This is sort of going to be like a double post
First I want to share with you a video from church today of me, my mom, and my dad talking about my health and what our family deals with...
http://www.youtube.com/watch?v=1RwQZkwGXys
While I was talking I also talked about another video that I love...
http://www.youtube.com/watch?v=b4Qb1qdXn4o&list=FLDPZUYmNMc8iEUn1lFbhnwQ&index=31
Hopefully Zac's story speaks to you like it does me and reminds you how good God is despite our circumstances and how he really can work through anything...
Now that part one is done on to what I want to write about for this week...
As many of you know I sleep all the time or at least I am in bed a lot...that's nothing really that new...but I have been thinking about that a little bit...because we have all these pictures from when I was younger were I am sleeping anywhere and everywhere...and when I say anywhere and everywhere I mean it...the most common place I would sleep is on the floor right in the way...I used to wonder why there were so many pictures of me sleeping everywhere and mom would always say that it's because I was really sick and would fall asleep anywhere...I feel like I am starting to understand that more...recently my routine days begins with me getting up around 8:30 - 9:00 being awake for about an hour to eat and take my meds and then sleeping again until noon or possibly one...that is unless I don't get up at 8:30 - 9:00 and then I just sleep till noon and even when I get up then I still feel like I am not rested and like I could sleep the rest of the day...and then when I am up I try not to do a lot because even walking around my house makes my heart race and my breathing a little heavy like I have been working out because I have no energy...so the sleeping all the time is needed and makes sense...
I was thinking a little too about how on my update on how the doctors visit went on Wednesday I forgot to mention that doctors love me...but maybe it's for the better cause now I can tell you what the main nurse Nancy that I deal with said...beginning with doctors though...I have had doctors tell me that they like it when I come in because I don't really complain which makes me an easy patient to deal with...for example when I was still in Arizona I went and saw Dr. Morales...while I was sitting in one of the rooms waiting for him I could hear what was going on in the other room he was in...the patient in there went on and on about how much her back hurt he kept telling her to do different stuff and she kept saying she didn't want to do those things or didn't think they would help...when he got done he walked into my room and just stood inside the doorway for a second and sighed...when I started to ask him what that was for he was like "nope let me just enjoy this for a moment it's nice to have a patient that doesn't complain"...he is not the first one to say that or act that way but for some reason that time stuck out to me and it still sort of cracks me up...then on Friday nurse Nancy called me to get a blood test done so they could check my hemoglobin and see if I needed another transfusion...as per usual I just was like "ok no problem I can do that" and she sort of started laughing and said something along the lines of "you're so sweet thank you you just do whatever I tell you to do I wish other people were like that like my kids or my husband" which needless to say cracked me up even more...and we also make Dr. Sader my kidney doctor laugh when we see him for appointments...I think we make his day...not sure but we do have pretty positive attitudes when we go in and we act like it's a party...I don't think most people do that so just based on that I think he likes it a lot when he gets to see us...
This next thing I want to talk about I have been thinking about writing about for a while but I have been really nervous too...I don't want to be taken the wrong way but I do want to share what is on my heart...and maybe talking about it will make me feel better too...
A lot of time I feel like things are my fault even though I know that they really aren't...what I mean when I say that is that I often wonder what life would be like if I wasn't sick...I wonder if my parents could have the house in the country with out building and a big wrap around porch that they want...I wonder if my family could have eaten out more...I wonder if dad would have a job that didn't have such crazy hours or be so demanding...I wonder if my sister and brother could have done things that they didn't think they could do or have things that they wanted...I wonder if our house would be fixed along time ago...I wonder if my mom would still worry about money...I wonder a lot of other things to like if my family members would be different in general because they didn't have to worry about me or cry about the things I deal with that we all deal with...and I think if I wasn't sick --- and even though no one makes me feel this way I often times feel like I am to blame or my sickness is to blame...which I know isn't true but sometimes it's hard not to listen to those doubts and those questions...I'm not asking for anything and I don't want you to feel bad for me or my family...I just want to be honest about some of the things that weigh on my mind sometimes...then maybe you can pray for me and help me in that way to take every thought captive to the obedience of Christ...
http://www.youtube.com/watch?v=1RwQZkwGXys
While I was talking I also talked about another video that I love...
http://www.youtube.com/watch?v=b4Qb1qdXn4o&list=FLDPZUYmNMc8iEUn1lFbhnwQ&index=31
Hopefully Zac's story speaks to you like it does me and reminds you how good God is despite our circumstances and how he really can work through anything...
Now that part one is done on to what I want to write about for this week...
As many of you know I sleep all the time or at least I am in bed a lot...that's nothing really that new...but I have been thinking about that a little bit...because we have all these pictures from when I was younger were I am sleeping anywhere and everywhere...and when I say anywhere and everywhere I mean it...the most common place I would sleep is on the floor right in the way...I used to wonder why there were so many pictures of me sleeping everywhere and mom would always say that it's because I was really sick and would fall asleep anywhere...I feel like I am starting to understand that more...recently my routine days begins with me getting up around 8:30 - 9:00 being awake for about an hour to eat and take my meds and then sleeping again until noon or possibly one...that is unless I don't get up at 8:30 - 9:00 and then I just sleep till noon and even when I get up then I still feel like I am not rested and like I could sleep the rest of the day...and then when I am up I try not to do a lot because even walking around my house makes my heart race and my breathing a little heavy like I have been working out because I have no energy...so the sleeping all the time is needed and makes sense...
I was thinking a little too about how on my update on how the doctors visit went on Wednesday I forgot to mention that doctors love me...but maybe it's for the better cause now I can tell you what the main nurse Nancy that I deal with said...beginning with doctors though...I have had doctors tell me that they like it when I come in because I don't really complain which makes me an easy patient to deal with...for example when I was still in Arizona I went and saw Dr. Morales...while I was sitting in one of the rooms waiting for him I could hear what was going on in the other room he was in...the patient in there went on and on about how much her back hurt he kept telling her to do different stuff and she kept saying she didn't want to do those things or didn't think they would help...when he got done he walked into my room and just stood inside the doorway for a second and sighed...when I started to ask him what that was for he was like "nope let me just enjoy this for a moment it's nice to have a patient that doesn't complain"...he is not the first one to say that or act that way but for some reason that time stuck out to me and it still sort of cracks me up...then on Friday nurse Nancy called me to get a blood test done so they could check my hemoglobin and see if I needed another transfusion...as per usual I just was like "ok no problem I can do that" and she sort of started laughing and said something along the lines of "you're so sweet thank you you just do whatever I tell you to do I wish other people were like that like my kids or my husband" which needless to say cracked me up even more...and we also make Dr. Sader my kidney doctor laugh when we see him for appointments...I think we make his day...not sure but we do have pretty positive attitudes when we go in and we act like it's a party...I don't think most people do that so just based on that I think he likes it a lot when he gets to see us...
This next thing I want to talk about I have been thinking about writing about for a while but I have been really nervous too...I don't want to be taken the wrong way but I do want to share what is on my heart...and maybe talking about it will make me feel better too...
A lot of time I feel like things are my fault even though I know that they really aren't...what I mean when I say that is that I often wonder what life would be like if I wasn't sick...I wonder if my parents could have the house in the country with out building and a big wrap around porch that they want...I wonder if my family could have eaten out more...I wonder if dad would have a job that didn't have such crazy hours or be so demanding...I wonder if my sister and brother could have done things that they didn't think they could do or have things that they wanted...I wonder if our house would be fixed along time ago...I wonder if my mom would still worry about money...I wonder a lot of other things to like if my family members would be different in general because they didn't have to worry about me or cry about the things I deal with that we all deal with...and I think if I wasn't sick --- and even though no one makes me feel this way I often times feel like I am to blame or my sickness is to blame...which I know isn't true but sometimes it's hard not to listen to those doubts and those questions...I'm not asking for anything and I don't want you to feel bad for me or my family...I just want to be honest about some of the things that weigh on my mind sometimes...then maybe you can pray for me and help me in that way to take every thought captive to the obedience of Christ...
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