When you deal with being sick all your life...
Overwhelming deep sadness can overcome you at anytime without warning...that happened to me today...I have had a great week...and today was a great end to the week...I got to see some camp people because we had a staff meeting...and I went to the Saunders Ranch and watched the Oscar's with Nicole, Betty, mom, and Tom (part of the time)...quick side story to that we had to fill out ballots before hand of who we thought/wanted to win and then during the awards keep track of who did win to see who got the most right...and I won with 12...so that feels kind of good...but I have been in this odd funk since this afternoon...I wish I could describe it to you but I don't know how too...all I know it that it feels almost like something I can't shake...it's almost like I need a restart to the day or to just sleep not walking up till it's a new day to feel better and that seems to be the only thing that really helps...
Also this week on Tuesday I have a scope I am not looking forward too...I've had scopes before so that's not really a big deal...the problem is that in four days my hemoglobin went from 8.2 to 7 and we don't know why and the Dr might not do my scope if my hemoglobin is that low...so I might be there getting a transfusion instead of a scope...or both...I don't know...I just know it's a huge bummer that my hemoglobin is being so whacked...so I am not looking forward to Tuesday and to how long the day could end up being...that's another thing that sucks...my hemoglobin dropping like crazy and we still don't know why...I am so freakin tired of it though...evertime it does this and I have to get a tranfusion I get upset because it is the same set back yet again so that I am no closer to having a transplant...with all these things coming up this summer and with trying to figure out how to do dialysis around these things it's a headache...and with constant set backs because of my blood it is hard not to wonder if I will ever get back on the list...
I know it doesn't sound fun and its not but I am finding more and more that to be real with others I need to be reall with myself first and sometimes that means dragging myself through days when my mood is totally off like today...so here's some more things I want to be honest about even though they are sucky...First I hate HATE dialysis...I can't have a life and carry on with what I really want to do because I have to be hooked up to the machine...mom can't have a life most afternoons because she has to be home while I am hooked up...I am so ready to have this perm cath out because even though it's fine and it looks great it hurts and it's annoying and I am becoming more self-conscious about it instead of less...I told both my parents the other day that when I get it out "What a day of rejoicing that will be"...Second I still think my scar on my arm is super ugly...I hate it with a passion...I don't remember hating of my other scars like I hate this one...I remember being self-conscious about them but never hating that entirely...but this one I think it's ugly and I don't want to see it...I keep thinking about getting some customized fake tatoos made to put by it to remind me of how important it is that I have it but I don't know if that would really help...maybe when the pain of this whole situation isn't so fresh in my mind I will get over hating it but right now it just reminds me of how much my life sucks and how jacked up my body is...third I'm losing my hair like crazy...I will run my hand through my hair and when I pull my hand back it will be covered in hair...and this is everytime and has been going on for a couple of months...I can accumulate the same amount of hair on my floor in one days as most floors do in a couple of months...its that bad...I found out that can happen when you start dialysis so I am gonna ask my dr about that and ask him when it will stop...though I have joked about shaving my head in the past losing your hair is a whole different feeling...it makes me want to cry all the time...it makes me feel like I am not beautiful and like I am less of a woman because I am losing so much hair...
After that depressing tidbit where I just cried harder than I have in probably monthslets talk a little about Jesus and some things that I have sort of been clinging to recently...
Also this week on Tuesday I have a scope I am not looking forward too...I've had scopes before so that's not really a big deal...the problem is that in four days my hemoglobin went from 8.2 to 7 and we don't know why and the Dr might not do my scope if my hemoglobin is that low...so I might be there getting a transfusion instead of a scope...or both...I don't know...I just know it's a huge bummer that my hemoglobin is being so whacked...so I am not looking forward to Tuesday and to how long the day could end up being...that's another thing that sucks...my hemoglobin dropping like crazy and we still don't know why...I am so freakin tired of it though...evertime it does this and I have to get a tranfusion I get upset because it is the same set back yet again so that I am no closer to having a transplant...with all these things coming up this summer and with trying to figure out how to do dialysis around these things it's a headache...and with constant set backs because of my blood it is hard not to wonder if I will ever get back on the list...
I know it doesn't sound fun and its not but I am finding more and more that to be real with others I need to be reall with myself first and sometimes that means dragging myself through days when my mood is totally off like today...so here's some more things I want to be honest about even though they are sucky...First I hate HATE dialysis...I can't have a life and carry on with what I really want to do because I have to be hooked up to the machine...mom can't have a life most afternoons because she has to be home while I am hooked up...I am so ready to have this perm cath out because even though it's fine and it looks great it hurts and it's annoying and I am becoming more self-conscious about it instead of less...I told both my parents the other day that when I get it out "What a day of rejoicing that will be"...Second I still think my scar on my arm is super ugly...I hate it with a passion...I don't remember hating of my other scars like I hate this one...I remember being self-conscious about them but never hating that entirely...but this one I think it's ugly and I don't want to see it...I keep thinking about getting some customized fake tatoos made to put by it to remind me of how important it is that I have it but I don't know if that would really help...maybe when the pain of this whole situation isn't so fresh in my mind I will get over hating it but right now it just reminds me of how much my life sucks and how jacked up my body is...third I'm losing my hair like crazy...I will run my hand through my hair and when I pull my hand back it will be covered in hair...and this is everytime and has been going on for a couple of months...I can accumulate the same amount of hair on my floor in one days as most floors do in a couple of months...its that bad...I found out that can happen when you start dialysis so I am gonna ask my dr about that and ask him when it will stop...though I have joked about shaving my head in the past losing your hair is a whole different feeling...it makes me want to cry all the time...it makes me feel like I am not beautiful and like I am less of a woman because I am losing so much hair...
After that depressing tidbit where I just cried harder than I have in probably monthslets talk a little about Jesus and some things that I have sort of been clinging to recently...
I have been thinking a lot about how God deos the unexpected...part of the reason I have been thinking about this is because I keep getting this song I love stuck in my head called "Aslan" by Kendall Payne...now this isn't Kendall Payne singing the song but for those of you who have never heard it here's a pretty good cover of the song...
If you want to hear Kendall Payne singing the song then go to itunes and buy it...that's all I can think to tell you cause everytime I try to find it on youtube or somewhere else I have no luck...
Anywho I love this song...in part because I have loved the Chronicles of Narnia for a long time and have always loved the picture of Jesus as a lion...if you didn't catch it the chorus says "He won't say the words you wish that he would he don't do the deed you know that he could he don't think the thougts you think that he should but he is good he is good"...I have always loved the picture of God being like this big beautiful lion that though he is dangerous he is also safe and good...what a contradiction...and it can feel that way in our lives a lot...like in my life right now I know that God gives good gifts and I know he works all things for his glory but all I can see right now is the bad...I feel like I am sitting in a garbage heep trying to shine up discarded tin cans so that they can reflect light giving the apperance that they are beautiful...even after all I have been through I am waiting for the roaring lion to come in a save the day making killing the white witch look easy...I am stuck in bondage waiting for an earthquake to knock the walls down giving me freedom...I am waiting for some sort of big miraculous sign like you read about in the Bible...but God doesn't always work that way...more often he does the unecpected like speaking in the silence instead of in some sort of booming glowing cloud...going humbly to the cross instead for overthrowing the roman rule in Isreal showing his kingly right and power...or like he is doing in my life right now sitting in the garbage heap with me helping me shine up tin cans knowing they will make something beautiful instead of bringing me some sort of prefect healing...maybe that something beautiful out of the tin cans would look like this...
True I am not really sitting in a garbage heep surround by tin cans I am trying to shine up...but if we as humans in your simplicity can make something beautiful out of tin cans then why do we doubt that God who is the creator and perfector can make something even more beautiful out of our lifes...
If this doesn't make sense to you...well I don't know what to tell you...I think maybe this post was more for me anyways because right now I am Lucy hearing that Aslan is a lion and I am scared out of my mind but also in awe...reminding myself over and over that no mater how things may feel that doesn't change him and the fact that no matter what he is good...
Comments
Post a Comment