As always I find myself unsure how to start this thing...
So I guess I will start with health stuff since that's what most people seem to want to know all the time...not much has happened since my appointment that I talked about in my last blog post...I had the CAT scan on Thursday which was no big deal...I don't find out the results until I go see the doctor again in like two weeks or something like that...I did have to drink three smallish bottles of Barium for the test...as I keep telling people...it is not the worst thing I've ever had to drink but that doesn't mean I wanted to drink it...I kept having to tell myself to not throw up because then I would just have to drink more...even though it didn't taste too bad it did give me a stomach ache the rest of the day so that was no fun at all...most of the day I didn't want to eat because I had no appetite at all...
Besides that I have been getting pretty tired again which most likely means my hemoglobin is low again...which means I will probably have to get blood again before 6 weeks is up...which is frustrating...we have found that on average I can make it about 4 weeks right now without needing a blood transfusion...I know that my blood count could be high and I may just be getting tired because I have been doing more...I get my blood drawn tomorrow so we will see what my blood count is and see what the doctor says...he wants to be somewhat lenient about it but still has to make sure I have a high enough count to live...even though I don't know the results I have been getting a little frustrated and upset...I want my blood to stop being so wacko cause I am ready for this mess to all be done...
I've been feeling moodiness super set in as it does every now and then making everything feel difficult and like this crap will be never ending and I will forever be caught up in this slow death...I get upset about everything so much easier...like having to get hooked up to dialysis or losing my hair (which has been making me cry a lot lately)...I have also noticed that I try to cover up those feelings or get past them by being overly silly...I mean I normally do crazy weird stuff but I have been trying to do weird things so that I am not crying but have been saying I am doing because I want to enjoy life which is partially true...sometimes I do things because I do want other people to smile...like wearing my moustache glasses into subway today...but I do tend to do things because I don't want to think about how sad I am or let into it...even though crying every now in then is fine...especially when my friends don't really know how I am feeling since I don't really talk about it...or say one thing then act another way...I just don't like to think about it or face up to the facts...it is like I don't want to waste my life being sad or depressed and I am so focused on doing that I don't let myself feel sometimes...plus I don't want to get other people more upset by showing them how upset I really am...it is a weird constant struggle of what to do and trying to figure out how I really feel...which I can be pretty unsure of all the time...
On another note...as many of you know one of the things I would love to do is to be a legit published writer...which scares the crap out of me like for real...I have recently been reading and listening to a lot of things that other writers have to say about being a writer and about other writers...many of them say that it is something that can cause a lot of fear...that and that most writers are crazy...so I pretty much have that covered...some of my fears are that my writing will never be good enough...I often feel like I could have said something in a different better way...explaining it more perfectly...using a word that more accurately portrays the meaning of what I am trying to say...that I missed mistake after mistake after mistake and my work is a jumbly mess...I also don't think that I am really that talented and why would anyone want to read the words of a talentless fool...I often wonder if anyone would want to read what I have to say or listen to the words that I speak...like what if I did write a book and no one read it (sorry mom you don't really count since you lived it with me)...I wonder what do I really have to say...sometimes I think I could write a great story and then other times I think it would be pointless...I wouldn't really have anything to say that would be worth writing about...what do I even know that I could write about...I know less then nothing...I mean I could make up some crap and sound like I knew what I was talking about but it would be so fake...I would be so full of it that I feel like I wouldn't even end up likely what I wrote...yet that desire still burns in me to write...to tell stories...
I especially want to tell my own story...but along with the questions and fears above I also wonder where do I start...and how do I fill in all the blanks of the stuff I don't remember...like when I fist got sick when I was so little...how do I tell about my kidney failing when I wasn't even two when I feel like I could barely talk about what happened to me when I had my transplant at age 8 because I would be piecing together fragmented memories...if my memories are so disjointed at 8 and I don't remember anything about getting sick at the age of 21 months...how do I even start my own story...how do I incorporate the health facts along with the feelings I had that came along with that...and then how do I add in my faith and my beliefs and how that keeps me going when I just want to give up...how do I tell about how hard it can be to drag myself out of bed each and every morning during all of this even on the good days...how do I explain that this whole not giving up thing really isn't my choice...how do I talk about the good parts and bad parts of being sick sharing the lessons as well as the heart aches that seem to never go away leaving what can feel like a giant bleeing wound in my heart...to me it seems like a bit of a contradiction...and sounds like it could end up as a big mess that no one would ever want to read if I did happen to ever get anything out that I felt like was close enough to good and able to be read...which brings me back to wondering who would ever really want to read that...would someone that I know really want to pick that up and read it let alone someone I don't know...would that be enough people to make it worth publishing...
When all these uncertainties bombarded me it is easy for me to see why people always say that creative people have to be crazy to keep writing creating and dreaming despite their fears and despite the number of times they may fail in their pursuit of those dreams...
Besides that I have been getting pretty tired again which most likely means my hemoglobin is low again...which means I will probably have to get blood again before 6 weeks is up...which is frustrating...we have found that on average I can make it about 4 weeks right now without needing a blood transfusion...I know that my blood count could be high and I may just be getting tired because I have been doing more...I get my blood drawn tomorrow so we will see what my blood count is and see what the doctor says...he wants to be somewhat lenient about it but still has to make sure I have a high enough count to live...even though I don't know the results I have been getting a little frustrated and upset...I want my blood to stop being so wacko cause I am ready for this mess to all be done...
I've been feeling moodiness super set in as it does every now and then making everything feel difficult and like this crap will be never ending and I will forever be caught up in this slow death...I get upset about everything so much easier...like having to get hooked up to dialysis or losing my hair (which has been making me cry a lot lately)...I have also noticed that I try to cover up those feelings or get past them by being overly silly...I mean I normally do crazy weird stuff but I have been trying to do weird things so that I am not crying but have been saying I am doing because I want to enjoy life which is partially true...sometimes I do things because I do want other people to smile...like wearing my moustache glasses into subway today...but I do tend to do things because I don't want to think about how sad I am or let into it...even though crying every now in then is fine...especially when my friends don't really know how I am feeling since I don't really talk about it...or say one thing then act another way...I just don't like to think about it or face up to the facts...it is like I don't want to waste my life being sad or depressed and I am so focused on doing that I don't let myself feel sometimes...plus I don't want to get other people more upset by showing them how upset I really am...it is a weird constant struggle of what to do and trying to figure out how I really feel...which I can be pretty unsure of all the time...
On another note...as many of you know one of the things I would love to do is to be a legit published writer...which scares the crap out of me like for real...I have recently been reading and listening to a lot of things that other writers have to say about being a writer and about other writers...many of them say that it is something that can cause a lot of fear...that and that most writers are crazy...so I pretty much have that covered...some of my fears are that my writing will never be good enough...I often feel like I could have said something in a different better way...explaining it more perfectly...using a word that more accurately portrays the meaning of what I am trying to say...that I missed mistake after mistake after mistake and my work is a jumbly mess...I also don't think that I am really that talented and why would anyone want to read the words of a talentless fool...I often wonder if anyone would want to read what I have to say or listen to the words that I speak...like what if I did write a book and no one read it (sorry mom you don't really count since you lived it with me)...I wonder what do I really have to say...sometimes I think I could write a great story and then other times I think it would be pointless...I wouldn't really have anything to say that would be worth writing about...what do I even know that I could write about...I know less then nothing...I mean I could make up some crap and sound like I knew what I was talking about but it would be so fake...I would be so full of it that I feel like I wouldn't even end up likely what I wrote...yet that desire still burns in me to write...to tell stories...
I especially want to tell my own story...but along with the questions and fears above I also wonder where do I start...and how do I fill in all the blanks of the stuff I don't remember...like when I fist got sick when I was so little...how do I tell about my kidney failing when I wasn't even two when I feel like I could barely talk about what happened to me when I had my transplant at age 8 because I would be piecing together fragmented memories...if my memories are so disjointed at 8 and I don't remember anything about getting sick at the age of 21 months...how do I even start my own story...how do I incorporate the health facts along with the feelings I had that came along with that...and then how do I add in my faith and my beliefs and how that keeps me going when I just want to give up...how do I tell about how hard it can be to drag myself out of bed each and every morning during all of this even on the good days...how do I explain that this whole not giving up thing really isn't my choice...how do I talk about the good parts and bad parts of being sick sharing the lessons as well as the heart aches that seem to never go away leaving what can feel like a giant bleeing wound in my heart...to me it seems like a bit of a contradiction...and sounds like it could end up as a big mess that no one would ever want to read if I did happen to ever get anything out that I felt like was close enough to good and able to be read...which brings me back to wondering who would ever really want to read that...would someone that I know really want to pick that up and read it let alone someone I don't know...would that be enough people to make it worth publishing...
When all these uncertainties bombarded me it is easy for me to see why people always say that creative people have to be crazy to keep writing creating and dreaming despite their fears and despite the number of times they may fail in their pursuit of those dreams...
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