Happy Mother's Day!!!

Today's post is dedicated to the mother's of "sick" kids.  This does not mean Cystic Fibrosis only.  I mean any mother who is raising a child with any type of "issue" whether it is physical, mental or emotional.

Parenting is tough.  From my few years as a step mother I have learned how difficult it can be, and I didn't even start off with a baby!  I was lucky enough to take on an 8 year old (though the older they are the more issues they come with too since you can't "mold" to your liking lol) and skip the diapers, potty training and terrible twos.  There is a lot of give (you) and take (them) and not much reward.  It truly is a thankless job.  And now that we have a teenager in the house, it is even harder.  You can see the young child in them struggling to override those awful hormones, but hormones win 90% of the time!  At the end of the day, it is still a great job.

For those mothers out there who deal with all of these things and then they raise a child with an illness, well you are saints.  So here is a little thank you from me to you (not all encompassing since I know I will miss a few!).

Thank you for:

taking us to all those doctor appointments
not letting us dwell on our illness
letting us live our lives
not keeping us bubbled up
feeding, clothing, bathing etc us when we were sick
telling us it would be ok
visiting us in the hospital
holding our hands when we got bad news (and good news!)
raising awareness and money for us
fighting for us in schools for what we needed to succeed
watching us grow into the people we are today because of you
helping us figure ourselves out
not letting us give up
being the best support system we could ask for
hugs
kisses
love
kindness
the kick in the ass we needed when we rebelled against the illness
knowing the illness didn't define us and letting us figure out what did
watching as our dreams came true
watching as our dreams crashed down (and holding our hands)
lifting us up
bringing us back to reality
nagging us to do our meds
nagging us to eat
nagging us to play outside
nagging us to be responsible
and well, just EVERYTHING


Please post any thank yous in the comments.

And thank you MOMS!!! (and single dads who have to do both!!!)

Ringing in the New Year!

2012 is sure to be filled with a ton of excitement. P and I get married in October, then go on our honeymoon to Hawaii.  My brother turns 30 around Thanksgiving so we are going to celebrate it with my family in PA. I am continuing my Master's classes (thanks to the disability department at school for getting my financial aid sorted out). Many new babies and weddings this year for friends and family.  Plus any exciting things that may happen along the way.  I am looking forward to a new year filled with exciting times and new adventures.

I have set some resolutions for myself for this upcoming year.  With no pressure though. These are things that I need to work on either way so I am adding them to my resolution list.  

1. Use my Wii fit to exercise and get my exercise age down from 44 to something closer to 31. I want to make sure I am not on O2 24/7 when I walk down the aisle to marry the love of my life.

2. Eat healthier foods, and cook more so the whole family eats better.  We all need to eat better and stop with the processed junk foods.

3. Pay more attention to world happenings. I am ignorant to what is going on in the world. The news always depresses me but then I don't know anything of importance.

As I ring in the new year tonight with my soon to be hubby I reflect back on the 2011 year.  So much happened! P proposed to me (by far the most exciting!). I started grad school.  We had our first family vacation together. We got a dog. I started the transplant evaluation process. My family got to visit me and see my new home.  P bought a new car. I got my hysterectomy.  My afghan won 1st prize at the local fair.  And that is all I can remember right now.  There were many little moments through out but these are the most memorable.  Unfortunately not everything was happy. We lost many CF friends.  The greatest lost for me was Bree.  I still miss her terribly and hope she is enjoying her time with those she loved and lost before her.  

I hope everyone has a happy and healthy new year and takes whatever life hands them in stride.  There will be good times and bad times but through it all we will press on.  May you all be safe this evening!!!

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

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!!!

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.

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?

Me in love

I was thinking about this tonight since Kim and I were discussing my love issues LOL

When I fall for some one it can be likened to Alice falling down the rabbit hole. At first its a fast fall, tumbling blindly into the unknown. But just as fast I get caught on a root. It catches me and holds me there in limbo while I decide if I should break free and continue to fall or if I should attempt to climb back out. I've almost always climbed back out, covered in dirt and mud and exhausted from the effort. I vow to avoid rabbit holes for a long time. I've broken a few bones on the way down too, bones that have not healed all the way, nor do I think they ever will. Despite all the broken bones, when I see another rabbit hole I look in and take the leap. Sometimes the roots hit immediately, and other times I start to see light at the other end before I get caught. But either way they are always adventurous and no two holes have been the same.
Sent from my Verizon Wireless BlackBerry

:)

Big smiles!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

<3

Fabulous evening but I always ruin it in my head

I hate being all Debbie Downer when I just had a blast at a friends’ house but we all know I am known for that!

So here goes. I hate that when I “meet” a guy, a guy I could potentially date, I immediately ask myself if I think he will be able to handle CF and if he would want to deal with it. I know that I shouldn’t think that way and that it is not my decision but it’s how I think. And it probably comes across as not giving the guy enough credit to be able to handle it. It has nothing to do with that at all. It is entirely me thinking that anyone should get more from a spouse than what I can offer. Pathetic I know.

I’ll explain where this all came from. There is this guy I went to school with (high school). I haven’t seen or talked to him in quite a long time. Maybe here and there at our friend N & K’s house, but not since high school. And to be honest never really in high school either since we didn’t hang with the same crowd (read him popular, me dorky LOL). So yesterday I went to get my hair cut (I’ll post pictures later!) and as I was walking up I saw him in the window with one of his daughters. I ended up sitting next to him but we didn’t talk…again haven’t spoken in years. I thought to myself “hmmm he looks great!” Fast forward to tonight. I am at my friend’s dad’s house for a party and then leave to go to my other friend’s N & K’s house for another party. I walk in the back yard and who is there? Yep, hot dad with both daughters. This time we did say hi and acknowledged that we were both at the hair place yesterday.

What brought on all my self loathing feelings is that I was watching him and wondering if we could date. I know I move fast in my head! But then I was thinking why would he want a sick girlfriend. Why would he want someone that won’t be able to work soon and will need a transplant at some point, yadda yadda yadda. All things that I shouldn’t worry about and should let him find out on his own and decide for himself. And remember all we did was say hello at this point. Unfortunately, that is how my mind works. The minute I see a man that I find attractive I automatically switch to that mode and it’s over in my head.

It also explains why I cling to men that don’t mind the whole CF thing (read P the cop). I have such difficulty finding men that will stick around that when I do I grab on and hold tight and don’t want to let go. Even if they are not really mine for the keeping.

I know I can not think like this. I know that I am single because I think like this (well that and I never leave my house, but that’s because I don’t want to LOL). I know that I am happy right now being single but it doesn’t mean that I want to stay single forever or that I should have to because of my own stupid ways of thinking. I just have no idea HOW to change the way I think. Whenever I talk to my friends about it they just tell me I am crazy and to stop. But HOW?

Ok rant over! I had a fabulous 4^th and I am so glad I went out!

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

What to write about?

Well originally this blog was supposed to be about my computer and how badly I thought it was fucked up on Monday. As I sat bawling my eyes out in my living room practically curled up on my tiny desk chair I got a text from a GREAT guy telling me not to cry that this will all make a good blog. So I figured if I ever get my computer back I would blog about it. Well it's fixed but I really don't want to haha!

INSTEAD!!! I figured I would re-post a few of my old blogs that I really like and was thinking alot about today. Don't worry they are short!! :)

What I want in a guy:
Someone who:
Is not scared of CF
Is willing to support me financially and emotionally
Who understands that it is hard not being able to support yourself anymore
Loves me for me
Will hold my hand when the doctor says transplant
Will visit me when I am sick and in the hospital
Will laugh at the stupid gown he has to wear
Will make fun of my quirks but in a silly way
Will make me laugh like no other
Will let me cry on his shoulder and leave tear stains
Will hug me when I'm feeling down and all I want to do is scream and cry
Will tell me I am beautiful with my O2 on, IV's hooked up, hair a mess, and no shower
And he will mean it!
Won't mind sitting home all weekend because my lungs hurt too much
Will be by my side until my last breath
Will laugh at my million and one ideas that I never follow through with
Will accept me and my dog into our home
Will respect my decision in the end if I decide to stop fighting and let myself go
Will love me no matter what and understand that some days I am going to be happy and others I am going to want to die but that no matter what I will always love him

I want to:
chase after him around the living room until one of us catches the other one
curl up on the sofa and watch reruns all night long
goof on each other
get drunk and have deep heart to hearts
lay my head on his chest and hear his heartbeat
bicker and then flick his ear to make him laugh
spend all day in bed/sofa just enjoying each other’s company
leave him stupid gifts and messages to show that I care
fall in love with him everytime I see him
call him at night just to hear his voice before I go to sleep
cook dinner together and then order out when we screw it up from laughing too much at each other
hold hands when walking everywhere
get dressed up just to hang out at his house because he loves me dressed up

Ahhhhhhhhhhhhhh :)