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10:55 PM | 
Posted by
pinkpuffyheart |
Here is a little snippet...
I'll get to the point... I'm tired of pretending that everything is okay and I can feel my happy-go-lucky heart aching too much. I'm in so much pain these days that all I want to do is lay in bed and sleep. It hurts just to move. Everything is atrophying faster than it ever has before, which scares the poo out of me. I have dreams where I'm so congested I can't breathe that I will wake up and make sure that I am. My joints are tightening so much so that if I move certain ways I can feel and almost hear them tearing. This is why I'm hardly around, why I text you back 2-3 hours later after you've texted me and why I just want to sleep until I can't sleep anymore.
I just want the pain to go away. Please? Just take it away! I don't think I can handle it much longer.
Scream! This is Halloween! Red 'n' black, slimy green...
HAPPY HALLOWEEN!!!
This year we didn't have any Trick-or-Treaters! Not a one! And this year we bought the GOOD kind of candy. Makes me sad. I wanted to see some kiddos all dressed up. So, Mom and I just lounged around and watched movies. Non-scary movies! We both get too easily freaked out, lol.
Well, I hope everyone had a great Halloween and had at least one Trick-or-Treater come to your doors. Now it's time to prepare for the great Thanksgiving feast. Oh and Black Friday if you're brave enough to battle the crowds and strong enough to fight over that last Rapunzel Barbie Doll with the other psycho Mother that just must have it or her Daughter will drop dead in front of their Christmas tree.
I have much, much, MUCH more to share so there will be another update tomorrow. Have a great night, everyone! Love and blessings to all. <3>
I'll be on your side forever more, that's what friends are for.
I think I have a Scentsy addiction, folks. It's getting bad. I'll just let y'all be the judge of it...
(The iPhone takes bad pictures)
And now meet Lambchops, my Scentsy Buddy...
(Digital camera picture, much better)
Oh! Jealousy says, "Hello". She has her sleepy eyes goin' on in this picture.
Time for a Morphine shot...
There is something I need to get off my chest before I blow and this is MY blog so I’m just going to let it out. We all die. That’s the circle of life. We are born, we live and then we die when God says it’s our time to go. Yes, I’m dying. I am and there is nothing anyone or I can do to stop it. When I started telling people I was on Hospice and what was happening to my body I noticed that some of my very close friends and even family members disappeared from my life for a little bit until I confronted them. They realized how it was making me feel and how they felt and we talked it all through.
Well, it’s still happening with a few of my close friends (yes friend(S), not just one of you, so don’t think I’m singling one of you out because I’m honestly not) and it tears me up inside. I’ve cried many days and nights over this. I know it’s hard to lose someone, to realize that person that you depended on for so long for friendship and comfort is leaving you. But what about me and how I feel?! I don’t want to leave you guys!! I don’t want to miss out on your lives!
To have some of my closest friends distance themselves because they can’t handle me dying. Guess what? I CAN’T STOP IT!!! I wish I could, I SO wish I could in a heartbeat but I can’t and I’m sorry. I’m so sorry. But to those close friends out there I’m talking to… I need you! I miss you! I miss some of you more than you’ll ever know and I need you now more than ever.
I don’t want to lose time with anyone. I know everyone in my life has lives. You all have families, jobs, school and an outside social life. And I definitely know a lot of you are really busy, I know this and I don’t expect your attention 24/7. Your families and jobs come first, that’s a given. I understand that 100%. All I ask for is a little more closeness like we had. An occasional text message saying, “Hey! I’m thinking about you! Hope you’re doing well.”, “Guess what?! I just saw a duck chase a dog!” or “Hey! How are you? I love you/I miss you.”, or a quick phone call to just laugh or talk about the things going on in YOUR life, because quite honestly I hate talking about me and my life. It’s boring, trust me. I want know about you and laugh over silly things or talk about Lady Gaga’s latest outfit or gossip about the people in our lives (we all gossip, don’t deny it)! ANYTHING!!! Just don’t keep me away forever. I don’t want my last conversation with some of you to be when they tell me I have a month or one or two weeks left. I want to go with memories of good times and conversations with you guys. I love each and every one of you so much but it’s getting so hard dealing with this alone without some of you.
Well, I'm off to go take meds, lay down and watch Grey's Anatomy and Private Practice!
Love and Blessings to you all! <3
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'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.
You are the BEST to my Friend!
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!
