stories of a real life wonder woman

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...