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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!
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1 comments:
Sarah you are beyond amazing just having the will and want to post something, even if it does become over whelming! Often people who know their life is coming to an end, curl up in a corner and shut the world out but you are still giving us your amazing bright shining personality as much as you can.
I just love you bunches and I love reading your blogs! They are inspiring and quirky just like you and fun to read even through a lot of the sadness!
Keep on smiling pretty girl! You make the world such a pretty place!
xoxo
Ash
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