Saturday, December 26, 2009

Merry post-Christmas!

I hope everyone had a fabulous Christmas! It was great spending it with my family. As much as family can try your nerves, they are still family, and I still love them.

I am leaving today for my little vacation up in Boston. I am packed for 2+ weeks, and have no idea when I am actually coming home. Being officially retired, I can stay until the 19th if I want to lol (next doctor appointment is on the 20th).

I will update and blog as much as I can while up there, but it will be a bit limited I am sure.

Much love to my readers and I hope that the New Year is wonderful for you all!!!!!

Tuesday, December 22, 2009

Sunday, December 20, 2009

BLIZZARD and lung pain

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 break. I was so ridiculously winded I wanted to cry. My head was throbbing and I was exhausted. We literally had been outside maybe 15 minutes. We rested and after about 10 minutes of deep breathing my headache went away. So we ate desert (cheesecake yum) and headed home. We had a lot of fun don’t get my wrong but holy hell! I was hurting! Between the headache and the lung pain I have been having it was 50/50 on enjoyment lol.

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 never mentioned the pain to my doctor because when they ask if I am in pain I say no.I have become so used to it that I never think to tell them. It’s totally my fault and I should.

I guess this is just another thing I get to add to my CF list huh?


Wednesday, December 16, 2009

Clinic Today

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 months. Not good especially when the numbers are low to begin with.

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 month most likely. If not sooner. Though I do get to attempt Colistin again after Christmas. He said to start it when I feel I can and to monitor myself. At any point if I feel tight I should call in.

I told him about Boston and he gave me the name of a doctor that he is very close with at Mass General. So I will be looking into getting my records sent to him in January. I have one more appointment with Dr H on January 20th. The Dr he recommended is Dr Lapey. He is exactly like Dr H. Therefore, I will be able to have a smooth transition and it will be like I didn’t move. Dr Lapey is older like Dr H so I would need to look for a new dr in a few years but who knows if I will need a CF dr then. I might be at B&W for transplant by then who knows.

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 Boston right after Christmas and it makes no sense to come back for a week ya know. So I will just start my holiday vacation on a good, free start.

That’s all I have for now. Happy Holidays to everyone!!!!!!!!!!!!!!!

Friday, December 11, 2009

Dear Maggie

Dear Maggie

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 never thought twice about it. I would have done anything for you my love. Because of the surgery you had a funny foot. We used to tease you and mom because her legs splayed out to the side as well from pins. But it was a cute attribute you had!

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, never worried where we were going because I was there with you.You loved me no matter what. Even when I was mad at you for something, you would curl up on my lap and I couldn’t stay mad. You would look at me with those big eyes and tilt your head to the side and my heart would just melt. This past year you have been an angel. I lost many friends to CF and you were always there to catch my tears, literally, as you laid on my lap. I will have to learn to crochet without you curled up next to me and getting tangled in the yarn.

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 never got you spayed, I take blame for this death of yours. What was hurting you could have been prevented had I spayed you when you were a puppy. But I wanted to breed you. I wanted others to have the happiness I knew with a puppy like you. Always happy, always excited to see me. God, no matter how bad my day was, or what went wrong, when I walked in that door you were happy to see, and towards the end, smell me. Your tail would start to wag, and you would get all excited and cry for me. I would pick you up and you would wiggle in my arms and lick my face. When you went blind, you would just settle down in my arms and relax. And there you would stay for the rest of the night.

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 Pop-pop will take good care of you.And now you can see Buddy again! No puppies though you hear me!!!! I am not ready to be a grandmommy!! Please take care of yourself honey. I will miss you and think about you every single day of my life. Someday we will meet again and I can’t wait to hold you in my arms and snuggle with you one last time. I know this was the right thing to do but it was the hardest thing.I’m glad I got to hold you as you took your last breath. It was like you knew. I was holding you and mom came over to pet you and you shied away from her, burying yourself deeper into me.I’ll never forget that, or you. You have been the only constant in my life, the only person I could trust with any secret. The only one who has loved me unconditionally through everything. Younever got mad, you never hated me, you never stopped loving me. For this I will be forever grateful.

I love you forever and ever!!!!

Rest Maggie…

Wednesday, December 9, 2009


I found out yesterday another cyster passed a week post transplant. I only knew her on facebook, but it was still a shock. I also just found out another close cyster has stopped all treatments. Being taken off the bi-pap and going to return to her God.

I'm numb.

She is 42, born on my grandmother's birthday and a great woman. She has a daughter and a husband. She will be missed when she goes.

I am loosing count how many I have lost in the past month. Will it end?

It's times like these I want to stop being on the boards. Stop making friends with those around me with CF. But we all know I just can't do it. My heart is with too many people right now.

I worry about all my friends with CF. The ones waiting for new lungs especially.

This is a plea to God and the angels above. Please, please, please STOP taking them all away.

Monday, December 7, 2009

did way too much this weekend

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 Boston and now I added to the mix. It sucks, CF sucks. I want it to go away. And the sad thing is I will never “recover”. Not in the sense that most people would. I’ll never get that sleep back; I’ll never get the energy back.

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

Yet another friend lost to CF

We lost yet another CFer. This time a huge person in our world. Paul. Q. Donor Q.

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 never done before. And for anyone that knows me you know this is huge. I HATE the phone. But I talked to these people because we lost Paul. We lost him. I talked with him a lot. Not as much these last few months as I had done before. He used to be online at 5:30am when I was nebbing for work. We would chat a bit. He always spoke so well and half the time I could never understand him (LOL). But that was Paul. He was so intelligent and educated he made you feel almost dumb. But not in a bad way. I always wanted to learn more so I could be half as smart as him.

Last night my friends and I took our one friend to Atlantic City for her 30th birthday. We had a fabulous time! I managed to forget about all my deceased friends for a bit. I toasted them in the beginning of the night and then moved on. However, by 3:30 am I was exhausted and ready for bed. My patience was wearing thin and my mind was not as able to fight off bad thoughts. We had this small group of guys around us in the club. Totally harmless, they just wanted to dance. Once guy decided I was going to be his target. I just laughed at him. I wasn’t dancing (dam my CF lungs!). He wouldn’t leave me alone until I explained WHY I wasn’t dancing. Then he backed off, the dancing anyway. He decided to give me a lap dance later on. I just laughed. But then he picked me up and started to swing me around. BAD IDEA. I don’t deal well with that. Both L and K were like “oh shit he is done for”. I finally got him to put me down when he saw the fire in my eyes. I was fine, but his friend asked if I was ok, then my friends asked. I started to cry. Just small tears and no one saw. I made them stop. But the deaths and the night caught up with me. If I had been alone I would have bawled like a baby and I even thought of going to the ladies room and letting it out. But I didn’t have waterproof mascara and I didn’t want to walk around looking like a raccoon!

I haven’t bawled for Courtney, Ginger or Paul yet. I will. I know I will. I have cried a few tears, but that is all. One day it will all come out and I will sob like I haven’t in a bit. Perhaps when I get back to Boston to see Peter…I can cry when I see him, let it all out then.

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

Still shocked about Ginger

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 Atlantic City. I could drive down tonight and then come home tomorrow night, but I would be so ridiculously tired I don’t know if I should. Plus it’s an 11 hour drive. I could flu into Atlanta and drive the 2.5 hours into Jackson tomorrow. But that’s not going to happen either. I can’t afford it, nor can I run myself into the ground. Ginger would understand.

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


Its all not true. Maybe we didn't just loose 2 friends in a week. Court and now Ginger.

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.
Sent from my Verizon Wireless BlackBerry

Breathe Easy Ginger

We lost another today. H1N1 took my friend. I fucking hate CF!

She leaves behind a 6 year old son and a hubby who has been updating us all the time on FB. We heard the last one on Sunday and today everyone has been posting condolences on her page for her loss.

I am heartbroken.