Saturday, December 26, 2009
Tuesday, December 22, 2009
Sunday, December 20, 2009
We got a blizzard this weekend!!! Amazing! We haven’t had this much snow in years and even if you added up the snow fall from the last 3 years it wouldn’t amount to what we got this weekend. So awesome!!
This is also the first snowfall of any amount that we have gotten since my lungs took a shit. So needless to say I was not fully prepared for what snow above 12” can do to a person with limited lung function. I learned, the hard way…
Saturday night my mom and I took a stroll out and about in L-town. It was still snowing and there was about a foot on the ground already. Most of the roads had been plowed somewhat. So we made some snow angels and walked up to the corner restaurant to get desert, and so I could take a
Today was the same thing. I went to my brothers to play with my nephew and so we could go sledding. I had so much fun but I wanted to keel over after 10 minutes outside. I pushed myself on though because this might and will most likely be the last snow storm I see while down here in PA. So I wanted to enjoy it with my nephew. And I did…then I came home and died LOL.
But this all got me thinking about a caringbridge journal update I read on a friend of mine. She talked about lung pain since she is on pain killers for hers. She just did transplant evaluation so she is a little sicker than I am. Anyway, she mentioned how common it is among end stage and almost end stage CFers. Does what I am experiencing non stop qualify as this?
I’ll explain what I feel as best as I can.
My upper front lobes ache. My upper rear lobes ache. The only time they feel ok is when I take Motrin, but I hate living on pills (besides my normal ones) and really don’t want to make Motrin a daily pill. I will if I have to but I really don’t want to.
No I have
I guess this is just another thing I get to add to my CF list huh?
Wednesday, December 16, 2009
Today was clinic. It was bittersweet to say the least. My weight is up to 119, I’m a heifer lol), but my lung function went down. My FEV1 is 38% and my FVC is 66%. I was 45% FEV1 on October 28th. That’s down 7% in less than 2
This is where the bittersweetness comes in to play. Because of this my doctor thinks it is a good idea to not work anymore. I told him I want to stop work and go on short term then long term while I wait for SSDI to kick in. I had thought maybe he would have to exaggerate a little to get me on it; turns out no exaggeration needed. If I were to continue on as is I would be back on IVs in a
I told him about
All in all it was a good visit. I got my H1N1 shot and a prescription for 7% saline and regular .9% saline since THEY DISCONTINUED 3%!!!!!!!!!!!!!!!!! I can not by any means tolerate 7%. My airways spasm like a madman on 7%. So I will have to mix the 7% and .9% to make 4% roughly.
I was going to talk to him about getting the glucose tolerance test but I am going to wait until I move to do that. No point in me spending up to $1500 (deductible) on the test when I can get it much much cheaper when I move. So that is on my to do list. Now all I need to do is start packing and get moving haha!!!
December 23rd will be my last day of work. I know its soon but I was planning on being up in
That’s all I have for now. Happy
Friday, December 11, 2009
I don’t even know where to start my love. You have been my best friend sine I was 14! More than half my life, and all of my adult life, I have shared with you.
I remember when I got you. Daddy told me that he got me a surprise for my birthday. I was all excited and really wanted a baby (odd thoughts for a 14 year old but it was a phase). He said we would find out on Sunday. The rest of the weekend I was so curious. Then Sunday morning we went to cousin Kathy’s house to see her new litter of puppies. I picked you right up because you were the tiniest of the litters. Kathy told me her name was Amy. I just smiled. Then daddy told me that she was mine. He picked her out for me already. It was TRUE love!!!! You were so small you fit in the palm of my hand!! But you were so stinking cute and cuddly. We took you home and back to mom’s and she was NOT happy! We had a cage for you to sleep in but you cried for an hour so I brought you into bed with me. You have been there ever since!!!
When you were less than a year old your leg was broken but another dog. I remember that daddy and mom were going to have you put to sleep then. But the look on my face prevented daddy from doing it; instead he wrote a check out for the amount of the surgery. They fixed you right up and you just had that big bulky yellow cast on your leg for 6 weeks. Remember how we slept on the floor all that time? I was too afraid you would fall out of bed so I made our bed the floor! We cuddled up there every night and I
You have seen me through so much grief and happiness. We took our trip out west together. You sat on my lap the whole time,
We shared so many memories, so many games. When you were still a puppy you loved to bite our feet. Patrick and I would run from sofa to sofa trying to stay away from you biting. You would hop and bounce along right after us. When you were older we would play “poke” and we would lay face to face and I would poke the side of your butt with a finger one by one and you would move your head around to bite me. We played that until you were blind.
You also loved to run! I always got a good workout when you would decide to just take off. I would chase you and sometimes, many times I thought I was going to loose you. But you always came back. Once you had to be brought back by a man who didn’t know where you were from.He knocked on all doors around till he found us. You were going blind and it was night time. You snuck behind some trees and walked off. I couldn’t find you. I started to panic. I called mom and a bunch of us went searching. Finally the nice man showed up with you and you had somehow managed to cross the busy street and get down another one. But you were safe.
I hope you are up in heaven right now loving every minute of it. All the steak and eggs you could want. Water galore. Treats till you are full. Mom-mom and
I love you forever and ever!!!!
Wednesday, December 9, 2009
Monday, December 7, 2009
I definitely did way too much this weekend. I had a blast, but I overdid it. I feel like crud today. My throat hurts, I’m exhausted and my voice is going. I’m still “recovering” from my weekend in
God I hate CF! I can’t even enjoy a weekend, a NIGHT, celebrating with my friends without CF rearing its ugly head. It’s messed up. Ok, Ok, I know there are many people out there who can do much less than I so I should just suck it up, but I don’t wanna. I’m grouchy and tired today and I deserve the right to bitch about it. So kiss my ass, k?
In case you couldn’t tell I am having a bad day. I’m just down and depressed and want to crawl under my covers until at least Saturday (my raffle is Saturday and Sunday is my God daughter’s Christening). All the death, the exhaustion, everything is catching up with me.
Next Wednesday is my clinic appointment and I am going to ask if he can just write me out of work from now on. I can’t do it anymore. I am so tired all the time, and it’s not like I can get any more sleep. I need to start doing 3 treatments a day so I can stay healthy – 3 FULL treatments, not half assed ones like I am known to do. I need to get on the ball with everything. I can’t slack anymore. It’s not fair to me and it’s not fair to everyone else. I am still alive, I am still fighting. I bet every one of my friends that lost their lives would want that opportunity back. I can’t let it go to waste. I need to stop starting my sentences with “I”s (needed some humor haha!).
My New Year’s resolution is going to be to take better care of myself. I want to start now. I don’t want to get sick and die. And it’s not like anyone can say “oh stop worrying, you’ll be fine”. Because truth is, we haven’t a clue. No one can ever really know when CF will strike hard. It’s a total waiting game. CF really does suck the life out of you…
Sunday, December 6, 2009
We lost yet another CFer. This time a huge person in our world.
God when will it end? I was so shocked when I first heard the news I didn’t cry. It has been 3 friends in 10 days. Isn’t that against nature, against the laws? How can we loose so many so fast?
I spoke with 3 friends on the phone that I had
Last night my friends and I took our one friend to
I haven’t bawled for Courtney, Ginger or
I am asking all of you to tell the ones you love that you love them. You have no idea when you may loose them.
Friday, December 4, 2009
I don’t know why I am reeling so much from the loss of Ginger. She was very sick for so many weeks, it shouldn’t hurt so badly, but it does. As much as I didn’t want to see Courtney pass, I knew it was what she wanted and what was best. She had been suffering for so long and she was ready. It was peaceful and her wishes. I wasn’t shocked when she left us, only shocked she wanted to continue on to see her father, at first then relieved she wouldn’t suffer any more.
We don’t know if Ginger asked to let go, or if this just happened. We don’t know the specific’s of her passing, just that it was complications of H1N1 that killed her. We know she was vented and trached, and had some bleeding. Ginger has a 6 year old son and a loving husband that she leaves behind. You can read her obituary here
I am still in such shock that she is gone. I was hoping to attend the services so that I could see it for myself and make it more real. Just like when Jenn passed in February, I went up to say goodbye. I am glad that I did. I really wish I could go down tonight and tomorrow. Unfortunately, we are taking one of my close friends out for her 30th birthday tomorrow night to
I’m so over all my friends passing away. It scares me for those that are left and are awaiting lungs. It scares me for those that are just “sick”. Courtney had her transplant in September but never recovered from that, or the loss of liver and kidney functions. Ginger was “healthy” before she got the H1N1 virus. I think that is what scares me the most. She was just like me, and now she is gone. It can happen at anytime, to anyone. It’s so scary and so true. I like to think that I would be able to fight off the virus, but who knows. There have been many CFers on the forums that tested positive for it and came out fine. But their numbers were all higher than mine, their bodies not as run down so to speak. Not that I am some old lady type person. And of course my family is scared for me too. I don’t blame them, I can honestly say I have never been “Afraid” before and I am now. It’s a totally new feeling for me. Luckily, and hopefully it helps, I get my H1N1 vaccine on the 16th when I go to clinic.
I am sending all types of happy healthy vibes to my readers and fellow CFers, that this winter is done taking our friends and we can sit back and enjoy the snow and beauty around us.
Wednesday, December 2, 2009
I can't take much more of this. I love my Cysters and Fibros but why must they keep dying? Why can't CF back the eff up and let us have some fun right now? Why the good people?
I don't want to believe they are gone. I cried a little. I think a part of me deep down hopes its fake. I bawled like a child at Jenn's services. It was real. I am going to see about driving down to Ginger's. She is in SC so not too far.
Please breathe easy my friends. I will see you on the other side, but hopefully not for a loooooooooong time.
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