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Showing posts from December, 2011

What to say about this week and today

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

Just some thoughts from tonight

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

I've been putting this off

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

Getting out of the house

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.

From the mom of a "real life Wonder Woman", Raising a Chronically Ill Child".

(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

You might have heard this week has been a little crazy...

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