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!!!!!

What's your dream?

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?

Phooey!!!!!!!!

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 28^th. 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 20^th. 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 23^rd 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!!!!!!!!!!!!!!!

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…

Numb

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.

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…

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 30^th 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.

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.

Maybe...

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.

One day I will not be the mom

There is a reason I am moving and a reason why I hate where I am now. Hopefully this person doesn't read it but who knows and oh well.

I am moving to get away from being the parent in the mother/daughter dynamic. Most of you know that I live with my mom and moved in here in June to help pay the bills since she lost her job. Well she refuses to get a "real" job stating that waitressing is plenty, yet we can't pay the bills still.

I have resigned from my post as helper. I'm done. This is the MAIN reason for my move.

I can't rely on her to support me when I can't work so I will go somewhere else where I don't have to see her lose the house. As much as I don't want to see her out on her ass, I am sick of watching her spend her money on alcohol and shit she doesn't need instead of paying the mortgage or the electric bill.

Any questions, feel free to ask.

Thanksgiving

The day when we give thanks for everything that has happened in our lives in the past year. The day where we remember those who are no longer around to enjoy the day with. The day we get it pig out like animals and not worry what people think.

So in honor of this day of thanks I decided to write up what I am truly thankful for. I encourage you all to do the same and think about what you have this year that you are thankful for.

MY FAMILY

I am truly blessed to have such a great support family. They are always there when I need them. We have our difference now and then, but that is normal. I don’t know what I would do without them! They really showed how much they care with the raffle and oxygen concentrator. Everyone has called to help sell the tickets and to help find me the best deal on the one I want. How amazing is that?!?! I love them all!

MY FRIENDS

I don’t get to see my friends all that often but they are always there for me. When I’m sick they visit me in the hospital. When I am looking to go out, they are ready to party. I can call and bitch about my day, or listen to them bitch. They are amazing!!!

And I can’t forget my online friends either. They are great too! I get so much support from them and just knowing that they know how I am feeling is a huge relief! We lost so many CFers this year, but I will never forget any of them. Sometimes it’s hard to be friends with people who may loose their battle before you, but it is worth the “maybes” to have friends like them.

MY JOB

I might hate it at times but I am very thankful to have one. It allows me to have health insurance (as shitty as it might be at times) and pay for all my meds that help keep me alive. It allows me to travel and keep my Jeep!

MY HEALTH

Despite having CF I consider myself fairly healthy. It could always be worse and I am thankful to be alive and “well”!

MY MEDS

Without them I would not be here…see above.

MY SERVICEMEN

I’m sticking with the “my” on this haha. I am thankful for all those serving our country and all those who have lost their lives doing so. We would not be able to celebrate today without their sacrifices. Thank you all!

MY DOG

I’m a dweeb and I love my Maggers with all my heart. I may want to kill her some days, but when she curls up next to me I forget all the bad!!!! She is my life!!!

ORGAN DONORS

Without them I would have lost many more friends this year. Thank you to the families of those donors who made the choice to save some someone else’s life. You are heroes.

Courtney Got her Wings

Breathe easy my friend.

I am sad that you are gone but comforted that you are at peace and no longer suffering.

I will always remember you!

Obit for Court

My wonderfully fabulous weekend!!!!!

Well I promised you all an update and you shall get one.

The weekend was awesome! I went back up to Boston to celebrate Shawn’s one year post transplant party!! The party was a great time! Kevin and Bill came up as well. So there were four of us CFers hanging around. And of course we forgot to get a group shot! Ahh!! Next time, because we know this won’t be the last party we have!!!! Notice I said we lol!!!

So my surprise happy news is…I am dating Tina’s brother!! We’ve been talking for about a month and we met last time I was up there. Things just went from there and we made it official this past weekend. He is a great guy and I am looking forward to getting to know him better and eventually moving up there and seeing where things lead. I’m not scared, he is Shawn’s best friend so he has seen what CF can do, and I’m happy as I can ever remember being. Full steam ahead!

Before anyone says anything, and Tina can confirm, I made the choice to move BEFORE he and I started talking more. He is just an added bonus and even more of a reason to haul my ass up to Boston. Although, I remember back in June when we had the meet up at Patti’s house, Tina mentioned that I should meet her brother. I just laughed it off. Guess she knew what she was talking about! It’s also quite possible she is more excited about the relationship than both of us haha!

In other bloggie news, our dear cyster Courtney is still holding strong. She is getting to say goodbye to her family and friends on her terms. I am looking into heading down for the funeral that is inevitable (God I hate thinking that way!!!), but it’s looking like I won’t be able to make it. I will be there in spirit though! I hope her journey is as peaceful as can be to the next world.

Courtney

I have tears streaming down my face as I ask all of you to pray for peace for Courtney. She has decided to stop all her treatments and return to her Lord. Please visit her blog (on the right side under Courtney sorry can't link it from my phone).

We love her so much and I hate hearing about her in so much pain. I hope she flies free as a bird and will meet us all on top of the Roc next year...

Love you Cysta!!!!!
Sent from my Verizon Wireless BlackBerry

Heading North!!!

Tomorrow morning I am heading up to Swampscott again to see my good friends Shawna and Tina!!!! It's Shawn's one year post transplant party yay!!!!!!!!!!!!!!!!!!!!!!!!

I have to stop at CHOP in the am first to pee in a cup. Last time I had it done (3 weeks ago) they found blood in my urine and I was not menstruating. So they are going to check again to make sure I am ok. After that it is smooth sailing to my favorite second home!!!!!

Tomorrow night I am having dinner with Shawn, Tina and her brother Peter...I will let you all know how that is and might even have some very very happy news to go along with it =D

So until Sunday night when I write again!!!!!!!!

Take care and have a fabulous weekend!!!!

A morning pondering for you all...

Last night I had dinner at my brother’s house. It was my mom’s birthday and my SIL was working so we decided to hang with my brother and help him with my new niece. He is a little wary about a 2 month old and being alone with her haha!! It will take a little time to get used to but no worries. We had pizza and made cupcakes. It was tons of fun!

Well as we were all eating I got out my enzymes and was proceeding to take them. James asked me if they were my pills. I obviously responded yes, to which he continued to watch me take them all.

So this got me to wondering…do children that grow up around chronically ill people, have a higher tolerance for that type of thing? James has seen me with my O2 on, watched me do my nebs and vest and sees me take my pills. He visits me in the hospital when I am in. It doesn’t bother him anymore. He used to be scared of my nebulizer and the loud noise it made. But now it fascinates him. So, do seeing this on a constant basis help him in “awkward situations”?

We all know what those are. The elderly lady in the grocery store with O2 hobbling along. The child points at her and asks, very loudly, what’s hanging from her face. (ok not a great example but you get my point, I hope)

Obviously it wouldn’t prepare him for such things as a person with no legs, or severe physical deformities, but could it give him a better understanding that everyone is different in this world?

It’s something to ponder…and ponder I just might…

My new CF Tattoo

I finally got my CF tattoo!!! I love love love it!!!!!!!!!!!!!!!!!

Never Over rated

I’m done with the heart ache, pain and tears

I want a man to quiet all my fears

Someone that is smart, funny and kind

Who can always seem to read my mind

I vow to be open, honest and true

Tell me does this sound good to you

Games are old, tired and outdated

Alas, our love will not be over rated

Together we can laugh, tease and cry

I promise to never say goodbye

My first "independent" move

My previous experiences with moving and why some people may think I am not going to actually move to Boston.

In 2002 I decided I needed a change in my life. I had a good job, was fresh out of college, single and living with my mom and brother. I wanted to move somewhere else. And not just out of my home, out of state. My choice was Arizona. The company I was with had an office in Scottsdale and I thought that it would be great to move there and keep my job. I talked about it with my friend L (who lived in GA – we had met when I lived down there in 7^th grade and we remained friends ever since) who was willing to move too. We talked and talked and talked and nothing happened. I don’t remember why but it never did.

Fast forward about 9-10 months and I am living in my own apartment. I am 22 and super happy. Getting trashed every weekend with another friend L (different one but I have known her since 7^th grade too lol). During our run of the town I make a decision to call an ex. He and I end up back together and talk about getting married. We even get so far as to figure out what to do about my apartment, where we want to live until we can buy a house and to pick a date (April 24, 2004). A few weeks later he ends things with me. I am crushed. Crush doesn’t begin to explain how I felt. Devastated, destroyed, shattered, heartbroken, worthless…you get my point.

It was after he did this that I again thought about Arizona. And seriously thought about Arizona. I looked up apartments, moving companies, schools (I was considering finishing my BS since I only had my AA). I talked to my boss about transferring with the company and things were put in motion. I had to quit my job in PA and be re-hired in AZ. But I was fine with that. I also looked into some other jobs just in case. I found an apartment, I talked with the leasing agent, and she sent me all the paperwork. Things were moving forward. I told my family, I told my friends and I began packing. In less than two months I had went from desolate and heartbroken to a new woman with a plan.

Unfortunately that plan was devised amidst all that heartache. And a plan sculpted with pain will end in almost the same manner.

I drove to my new life. Stopping for a few days in Durango to visit my two aunts and their husbands. I relished in the independence I felt and the freedom to do what I pleased. I enjoyed the landscape and seeing parts of the country I had never seen before. Maggie and I drove along, stopping every now and then to stretch our legs and of course at night to sleep. However, I was homesick. I was scared of what was waiting for me when I got there and reluctant to truly let go of what I had left behind. My heart was not entirely into the move. But I thought that once I got out there I would be fine. I knew no one but I would make friends.

When things aren’t meant to be, the world has a way of showing you. It is up to you though to listen to what is said. My first clue was the speeding ticket I got in Bumblebee AZ. I remember the name because I thought it was a silly name for a town. I was following traffic but the out-of-towner got pulled over. Check one. My second sign was driving up to Phoenix. I was expecting to be awed by high rises and buildings. Instead, it was low to mid rise buildings and mountains in the background. I adored Philly’s skyline and was disappointed it wasn’t there. Check two. My third, and should have been loudest, sign was the complex’s unwillingness to accept cash. I had brought all cash with me since I had closed my checking account (yes looking back I know carrying around a large amount of cash was stupid…I never said this was a smart trip) and only had cash on me. They insisted I go to the nearest bank, open an account and get a cashier’s check. They also said I could postpone the signing until the next day, but I was anxious to not sleep in a hotel again. So away I went. Check three. The fourth, and maybe this is tied with third for loudest, was them not having my key after signing my life away. I was dropped off at my “door” while maintenance went to find the correct one. It took over an hour for them to figure out where it had been. I eventually got into my apartment and “settled” in. Check four.

I unloaded my car, with the help of my neighbor and her boyfriend who were super nice. The apartment was great. I had plans for purchasing new furniture since I left my sofas in PA (way too expensive to have moved). I couldn’t wait to make the place mine. First thing I had to do was get food. Luckily there was a shopping center up the street. I remember standing in the cereal aisle looking at all the food and thinking how the brands were so different than in Philly. I started crying. I wanted to go home. And I didn’t mean my apartment, I meant PA. I couldn’t stay there, I couldn’t make AZ my home. I had been there for less than 12 hours and I was desperate to get back. I knew I had left for all of the wrong reasons. I grabbed some food that I knew would hold me over for a few days and went back to think on my new “plan”.

Phone calls were made to everyone, in hopes that someone would talk some sense into me and I would stay. That didn’t happen. The only person who told me to stay and give it a try was my mom. My friends we ecstatic that I wanted to come home. To this day I remember sitting on the floor in my dining room, knees to my chest, sobbing to my dad that I wanted to come home. He told me to do it if I wanted to. I said I didn’t want to look like a failure to him. He told me that he was proud of me for trying and that if I wanted to come back, he supported it. That did it. I’ve always been daddy’s little girl.

Needless to say I came back home. I was able to get my old job back and I moved in with my grandparents. I was around for the birth of my nephew James (I had found out Tracy was pregnant a few days before I left).

Looking back I realize that I left to get away from my life that was here. I didn’t leave to go on to bigger and better things. I had never visited AZ before; I had barely even seen pictures of it. I knew no one and expected to make friends. I don’t make friends easily. I never have and never will. I’m shy and quiet (yes I swear I really am until you get to know me) and avoid people. I don’t know how I thought I would make it. I wasn’t secured a job and I was NOT happy. I learned a lot from that adventure of mine. I grew up and realized that I could do anything I wanted if I put my mind to it. I also learned that every action has consequences. I was still paying off the debt from that trip three years later (apartment complex was not too happy I stayed a day).

So you can see why people are skeptical about my choice to move to Boston. But things are entirely different. I have friends up there, I am in a better place in my life emotionally, I’m not moving for some guy, I’m moving for ME. When I first started thinking about AZ in 2002 I thought that I could travel and live in different areas of the country. I thought about North Carolina, Boston and NYC. I even contemplated Florida so I could ride all the time (horses). But I have stayed in PA since coming back in 2003. Ironically, this Thursday the 12^th will be exactly 6 years since I came back. So much has happened since then and I am ready to begin the next chapter of my life.

This is the view from my 3rd floor apartment in Scottsdale.

Breathe Easy Lauren

Lauren lost her battle with CF on Tuesday afternoon.

Please keep her family and friends in your thoughts as they begin the journey without her.

You were an awesome woman Lauren and I hope you are at peace now.

Prayers needed

Please pray for two good friends of mine, Lauren and Ginger.

Both are vented, both have CF.

Both have families and friends that love them very very much and want them around much much longer.

Talked with Beth

I had a great conversation with Beth Sufian today. She was able to answer a lot of my questions about SSDI.

I now know what I need to get in order before I apply, and also that I should wait until I move to start the paperwork. That way I don’t have to worry about things getting lost when transferred. Works fine for me. I have moved my moving date up to February now. She also told me I am making a smart decision moving to MA. They are the only state to guarantee health insurance coverage for their residents. You can not be denied for a pre-existing condition. So I can COBRA my benefits until my residency takes affect and then search for my own policy which may be more, or may be less, but will hopefully be better!

I am so excited to do this now! Moving, SSDI, a fresh new start. Makes me happy and excited and scared!!!!

Wish I could go tomorrow!!!!!!!!!!!!!!!!!

Where my peeps at? errr From?!?!!?

Ok so here is the tally of where you are hail from!

USA:

Alabama

New York

North Dakota

Massachusetts

California

Michigan

Arizona

Florida

Oregon

Colorado

Washington State

Maryland

Indiana

Texas

Oklahoma

North Carolina

New Mexico

Pennsylvania

Connecticut

Ohio

Maine

Utah

Europe:

England

Czech Republic

Netherlands

Canada:

Alberta

British Columbia

Other:

Uranus (TOM!!!!! Who is really from NY lol)

Thanks guys it’s great to see where everyone is located and reading my blog. Makes me feel awesome!

Slight predicament

Today I had clinic. It went well. Thankfully I got my PICC pulled! Tomorrow morning when I shower it is going to feel amazing. My FEV is back up to 45% and everything sounds good.

I was able to talk to the social worker and here is where my troubles begin. I'm not so sure about SSDI now. I'm very worried that I'm not going to get much (or at least what my print out each year says I qualify for) and you can't make much working part time on it either. I REALLY REALLY REALLY want to move to Boston the end of this winter, but I can't live there if I'm making didly squat. Its not like I'm going to have someone to live with and yes a roommate is out of the question.

I was afraid she was going to tell me something I knew was true but hoped it wasn't. I won't qualify for Medicaid in PA because my company offers COBRA. So I'll have to pay $400 a month for that PLUS my shitty co-pays. That right there would be 75% of my SSDI income. Not good.

My mom told me she would like to move to Key West in the next couple of years. So either way I would have to live on my own, be it down here in Langhorne or up there around Boston.

My thought is what if I find a full time job when I move? Is that so bad? I know what the minimum is that I need to bring home to survive. However, if I don't work I can take classes which gets rid of my student loan payment for the time being. Maybe I can find something good up there that will allow me to live on my own.

I don't know what to do. I really want to move and I really want to be independent about it. I will have to look more into MA welfare programs and see what I can do. I hate saying welfare but its needed. Or maybe I can find a small part time job that will offer benefits. As long as I can get health and rx coverage I'm good. I'll skip eye and dentist if I need to.

And of course this brings up a secondary thought. If I decide to work full time up there why am I waiting until March to move? I could go right after Christmas.

So much to think about, so much to decide...
Sent from my Verizon Wireless BlackBerry

Untitled Poem

The colors
Bright, sunny, bold
They shine like glass
Piercing my eyes
Blinding me with their beauty

Looking out over the water
I feel a sense of peace
No one can hurt me here
No one can disturb me
If only I could stay forever

Feel the wind rustling my hair
I look up into the breeze
The cool air refreshes my mind
Enticing me with its dance
Calling me to settle down

Where are you from?

I'm curious to see where all my lovely blog readers are from!!

So even if I know you and know where you live, add it here so we can all see!!!!!!!!!

I'll tally them up at the end of the week and see the results.

My trip to see 2 of my favorite people

While I can sit and bitch about the hell of my day so far I won’t. I’ve been home for less than 12 hours and it has been HELL HELL HELL. I should have stayed in Swampscott!!!!

So instead I will talk about my awesome visit with Shawn and Tina!

I got up there on Saturday night. It started out rough. Apparently my grandparents are watching over me. My Jeep fishtailed and hydroplaned on an on ramp and I missed the guardrail and the cars coming at me as I spun around. I ended up facing the wrong way on I-295 as cars were going around me. I pulled off to the side and was like “WTF just happened?”. I didn’t cry, I didn’t shake. I just sat there wondering how the fuck I was still alive and didn’t hit ANYTHING.I made it up to Boston without another incident but boy was I nervous for the next two hours after it. Guess I need some new tires!

Sunday we did some witchy things in the rain. And then went to Tina’s brother’s house (who is cute LOL) for dinner for his birthday and their aunt’s. It was a lot of fun. A very entertaining group and I can see where Tina gets her personality!!! (It’s a good thing Tina!!!). Sunday night we went to the house of Seven Gables based on Nathanial Hawthorne’s novel by the same title. It was really cool.

Monday we did more in Salem and Marblehead and visited the lighthouse. God it is BEAUTIFUL up there! It was exactly what I imagine NE to look like. The rocky coast, the crashing waves, the blue skies and boats. I regretfully left Monday afternoon.

I loved it up there!!!!!! It was so beautiful!!! I so want to live up there!!!! The thought has crossed my mind way more than once. I could come back every 6 weeks for my DRs appointments and since I’ll be on SSDI I won’t need to worry about looking for a job. Plus I’ll have friends.Hmmmmmm……

So I leave my faithful readers with some awesome pics of the coast… (click on the pics to enlarge them)

Tina, Shawn and I

You can see Boston in the back

Gorgeous

Boston

Does it need an explanation?

Trying this again

I wrote a nice long blog the other day, attached a picture, decided to delete the picture and oops there went the whole blog. Not easy typing on a blackberry so I decided to wait to try again. So here we go!!

I am feeling a whole lot better. The tightness is gone and with it is the pain. I just have some slight soreness but I attribute that to not using my lungs for two weeks. So I pretty much feel almost baseline. There was only a small infection behind my blocked airways which is good. Of course if I had been smart and called right away there wouldn't have been any haha. Another patient was admitted yesterday for the same thing - a bad reaction to Colistin. So I feel better knowing that this is most likely what caused my bronchial spasms.

The Prednisone did wonders and I'm glad we used it. Took the inflammation down almost overnight. I've been tapering it since Sunday and I'm down to 5mgs in the am and 5mgs in the pm. So this way when I go home I'm off of it. But its nice to know it worked so well so that if this happens again we are prepared. I'm sure I'll have to try the Colistin again just to see what happens. It could have been a fluke, it could have been that or maybe it was just the seasons changing. But knowing I have the Prednisone if it does happens makes me feel a bit safer. Those spasms are SCARY!!!!

I've been lucky with tons of visitors this round. I feel blessed to have such great family and friends. Its been good for my spirits too. I only had one other day where I was a little upset. But I woke up the next day feeling better. You can't dwell on things that can't be changed. Just have to accept them and move on.

One of the great decisions I made in here is to definitely do SSDI. I've spent my time in here worrying about work and that's not fair. I shouldn't have work as my top priority. I need to focus on me and get me healthy so when I am evaluated for transplant I am a good candidate. I need to work on exercising so that in the spring I can run that 5k. I need to hang out with my family and friends more so that everyone has good memories of me when I pass (hush people). I don't care if people view me as lazy anymore. At least I'll have a dam life right?!?!

I'm hopefully coming home today or tomorrow. Dr H is in Minn at the CF conference and there is another pulmonary Dr filling in for him. I saw him yesterday and he said he would shoot to get me out today. So that is exciting. If so, I can go to Boston for the weekend! My birthday present to myself wohoo!!! I'll take it easy seeing as how the person I am visiting ( well the CF part of the couple lol) was just released from the hospital too. But we will see Salem and I can only imagine how awesome it must be around Halloween! Bring on the witch hunting!!!

That is all I have for now. I say leave you with a request...
If everyone could say some prayers too. My step mom's liver enzymes are elevated and we are worried the cancer may have spread. I think we find out today or tomorrow. Not too sure. But please keep her in your thoughts and prayers. Thanks!

Sent from my Verizon Wireless BlackBerry

Happy Birthday to me

Today is my 29th birthday! I'll have to update all my info once I get out of the hospital.

This is my first time spending my birthday in the hospital. So far its not too bad, though I did only wake up an hour ago. But positive thoughts!!

The last two days were very rough for me. Thursday I didn't get in until after 5. It took a while to get a bed available. I did have a good laugh when I got here. I was waiting in admissions for transport to bring me to my room when Dr H walked in with a wheelchair. He was there to take me up!!!! I cracked up!! Nothing like service with a smile haha!!! He asked me how I was doing and I said slightly better. Then he listened to my lungs and told me I was moving a tiny bit of air but that Wednesday a stone statue was moving more air than me. Which I am pretty sure was the truth. He had given me some Prednisone to help and I guess it did on a very small scale. I took 30mgs over the course of 15 hours. Just a low dose since I'd never taken it before and no one was there to monitor me.

Thursday night was rough for me. I cried a lot. Just couldn't stop. I felt bad for the xray tech and the RT. Not hysterics, but just tears. I kept thinking about being in on my birthday, it only being 2 months since I got out (August 24th my PICC was pulled), leaving work with a crap load of work that I didn't get to finish, and having no one to talk to. I don't mean friends, I mean a current crush, boy toy, special someone.

I woke up Friday feeling slightly better emotionally but still shitty physically. Fevers all day, needing treatments every 3 hours, low O2 sats and bad lung pain. I "passed" the 6 minute walk test. Or failed. Whatever you are supposed to do lol. I didn't use O2 but I should have and we got lucky since I had a treatment 20 minutes before I went. I was still very SOB during and after and dropped into the mid 80s. I got to nap on and off the rest of the day though luckily. I had my O2 on a bit since resting I was around 86 87. So yeah.

Dr H put me on Prednisone last night and through the weekend. We started with a burst of 40mgs last night and then 20mgs this morning and 20mgs tonight, same tomorrow. So far the 40mgs has helped! I don't feel nearly as tight and I can take a sort of deep breath. My fever has broke thankfully but I've also had about 3000mL of saline since Thursday night haha. Now hopefully I can start getting the gunk up that has been blocked behind my non working airways.

I'm super bummed that I can't go to Boston next weekend. I was going to go visit Shawn and Tina and also see Jenn's fiance Andy while I was there to get some of Jenn's yarn. And Sunday I was meeting with a friend of my friend's who does professional photography. He was going to do a shoot with me! But he lives in Washington state and is only out that weekend for a wedding. So that is shot to shit too. Oh well. I was looking forward to seeing the beautiful foliage up there and looking around to see if I'd like to live there since I've been considering it. Oh well maybe the following weekend!!!

Well that's my update for now. I'll keep everyone posted and hopefully I'll be out by Friday (and if I am. Maybe I can sneak up to Boston anyway lol).

Sent from my Verizon Wireless BlackBerry

Being admitted

Well I am going in the clinker tomorrow. FEV1 is down to 26% and I am so SOB I feel like I am strangling. Dr H said it sounds like a severe asthma attack since I benefit SO much from the Albuterol. So who knows. But looks like at least a week in lock up.

I am going to talk to them about a possible port placement. I don't wanna deal with another PICC. I'm dreading it. And as much as this admission sucks, it adds to my case that I should be on SSDI :)

Gonna go pack my bags and enjoy dinner at my dads tonight!!!!

<3

Tiring week!

Today has been a semi-rough week. Between the Colistin making me tight as all hell and the low grade fevers I have been running, I am exhausted! My FEV1 on Wednesday was 32%. That was pre-bronchodilator but still. 9% drop is not fun!!!!

I know it is the Colistin because it is the same way I always felt on TOBI. I guess these inhaled abx are not good on my lungs. They are supposed to help but all I feel like doing is crawling into a hole for 28 days and hoping that it goes really really fast! It got to the point where now I am doing a treatment in the middle of the day at work. I need to in order to function. It’s really bad. And kind of weird that at the 4 hour mark I can feel my lungs constrict. I go in the back bathroom at work (privacy is needed for nebs lol) around 1ish and by 5 I am tight again. But at least it helps me get through the afternoon. And when I start to get tight I feel the fevers pick up. Very odd.

The fevers started Monday night. It was only 99.5 but it was there. Then I was fine until Wednesday when it was 99.6 at the DRs and then it hit 100.5 by night. Now I am running between 99.5-100.5 everyday. I feel sort of ok, just tired. I assume I am fighting something off. I wish I could figure out who was winning!!!! I’ve been going to bed around 8 every night so sleeping is really helping. Of course I don’t get home until 6:30 so I don’t get a dam thing done at night except for my meds and that’s it. Social life what? LOL! That will be one of the good things when I go on SSDI. AT least I won’t have to worry about my life disappearing when I get fevers and need to sleep. I can sleep during the day yay!!!!

I have another appt this Wednesday so based on how I feel I will see what I need to do. Hopefully the fevers will be gone and then I can be safe haha!

What really stinks is I can't run at all now. I just can't do it. I cough constantly without movement and when you add walking I can't stop. I don't even want to attempt running!!!! It sucks because I am going to have to start over when I am done with the meds. How am I to train for a 5k when every month I have to take a month off? No bien!!!!!!

pros and cons list

I'm anal we all know this...so here is my pros/cons list for SSDI, LTD and working.
I emailed my social worker at clinic today to start the process of SSDI. Or think about starting it. And figuring out when.

SSDI

Pros:

Go to school full time

Not stress about going to school and trying to work

See family and friends more

Possible improvement in health

Work small part time job for extra income (Barnes and Noble? Discount!)

More time to read/crochet

Exercise more regularly

Grants for school maybe

Place student loan repayment on hold until I can work again

Food Stamps / State insurance

Cons:

Less money

Health Insurance issues

May not be able to get student loans

Might not be able to pay all bills

Money stress

Full Time Work

Pros:

Keep current income

Health insurance

Independence

Like my work friends

Easier to get student loans (possibly)

Cons:

Sleep deprived

Can’t exercise whenever I want

Will wear myself out with school and work

Can only take one class at a time

No life / never see friends or family

Work related stress

LTD:

Pros:

Go to school full time

More time to read/crochet

Exercise more regularly

See family / friends more

Possible health improvement

Less stress of working

Can get SSDI while on LTD, LTD will just deduct SSDI payments

Cons:

Can not work at all

Might not get any grants

Dealing with the insurance company every week to get paid

Stress about going to school while on LTD

Unsure of health care options

Health Care Reform

I figured it was time that I took a stance on the big heath care reform issue. Yes I voted for Obama. I am a Democrat, and he was the lesser of the two evils running. I was not overly thrilled with him, but I prefer him over McCain. I do like Obama. I think we need someone young with a fresh outlook running our country and trying to get it back on track. He has not been in office a year yet and people are disappointed in him. Rome was not built in a day my friends. These things take time.

Obama's Speech

Follow that link for the full speech he gave to Congress on the 9^th.

Much of what he said I agree with. The problem is making it happen. He has many great ideas, ideas that could possibly turn our country around. But with the government’s system of checks and balances, it will be a hard road to get those policies into law.

I’m a middle class citizen who receives my health care through my employer. I pay $110 a month and have decent coverage. My co-pays are high, but not as high as some. I also pay for the higher/better insurance that my office offers. I pay as much as $50 per drug per month. On average my co-pays are about $300-400 a month. That’s a car payment, on top of my car insurance, rent, jeep payment, cell phone, gas, food and student loans. I work my ASS off so that I do not have to rely on the system, yet I can’t afford the insurance that I have. And come December, everything will go up again. It’s out of control. It’s also at a point where it might be cheaper to not work and go on welfare. When a person who WANTS to work, is forced to not work because it is “easier” to be jobless so they can afford their medicines, you know there is a problem.

THAT is what I want to see addressed in the health care reform. I want to see middle class, hardworking citizens be able to pay for health care AND be able to pay for the medications they need to take. I have no issues paying for my own coverage, I have no issues paying co-pays, but when I can get the EXACT same drug at a pharmacy without insurance and pay only $4, but pay $30 with insurance, then I want something to change. Don’t believe me? Target has my Bactrim DS tabs on the generic list for $4, if you have no insurance. I pay $30 at Rite Aid with my insurance co-pay for generic Bactrim DS. They are IDENTICAL. So why can Target do this, yet the insurance company is making me pay 6 times as much?

Another example…I need oxygen when I work out. I am lucky enough to have a treadmill at home so I can use my concentrator when I exercise. I called my insurance company a couple of weeks ago to find out how I could get a portable concentrator so that I could travel and also run outside while using it. They told me that I would have to pay half of the cost if I could find a DME (durable medical equipment) retailer that would do a lease to own option. My price…$2500 give or take. I would have to pay that much out of pocket! Where am I to get this money?

I agree with Obama’s plan. It has what I feel would help the country and if it can lower costs and ensure that everyone will have coverage than good. That’s what we need.

I know many people are hell bent against the plan and everyone is entitled to their own opinions. But step in my shoes, or the shoes of someone with a terminal illness and tell me how it feels to HAVE to work to get coverage because you are not able to get insurance on your own. Or if you do, the insurance company doesn’t have to cover the pre-existing condition.

For those of you who are against the reform. WHY? Because you don’t’ won’t to loose your current coverage? You won’t. Because you don’t want to pay for other people’s insurance? You do that NOW! We are already paying ridiculous costs for Medicare and Medicaid because the price of healthcare climbs each year. Under this plan, costs will be capped and the system will be treated much more like a business and not a monopoly. Right now, prices can be set basically anywhere since there is no where else we can go to get health coverage. This will change. The government will offer a lower cost health plan that will allow people to be able to purchase their own, if they can. And it will build competition to the big name companies now, driving prices down. How is that a bad thing?

Another issue I know many people are not happy with when it comes to the reform is requiring everyone to have some type of coverage. Yes this may seem harsh and what not but think about it. When an individual goes to the ER, who does not have health coverage, and gets treated, who do you think pays for them? We do. Through taxes. If everyone is required by law to have coverage then this will bring the costs to us down. There will always be those who slip through the cracks, the country is too large for that, but if the majority of people get coverage then we can essentially stop paying for them. It will be like auto insurance. You are required to have coverage if you own a car. Many don’t and we pay for them through higher premiums. If you get caught driving without insurance you pay fines etc. I don’t see anything wrong with that. Same goes when applied to health care.

Everyone SHOULD have insurance. You never know when something bad will happen. You can wake up tomorrow with a rain tumor and if you don’t have insurance then how are you getting treated? Don’t you want options? Don’t you want to be able to chose who you see and where you get treated?

If Obama’s plan is passed and goes the way it should (or even with some modifications) our country will be much better. We are one of the richest countries in the world yet millions and millions of us can not afford health care. A basic right. Life, Liberty and the Pursuit of happiness. LIFE people, LIFE. Without healthcare I can’t have life, I’ll be dead. Whether or not you agree with me, or the reform bill, you have to agree that something needs to be done about it.