Live Life then Give Life, Please be an Organ Donor.

Saturday, May 3, 2014

It's been forever.

Hello World!

Oh wow it's been forever! I do apologize. But life has happened and hit me full force this past year. I'm not sure where to begin, so I'm sorry for rambling. I'm going to try and be better about keeping this thing updated. It's a nice vent and release that I miss. Too much stress built in my life lately. I'm not a happy camper about it.

The past year has brought heartbreak, love, laughter, and many tears. It has been a rollercoaster to say the least. I'm hanging in there. Some days are a lot harder than others.

Yesterday, May 2nd, was a hard one. It was my Dads birthday. I miss him a lot. I miss his jokes and sarcastic comments. I miss being able to just pick up the phone and ask him any cooking question and he always had an answer for me. In the past year I haven't even watched much Ellen or The Chew just because they were his favorite shows and I can still hear his laughter in my head. I know as time goes on it will get easier but it's still hard on a lot of days. In thinking him daily.

My older brother had a baby this past December. She is so adorable. And she came at a great time to distract my Mother from all her heartache. I know she hurts but she only shows it occasionally. She is one of the strongest people I know. She definetly has the weight of the world on her shoulders. If I can be half the woman she is I'll be happy with my life.

Our house that burned down to the ground has been rebuilt and my Mother and younger brother moved back in. I'm not living there as I moved out in December to live with my boyfriend Brian. It was a big move but I'm glad I did it. I craved independence after transplant. I have been dependent on others for so long that I need to prove to myself and everyone else that I am capable of taking care of myself.

Health wise, recently it's been a little crazy. I've never had pneumonia before in my life and this winter I got it twice within a few months of each other. It was awful. Thankfully everything has eared up and myungs still look great. No rejection!

I'll be updating the rest of my page in the coming days.

Thanks for all the support and love you all give me. It doesn't go unnoticed. I truly appreciate it.



Breathe Easy

Monday, October 21, 2013

Overdue - Its longs!

Hello World!

Well, its been 5 months since I decided to say anything on here. Most already know why, but for those that don't and only follow my blog, I apologize.

On June 13th my house burned down. The whole thing. I grew up in that house, all 27 years of my life were spent there. The worst part, I lost 3 of my dogs in the fire. My parents, myself, and my boyfriend were home at the time. We woke up to windows exploding from the heat pressure. Less than 2 minutes the entire attic was engulfed in flames. We just barely made it out before the ceiling started to fall. The firefighters found our oldest dog, Shotti, curled up in a sleeping position - she never even woke up. They also found Lucy and Tucker huddled together under my parents bed - I find small comfort in the fact that they were atleast together. They all passed from smoke insulation, thankfully none were burned. Our 2 small dogs are still with us. Max followed my mother right out the house. Ruby got scared and hid under my bed in the basement and firefighters found her for us. My heart hurts for the lose of our home and everything we ever had. They say "its just material things" but that was 30 years of our family's life. That's a hard loss, material things or not. Everyday my heart still hurts for the dogs. I carry Tucker's collar with me everyday. I miss him the most.

I got Tucker as a 9 week old pup. He had been there for me through some of the toughest situations I've had to deal with. He kept depression away, kept me active, made me laugh, gave me something to live for when I felt like there really wasn't much left for me in this world. I know he's just a dog, but he gave me purpose again. I still fight off guilt on a weekly basis that I left him behind in the house. I replay many different scenarios in my head but everything is 20/20 hindsight.

On June 29th My Dad lost his fight against cancer. He fought long and hard for 4 years. While he was taken way too soon, he lasted 3 1/2 years longer than the Doctors thought he would at diagnosis. I'm still not ready to share the whole story about him. I miss him everyday. I will say this, we had that Dad - Peanut connection until the end. When I was little we watched that movie HOOK. There is a part in the movie that one of the lost boys smushes adult Peter's face all around and they yells There you are Peter. I would do that to my dad. Maybe 2 days before he passed, his last day of really being aware of anything, we were sitting and just talking and I looked at him and said There you are Peter. He just laughed and said I was weird. He's my Dad. He got me. I miss that.

Through all this junk I have seen a kindness and generosity in people I've never seen before. Its amazing who comes out of the woodwork to lend a helping hand in a time of tragedy. I am forever grateful to those people. Whether you helped us move into the rental, donated items, or simply brought us coffee the morning of the fire. You will not be forgotten. I will forever be indebted to you. Paying it forward in anyway possible.

As of right now, My mother, myself, boyfriend and younger brother are living in a rental house. Our old house should be rebuilt by February/March. We are making do with where we live now. Still doesn't feel like home to me. Once we move back into our old home, I think I'll get another pup. I could never replace Tucker but I feel a void in my life without a dog.

On a final, unrelated note: If you pray please send one up for my friend Leah. She has Cystic Fibrosis, has had a double lung transplant, face chronic rejection 2 years ago. And now she sits in a hospital bed. She just had a Trach put in and a new feeding tube placed. Anything positive thoughts her way would be appreciated.

Breathe Easy

Monday, May 13, 2013

Dad Update

Hello World!

Its been a while. Its been really crazy busy. Life has been throwing lots of curve balls my way, I've even been hit by a couple.

My Dad is not doing well. At all. I hate to admit it, but this is the end. We will all be lucky if he is still around in the Fall. For those that don't know, My Dad was diagnosed with stage 4 colorectal cancer in July 2009. Since then he has defied the odd and is still here. The cancer has spread of the years and in the last few months he is declining at a rapid pace. The Cancer spread to his liver, lymph nodes, spine, and other parts of his bones. In the last week or so he became 90% wheel chair bound. He is only allowed to walk a couple feet at a time. He is in so much he barely moves, he's doped up on pain meds 24/7. We are still trying every possible outlet to give him more time.

Life has been really stressful. My Dad's young, only 57. He's never going to get to walk his only daughter down the aisle. He's never going to get to meet his grandchildren. Its just not fair. And I know life's not fair but come on!

Life likes to play cruel games. Giving me new lungs and a second chance at having a 'normal' life, then goes and takes my Dad so we can't enjoy it together. What's that about?? Does life not want me to every be truly happy? I just don't get it. Hasn't our family been through enough? We need a break. We deserve a break.

I hate complaining about stuff because thats not how I was raised. But I've kept too much in and I boil over at the most random times. And I'm never mad or angry at anyone else, mostly my self and the situation. Can't help it. I'm a lot like my mother, we want to fix the things wrong. And the fact that we can't fix my Dad, is so stressful.

It breaks my heart everyday seeing him get worse and worse.

Breathe Easy

Thursday, April 4, 2013

Spring Baby!

Hello World!

Its Spring Timeee!!!! Yayyyyy!!!!

Ok so here's the skinny on the 5K. Its being pushed back. Between where the event is being held and the training to accomplish it... I'm not ready. Now I know I could easily walk that far, I'm basically doing that in May for Great Strides. But I really want to be able to run at least half. So I'm going to push it back, train hard all summer and maybe complete one in the fall or next spring. But be sure, it will happen. I want a medal darn it!

I will be participating in the Cystic Fibrosis Great Strides event. I'm walking in Wolfeboro, New Hampshire. So if you are around that area, sign up, walk with me!! Its outside so even if you have CF we can walk 6ft apart! If you don't live around here and are really interesting in walking, Great Strides is a national event. There is most likely a walk site right near you! You can be an attached team to mine - Breathe Easy or start your own team and create a great name! Check out www.cff.org and click Great Strides to register right online! Its a lot of fun. I encourage you all to join! If you'd like to sponsor me in the walk check out  http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=8423&idUser=470928 Any donation is helpful. I'd be grateful if you spread the page around too. Go ahead, whore it out! :)

Um, anyone watching Survivor?! Cause its the greatest ever. If not, get on it, then tweet me about it.

What else is new.... hmm... Well still looking for a job. Won't complain, you are probably sick of that haha.

Oh, Oh, I know..... I'm planning on a nice spring hike to celebrate my 9 months post transplant on April 22nd. Assuming weather permits. Its going to be great. I'm going to hike the same mountain that kicked my butt pre-transplant. I attempted in summer of 2011, about 1 1/2 yrs into waiting for new lungs. I had my O2 tank cranked up to 8L, 2 huge Gatorades to fight dehydration, and my friend whose now a nurse with me. I made it half way... maybe... and then I had to turn around. I was feeling light headed and very tired and my muscles were shaken and twitching in my legs. So needless to say I didn't make it to the top. Well.... its happening. Nothing will stop me now. It'll just be mountain 1 of 2013!

Just a reminder April is National Donate Life Month. You should already be registered, but if not here's the website, takes 5 minutes! www.donatelife.net OR visit www.donatelifevoices.org You get a free t-shirt when you do!! Now that's incentive!! :)

Breathe Easy

Friday, March 15, 2013

Bogus

Hello World!

Ok so if you are part of the Cystic Fibrosis community you most definitely heard about the new policy being implemented by the Cystic Fibrosis Foundation. The new policy states only 1 person with CF will be allowed to attend any indoor event. And the 6ft policy applies to all outdoor events.

Now I don't have a problem with the outdoor policy. But the indoor policy... bullshit! How can you ban people with the disease you are fighting to cure? How can you tell people what they can and can't do? How???

I get it, germ control. Well I'm not going to events to make out with other CFers. I don't got to events to cough or be coughed all over. I go to events to raise money for a cure. To show support to other CFers going through the same shit. Unless you have CF you don't know. We aren't allowed to have support groups, now you want to take away from fundraising events?

Bogus.

Its also discrimination. You can't exclude a group of people for something they can't change. Thats wrong. How dare you take away my right and choice to attend an event? CFers aren't stupid. We are probably more aware of germs, and whos sick around us than a "Normal" person. We have to deal with this everyday.

Masks, gloves, make EVERYONE wash their hands when they enter the event. There are other ways to go about infection control.

You know CFers can get sick from ANYBODY nit just other CFers. They can carry all the same bugs we do, their body just handles it better. So whats next, no events at all?

I am pissed. I don't like being isolated for something I was born with. Its my life. I should get to decide if I want to "risk it" at a CF event, not you. I will NEVER live in a bubble afraid of the world.

We are human beings. NOT a disease.

Breathe Easy

Monday, March 11, 2013

Praying to the Knee Gods

Hello World!

Do you know how hard it is to find a job after being out of work 5 years??

I got a job at Petco for a brief moment. But the people there were just not good people. I'm not someone who will just "do a job." I value my time too much. Which most people will say "beggars can't be choosers." Well I'm not begging. So I get to be choosy!

I just want a job I enjoy, and be able to support myself. I know its possible. Its just frustrating. Some one close to me gave me a nice piece of insight recently, she told me that maybe I haven't found the right job yet because the universe (or God if thats your thing) is giving me this time with my Dad. Not working allows me to spend time with him more. Even if that time is just sitting in the same room watching The Chew. I do value that time. And as he gets worse its always in the fore front of my brain. He may be a many of many words, but they are usually wise words.... or hes making fun of you. Either way I like it!

So I'll continue the job hunt, looking for something that fits me... and I don't have to fit the job. Hopefully something comes along soon though! :)

In other news, I'm digging the warm weatherrrr! Spring and summer are my favorite seasons. I can't wait to get out on the boat again! AND ride a jet ski again! I haven't been able to in years because of my O2 tanks... not anymore!!

In my last post I mentioned I signed up for my first 5K - very exciting! Well I have my first running injury!! Can you believe it! Me... with a running injury!! I can't even believe it! So cool.

Well both my knee joints are close to being shot, thats no fun. No running for 2 weeks and I have some regiment I have to follow that involves ice and stretching and all that hoopla. Hopefully they will be better and I can start running again, or this race is REALLY going to kick my newly growing (thats right 102lb these days baby!) booty!

So if everyone could just send a thought to the Knee Gods, I'd appreciate it.

On twitter recently I've learned of a small warrior.... yes warrior. I had to wait 2yrs 2 months and 2 days for my transplant. Riley O'Brien waited 3yrs 3 months 3 weeks 3 days for his transplant. Riley is 4 years old. He receive a new heart and 2 lungs. Like I said WARRIOR. All my good thoughts go to him right now as he recovers. He has a long of recovery ahead but he has support from across the globe. You can follow him at @Smile4Riley or find them on Facebook " Smile 4 Riley."

Now, go out and register to be an organ donor. You never know what might happen to you the next day. Don't let your wishes go unheard. Talk about, write down, register! It doesn't have to be a morbid subject. Its called the Gift of Life for a reason. Please, if you haven't already, register. www.donatelife.net It takes a matter of seconds... 2 minutes tops depending your internet speed.

Breathe Easy

Saturday, March 2, 2013

Been A Little Bit

Hello World!

I bet you thought I forgot about you..... NOPE!

Just been been busying. February just flew by. Turned out to be an up and down month for me. I'm not working anymore, but the job search. Still hopeful I find something perfect. I liked working at Petco, but the people there just weren't for me. Not sure what I want to be when I grow up so I'm still searching. It would be great to find a job where I could actually use my college degree. Its not easy putting together a resume when I haven't worked in so long. Right after I graduated in May 2009 I ended up in a coma in Sept.... so needless so say there is no experience here haha. I could change a dressing, distribute meds oral and IV, show you have to shower/bath without getting IVs wet, administer feeding, set up IV or Feed Tube pump, change a mickey button, use a bipap machine, count calories, eat til I puke then eat again because I just wasted all those calories, handle a coughing attack which leads to puking while driving, But those aren't really skills people want on an application. So I feel a little stuck. I just need one person to take a chance on me. I'm a good worker, its in my blood!

I also celebrated my 27th birthday this month! So awesome. One of my best friends happen to have a birthday 2 days after mines. So we did a joint birthday bash. It was fun. Lots of laughs, yelling, game playing, and just a smidge bit of drinking. It was great. One of my other best friends took me out to dinner on my birthday too. That was fun, got to meet a lot of new people and eat CHINESE FOOD!
So thankful to celebrate my 27th birthday. In Sept 2009, the doctors weren't sure I was going to make it out of that coma, so Feb 2010 was my 24th birthday, I was so so so thankful for that day and since then my birthday wish was always to just make it to the next one, just give me one more year. Since I got my transplant in July 2012, I'm free to wish a little bigger this year. For that reason alone I'm forever in debt to my donor. They saved my life.
Birthday Shots!

My Dream Team!


Oh hey, I signed up for my first 5K ever.

Yes, me, I really did it. A good friend named Gabe, who also happens to have CF and also happens to be less than a yr post transplant and bulletproof, asked me if I would do this with him. I was really not sure at first. I have NEVER been a runner. I usually give people with "run for fun" grief. So I mentioned to a few people I was thinking about doing this and everyone one of them said I was nuts and no way could I do it.... so I committed that day. Don't ever tell me something is crazy and I can't do it. Do you just meet me? Read MY story. Don't doubt me. Ever. I can and will complete this race. Will I be able to run the whole thing, probably not. But it won't stop me from trying. I'm a pretty stubborn person when it comes to these things. I don't like to quit, take the easy, or worse not ever try. That's just not me and never has been.

Ever pre-transplant when I had an oxygen tank to lug around, tube feeds to do, and a wheelchair I went boating, attempted hiking, little bit of swimming - all that junk wasn't going to stop me then. Nothing can stop me now.

Live it up, Laugh at yourself, Be kind to others, and Dream the impossible.

Oh and happy 30th birthday to my brother Jason!!! You're my favorite red-head!
 
And check out Gabe's Blog, also called Breathe Easy! https://gwpoland.wordpress.com/
 
Breathe Easy