks...unless they aren't high in phosphorus...I told...

So at camp this past summer I had to do dialysis while I was out there counseling and Gary Gordan took a video of it for me...well a couple...that I thought maybe they were going to show at camp but it's probably a good thing they didn't because it's kind of gross to watch...like I said in my last post some people had to leave the room while we were watching this video at the house so be warned...this first one just shows the size of the needle that I get stuck with...it's call a 15 gauge...the smaller the number the bigger the gauge...IV needles are like 20 gauge I think...and those are bigger than needles they use to draw your blood...this ones a beast though... This is the video of me getting stuck...so don't say I didn't warn you that it's kind of gross...(ps my grandparents who I know are reading this probably shouldn't watch this because I know you hate to see me in pain)... Then the cartridge...which has the filter and all the tubing on i...

Before I forget I should post this...   We have decided to start doing a pre-order for shirts...we are not sure yet what the price will be but we are thinking somewhere between $10 an $20...the more people we have order the shirts the cheaper we can get them...so if you are interested in one text me or write on here or on facebook or something that you want a shirt or shirts for someone else and let me or mom know what size you want... Also I will most likely be posting a blog later in the week with some videos on it because they are taking forever to load right now...they will be videos about my dialysis...like me getting stuck with the needles and stuff...just to forewarn you now we watched the clip towards the end of my graduation party last night and a couple people had to leave the room because it was making them feel sick...you don't see and blood squirt out everywhere but the needles are pretty giant and it does look gross... Speaking of my graduation party it...

I'm spending the day before Thanksgiving in the hospital because my hemoglobin decided to drop pretty low again...two weeks ago it was 7.4 today it was 5.9...so that's great...I am glad to be getting blood...I won't be able to test for transplant against anyone in December but I know this blood is keeping me alive so I am trying to be happy about that... Also I have an appointment on the 27th of Dec. to get the mass thingy in my stomach removed...and that's with the the endoscope which is what I wanted...I am excited about that...it's about time that thing was pulled out...I know it's not cancerous but it is causing some pain and such so I would love to have it out now...also in my mind taking that out means I am that much closer to getting a transplant...don't know if that's true or not but it should be a step towards feeling better and I am all for that... I was thinking I should post about things I am thankful for since Thanksgiving is tomorrow......

So if you haven't noticed I haven't been having the best week... I think I talked to the doctors office at least once every day...which I guess was needed but was annoying...I haven't had any other chest pain so they decided I didn't need to go in...especially because I think the chest pain was anxiety...which obviously is totally great... And then I had some problems with my application...that I think I maybe got worked out...but I also got my GRE scores back and I did terrible...especially on the writing part...which surprised a lot of people since I write all the time...and they say I'm good at it...but I am pretty sure I misunderstood the directions...and that's when my hemoglobin was low...I mean I seriously almost fell asleep during the test...so I am trying to not beat myself up over the bad score but I am upset about it... So with this upsetting down week I have needed a lot of encouragement...which I fell weird asking for... I think some of my f...

So yesterday I posted on facebook that I was having a crap day...and I know some of you were probably like what's going on...so here's the scoop.. My day actually started out not that bad I went to KSB to get my last dose of iron IV and all the nurses wanted to see me and stopped by my room just to check in on me because they love me...like I said before going to the hospital is like going to Cheers... But then things got a little crazy after that...I should say first though that for quite a few days my side had been hurting where my kidney is and then my heart started hurting a lot on Monday...but it was really only that day...and I thought I told my nurse this but evidently I didn't...it's hard to remember who I told what since I have so many nurses calling me all the time... Anywho my mom had called one of the nurses earlier in the day freakin out so then another nurse from the same office called me back...and she was all like you didn't tell me this stuff ...

I'll get back to why...but maybe first some fun things... Like my story from yesterday morning...I had just gotten up and I was getting my meds ready while singing to myself...normal morning stuff around here and for some reason both mom and dad were gone...but I started thinking how funny it would be if Zachary Levi knocked on my door...and then someone knocked on the door...so I jokingly was like "God, is that him?"...but instead it was a Jehovah witness...mind you she was really nice but still a Jehovah witness none the less...so after she left I was like gosh I should have stayed in bed for another half an hour...or not messed around so much and gotten in the shower sooner...or not have been day dreaming about Zachary Levi showing up and I wouldn't have answered the door...I blame him for the Jehovah witness at my door... What else has happened this week...I went to my brother Kenny's open house...and we made him some fun house warming presents...like a po...

But it's not really...I didn't want to get out of bed for anything today...but I did because I had to vote and I had to go to the hospital and get my iron Iv...tomorrow I am hoping to go to the hospital to get some blood so that I don't feel like I am dying with no strength... But on the plus side I thought I would tell you some fun things that happened recently... On Monday I was getting ready to go to the hospital to get my blood drawn and I was scrapping the frost off my car with an American Eagle Rewards card because I don't have a scrapper...I know that's bad when you live in the mid-west...I lost mine somewhere...anywho I was doing that and all the sudden my friend Jon W appears to help me scrap my car off with a REAL scrapper...I sort of thought it was funny that he appeared out of what seemed like no where but he was probably dropping his kids off at school or something and then passed my house...so that was a blessing... And then when I was at the hos...

I'm just gonna say it and to some of you that's no surprise...I feel like crap pretty much the majority of the time and I really think I need blood because I need to be able to live to transplant time...I can tell my hemoglobin is low when I want to nap after just walking up the stairs...ick...and having a low hemoglobin is making me super emotional...I keep crying over stuff I have to deal with all the time...like the other day when I was getting stuck with my needles...crying...today after talking to my grandparents on the phone and knowing they were upset because I am so sick...crying...and even now as I type about crying...I'm crying... This week it hit me kind of hard that I have been on dialysis for a year...well over a year by a little bit...kind of stinks for reals...last year around this time we were thinking I would have a transplant before Christmas...now a year later we are hoping for the same thing...and well I don't think we thought we would be in this p...

Has been a little crazy... First I should mention that when I came home from BOND on Sunday I weighed 54 Kilos and my dry weight is set at 50.5...so that means I was 3.5 or about 6 pounds overweight...full of toxins that my body couldn't process out and they was pushing on all my organs making me feel horrible...and then we had a hard time getting the weight off on both Sunday and Monday with my body barely registering anything was coming off...so I went to bed with swollen feet and a swollen back...which is gross because it looks like I have a tumor and that toxic fluid just moves around when I move around in my sleep...not pleasant...and then I had the polyp thing found on Monday...making that day totally great...and then Tuesday I was at the hospital to get my iron IV...and I had to get my hemoglobin checked and I had extra toxic waste weight still hanging around...and well my hemoglobin came back 5.3...and Dr Sader decided to wait to see what my hemoglobin was like the next d...

But I thought I would let you all know how my endoscopy went... Some of you know that this time last year they found a large and in charge ulcer in my stomach that was swollen a lot...almost so much to close off my stomach from my intestines...thankfully it didn't get that large and in charge...but it did cause a lot of pain when my body was trying to digest things and it still does every now and then...they checked it a few times to make sure it wasn't cancerous and it wasn't... Well since it's a year later they wanted to check it again...and I think we were all expecting it to either be gone or to be a little guy now...it's not...so he took some biopsies again to see if it was cancerous but he doesn't think it will be... But because it's a year later and it's still a beast I have to go to an appointment in about 4 weeks to talk about my options for removing it...he said today that he wants to do that since I am young and have a lot of life left.....

This weekend was BOND at RRBC...it's were people from Senior camp get together in the fall to have a time of refreshment...and even though I am pretty sick with a cold it still was great...one of the things we did right away on Friday night/Saturday morning was watch this video of Senior camp... My friend Chris Padgett made the video...he's the same one that took those amaze-balls picture of me...and well needless to say we loved it...I can't stop watching it...I love the part where you can see my cabin praying with our hands in the middle...and I love hearing Gary speak at the end with the road to camp showing...SO COOL... In this video I told my future self to expect great things...and I am finding that is something I still need to work on...I tend to fear the worst...I told my girls a little about this when I felt like I had a great little nugget of wisdom for them the other night and as soon as I shared with them I started to fear that I am never going to have an...

The past few days have been a little nuts...so if I seemed out of it and unresponsive it's because I didn't really know what to do or think...also if you talked to me and I didn't tell you about what I am about to write about please don't get mad...we weren't really telling anyone what was going on for a lot of reasons...of all the people we know I think we only told maybe 7...and it was family and then people my parents work with in case they would have to leave quickly... So here's what happened...late Sunday night I was super tired so I was trying to sleep when my phone rang...I didn't know the number so I didn't answer...I don't normally do that because I know it could be my doctor or someone calling but at this point I thought who would be calling me from the medical field at this time...even though I knew it was a Peoria number...a little bit later I heard my mom's phone ring and she answered because it came up on her phone as OSF...while...

I am realizing that I am having a problem with relaxing...sounds weird I know...but I get it from both my parents...I joke that neither of them know how to take a vacation...or sit still...and well that's becoming me...which isn't really good because when you are sick you need to rest and not do so much...but I keep telling myself I have to do stuff because I told people I would do it and I can't back out of that...the reality is though that I haven't made any promises and everyone around me understands that one day my health could be stellar and the next day it could be shitty...and well my health proved that again this weekend...with my hemoglobin dropping down to 6.5...so we thought I was going to have to get a transfusion...but I didn't which is great...but then I came to the realization about the whole rest thing in church today when I was standing there singing thinking I feel like I could maybe pass out...number one sign you need to slow down in life...but al...