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Saturday, September 25, 2010
10:20 PM | 
Posted by
pinkpuffyheart |
Y'know when you begin a blog you have such big plans for it. You say you're going to talk about this, post pictures/videos about that and just make it your perfect lil' slice of internet heaven. My slice of blog heaven is becoming overwhelming at the moment, lol. There is so much I want to share with everyone all at once but that won't do! Must spread it out thin like buttah and jam on toast, Sarah.
I would love to share some pictures and videos of my daily life but I can't find the cord to my digital camera. I know it's around here somewhere! *Looks under Jealousy* Nope! Just fatty fur there. Grrr! So as soon as I do you'll be getting lots of cool blog entries from me!
Now onto some 'Morphine' portion of "Morphine and Cupcakes"... Taryn-Dactyl asked in a comment on my last entry what SMA was. Well, I'm going to try and explain it the best way I know possible.
Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common "rare disorder": approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers.
SMA affects muscles throughout the body, although the proximal muscles (those closest to the trunk of one’s body - i.e. shoulders, hips, and back) are often most severely affected. Weakness in the legs is generally greater than in the arms. Sometimes feeding and swallowing can be affected at an early age and eventually as the disease progresses. Involvement of respiratory muscles (muscles involved in breathing and coughing) can lead to an increased tendency for pneumonia and other lung problems. Sensation and the ability to feel are not affected. (Hence why I've been in many relationships with men, lol.) Intellectual activity is very high and it is often observed that patients with SMA are unusually bright with high IQ's and sociable. Patients are generally grouped into one of four categories, based on certain key motor function milestones. I have a mixture of type II/III SMA. Some experts out there compare some of SMA to ALS (Lou Gehrig's disease.)
I certainly hope that helps some of you understand my disease a bit better. Sometimes it's even confusing to me and I hardly understand it most days.
I had a pretty good day Saturday. My Sister Ann and her Husband John came over for a visit. I love when she comes over! She always french braids my hair and her Husband John just cracks me up so much I can hardly breath at times. Which isn't good when you're on oxygen I don't think, lol. I can't wait to see them next weekend!
Friday... not so good. I fell into a deep sleep that I had a really rough time getting out of (sorry, Mommy!) and was in a lot of pain. Just one of those bad days that'll come and go.
I did get to see one of my favorite people, Zoe Ann. She is such a wonderful woman and has such a comforting soul. I also got to meet her great son, Sam and his NEW fiancee Julianne! They just got engaged yesterday and I bet it was a beautiful proposal.
This looks like such a cute movie!!! I REALLY want to see it...
Well, it's time to dope up on my many pain meds and get some sleep. Goodnight, Loves!
I would love to share some pictures and videos of my daily life but I can't find the cord to my digital camera. I know it's around here somewhere! *Looks under Jealousy* Nope! Just fatty fur there. Grrr! So as soon as I do you'll be getting lots of cool blog entries from me!
Now onto some 'Morphine' portion of "Morphine and Cupcakes"... Taryn-Dactyl asked in a comment on my last entry what SMA was. Well, I'm going to try and explain it the best way I know possible.
Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. It is a relatively common "rare disorder": approximately 1 in 6000 babies born are affected, and about 1 in 40 people are genetic carriers.
SMA affects muscles throughout the body, although the proximal muscles (those closest to the trunk of one’s body - i.e. shoulders, hips, and back) are often most severely affected. Weakness in the legs is generally greater than in the arms. Sometimes feeding and swallowing can be affected at an early age and eventually as the disease progresses. Involvement of respiratory muscles (muscles involved in breathing and coughing) can lead to an increased tendency for pneumonia and other lung problems. Sensation and the ability to feel are not affected. (Hence why I've been in many relationships with men, lol.) Intellectual activity is very high and it is often observed that patients with SMA are unusually bright with high IQ's and sociable. Patients are generally grouped into one of four categories, based on certain key motor function milestones. I have a mixture of type II/III SMA. Some experts out there compare some of SMA to ALS (Lou Gehrig's disease.)
I certainly hope that helps some of you understand my disease a bit better. Sometimes it's even confusing to me and I hardly understand it most days.
I had a pretty good day Saturday. My Sister Ann and her Husband John came over for a visit. I love when she comes over! She always french braids my hair and her Husband John just cracks me up so much I can hardly breath at times. Which isn't good when you're on oxygen I don't think, lol. I can't wait to see them next weekend!
Friday... not so good. I fell into a deep sleep that I had a really rough time getting out of (sorry, Mommy!) and was in a lot of pain. Just one of those bad days that'll come and go.
I did get to see one of my favorite people, Zoe Ann. She is such a wonderful woman and has such a comforting soul. I also got to meet her great son, Sam and his NEW fiancee Julianne! They just got engaged yesterday and I bet it was a beautiful proposal.
This looks like such a cute movie!!! I REALLY want to see it...
Well, it's time to dope up on my many pain meds and get some sleep. Goodnight, Loves!
Tuesday, September 21, 2010
Yep, another blog out there in the mighty big gigantic blog-o-sphere. There is a blog for everything it seems these days. We all seem to feel the need to type out our thoughts and share them with every stranger out there in cyberspace. And guess what?! I'm becoming one of those bloggers! Go me? Yay me?
I've decided to start this blog the day I found out that I was being put on Hospice in June. (Every single time I say or think of the word 'Hospice', I think 'Ho-spice', lol). Yeah it took me this long to start this blog! What can I say?! Procrastination is my middle name, not Jane. Well it could very well be considering my mother can't find my birth certificate. But that's another story for another day. I want to keep everyone more caught up with me since I'm not online as much as I use to be, so I figured this blog would help keep everyone in the loop.
A little background for some of you readers... I'm a twenty-seven year old female with SMA (Spinal Muscular Atrophy type II/III). Google, my friends. G-O-O-G-L-E. And well... my time on this wonderfully amazing planet is coming to an end.
Back to this whole dying process stuff and being on Hospice. It all started one week in June. It was a very bad week in June. I couldn't keep anything down me, not even water. I kept throwing up every little thing that entered my body. I was the sickest I had ever been sick in my entire life. After several miserable days that's when my doctor pulled my mom aside and said it was time I go on Hospice. I knew what she was telling my mom, I knew the moment I saw my mom's face when she came back into the room. I just... knew. I knew my body had given up. You'd think that hearing news that you're going on palliative care would be the scariest thing you've ever had to hear come out of someones mouth and directly into your ears, but it's not. You would think you'd start screaming or crying hysterically, right? You'd be in 100% denial and just say it's a tiny stomach virus and you'll be fine soon enough. Not me. "Okay. When does it all start?" I felt at ease. I don't know why I did, but I did.
I'm not scared of dying. I'm not. As morbid as it may sound I'm kinda curious and a little bit of me can't wait to see God and Heaven. I think it's going to be glorious and majestic. It's going to be... one of a kind.
The past few weeks have been really rough on me. A lot has changed. I do daily breathing treatments, my morphine has upped from tiny blue pills to shots and morphine skin patches. I'm on constant oxygen and I hate the stupid tube that has remain in my nose 24/7 just so I can breathe. Lot's of pain, lot's of sleep.
I still can't keep a lot of solids down. Surprisingly my stomach loves carbonated beverages, fruit, sour and gummi candy (that my wonderful nurse Heather has been keeping me supplied in! Gotta love Warheads and Sour Patch candies! Thank you, Heather!), some soups and other soft food but mainly I've been living off of the nutritional energy drink Boost. It's not too bad. Chocolate is the best, heh. Tastes like a milkshake.
So, that's where we are at today, and I have to thank God for one more day. Thank you, Lord.
A quick P.S. - My Bestie, Jackie Loo designed my blog. Isn't it cute?! She's so graphically talented and she's going to be the best nurse in 2011. She has been an amazing support to me these past few weeks and I don't know what I'd do with her. She is the sunrise to my sunset and I am so thankful to have her as my best Bestie. (Stop crying, Sarah. Yes I talk to myself, lol). I love you, Jackie. Thank you! Just... thank you so much.
I've decided to start this blog the day I found out that I was being put on Hospice in June. (Every single time I say or think of the word 'Hospice', I think 'Ho-spice', lol). Yeah it took me this long to start this blog! What can I say?! Procrastination is my middle name, not Jane. Well it could very well be considering my mother can't find my birth certificate. But that's another story for another day. I want to keep everyone more caught up with me since I'm not online as much as I use to be, so I figured this blog would help keep everyone in the loop.
A little background for some of you readers... I'm a twenty-seven year old female with SMA (Spinal Muscular Atrophy type II/III). Google, my friends. G-O-O-G-L-E. And well... my time on this wonderfully amazing planet is coming to an end.
Back to this whole dying process stuff and being on Hospice. It all started one week in June. It was a very bad week in June. I couldn't keep anything down me, not even water. I kept throwing up every little thing that entered my body. I was the sickest I had ever been sick in my entire life. After several miserable days that's when my doctor pulled my mom aside and said it was time I go on Hospice. I knew what she was telling my mom, I knew the moment I saw my mom's face when she came back into the room. I just... knew. I knew my body had given up. You'd think that hearing news that you're going on palliative care would be the scariest thing you've ever had to hear come out of someones mouth and directly into your ears, but it's not. You would think you'd start screaming or crying hysterically, right? You'd be in 100% denial and just say it's a tiny stomach virus and you'll be fine soon enough. Not me. "Okay. When does it all start?" I felt at ease. I don't know why I did, but I did.
I'm not scared of dying. I'm not. As morbid as it may sound I'm kinda curious and a little bit of me can't wait to see God and Heaven. I think it's going to be glorious and majestic. It's going to be... one of a kind.
The past few weeks have been really rough on me. A lot has changed. I do daily breathing treatments, my morphine has upped from tiny blue pills to shots and morphine skin patches. I'm on constant oxygen and I hate the stupid tube that has remain in my nose 24/7 just so I can breathe. Lot's of pain, lot's of sleep.
I still can't keep a lot of solids down. Surprisingly my stomach loves carbonated beverages, fruit, sour and gummi candy (that my wonderful nurse Heather has been keeping me supplied in! Gotta love Warheads and Sour Patch candies! Thank you, Heather!), some soups and other soft food but mainly I've been living off of the nutritional energy drink Boost. It's not too bad. Chocolate is the best, heh. Tastes like a milkshake.
So, that's where we are at today, and I have to thank God for one more day. Thank you, Lord.
A quick P.S. - My Bestie, Jackie Loo designed my blog. Isn't it cute?! She's so graphically talented and she's going to be the best nurse in 2011. She has been an amazing support to me these past few weeks and I don't know what I'd do with her. She is the sunrise to my sunset and I am so thankful to have her as my best Bestie. (Stop crying, Sarah. Yes I talk to myself, lol). I love you, Jackie. Thank you! Just... thank you so much.
Monday, September 6, 2010
You are the BEST to my Friend!
Sarah -
Where do I begin? Well, what I do know, is you are a one in a million kind of person! You have the most beautiful heart, and you wear it well! I can't even begin to tell you how much having you in my life has meant to me, because it's unmeasurable. You have gotten me through some very rough times, and for that alone I am endlessly thankful! You will forever be my one and only blootoofies date, and I hope you know I cherished each and every 3+ hour conversation we had!! You are one of the few people in this world who can make me laugh and smile when the world seems to be crumbling around me, if it's the silliest thing in the whole world, you never ever minimized me or my feelings, we conquered all of lifes little challenges head on! So I hope you know how much I love you, how much you mean to me, and that you will ALWAYS be my bestie, because no one could ever take your place!
Where do I begin? Well, what I do know, is you are a one in a million kind of person! You have the most beautiful heart, and you wear it well! I can't even begin to tell you how much having you in my life has meant to me, because it's unmeasurable. You have gotten me through some very rough times, and for that alone I am endlessly thankful! You will forever be my one and only blootoofies date, and I hope you know I cherished each and every 3+ hour conversation we had!! You are one of the few people in this world who can make me laugh and smile when the world seems to be crumbling around me, if it's the silliest thing in the whole world, you never ever minimized me or my feelings, we conquered all of lifes little challenges head on! So I hope you know how much I love you, how much you mean to me, and that you will ALWAYS be my bestie, because no one could ever take your place!
Your best bestie,
Jackie
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