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...

Happy and Exciting News!

P and I are ENGAGED :)

He asked me Sunday night in bed. It was very sweet and very romantic. And I am the happiest girl in the world! I don't want to give details because they are special and intimate, but just know that I can't stop smiling.

Here is a picture of the ring! Now its time to plan a WEDDING!!!!!!!!! <3

Words I needed to Hear

Tonight I relaized something. 

I have the best boyfriend I could ever ask for :)

Cheesy?  Yes.  True? Definitely!

One of my faults is that I don't think I do enough around the house.  That I am lazy etc.  I know I do a lot.  I cook and clean and do the wash and food shop.  And pay some some bills that I can afford.  Plus work part time and take a class.  So I am not lazy but I worry that I am.  I've always felt that working at a job meant you weren't lazy and when you didn't work you were.  That was why I struggled with going out on SSDI for so long.  And sometimes I still wonder if I should go back to work full time (Then I spend a week sleeping till noon and realize why I am on disability).  But I digress.  Because of this, I feel bad when I tell P I slept till 11am, or that I stayed on the sofa all day because I was exhausted.  I feel like "ummm you fat lazy ass there is no reason to be exhausted, get up and clean or do something". 

But tonight he made me feel muuuuuuch better.

It's been a very busy couple of weeks between his doctors appointments, his father passing away, Easter, and school vacation (for those not in MA, the kids get a freaking week off of school for Easter break...sorry Spring break).  Today was the services for his dad so we were out all day long.  I was going to do wash Saturday or Sunday but I forgot.  When we got home today I sighed and commented I didn't want to do the wash tonight.  P said not to worry about it I was exhausted.  To which I replied "but I haven't done anything".  And he said the magic words "you do plenty and some things about how I need rest".  (Now I know some of you are thinking "he could have done the wash" but its my job, I like doing it because it makes me feel like I am pulling my weight and he knows that - see above paragraph about my insanity lol).  I can't remember what he said exactly anymore but I know I felt 1000 times better about everything when he said that.

So yes I do have the BEST boyfriend in the world <3

SURPRISE!!!!!!!!!!!!!!!!!

I don't know where to start!

This weekend was amazing!

We were supposed to be heading down to PA for my god-daughter's first birthday party, but it ended up being so much more!!!  I walked into my mom's house Friday night to over 60 people yelling SURPRISE to me!  They threw me a surprise 30th birthday party...30 days early lol.

I was floored and still in shock and had no idea what exactly everyone was doing there.  Took me a few minutes to realize that it was a birthday party!  I thought everyone was there to say hi haha!  Funniest part is that my brother was"at my mom's with the kids" and text me around 7:30 to see when I would be there because Kayla was getting fussy.  I said about an hour and go home if she is too bad.  Then my mom text me like 20 minutes later asking the same thing.  I told her the same thing I told him.  So then I kept her updated when we crossed the bridge into PA etc.  Well here, Peter was texting her too!  When we drove on the street there were a bunch of cars parked and I commented that someone must be having a party!  HA!  Little did I know it was MY party!  Peter said he laughed on the inside at that!

It was so awesome to see all my friends and my family, including those on my dad's side who I don't see all that often, there.  I had been saying to Peter just that day, that we needed to have a party so everyone could meet him at once!  Bastard knew ;)

I really enjoyed seeing everyone and the cake and presents and everything.  It was a green themed party!  Me and my save the world self.  Here are some pictures to see what I mean:

this is made from ivy (took it the next day so you could see it)

And we played Pin the Tail on Premiere!  My old show buddy, such a fabulous horse!

I definitely felt the love that night!!!  My mom made a video picture montage of me up until now and I want to post it SO bad but the way it is on the DVD makes it impossible :(  Look for a future post with a few select pictures of what was on it though.  And my dad had brought my mom down a folder of all the things my brother and I had made him as kids.  It was so funny seeing stuff from kindergarten and preschool and letters to Santa, from Santa, cards I made him.  It was so sweet!  And boy did I LOVE to color haha!!!  And thanks to my dad's early birthday gift, I was able to register for my art class last night!  It was the second best birthday present I got (first being the party)!!!

Saturday however, I got even better news!  I was approved for SSDI and had my first deposit in the bank.  Hoping to get a letter this week with all my info.  Unfortunately, all that money I got goes right to my LTD company, but that's OK because at least now I am officially disabled!

Just a small update

As you can see I have a new layout.  I am tres happy with it!!!  The colors are nice and springy and the 3 column layout is perfecto!

I am heading back down to my hometown tonight so that my family and friends can meet Peter.  I am so excited and a wee bit nervous.  I know they will love him!  He is amazing!  I just hope he doesn't think they are all a bunch of nut-cases and run for the door.  OK, I know he will think they are nut-cases because, well, they are haha!  Hell I am friends with them so they must be :)  Just so long as he still loves me afterwards...which I can't imagine him not.

In other news I have started the SSDI process.  I contacted Beth Sufian's office in Texas and found out what all I need.  I am having my records sent to me from Penn and they should be here next week.  Once I make a copy of them, for my records, I will send them down to their office and let the headaches begin.  Luckily having the law office behind me I should have an easier time of getting approved.  However, right now so many people are applying because of the economic crisis that it is still taking a long time.  I meet all 3 criteria so really there shouldn't be any issues whatsoever.  And my doctor is all on board with me applying.  I will use Dr. H as my primary and then Dr. D at Children's for any follow up.  It makes much more sense to have Dr. H helping me since he has been seeing me since October 9, 1986.

Yep I was 5, and ironically it was the day before my 6th birthday.  I was in first grade when I began seeing him.  I assume I was also in first grade when we found out I had CF.  I know I was 5 and I believe it was only a few weeks before my appointment with him when we got the results of my sweat test.

I am off to pack for my wonderful excitement packed weekend.  Hopefully I can sleep all day Monday to recover since I know sleeping will be hard this weekend!!!  So much planned and look for pictures and an update next week!

Much love!

Bad, bad thoughts

I know this is something that we adult CFers struggle with a lot.  Many of us seem to have overcome it, yet many of us still struggle with it on a daily basis.  What is it that I am talking about?

Letting someone important into our CF world.

And by important I mean someone we love and want to spend the rest of our lives with.  Someone we want to share all of our secrets and heartaches with.  Someone whose shoulder you want to cry on and whose hand you want to hold.

That special someone.

This has been a very hard thing for me to do.  It is turning out to still be very difficult for me to do.  And given the man I am dating, it should be easy.  But it is not.  It is harder than I thought it would be.  Granted I have overcome some of my own obstacles like vesting in front of him and wearing oxygen during "ahem".  But these are only the superficial areas of CF.

There are so many more things that I need to let him into.  Like when I am in pain (which is way more than I like these days), when I am having one of those bad CF days, going to the doctor with me and just talking about CF stuff.  We do live together so it's not like I can really hide anything physical, but the inside things, I can hide those like a champ.

You are probably wondering why this should be easy because of who I am dating.  So for all of you who do not know, I am dating the brother of a close friend of mine, whose husband had a double lung transplant Thanksgiving day of 2008.  The hubby and my man are also very close friends, and he is a big part of the support team.  So obviously he knows what to expect in a way.  All CF cases are different I know, but there are still so many similarities.

And while I am at it, it also has me thinking that I want to stop him from having to deal with anything that I will go through in the future.  I know he can handle it, I have total faith in that, and he has a sister who has dealt with it all too so he has a support system.  But that is no consolation to me at all.  And it should be.  I should be ecstatic that after all these years of dating assholes who couldn't and didn't want to deal, I have found someone who can and will.

So why can't I be happy for myself?  Why can't I stop thinking that I should tell him to go away and not to worry about me?  Why do I stay?

Well I stay for purely selfish reasons because I love him more than anything and can't imagine life without him. But this love is blinding me, and making me want to protect him.  He has met me at a time in my life where I am not really ME.  I am a dumbed down, less active version of the person I once was.  Will he still love me when I am transplanted and can do all of those fun activities again?  And why must I think about all of this now when I have not even started the evaluation process?

If you didn't think I was crazy before, now you are well aware of it.  I am a looney waiting for the straight jacket and people in white coats to take me away.

Happy New Year's!!!!!!!!

I can't believe it is 2010 already! I feel so old lol. I also feel like I am slacking on all my readers. I apologize for that. Being at Peter's house I don't have access to any of my stuff on my computer (I might go buy a laptop this week and then when I go back home I can transfer everything to it so I am not so slacking anymore). There really isn't much to update all of you on. My lungs still feel the same. I am enjoying not working and relaxing at his place. Spending time with Tina and Shawn and Peter has been fabulous.

We had a great time on New Year's. Went to a party and saw a band. I stayed sober to drive home haha. I didn't mind. I actually got drunk beforehand while making dinner for everyone so it worked out well. It has been the first year in about 9 years I have had someone to kiss when the ball dropped. Wow how sad is that? We made up for it though, it was a great night (any sexual inuendos should be left at the door people I was not refering to that haha).

Hmmm what else to blog about? I relly don't think there is anything else.

I will try to update this week if there are any happenings!!!

Love to you all and hope everyone had a safe and fun new years!!!!!!!

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.

Emotional roller coaster continues...

**Warning…will be a bumpy ride, with some deep holes here and there so buckle up**

I am still on an emotional roller coaster from last Friday. It just seems to go higher and higher. At some point I will reach the peak and come flying down, my hands waving wildly, screaming at the top of my lungs.

Saturday did not end up being all that much better. I had a set back exercising. I was much more SOB and my tolerance went way down. I even had my O2 set at 3L hoping it would help me keep my O2 up and HR down. No such luck. I still dipped into the high 80s. While not all that horrible it just seemed to add to my “issues” for the weekend. Sunday I was just blah and didn’t feel up to doing much. I did get to see my FB (fuck buddy LOL) Sunday night, but I was out until 2am so I was EXHAUSTED Monday morning. But that at least brought my spirits up a bit. Then Monday shit hit the fan with he and I and we decided to just be friends for now (long story not getting into it on here). I’m due for my period which adds to the emotional-ness and this news, for some reason, threw me for a loop. I was upset, but I’m good now haha. I’ve also been stressed at work trying to get this project out which went out yesterday thankfully.

Tuesday I woke up in a better mood only to have it thrown back down after talking to the genetic counselor. She discussed the results of my Colonoscopy with me fully. Apparently they found a lot of little benign polyps which is good. Then the one large one was synonymous with Lynch Syndrome and was pre-cancerous. So that was fun news to get on Tuesday. YAY! Granted it was just PRE-cancer but it still makes the body shake. I pretty much shook for the rest of the day. They did get the whole thing thankfully, but now I know I need to go back once a year. We chatted and I told her I wanted to come back in to discuss some things and she said I could or if I wanted to do it over the phone that would be ok too. So I think I might just do that so I don’t have to pay $30 and drive to HUP. I just want to discuss the whole hysterectomy thing considering I had pre-cancerous cells on my cervix a few years back, that were removed. Like I don’t have enough fucking issues with CF.

Being in this emotional state has made me do a lot of thinking, which is NEVER a good thing with me. I keep thinking about love, and finding love and how I am not open to it. I want love. I want the kind of love where you are best friends, soul mates, meant for each other. All that gushy sappy shit you see in the movies and read in books. But the thought of letting myself find that and open myself up to that is so fucking scary it keeps me closed. It’s so hard to let those happy feelings in when all you can think about is how it will end badly and you will get hurt. Yet you don’t know that for sure. You just assume it will because every other “relationship” has failed miserably.

Then I think about all my past relationships. All the ones that failed. I see a pattern. That pattern is that I chose guys that are in the same emotional state as me…not open to love. Which of course at the time is not obvious to me and when it does become obvious I just ignore it. You can ask any of my friends and they will tell you the same thing. I fall for guys that are not available, emotionally and physically. I fell for the cop, who had a baby’s momma at home. I fell for another guy who had a girlfriend. I fell for another one who had a wife. I fell for one who thought he wanted me but couldn’t figure it out. (Fall does not mean love, fall means feelings that given time to “fester” could develop into something resembling love). I fell for another that was getting divorced and didn’t want a relationship – just sex. In each of these cases I KNEW nothing could ever come from the “relationship”, yet I pursued and conquered. And in the end, I ended up hurt.

Flip the coin around and let’s look at the men that have tried to date me that were available. There have been a few, yet none of them succeeded. I was that girl, the one that the nice guys talked to and helped with their issues, and wanted to date, but the girl never gave them the time of day about dating. Yeah that was me. I was more than happy to seek their advice about the bad guy of the week yet I couldn’t see that they would have been much better. And if they did succeed in getting me a few dates, I ended it after a couple of weeks. Kim says I like a challenge. I think I am too scared to be happy.

Sunday night my FB (fuck buddy remember) and I were discussing relationships and I remarked how I used to be such a guy when it came to these dating things. I was always the one ending it and never the one that got hurt. But that was because I had been hurt severely but the one guy I thought I was going to marry. I was 21 years old. So for 7 years, almost 8 I have had this wall that has been built up around me. Some men have started to break through the cracks but no one has penetrated it deep enough for me to remove it.

Looking back even farther, before said relationship, I was the same way. I don’t know if I was just that way because I was young and inexperienced or because I was just made that way. Sometimes I think that I am just wired wrong in the love area. I want to be able to curl up next to my man and tell him everything, yet I don’t want to put myself out there to find that man. How can I be open to love when I can’t even tell someone private things about myself. I don’t talk, I don’t give, I don’t share. I just sit there soaking up what the other says, growing feelings and then running in the end. This does not make for a strong bond.

A part of me thinks it has nothing to do with CF. And another part knows it does. I just wish I could get to the bottom of it so that I could finally someday let myself feel the happiness that so many have in love.

I shall leave you with a link to my poem. I wrote this years ago, and ironically it won a poetry award a few years back. Sometimes the best things come from broken places, when your heart is shattered, pieces scattered all over.

Will I Ever?

Fucking men fuckers

Total man rant - totally R rated so leave the kiddies in the other room.

Oh I am so fucking pissed I could spit fucking nails!

I was played, I know I was played. I KNEW I was being played. Yet I am still pissed. Well my dear playa friend you are a fucking tool, douchebag, jackass and I will never so much as grace you with touching me again. I will let you talk to me and I will taunt you and show you just what it is that you are missing. Don’t bitch to me how much you hate her and can’t stand her and that you aren’t really together. Don’t fucking lie to me and expect me to be ok with it. I thought you told me the truth, but you told me only part of it. I should have known. Well guess what? There are so many better men out there than you that will appreciate me and all I am worth so fuck off you slime bag and go fuck some other girl who thinks you are the hottest thing since sliced bread!

I don’t want to hear any I told you so’s from ANYONE out there. I will erase them so if you do leave one you can fuck off too k? No one knows the entire story except a select few so I don’t need anyone not in the know telling me what to do. You can fuck off too k?

Moving on...

I have decided that I am done "pining" over my crushes. Men who I like if for no other reason than hot sex, good body, or just being funny. Yes hot sex, I love me some hot sex and one guy I "crush" on his delicious!!! But that is besides the point.

Anyway. I am happy as I am being single and I realized that most of my pining was because of what that person could do for me. Mainly supporting me when the time comes for me not to work.

But I need to get over that and not like someone based on what they can do for me. I am too much of a romantic for that!

So my new though process is to be rid of these, jealous, lusty, longing feelings for men I will never wed and move on to more important things, like crochet ;)

<3

Awake

I have been awake since 3:30 this morning after falling asleep around 11pm.  I can't sleep.  I can't fall asleep.  I kept thinking of Jenn and her family and her fiance.  How hard it must be for them.

I kept thinking of P and how he lost his friend last week.  I kept thinking how hard it is for him.  How I wish I could just give him a huge hug and make it all go away.

So much death in the last week.  2 young people taken from this world long before their time should have been up.  Leaving behind family and friends who will mourn until it is their time.

It just saddens me.

Hug your family and friends and tell them they mean the world to you.

<3

Wow what a day!!!!!!!!!!!!!!!!

I don’t even know where to begin about today! I had so much fun!!!!!!! My “friend” P picked me up and we went out on his wave runner this afternoon. I have never been on one before and let me tell you, I was a wee bit nervous at first! The thing is super fast and you are only holding on to the person in front of you (which BTW I didn’t mind at all). It was so freaking cool!

We put in down at Bristol and then headed to Philly. The Delaware looked good today, not as mucky as some days! It was an all around beautiful day!!! The sky was bright blue, the sun was warm but not scorching, and the water temp was decent. I was in heaven.

The first few minutes I had to get used to the speed. I was scared, I’ll admit it. But I trust P, a lot. I knew he wouldn’t let anything happen to me. Plus it was very rocky today with all the boats out and the wind. Hitting the waves though was awesome after I got used to the movement of the wave runner. It was almost like riding a horse. You just have to move your body with the flow of it. When it bounces you bounce, etc. I will say that I will have nicely worn out ass cheeks tomorrow morning! All that bouncing tore my ass up!! But that’s ok.

We met up with one of his buddies he works with. They were out in their boat just anchored off shore a little, drifting and relaxing. We tied up for about 30 minutes. P wanted to open up the runner so he dropped me on the boat fast and tore it up for a few minutes. You can’t do it with 2 people on it so I didn’t mind being dropped off. Plus I am a wuss and would probably be super scared!

We left them and headed up to “penetration” island (take a guess why it’s called that haha!!). It’s a nice place to stop though because of the sand and being able to just ride right up on the beach. We grounded the runner and swim for a little bit. The water was so nice and it felt great just being out there. We didn’t stay too long since we wanted to stop at one of the boat marinas restaurant and grab a quick bite.

We rode over to it only to find it way packed. Instead we headed up river some more to goof off. I didn’t mind. The sun felt great and it was less rocky so we could speed up a bit. Yes that’s right I was enjoying the speed!! Scaredy cat me liked it!!!!!

I can’t tell you how much fun we had! It was awesome. I haven’t had a great day like that in a very long time!!! My lungs felt awesome too. I brought my portable neb with me just in case but I didn’t need it. The bouncing loosened up some fun junk which was great. P said that was his goal, clear me out! Haha I told him it would take more than a few hours on a wave runner to get rid of all my shit in there!!! He laughed.

We passed by the mansion I want to get married at too...Penn Ryn. The place is spectacular! I visited it a few years ago for my architecture class and fell in love with it!!! Now since everyone knows (or didn't and knows now) I am a HUGE signs person. I believe in all that mumbo jumbo but hey I'm allowed! I was keeping my eyes straight ahead most of the time, only looking around a little, and never looking straight sideways to see what was on the shore line. I could see houses and all when we were coming up to them so I never needed to check them out when we flew past. Well the ONE time I do look over (and the first time on our ride down) and Penn Ryn is dead ahead of me. I almost shit a brick! It was the best sign, even if I think it may be a fruitless one. Penn Ryn is hidden by alot of trees so it's not like I saw it coming and then looked. Plus I completely forgot about it until I saw it. Then on the way back he said something about it. He was like "Penn Ryn is up here a bit, I can't believe I missed it on the way down". Which I in turn said that I had seen it on the way down and that I want to get married there someday.

All in all I will have to say that it was a perfect day! Then again anytime I hang out with him I have an amazing time. Guess that’s what happens when you fall for someone. :D

<3