I want to be a bookseller

Last weekend P and I decided to take a drive.  It was New Year’s weekend and with three days off, he was starting to get bored and I was restless having everyone at home with me.  There were a few books I wanted to pick up so we decided to take a trip to our favorite used book store up in the Ipswich area.  We meandered up and when we pulled into the parking lot we saw the building was EMPTY!  The whole thing!  No used book store and no antiques shop below.  Just a sign saying they would be back after lunch…..no forwarding address, no we moved sign.  NOTHING.  I was (still am!) devastated!!!  We loved that place.  Not to mention finding a used book store that isn’t part of the Salvation Army or in Barnes and Noble is near impossible. 

As we drove away I had the very strong desire to open my own book store.  A quaint little shop here in our town where we would sell some new, old and maybe even rare books.  We could have a small little coffee station in the store and a lounge area to read.  Free wifi of course and I could bake some bread and make some jams to sell.  During the slow hours I could relax and crochet and read.  I wouldn’t have to have the store open 10am to 9pm like retailers; a reduced hour schedule like noon to 7pm would be perfect.  Maybe only a few days a week too.  I go have book club meetings and maybe even work with the library on things. 

I thought of it all.  I got totally wrapped up in it, even telling my mom she could move up here and work it with me. 

But it isn’t possible.  At least not right now. 

But WHY?

Am I just scared and using my health as an excuse?  Or would it really be a bad idea?  I love to read.  I would love to have my own shop.  I have the perfect location in mind.  I could find funding I am sure (grants for women owners seem to be a good place to start). 

But could I do it?  And should I do?  And will I do it?

Maybe…someday….maybe…never…

FDA Advisory Panel Recommends Approving Vertex Drug for DDF508!!!

HERE

What does this mean for me?  This means that if on July 5th the FDA approves this new drug I could be turned around.  My life could go back to normal.  I could get a job, buy a nice house, stop doing so many treatments, grow old with my husband.

CRAZY!!!

Reflecting on the past 15 years of my life

Fifteen years ago yesterday I graduated from high school.  So much has changed in those years...

Random highlights:
January 1998 President Clinton's "I did not have sexual relations with that woman, Ms Lewinsky."
April 1998, Animal Kingdom at WDW opened for the first time
May 1998 Frank Sinatra dies
September 1998 Google is founded
November 1998 Elmo's World launches
(source secondary source)

CF Related Highlights since 1998:
1998 Specialized clinical research centers are designated as the Foundation’s Therapeutics Development Network.
2000 Foundation-supported scientists map the entire genetic structure of the most common cause of CF lung infections — the Pseudomonas aeruginosa bacterium. Researchers can identify the function of specific genes and find ways to turn off the bad ones.
2003 CFFT-supported scientists at Structural GenomiX, Inc., determine the three-dimensional structure of a portion of the CFTR protein, opening the door to more drug discovery opportunities.
2004 CFFT-supported studies in Australia and at the University of North Carolina show that hypertonic saline helps clear CF mucus. It is proven to improve lung function and reduce hospital stays, and becomes a therapeutic option.
2006 VX-770, an oral drug in development by Vertex Pharmaceuticals, Inc., with support from the Foundation, enters clinical trials. VX-770 is one of the first compounds to attack the root cause of CF, and works at the cellular level to open chloride channels that do not function correctly in people with the disease.
2007 Vertex selects a second potential drug known as VX-809 for development. Like VX-770, VX-809 addresses the root cause of CF, but it works by helping the defective CF protein move to its proper place in the cell.
2008 The Foundation and Vertex achieve a “proof of concept,” showing that it is possible to treat the root cause of CF. During Phase 2 studies of VX-770, trial participants, all of whom carry the G551D mutation of CF, show unprecedented improvements in key signs of the disease.
2010 The FDA approves a new inhaled antibiotic called Cayston® (aztreonam for inhalation solution) for the treatment of CF. Developed by Gilead Sciences, Inc., Cayston offers a much-needed antibiotic alternative for CF patients who battle recurrent lung infections and develop resistance to existing antibiotics.
2011 The Foundation announces that Phase 3 clinical trials of VX-770 showed profound results. Those receiving the drug demonstrated the highest increase on a lung function test seen in any clinical trial of a CF drug. Vertex submits a New Drug Application to the FDA for VX-770 under the trade name Kalydeco™.
2011  Results from the first part of an ongoing Phase 2 trial testing Kalydeco in combination with VX-809 show promising results in people with the most common CF mutation, Delta F508.
2012 The FDA approves Kalydeco™ for people with the G551D mutation of CF ages 6 and older. The drug is the first to address the underlying cause of CF and opens exciting new doors to research and development that may lead to a cure for all people living with the disease.
2012 Results from a Phase 2 trial of Kalydeco in combination with VX-809 show a significant improvement in lung function in people with two copies of the most common CF mutation, Delta F508.
(source)

For me:

I am not where I had expected I would be 15 years post-graduation.  I thought I would be an interior designer working at some high level company in Philadelphia, married with kids, living in a beautiful home in the suburbs.

I am not where I expected I would be, but I am where I WANT to be. My health may be shit, my ability to work may be gone for now, but I am married to the most amazing man I could ever dream of and I am the step-mother to two kids.  They may not be my own flesh and blood, but they I do everything in my power to make sure they will be contributing members of society, and good ones.

I may not have the biggest house, or hell, even live in Pennsylvania anymore, but I have a great life and I would not trade it for the world!!!

I never thought that 15 years later I would be living in Boston.  I never thought I would have married and honeymooned in WDW.  I never thought I would have my baby making parts removed to reduce the risk of cancer.  I never thought I would ever be referred to a double lung transplant clinic.  I never thought I would ever meet the man of my dreams online, THANKS to CF!  I never thought I would make so many wonderful friends because of this retched disease.  And I never thought I would ever stop working.  Then again, I did always think I would be dead at 26 or by 40...so...

2010 Comes to an End

What a year!

Looking back on the past 365 days really amazes me.  I do it every new year's, as do most people I am sure.  But I think this one has the most changes.  I'm now officially living in Boston with the love of my life, I have a new family, I'm a surrogate mom, I've made new friends up here, I've started the Grad school process, I've been approved for SSDI, I met so many new CFers, I managed to make 2 full holiday meals (for the first time! Christmas and Easter), I spent my first Christmas away from my family, and I am finally content in my life.

I think that is one heck of a year.

Many lessons were learned as well, both new and old.  Life is short, we need to live it to the fullest each day.  Friends and family are way more important than anything else.  And only you can make yourself truly happy.

This year has been an amazing one.  Filled with love, laughter, sadness and joy.  It definitely had its down, and we lost way too many friends along the way.  But overall it was great.

Everyone has resolutions, I usually do too, but this year I think I will pass.  Nothing like setting yourself up for disappointment from day one!  So instead I vow to make my 2011 as wonderful as I can, despite the hospitalizations, the sickness, the breathlessness and the worries.  I will make it a year to remember, as each year should be.  I hope you all will do the same!

Be safe and Happy New Year!!!

Having a bad "baby" day

Ugh I am so bummed out today. I had this amazing dream last night…extremely weird but amazing. I was pregnant, only about 4-5 months and I had a tiny little belly. The weird thing was when the baby would kick I could see the whole foot push out of my tummy (still inside I would only see the imprint through my skin) and it would bend me over cause it was uncomfortable. But I could see that little tiny foot like it was my own. I was very happy to be pregnant in my dream even if I was dreading telling my CF dr about it. It was so real. I remember rubbing my belly and talking to it. Being SO sure that it was a little boy because of how strong he was kicking.

Then today I came into work and my cubby buddy and I were talking about her pregnancy and she was showing me this magazine that has the baby at different months and what they look like. She starts her 6th month next week (I think) so she showed me what little Baby M. will look like. It’s a baby!!!! And adorable!!!! You could see every little feature on its face and see the hands and feet and arms and all. It made my heart hurt....

I know I have accepted the fact that I will never have a baby of my own but I still want one. I still long to know what it’s like to feel your child growing inside of you, to feel the first kick, the first roll over, the first everything. I want to experience all those things. I wish I could know what its like to go through labor and look down on your child for the first time when the DR hands them over. I wish I would know what its like to watch as your child grows and rolls over for the first time, crawls for the first time, walks for the first time and talks for the first time. I can see these things with my friends’ children, but it is so much different when it is your own.

I have never spent so much time with someone pregnant as I do now. Sure I have had friends and family pregnant but I am with my cubby buddy 40+ hours a week. When she feels a kick or something she tells me. I adore when she does, since I won’t get to feel it myself, but it does make me hurt. It’s a reminder just what CF is taking from me. Yet another dream of mine down the drain and out the door. I am super excited for her and I love hearing about everything. I can’t wait until she is really showing and I can see it all (perhaps it will make me glad I’m not having kids LOL). I love that I can experience it second hand and I love that she and I are close enough that she will willing to share it all with me.

I don’t like dwelling on the negative but today I can’t help it. I have 3 pregnant people in my life right now, and one who just had a miscarriage. It’s all around me, everyday. What I long for and what I desire most, and how I will never have it.

Please don’t tell me that I might someday. No, it will never happen. I am too sick to have a baby now and after transplant it is frowned upon and I wouldn’t risk my life and the life of my baby to achieve a dream like that. Today is just one of those days where I can’t put the pain behind me and forget about it. Today it is staring at me full force and I am trying to stare back and win the battle. So far, pain is winning. My heart hurts and my head is yelling at me.

I'm like a french fry...

...burnt to a crisp and covered in salt!

I spent the day at Devon. I go every year, by myself. It's always the weekend of and weekend after Memorial Day. I had completely forgotten about it until yesterday when my co-worker mentioned it. Memorial Day being so early this year through me off!

I adore going here. The smells, the sights, the sounds. Everything is just fabulous! I go alone. I will never go with anyone. I have no desire to. It's something I do alone so I can wander at my pace, sit as long as I want and do whatever I please. I never buy tickets to the grandstand since I enjoy relaxing in the sun taking pictures, right along the rail. Some years I wander around the grounds but mostly I watch the Oval and then walk back to look around the shops. I never go in. it's on the Mainline in PA and it's horse people...very expensive. Maybe someday when I marry that DR or Lawyer haha! One of these days I might actually stay for the whole day. But it is usually from 8am until about 10pm. A long day!

Devon has been a dream of mine since I was little. It's huge! People come from all over the country to show here. My two Aunts that have farms come every year to show with their students. They don't personally show anymore but they are the trainers for some that do. It's so very prestigious and you get to say that YOU rode in Devon. God I want to be able to say that. I guess my sorry ass needs to start riding again huh?

I still get that little tingle in my tummy when I can see that the rider is going to nail the jump, or the pull when it looks to be too short. I count each and every stride between the jumps and nod my head ever so softly as the horse canters along. I find myself biting my lip in anticipation when it comes down to a few seconds. Or feeling let down when a horse hits the rail and knocks it off. It's so invigorating for me. I love it.

Body and soul I miss riding and being a part of it all. I miss showing. I miss walking around in my breeches and boots. I miss buying saddle pads and treats. I miss the feel of the horse beneath you, how the muscles tense when going over a fence, the exhilaration when you nail a fence that you have been having trouble getting. Knowing that you are doing something you love.

Someday.....

Anyway...on the way home I decided to swing by the Battle of the Bulge Memorial. I didn't know it was inside the Valley Forge Military Academy and you can't get in (at least not on the weekends and I didn't feel like driving around to the other entrances) LOL. Oh well. I drove past it anyway and saw the back of it. And I saw some cute cadets. Maybe that's what I need instead of a DR or Lawyer, a military man!!! Mmmmmm yummy..........

Some pictures I took! Enjoy!!!

Devon Horse Show

The Dixon Oval

Leadline...ages under 4 and then 4-5 year olds. So freaking cute!

Lemon Stick....Devon is not complete without one

Someday maybe I will be doing this....

My burnt knees...LOL

I did it

I did it!!!!!!

I sent for information about the Graduate program at West Chester University. I chose this school because they have this awesome assistantship where if you work full time (20 hours) they will pay your tuition and give you a $5000 stipend for the semester. Or part time (10 hours) and they will pay half and give you $2500! So yeah made it easy :) Plus its a state school and it's cheap to begin with. And to be honest, I LOVE their courses! They have the most classes that I am interested in!

I thought A LOT about it today and I wanna do this. Part of the reason I decided to go ahead was I looked more into the NCIDQ exam which I was planning on taking in October and it will cost me $1200-$1500 to take it! HELL NO! It will get me no where with my job and I can take it any time I please. I have all the info I need. So maybe in a few years.

Instead I am going to look into taking Grad school classes...I am BUTS haha! But whatever! Hell if I get the full time assistantship then I can work part time like 20 hours at my job and just COBRA my benefits and I will be fine.

Of course this will all depend on how I do on my GRE and if I get accepted to the MA program...wish me luck!

Going back to school

Ok well I was gonna wait a while but then I decided not too.

For some unknown reason I have been really wanting to go back to school to get my master’s degree lately. So much so I have been looking into schools. The hard part is deciding what to get my Master’s in. I have always wanted my MA in American History but then I was thinking what if I did something to advance my current degree, like media design? Then I can be a HUGE asset to my company and almost guarantee me staying there LOL.

I want my master’s. It is one of my goals in life. I have my undergrad and now time for the graduate degree. I also need to decide when to do it. Do I start now taking a class here and there either online or Saturdays or do I wait until I can’t work due to my health then mooch off the gov’t and have them pay for it? The last one is super appealing for obvious reasons (not having to add to my student loan debt), but who knows how long until I hit that mark ya know.

Then I wander about what happens when I can’t work and my student loan debt. We had a convo in chat one night and it seems that any gov’t issued loans will be forgiven when you are out on permanent disability. Of course I would have to check with my lender on this one but hell that is awesome! So then it kind of deters me from wanting to take classes after I can’t work since then I will be doubly screwing the gov’t. Why do I give a dam about the gov’t so much? I dunno but I do.

And of course the schools I am looking into for my MA in History are Temple, University of Penn and Villanova. Temple is the only one moderately priced and the other 2 are expensive. But Penn would be awesome if I could get in there. I would LOVE to go to Yale (always been a dream) but it’s too far away. So the next best Ivy League would be Penn LOL

Maybe I am a total idiot for wanting to do this. Who knows what my health will be like and if I will be able to work once I have the degree. Most likely it will be for a personal benefit of mine and not so much for a professional benefit. Only the media design would be. I did get some info in the mail about that from an online college. But that I am not as into as the MA in History.

Oh well I don’t know. Someday maybe I will be able to take the classes and get my graduate degree. Or maybe the dream will fall to the wayside like that of having babies…only time shall tell.

Haunting

So I had the WEIRDEST dream last night and I needed to share it before it escaped me.

As everyone knows my step niece was killed in a car accident back in June.  Well last night she was in my dreams as a ghost and haunting me.  When my phone would ring she would be the picture and the ringtone would be her saying "hi Amy".  When I would try to drive my car she took over the car and would not let me steer, driving me into other cars and embankments (never fast just as sport it seemed).  I told my dad and step-mom and they wanted to see it and hear it too.  It was SO weird!!!!  In my dream I was also working back at my waitressing job and she was there the whole night screwing me up.  I eventually had to have my SIL take over for me so I could leave because I couldn't do ANYTHING.  The dream started out as me and my family trying to rent out the 3rd floor apartment in hour house (does not exist in real life but on the family farm the 3rd floor is haunted) but it was haunted and it was finally realized that it was her who was doing it, my step-niece. 

I'm telling you this was such a wacky dream and I can't for the life of me figure out if she was visiting me in my dream or I just decided that I was too be a weirdo in my sleep.

Who knows but we miss you Ashley!!!!!!  <3