May is CF Awareness Month!!!

How are YOU spreading awareness?

Me?  Well I have decided that each day I will take a friend / or stranger's question and post the answer as a reply on here and on Facebook.  FB will be the short version and the longer on on here.   Some days I may have 2 posts if I need to update about my health etc.  But there will be a post everyday.  That is my blogger challenge!

This is what I posted to the FB world:

Yesterday was the start of Cystic Fibrosis Awareness Month! Taking a cue (and some of her words) from Anne, I am doing this. Each day I will pick a question and write about it. I can give the short answer here and the long answer on my blog. Ask whatever you want to know about me and CF, CF, lung transplant etc. If I don't know the answer I have a stash of some dam good friends that can probably answer the question, especially if it pertains to the post-transplant aspect of it. Seriously ask anything!!! If you have a question you want to ask but not others to know about you can send me a message. Otherwise, happy thinking, and asking!!! ♥ ♥ ♥

***Just a reminder, any answers I give are from my own personal experience with CF and the information I've gained on my journey living with this disease. Please don't take any of what I say as advice or the only answer. Each CF'er has their our own story and their own routine as prescribed by their care team.***

Start thinking and posting those questions to me!!!

Game On!

My weight back in January was 58.1 kgs or 127.8 lbs

My weight today, thankfully, was 57.2 kgs or 125.8 lbs

I have lost 2 lbs and that was WITH trying.  I have 7.8 lbs to go to get back to my "normal" weight.

So starting next week some friends and I are going to do the Game On! diet plan.  It sounds like a lot of fun.  Basically diet and exercise become a game to play.  There are teams and each day each player wins points for eating healthy, exercising, sleeping enough etc.  There are point losers as well like snacking.  Once a week the players meet up to tally the scores.  The team with the most points at the end of 4 weeks wins.  And you can decide a head of time what that prize might be.  Check out the book here.  I am really looking forward to starting it.

I remember like 10 years ago going to the doctors and wishing I could add coins or rocks to my pockets so my weight would be up, or wearing a lot of layers just to get those few extra ounces so I wouldn't get the "you need to put weight on" lecture.  Now, I wear as few layers as possible and try not to eat before I go because it makes me cringe to read the scale.  I am NOT fat by any means and I don't want people thinking I think I am fat.  As I have stated in other blog posts, I am just uncomfortable with my body and am working on it.  I want the body I had in 2006 back.

THIS body:

In other news....I had my clinic appointment today.  PFTs down a bunch...as per usual.  I was 1.28L (43%) back in January after my 2 weeks of IVs and today I was 1.07L (36%). Quite the drop.  So two weeks of oral Cipro to hold me off from getting lower, and maybe even helping me rise.  And when I go back May 1st, if there is no increase it is IV time.  Which works out well as my class ends May 10th and the next semester doesn't start till the 21st so I can squeeze a hospital stay in there fine.  I will have to figure out then another inpatient stay come September so I am good and healthy for our honeymoon in October.

Ironic thing is I feel fine.  Nothing to report to her.  Good in that sense, but bad that I dropped so much.  Just sucks lol.

Where my peeps at? errr From?!?!!?

Ok so here is the tally of where you are hail from!

USA:

Alabama

New York

North Dakota

Massachusetts

California

Michigan

Arizona

Florida

Oregon

Colorado

Washington State

Maryland

Indiana

Texas

Oklahoma

North Carolina

New Mexico

Pennsylvania

Connecticut

Ohio

Maine

Utah

Europe:

England

Czech Republic

Netherlands

Canada:

Alberta

British Columbia

Other:

Uranus (TOM!!!!! Who is really from NY lol)

Thanks guys it’s great to see where everyone is located and reading my blog. Makes me feel awesome!

Where are you from?

I'm curious to see where all my lovely blog readers are from!!

So even if I know you and know where you live, add it here so we can all see!!!!!!!!!

I'll tally them up at the end of the week and see the results.

Q & A session answers

Ok here are the answers to the questions that you generously asked!!!

Thank you all so much for responding and I hope I was able to answer them throughly!!! Some really made me think! :)

What is one thing that you are able to do / a skill you developed through having CF?

I have become very good at time management and, multi-tasking. College was a “breeze” when it came to managing my time and making sure I was able to get projects done and in when they were due. Learning to manage all of your treatments is a must early on so that you can still have some semblance of a life!

What is one thing you cannot do because of CF?

BABIES!! I will never have my own flesh and blood child. I have blogged quite a bit about this since it will be my biggest regret/disappointment in life.

What would a cure mean to you?

To me personally I don’t think it would mean anything. My lungs are too scarred to be reversed. However, a cure would mean saving many many children’s lives and that is much more important to me. I have lived a decent amount of time and I would rather see me die and a 3 year old continue to grow into an adult and realize their dreams. Not saying I want to die tomorrow but if I did at least I made it this far.

How has CF blessed your life?

CF has given me the opportunity to appreciate life fully. I find myself saying (when I am contemplating whether or not to do something) if it were to come up again next year would I be able to do it and if not then why not do it now. I didn’t start doing this until I was older but now I wish I had begun many years ago. I used to just waste my time doing stupid things (like sitting in front of the TV for hours ignoring everyone else) when I could have been doing something much more worthwhile. I can’t change the past so I live now and do what I want when I want…as much as I can of course. I know that I don’t have to make myself sick trying to do everything and see everyone every weekend like I used to do. I relax and spend time with myself now.

What is your funniest/scariest/most interesting hospital or dr related CFer story?

I did a study back when I was 18 where they inserted a hollowed out flu virus into your lungs to see if your body could tolerate it. It was phase I trials I believe. Any-who…they knocked you out but you were still awake, just out of it. Well apparently I was talking through the whole procedure (amazing since I had a tube down my throat) and proceeded to tell the doctors and nurses all about Winnie the Pooh and the Hundred Acre Woods! The one doctor was wearing a tie with Pooh on it and I just went with it. When I woke up in my room my mom told me the story and I was cracking up.

What do you like most about yourself (non-CF related).

My ability to see both sides of an argument. Sometimes its good, sometimes its bad. If I am super passionate about something then I will ignore the other side but I can always see where the other person is coming from, even if I don’t agree with them. I have a hard time making decisions (bet you couldn’t tell LMAO), and constantly have to write out the good and bad for EVERYTHING.

I know you're creative and artistically talented. When you did realize it and what did you do as a kid to express it?

I have been drawing since I was able to hold a pencil. When I was 3 my mom entered me into a Disney contest for drawing Donald Duck and I WON! Looked pretty darn good too for a 3 year old! I was also creating “blueprints” and model homes when I was a kid. I would get white paper and draw a Floorplan of a home in blue marker. Or I remember I made a house and all its furnishings out of index cards one time. It has always been in my blood. A few years ago (ok maybe like 10) I found all my old art stuff from when I was a kid. I used to get markers and colored pencils and drawing paper for Christmas all the time. I loved it! A C Moore is still my favorite store but I have moved on to add more things into my creative realm.

What is the best thing you have learned or gained from meeting/talking to fellow CF'ers?

That I am not alone. For so many years I always felt isolated and alone because none of my family and friends could relate to how I was feeling. Then I met all these awesome people online and they opened my eyes to a whole new world. A world that I never knew existed. I am now more proactive with my health and actually understand what I am doing and why I need to do it. Prior to meeting everyone I just did everything my DR said blindly. Now I know why he prescribes what he does and I can ask questions. I don’t think I ever really asked questions of him before. I just sat there, gave him answers to his questions and was off. Amazing how knowledge can turn your life around. I may be sicker than I was then but I feel better about my life and more prepared for what will happen than I did before.

I now have friends that I can turn too when I am having a bad CF day and they will know EXACTLY what I am talking about. I can discuss hard end of life topics with my new friends and not worry about upsetting my RL friends and family. I feel much freer and more open about my CF than I have in years. Discussing it doesn’t seem inappropriate anymore.

Non CF wise...if you could have one wish, what would it be?

I want to visit all the places I have read about. All of Europe and parts of the US I haven’t been to yet. Being a Historical Fiction nut I read all about England, France and Italy way back when and I long to see the castles and homes of some of the people I read about. So that would be my wish, to travel all over Europe visiting every castle, farm and city I could possibly get to. Oh and not have to pay for it of course LOL!!!

You say you just recently accepted what CF means to you. What event triggered this acceptance or was it just a gradual realization of what this disease involved?

Joing the online community was a big part in this. Before I was unaware of just how much this disease affected your body. I knew about it but never KNEW about it...if that makes sense. Once I started talking to other people with CF I knew that was I was experiencing was related to CF and not just some wacky other issue. It also meant that I could ask my DR about it and not feel like a fool. The reason that I decided to join the online community was because my boyfriend and I at the time were in a rough spot and that was triggered by CF. He wanted babies, I wanted babies but I wasn't sure about CF and babies. So I googled it and low and behold ended up on the evil cf forum - now moved to the better cf forum of course. But I needed information about women with CF having babies to prove to him I could reproduce. Needless to say I learned that having babies was not going to happen when I talked to my NP about it and found my FEV1 was a bit too low for their liking. I knew then that my perception of what CF was and how it affected me had changed. I talked to women that had babies and saw how difficult it was for some of them.

Q & A session with Me!

Many of my fellow blogger friends have had great success with a Q&A session so I thought I would join in on the fun.

Feel free to ask me anything you want as a comment to this post. You can post as yourself or anonymously. Next Wednesday, the 15th I will post the questions and answers.

So start asking away!

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!!!!

Photo Tag!!!!

You have to love these games haha!!!!

I was tagged by Christy :)  Thanks hun I always seem to get them from you!!!!!!

Here are the rules:

1. Go to the 4th folder in your pictures folder and select the 4th picture there....no exceptions!!!!  (ok I will allow only one...if you are naked or doing something dirty/naughty)!!!

2. Post the picture with an explanation and link it back to the tagger.

3. Tag 4 people to do the same!

                                           

Here is my photo.  It is from my friends, Carrie and Dave's, son Carter's 3rd birthday party back in July.  Phew did you get that?!?!  That is the ferris wheel birthday cake my SIL made!  tell me it doesn't look yummy!!!!  All you sweet toothed people like me are drooling!  Carter is the one holding the pretzel in the striped shirt.  My nephew is in the forground in the green shirt with the lollipop.  LOVE them both!!!!!!!!!!!!!!

Now for my 4 people!

I choose:

Lisa

Bree

Tara

Jenn

There are more I would have loved to link to but rules are rules!!!

Enjoy ladies!!!!!!!

<3

6 quirky things

Well I read Christy's blog and apparently now I am tagged LOL!!!!

So here are 6 quirky things about me :)

1. I like doing laundry, just not lugging my stuff to my mom's to do it.
2. I am obsessed with corny quotes.
3. I love history books.
4. I love being by myself.
5. My dog is more important than me.
6. I am a very structured person and when my schedule gets messed up I get confused VERY easily!!!

And I am taking Christy's que and anyone that reads this is tagged LOL!!