Saturday, February 28, 2009

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 ;)


Thursday, February 26, 2009

CF story!!!

Since I have been tagged I will join in the fun!

I am so using Piper as a guide since she and I have a lot of the same things LOL!

Here is my CF stats list!!!! 

I am 28 years old and will be 29 in October! 

I was diagnosed at 5 years old.  My mom took me to all the good hospitals in Philly and all they told her was I was allergic to everything!  So she stripped my room down to the bare bones and cleaned every day.  Yet I got worse.  I could also eat more than my 250lb dad and I was 2 years old.  My mom KNEW there was something wrong.  FINALLY our family DR who works from his house diagnosed me.  Told my mom I had CF and to get me sweat tested.  162 was my number ;)  I think it is safe to say he was right! 

Funny thing that I think relates to the whole CF thing.  My dad is one of nine and not a single one of them was under 9 lbs when born.  Same with my most of mu cousins and my brother.  I was 6lbs 9oz when I was born.  I think there is a correlation!  

My mutations are DDF508 

I participated in the Penn gene therapy study back in 2000 (I think) but it got canned when some guy from another study died and his family sued (HELLO we signed papers saying that could happen!!!)  WTF!  Fucking sue-happy assholes!  

Never had a sinus surgery and have yet to get CFRD…like Piper said “Take that CF!” 

I rode horses when I was younger doing lead line then I started again when I was 14 and rode till I was 18.  I did show jumping on Hunters and LOVED it.  I still miss it terribly and I have dreams at least 3 times a month about riding and the farm (my dad and aunt own a farm for riding).  I stopped when I went to school and just never found the time to get back into it.  Now I am not in shape enough, nor do I have the energy/health to do it…baby steps though so maybe one day… 

I never went to CF camp and never knew about them until I joined the CF forums online!  I also never had a Make a Wish and never knew “we” could get them until I joined the forums.  My mom always thought it was for the dying kids with Cancer etc. 

I had a beating board too.  My Aunt made it for me and I would lay on it upside down with my arm over my head and my mom would beat me.  Then after 3 minutes she would do the “shake” thing and then I would sit up and cough.  That all lasted until I was big enough to say go away LOL!  Then I didn’t do CPT again until I got my vest in 1999.  We used to use my board when I would have sleep-over’s as a couch and we would all sit on it and try to not fall into each other haha!!!! 

I always thought I was the only one in my family but my dad told me a few weeks ago that he had an older cousin with it.  I still have to call my Grandmom and get details.  I have no idea if my brother has ever been tested but my nephew is healthy and I am hoping the next one is too. 

I wasn’t hospitalized for a tune up until I was 18.  I was death walking and it felt so good to get treated.  After that I stayed out for 2 years, then 3 years after that then 3 more years then 3 times in 6 months…now I am hoping to make it a year at a time.  Guess they call that progression. 

My FEV1 has never been over 100% (at least according to my chart which I trust since it is copied from the one I saw my whole life at every dam appointment). 

My weight was always an issue for me up until this past year.  I am finally at a healthy weight and my lungs took a shit…figure that one out! 

My FEV1 hovers around 40% right now and I am hoping with the Inhaled Cipro study I am starting next week I might get it to 45-50%. 

I love my DR like my own father and God help me if he retires or dies before I do.  I will be lost and devastated!!!!  I would also love to move around and live in different areas but that would mean leaving him and I won’t do it.  Call me stubborn but he has been my DR since I was 5.  How is THAT for commitment! 

I am obsessed with going to school and kinda of secretly (well I guess not now) am looking forward to the day I have to go on SSDI so I can go back to school full time and hopefully have the government FINALLY pay for it! 

That’s all I can think of for now!!!!

Wednesday, February 25, 2009

C. diff?

I am looking up C. diff since I haven't a clue what it is except it affects your bowels.  WHY am I up at 6:30 am on my day off looking on the internet?  I'll tell you why, I have been up since 5 am with major cramps and loud noises coming from my gut.  It's NOT a pretty thing.  I look about 5 months pregnant and feel like I am going to barf.

Fun Times!

I'm going to call my DR today and see what they think.  It's been over a week now that my gut has been giving me issues and I am tired of it.  

I'm tempted to post something on CF2Chat to see what it could be, but poop grosses me out and I don't want if any of you that read this have any ideas lets hear em!!!!

And yes I am well aware that this is a public blog and MANY more people may read it than the CF boards LOL!!!!


Saturday, February 21, 2009

Continuation and update of last one

Thank you all for your wonderful comments and making me feel like I am not a total bitch for feeling the way I do :)

The vet called me today and guess what?  MAGGIE IS THE HEALTHIEST 14 YEAR OLD DOG SHE HAS EVER SEEN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

She said the blood work came back and she was totally shocked to see just how healthy my baby is :)  Best news I have had all freaking month!  And even better is she is back to normal, no pooping blood and not throwing up.  The only thing she noticed was a very slight increase in her liver levels but considering her age it is nothing to worry about.

How fantastic :)


Friday, February 20, 2009

I have issues

I’m stuck in between a rock and a hard place.  I felt frustrated and annoyed this morning.  Maybe it was the past 4 weeks worth of events that have set me off again who knows.  3 deaths in 3 weeks.  The day after each funeral the next one passed.  I am hoping this is the set of 3s.  Though I did not personally know 2 of them they still hurt.  We lost one police officer in my township, the day after his funeral Jenn died.  The day after Jenn’s funeral we lost another police officer in Philly.  Today was his funeral.  Will someone else pass tomorrow?  Just so odd to me.  But perhaps not.

Then of course my Maggie is sick.  She threw up on Tuesday night and had the shits but seemed ok and Wednesday morning she ate and pooped fine.  So I thought nothing of it.  I came home from work Tuesday to find her pooped all over my room, wet my bed and threw up a few times.  But the poop was “normal”.  I was not too worried yet since she was still eating fine and acting normal.  Then yesterday, I come home from work to find my room covered in bloody poop and throw up.  I immediately called the vet and they told me to bring her right in.  I did so.  The vet thinks it is just a virus since she is acting ok.  They did some blood work and gave her IV fluids since she didn’t want Maggie drinking or eating last night.  I also got some anti-diarrhea meds to give her.  $400 later and we went home.  She has been fine today, no throwing up and no pooping nasty goo.  She is sleeping on my lap as I write.  My mom checked on her a few times today to make sure she was ok, since I was to bring her right back in if she continued the way she was. 

Then there is me and my tummy issues this past week.  I don’t know what I ate but my stomach has been on the fritz since Monday.  Still is.  My diet hasn’t changed and I haven’t forgotten to take my enzymes any more than normal.  Maybe Maggie and I are having sympathy shits together (TMI but sorry!).  To add to that my nose has been on the weird side too.  I can trigger nose bleeds from coughing and do so sometimes, but this past week I have had 3!!!!!  That is more than I have had all year.  Last year I had maybe 3-4! 

That of course brings me to the true intent of this blog.  The reason for the rock and hard place.  It is my heath I talk of, in case anyone has been living under said rock and hasn’t a clue.  I find myself wishing I was sicker than I am.  Nuts huh?  But its like I just want to get to transplant so I can start living again and get the wait over with.  Sounds crazy I know.  I don’t want to exercise and maybe bring my FEV1 up 5%.  That won’t get me anywhere.  I need like 20%+ to do what I want to do and to truly feel like I am living.  And then I feel like a total bitch because some of my fellow Cystics are struggling everyday to breathe and would give anything to have 40% back.  

I do appreciate where I am.  I do appreciate that I can still work and that I can still function.  I just hate the “when will I crash” that seems to infect me.  I live everyday wondering if today I will cough up insane amounts of blood.  Or if one of my lungs will collapse.  Or if I will just do something wacky and CF related and be out of commission for a while.  It’s so hard to explain.  And I don’t feel like this every day.  Just a lot recently. 

All these overwhelming emotions hit me on the turnpike this morning.  I was thinking how most likely my office will be the last place I work before I die or get a transplant.  It made me sad.  Not because I don’t love my job and the people I work with but because I am 28 years old and I am thinking of that.  Because it is a reality.  Then in the same breath I hear a commercial on the radio about getting your teaching certificate in 12 months to teach secondary school and I find myself wanting to look into it.  WTF is wrong with me?!?! 

UGH I am a mess.  And for no real good reason.  I shall go finish off my book, sleep well, purchase a new needle tomorrow and continue my crochet lessons. 

Good night and sleep well my blog loving friends.

Wednesday, February 18, 2009

I miss riding

I had to go to my aunt's webpage tonight to get the address of the farm for my brother.  So of course while I was there I decided to look at the horses for sale.  I want Wilson :( (here).

I'm sad I want to buy him and ride him.  I want to be young and me again.  I want my lung function back.  I want to be able to handle riding again.

Done my rant, thanks!


Quick update!!!!

I am doing fairly well with crocheting thoughI had a minor setback last night, ok major.  I BROKE MY NEEDLE!!!!!!!!!!!!!!!!!!!!!!!!  Dam plastic ones lol!!!  I will have pictures in a few days once I finish all my practice pieces of each new stitch.

Now back to CF :)

I got the call yesterday I have been waiting for.  I can start the Inhaled Cipro study yay!!!!!!!!!!!  The coordinator of the study and my DR both feel I am a good candidate for the drug so I am in!!!  I am super excited and will meet with her on the 4th when I go to see my DR.  I am not sure how long the study last or any details but she is going to go over everything that day.  I know I will be getting blood work, x-rays, and a pregnancy test to make sure I am not prego.  I wonder if telling them I haven't had sex in 3 months will settle their minds about it LOL!!!!  She apologized for the delay.  It has been a few weeks since I spoke with her (ok like 6) but she mentioned that they ran into some snags getting it approved.  Dam FDA :)  But it's up and running now and I am going to be a part of it.  Of course barring any setbacks when I go like lower FEV1, and need of an admission I will be set.  So fingers crossed I can still do it!!!


Sunday, February 15, 2009

My first attempt to Crochet

I always wanted to learn how to crochet.  When my SIL was pregnant with my nephew 5 years ago I wanted to make a blanket for him.  I never got around to it.  So here I am 5 years later and learning on my own.  I went to the store yesterday and bought needles, yarn and some instruction guides.  I started yesterday and while I am not very good, I know practice will make perfect.  I just have to find a way to hold my fingers better.  

My main reason for wanting to learn is to give me something to do when I am admitted.  I want to make a poncho for my mom for Christmas and a scarf for my SIL and step mom.  I figure I have 10 months to learn and get "good" and even if they aren't perfect they will be from the heart.  

If I ever finish the first few lessons and they look ok I will post pictures :)  So you can all follow me in my attempt to crochet!!!!

Saturday, February 14, 2009


I am home and I am exhausted.  The services were beautiful.  It was great meeting her parents and sister and Andy.  And of course some of her friends.  It was sad and for some reason hugging her dad made me cry the hardest.  Even now as I write this I am tearing up.  I started crying when I walked in but when it came my turn to introduce myself to him I squeaked out "I'm Amy from CF chat too".  You know those sobs that you feel coming on and you can tell you are just gonna burst at the seam?  That's how I felt, but I didn't.  I bawled but not audibly.  

Even after attending the services it still doesn't seem real.  It still seems like a dream or a joke.  She isn't really gone...not findingJenn.  Not our Jenn.  

I'm trying to put a positive spin on it.  The Lord felt she was needed now.  That she was better served with Him as she was and not in a few years, or 20.  Perhaps he needs her more than we do.  It doesn't feel that way.  I will miss reading her blog updates.  I will miss her in chat.  

All week I have been thinking about a comment she left on my blog.  Here is the post.  I have thought about it over and over since I found out she was in a coma.  It's not her time, but alas I guess it really was....

I have so many more tears inside and I hope I can shed them before long.  

On a positive note.  It was fabulous meeting Talana finally!  I have a picture of us together but since I am so tired I will upload it tomorrow and add it here.

I also have other news to update on but that will wait until Sunday.  I have to write it all out first....

here is the picture of Talana and I outside the Church where the lunch was held after the services.  Jenn's awesome sister took the picture for us.


Thursday, February 12, 2009

To MA I shall go

Since I won't get a chance to do this before I leave I thought I would post now.  I am heading up to Uxbridge this evening and shall return tomorrow night.  I have my friend's GPS and will pack my bags after work while I neb.  I have a box of tissues and lots of masks.  

I'm saddened to be going for Jenn's wake.
I'm nervous to meet her family.
I'm excited to meet Talana.

So many emotions it shall be a long emotional day.


Monday, February 9, 2009


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.


Saturday, February 7, 2009

more on Jenn since I can't stop thinking about her

I don’t know where to begin.  When I am hurting it helps to write so write is what I shall do.  

I don’t think it is real.  I don’t feel anything.  I am sad yes, but it doesn’t seem to have sunk in yet.  I haven’t cried.  Jenn is gone and I haven’t even cried.  

It doesn’t surprise me, I was like that when my step-niece passed.  I didn’t cry until the funeral.  Then it was real to me.  I assume the same will be with Jenn. 

I just keep thinking that it is a joke.  That someone will come online and say “just kidding”.  But I know its true, she really did pass.  CF really did take her life away.  

I keep seeing her smiling face from all of her pictures.  I keep thinking of how I was going to met her in December but got sick and couldn’t.  I keep thinking that when I get to meet her in person she won’t be alive. 

It’s so sad.  I’m so sad.  CF sucks.  It beats you down and takes the good people away.  But it does make you realize how awesome the friends are that you have, and makes you cherish those days with them. 

I know this won’t be the last post I write about Jenn.  It is the only way I know how to get my thoughts out.  So bear with me my dear blog readers and expect more to come in the next few weeks.  

Good Bless you Jenn! 

Breathe easy and free! 

On a side note I coughed my voice clear away.  It is gone, totally…LOL

RIP Jenn

CF took another life.  We knew it was coming, but it still hurts.  I will miss her.  

Breathe easy my friend for you are now in a place where CF can no longer touch you.  

I am sad I never got to meet you in person, but thankfully you were in my life nonetheless.  I will treasure the Christmas card I received from you this year.  I will continue to pray for A., your family and friends.  


and get to know the lay of the land so when the rest of us join you, you will be able to show us the greatness of the other world.


Thursday, February 5, 2009

Update on Jenn

Well the news isn't great but it isn't horrible either.  

They are going to try to take her off the vent so that she will be more comfortable.  
Please continue to keep her and her family in your prayers.

Katy posted this on the CF site.  It is from on of Jenn's good friends Katie:

they took her off of the meds that were paralyzing her yesterday afternoon. they are hopeful that when these start to wear off (could be hours, could be a week), she will be able to start breating on her own and they will be able to remove the respirator. there is a chance that this will give her a chance to become a little responsive, whether that means opening her eyes or being able to squeeze someone's hand. hearing that kind of got our hopes up but they were very clear that this does not in any way change the prognosis and that they are doing this to help get her more comfortable because the vent is so invasive.

she had an ekg on tuesday that revealed that one side of her heart was okay but the other side was significantly damaged. because she is sedated, they still don't know if or how much saturday's events might have damaged her brain. they have increased her pain meds a few more times and they are closely monitoring her and increasing it as much as she needs it. we were able to see her last night (i don't think we'll be going back again) and she looked better than she did on tuesday - more like jenn.

andy and joann are doing the best they can and having a tough time. her mom hasn't left her side and her dad is there 12 hours a day and taking care of both of them. one of jenn's wishes was to have her body donated to cf research and they have had all the folks at the hospital digging up information about how to do this. dr p has been coming to see her every morning and is helping them make sure they can do it through the cf foundation so they can make sure that she has the best chances of helping other cf kids. kind of depressing to think about, but it's comforting that they are doing what she really wanted and helping others to not have to go through this.

Tuesday, February 3, 2009

CF flipping sucks

While one life, Garran, is being extended wonderfully (he is doing fabulous and last report is he is off the vent and walking around less than 24 hrs after tx!).  And another is on the way out.  Our friend Jenn is on the vent after a severe lung bleed.  It is only a matter of days or hours until we loose her.  We are all so sadden and heartbroken.  It happened so fast.  She has been in the hospital for a few weeks working through some medical issues, and waiting to be listed for a lung transplant.  And now this.  

I feel so distanced, so removed from it.  Like it isn't happening and it is just some bad nightmare.  Talking about it doesn't seem like it is her.  Like it is someone else, or a TV show.  

I don't want her to go but I don't want her to suffer.  

I pray to God that she is not suffering and that her family has the strength to get through this.

We all love you Jenn and are pulling with all our might that a miracle might happen and bring you back to chat with us.


So many prayers needed please!!!!!

7 year old Garran got his call yesterday and was transplanted.  He now has 2 fresh new lungs to breathe!!!!!

Here is his caringbridge site so you can all see what an amazing boy this G-man is!!! 

Please keep him, and his family in your thoughts and prayers so he can continue to do fabulously!!!!

Also, please pray for Officer Chris Jones' family.  I had not blogged about this before.  One of our brave officers here in Middletown was killed Thursday in a traffic accident while he was on duty.  The viewing and funeral are set for Wednesday and Thursday.  He was the first officer for us to loose in the line of duty here in Middletown.  

Sunday, February 1, 2009

Some amazing news!

Well I am going to blog about some interesting information I discovered last night.  I went to dinner with my dad and step-mom.  I was able to fill in all the information needed about my family’s colon cancer history.  I was floored at it!  I knew of some of them but was completely in awe of just how many people have had it.  So here is my list, just first name initials.  Keep in mind this is all from my dad’s mom’s side of the family.  The x2 means they had it twice! 

- Dad

- Dad’s mom

- Aunt J (dad’s sister)

- Aunt P (dad’s sister)

- Aunt L (dad’s sister)

- Uncle J x2 (dad’s brother)

- Aunt L (dad’s sister)

- Great Uncle B (dad’s uncle – died from it)

- Great Uncle J (dad’s uncle – died from it)

- Great Uncle J x2 (dad’s uncle)

- Great Grandmom (dad’s Grandmom)

- Great Grand-dad (dad’s grand dad - died from it)

- Cousin D (dad’s cousin died when 14)

What this means is that I really need to consider being tested for the gene and getting a colonoscopy done.

I also found out that my dad’s cousin B had CF!!!!!!!!!!!!!!!  I am going to call my Grandmom and get some more information though.  It was my grandfather’s brothers daughter and my dad said she lived to be fairly old.  So I need to get some info about that. 

I will  be sure to post any and all information that I find!