stories of a real life wonder woman

I feel like I still have some things to say even though I just wrote a post yesterday...and I have been trying to write one...but I didn't like it...and something felt off about it...so I decided the best thing to do was to start all over again... It keeps coming to my attention that people seem to not understand how sick I really am...and though it seems like the people who understand the most are the people who have seen me in the hospital...or people who have seen me go from being fine to passing out in a matter of seconds...the people who have witnessed what my sickness does to me...but since I can't really plan to get deathly ill in a crowded place I thought I would try again to explain things with words... The best way I know how to explain it is to say I need a life saving surgery...I need it...even though it could kill me I can't live without it...like a cancer patient needs to get rid of cancer to live...I need a working kidney to live...without it everything I...

It started Monday morning around 3 or 4 in the morning with diarrhea...that lasted until around 2 in the afternoon...leaving me feeling sick the following days...now diarrhea is bad in general...but when you are kidney failure patient that could be a sign of bigger problems going on with your body and kidney...couple that with the kidney pain I have been feeling and I was worried...I talked with my nurse that morning and we decided that I would see if taking some over the counter drugs would help but if not I would be in the hospital the next day...admitted to figure out what was going on...thankfully the over the counter meds helped...I am now taking more of my fiber pill that is supposed to prevent this kind of thing...since I have to take more to keep my body stable I am still a bit worried...also this week we found out that my potassium is low...which could help explain the diarrhea...and my hemoglobin is dropping a bit again...I am getting less stable and I need to be more stable ...

This weekend after a day and a half off of dialysis I had the same amount of extra fluid on me that I did two months ago after three days off of dialysis...we are talking about 5 pounds of toxic waste...how fun... It's not to say that I didn't have fun this weekend because I did...I had a lot of fun...I laughed so much...but I felt like shit before we even ate dinner...that's no fun... I'm having one of those I'm sick of missing out on stuff because I feel like shit times...and those times happen a lot in my life right now... Someone recently asked me what my kidney function was at and I didn't know what to tell them...last time I really heard what it was I was at about 18% function and that was about 2 years ago...before dialysis... At my appointment this week we talked again about how they might have to remove my old kidney because it has been causing some pain...they don't want to have to because that could put back my transplant date...they could...

I've been waiting to post news from mom's appointment Wednesday... We have a tentative date set for transplant...July 15th which is the Monday after senior camp....Mom still has some tests to pass for that to be official...and as we were saying the other day they could possibly have her open and then change their minds about giving me that kidney...it won't really get that far but if one thing goes wrong during testing then everything changes...and I have to find someone else... Other news from the appointment...I have a new transplant coordinator...as some of you know we didn't like our previous one...but she is on maternity leave...so now we have the coordinator we want...and we didn't even have to do anything which was a nice surprise... Mom is working on getting some more of her tests done...after these she will still have some to do like a Cat scan of her kidney...and she will have to get her own kidney doctor so that he isn't biased and is looking ou...

I wish that every week I had something witty to say...something positive to make people laugh...or some great lesson to share that I have been learning...I wish that every time I wrote it would make people go wow...or would in some small way heal my  heart and restore another sliver of hope in me... But some weeks I don't have the words for even a part of that let alone all of that... Some weeks all I have are my frustrations and tears over how tough this life is... Some weeks all I can do is cry out to God in my need...

You know you're having a bad day when every little thing good or bad feels overwhelming...that's been me today...even the good news of mom having an appointment to go talk to the transplant doctors because they are still considering having her be the donor after her latest blood test made me want to cry...and not happy tears...it's been one of those days where the realities of my life feel like to much to handle... Which is kind of comical since people frequently ask me how I do it...how I live this life daily...how I get through all the tough stuff...people have even suggested that I share at church...to which I decline because really I am not so great at the talking in front of people thing...and since swearing has become a frequent part of me telling my story I don't think people in my church would like that...I'm pretty sure a lot of people would think me saying shit from the pulpit would be a horrible sin...and besides just the swearing I tend to say a lot of...