This 30-something's journey with Cystic Fibrosis, Lynch Syndrome, CFRD and the Lung Transplant process
Sunday, November 29, 2009
One day I will not be the mom
Thursday, November 26, 2009
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!
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
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.Tuesday, November 24, 2009
Courtney Got her Wings
I am sad that you are gone but comforted that you are at peace and no longer suffering.
I will always remember you!
Monday, November 23, 2009
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.
Saturday, November 21, 2009
Courtney
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
Thursday, November 19, 2009
Heading North!!!
Saturday, November 14, 2009
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
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)
It’s something to ponder…and ponder I just might…
Wednesday, November 11, 2009
Monday, November 9, 2009
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
Sunday, November 8, 2009
My first "independent" move
My previous experiences with moving and why some people may think I am not going to actually move to
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
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
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
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
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
Thursday, November 5, 2009
Breathe Easy Lauren
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.
Tuesday, November 3, 2009
Prayers needed
Monday, November 2, 2009
Talked with Beth
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!!!!!!!!!!!!!!!!!
Sunday, November 1, 2009
Where my peeps at? errr From?!?!!?
Ok so here is the tally of where you are hail from!
Maine
Utah
Canada:
Other:
Thanks guys it’s great to see where everyone is located and reading my blog. Makes me feel awesome!