101 things...what I have done

Well I am totally bored with this 4 day weekend and I don’t want to do my holiday cards while nebbing so….I decided to write about the things on my list that I have finished thus far.  I have a mighty good amount done for only having begun this on my birthday. 

#6 – Get computer working again so it reads CDs.  This one was pretty easy.  I only needed a new cd drive which I installed myself.  Thanks to Kevin, I didn’t have to call anyone to get it set up for me and try to figure this all out. 

#9 – Write a short story.  I had begun writing a story when I was in school and I took a few extra days to finish it and make some changes.  It is not entirely done and not ready to be sent to anyone yet, but it is done, it just needs tweaking. 

#13 – Get a sleep study done for O2.  This one I kind of bypassed.  My dr put me on O2 at night after I told him my issues I was having.  It worked!!! 

#20 – Donate all my old books to the library.  This one was a help to me too!  When I was packing to move I just put the books I didn’t want into a different box.  Julie, my old roommate took them to the library by her work.  She had some old books she wanted to take too. 

#21 – Get all my pants hemmed.  I am short, this is a known fact.  And short people have a hard time buying pants that fit.  Even with my 3 inch heels I was still walking on my pant legs.  I finally gave in and dropped them off at the cleaners.  A week and $80 later I now have pants for work that actually fit me!!! 

#29 – Delete old files off my computer.  This one only got done because I was without the internet for 3 weeks!!  I deleted all my old files and programs that I never use.  I have a lot more space now!! 

#35 – Go to Disney World.  Well I kind of cheated on this one haha!  I wrote it in knowing I was going to go.  Hehe, shhhh don’t tell!! 

#39 – Back up all my blogs.  Did it!  Took a while to get them all copied but it is done!  And now I write my blog in the file and then copy it to my blogspot.  See worked well!!! 

#82 – Actually go Christmas shopping on Black Friday.  Yes I braved the stores and went shopping on Friday.  I was going to go at 5am, but I was still too tired.  Now I am glad I didn’t since I heard of a few deaths caused by trampling!!!  OMG WTF?!?!  I almost had #83 (finish shopping before December 1^st) but I have a few more people to get and I know that won’t happen tomorrow.  Next Year!!!! 

#90 – Start birth control.  I’m on the 5 year plan, Mirena.  I love it so far.  Well maybe  not.  But the first 3 months you can experience in between bleeding.  So once that is over then I will love it!!  No babies for me!!!

The CF chest...

No not boobs all you pervs!  I am talking about the CF chest cavity.  We all know what I mean.  That expanded, barrel chest look we have.  The one that makes us self conscious about our appearance.  Well it makes me self conscious.  

I decided to write about this today because I had to buy more bras yet again.  My chest keeps expanding and it won’t stop.  I feel I will topple over soon if it doesn’t!!  As I sit writing this I am constantly pushing my shoulders back to expand my bra hoping it will stretch it out.  But unfortunately it doesn’t.  It continues to dig into the side of my chest. 

Last week, I had to go shopping for a dress for my reunion (which I didn’t end up wearing anyway).  I went to 3 different stores looking for a dress that fit and that I liked.  I was trying on 8s and 10s!  And they were still too small up top!!  The bottom would look big and baggy and yet the top wouldn’t close.  I hated it!  I was fed up and frustrated.  I’m a petite person I am not supposed to have trouble fitting into clothes or finding ones that zipper.  Though in recent years I have found the bloated stomach and barrel chest are much more pronounced and I am resorting back to my pre-dx days of skinning arms and legs and bloated body.  IT BLOWS!!!  

A few weeks ago I found my prom dress again.  It is so pretty I love it.  I would love to donate it but I don’t think it would fit anyone but me (or another CF girl).  It was altered A LOT so I could fit into it.  The dress is a 10, but the stomach area was taken in to a 4 so I could wear it.  But that was the only size that would allow me to zip up!  And that my friends was 10 years ago!!!  And probably about 30% lung function (I was in the 60s-70% in high school).   Of course now I would love to try it on but I know I will be sad when it won’t zip.  And not that I put on 15 pounds since high school but because my chest has expanded SO much.  

It’s little things like this that irk me the most about CF.  Not only can I not breathe normally, digest food normally, but now I can’t even buy clothes normally!  I feel weird in tight shirts because I look fat, up top.  I hate wearing bathing suits because then the barrel is VERY noticeable.  And getting naked, forget it!!!!  Ok well there I have no issue but its not like I am standing up modeling my nakedness LOL!  Minds are elsewhere ;)  I am constantly buying new clothes because the ones I had 6 months ago no longer fit.  Mainly work clothes, and they are expensive!!!  The buttons start to pop out a little and then, opps, next size up!  Of course the next size is too big elsewhere and I begin to look like a drowned rat.  I am still in a size small so no it isn’t that huge of a deal but XS used to be big on me and would still fit if not for this stupid chest!  

The worse our lung functions get the worse the barrel looks.  I am at 40% right now I can only imagine what it will look like when I am at 20% and 10% and can’t breathe worth a pooh.  Will some of the barrel look go away if I can get the excess air out?  Will I be able to fit into my clothes again if I can get the plugs out that are trapping the air?  When I ultimately decide to have a transplant will that look go away entirely?  This are just arbitrary questions.  Will the bloated belly disappear too? 

For all you bloated, barreled CFers, I salute you and your quest for loose fitting, comfortable clothing!  Now shall we all do chest bumps? LOL

Thanksgiving thanks

My turkey day was pretty good!!  I ate WAY more then I can fit in my stomach comfortably haha!!  But that is the joy of Thanksgiving!  

I went to my mom’s to help cook around noon.  Hey she didn’t get up until 11 either!!  Everything was mostly made we just had to cook things.  I got to peel the potatoes…I think there might have been some finger skin in there too haha!  Just kidding!!  Our goal was to create a centerpiece that would look nice…and stand on its own.  We started out with candles inside apples.  They did not want to stand alone.  So we tried scotch taping them to the table.  Even worse!!  So then we got a basket and put the apples in it and got two lemons, skinned them, ad put them in there.  Worked great!!  But it was a little bland.  So my aunt went to the neighbors house and collected some sap filled pine cones.  That helped tremendously!  My mom had some gourds so they were placed around the basket too.  Ended up looking mighty nice!! 

I was supposed to eat dinner at my mom’s and then go to my dad’s for desert.  Since the two of us slept late I ended up switching it around.  I went up to my dad’s around 3:30 and had appetizers and then dinner.  Stuffed me-self!!!!!  But it was de-licious!!!!!!!  

Dinner was a little sad.  On the way up I found myself crying a little.  It was our first real holiday with out Ashley (Step-niece who was killed in June in a car accident, 2 weeks after her 21^st birthday).  I felt sad that she was not there.  It would be very strange!  Florence (my step-mom) said the prayer and she started crying before she could talk.  She just thanked everyone for being there and all.  Everyone pretty much had tears in their eyes.  We were all very thankful to be there and be able to be with each other.  The first family-holiday after losing a loved one is the most difficult, in my opinion.  That is when you truly notice that person’s absence.  But after the prayer we a bucked up and gorged on food out the wazoo!!! 

When I was leaving my dad walked me to my jeep.  He always does, so sweet of him!!  It is one of the times when we get to be alone and just chit chat.  Of course he took the time to lecture me on the dangers of traveling to another city to meet someone I met online!!  I assured him I felt safe going out there.  I wouldn’t have gone if there was any doubt in my mind about my safety!!!!  But that is a father’s job…to worry about his daughter.  I love him!!!!!! 

I ended my evening at my mom’s with the miss-fit group.  She likes to invite people that have no where to go for dinner.  Mainly the people that live at the Langhorne Hotel.  Its very kind of her.  Just makes for a weird dinner haha!!!  

So to end on a good note.  What I am thankful for this year: 

•          To be alive and well to spend another year with my family
  
•          To have great family and friends
  
•          To have a job with excellent benefits in this spiraling downward economy
•          To have found someone that I care about and look forward to talking with every night
  

Here is a picture of the centerpiece both before and after!

Stupidity at its best...or worst!

By now I am sure most of you have heard about this. Personally I am not offended. I find it amusing. Yes it annoys me that there are people out there STUPID enough to make comments without getting the full facts. But I am trying to look at the positives...we are getting publicity!!!! Yes it is weird, strange, not normal publicity, but hey now people are out there looking up what CF actually is! NOT a disease that affects white males, as the CUSA claims, but a disease that affects caucasions of BOTH sexes.

If you are interested in reading the articles here are a few:

http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20081125/carleton_fundraiser_081125/20081125?hub=CTVNewsAt11

http://www.theglobeandmail.com/servlet/story/RTGAM.20081125.wcystic26/BNStory/National/home?cid=al_gam_mostview

http://www.theglobeandmail.com/servlet/story/RTGAM.20081125.wcystic26/BNStory/National/home?cid=al_gam_mostview

Clinic Today

Well today was my clinic appointment. I went ok. Been better but definitely have been worse too.

Here are my numbers:

Weight - 118
FEV1 - 1.26L, 40% (down from 42% and 1.31L)
FVC - 2.4L, 65% (stayed the same)
FEV1/FVC1 - .52L 62%
FEF 25-75% - .49L 14% (down from 15%)
FEF 25% - 1.49L 26%
FEF 75% - .24L 12%

So all of my numbers are down. But I didn’t have a treatment before I went and my appointment was at 2pm. So that could have had something to do with it. That and I am getting a cold so that will drag my numbers down a bit too. He told me I am a month behind :) Apparently what I have now is what was going around a month ago!! Haha leave it to me to be late! I got my flu shot and hopefully that will ward off anything else that comes my way.

I go back in January so lets pray I don’t need any emergency visits before then!

Today for some reason really made me want to kick my ass in high gear and get those numbers up. I am going to work out more, take the steps at work when I can, and do what I need to so I can stay healthier longer. I will not let CF win!!! :)

Good articles to read

http://www.xconomy.com/san-diego/2008/11/24/sequenom-may-spot-single-gene-birth-defects-like-cystic-fibrosis-in-a-sample-of-mothers-blood/

http://www.walesonline.co.uk/news/cardiff-news/2008/11/24/pupils-use-creative-skills-to-express-their-vision-of-future-91466-22322622/

http://news.bbc.co.uk/1/hi/health/7742873.stm

10 year Reunion

Last night was my ten year high school reunion. Wow 10 years!!! I can’t believe I have been out that long already!!!!

It was a good time. A little disappointing because there were not that many people there. Probably only a little more than 100but we graduated with well over 700!

It was fun seeing some of the people I haven’t seen since high school and remembering WHY I haven’t seen them…they suck! HAHA!! I felt like I was back in school again because of the segregation of the “clicks”. Again the “popular” kids stayed away from the not so popular kids and the “nerds”. They stuck to themselves and ignored everyone else. Whatever. I had no desire to talk to them in high school and still have no desire after 10 years…hehe.

I wasn’t sure if any one would comment about my facebook pictures and all since some of the people I am friends with on there were there, and they never knew about CF before. But no one said anything which was fine by me. No need to begin telling the world about my problems haha!!!

I had tears in my eyes at one point in the night. There was a memorial area for the classmates we have lost and my friend Mike’s name was on it, obviously. It made me sad to see his name there. I still miss him sometimes and wish he was still alive. See what drugs can do to you!

There were only 4 people on the list which surprised me. I ad thought there was more than that. I knew of 3 of the people and the fourth person I didn’t know. 2 of them were killed by drugs/drunk driving and the one guy died of some disease he had since birth.

They also had a slideshow of pictures from high school and elementary school!!! UGH it was terrible seeing pictures of me from way back when! Ahhhhh!!!! I was hideous LOL!!! For the 20 they do pictures of kids and weddings. What if you don’t have kids or get married??? Guess you don’t get on the slideshow.

I found myself wondering if I would make it to my 20 and if so would I be on O2, or have had my TX yet. A part of me doesn’t think I will be around for the 20 year. Sounds sad I know, but it is a reality. Oh well. I won’t dwell on it!

It was good being there and though it wasn’t as exciting as I had hoped I am still glad I went. If I hadn’t I know I would have been super curious and bummed I missed out!!!

The group of gals I went down with.

In memory of those we have lost. I miss you Mike!!!

What you all have been waiting for....My OKC trip

Ok well since everyone is super excited and antsy to hear about my trip…..

We had an awesome time!! It was hell getting there but it was well worth it! The weather on the East coast was not conducive to air travel!! Both my flights were delayed, which meant I got in at 2:30 am instead of 11:40pm. Not super bad but it was 2:30 am his time which is 3:30 my time and I got up at 4:30am!! So needless to say I was exhausted.

I was so super nervous to meet him, so bad I think I was driving him up a wall! But thankfully because of the delay I forgot all about being nervous to meet him! So that had its benefit! The second half of the plane ride from Dallas to OKC I was so happy and excited I couldn’t stop smiling!

I didn’t feel weird at all seeing him or talking to him in person. I wasn’t sure how it would be but it felt natural. We chatted and fell into a comfortable groove.

He took me to meet his grandfather….so adorable!! And his mom…LOVE her!! I think she was my second favorite person on my trip ;) First words out of her mouth when she saw me were “you don’t look sick” haha!!! But she didn’t mean it in a bad way! Hello she has 2 kids with CF!

He took me to some great restaurants and we walked around Bricktown (revitalized area full of old brick buildings). It was cute, but dead since it was so early.

Monday he worked and I slept haha! Then we had dinner with his family for his and his sister’s birthday. It was a lot of fun. 3 CFers at one table…a lot of enzymes and coughing haha! It was like a meet and greet ;) Ok well I did the most coughing being the “sickest” one.

I left on Tuesday morning….bright and early. I was sad to go but didn’t cry until I got on the plane. Then I cried from OKC to Dallas. People on the plane probably thought I was crazy. Wouldn’t be the first time!

It was good to be back in Philly but I miss him already! Luckily we see each other in 2 weeks!!!!!

All in all it was a fabulous weekend and I am so glad I went. I can’t wait for many more weekends like it!

Here is a picture of the two of us for those of you who aren’t cool and don’t have Myspace ;)

An update...

November 8, 2008

An update for you all….totally random shit!

Well it is the end of my first new work week. I now work 4-10 hour days. I took Wednesdays off since that is when my clinic appointments usually are. And now I am glad I did since by Wednesday I am exhausted from working so much. I just hope that I can keep it up. Most likely the first week is the roughest since I have to get into some sort of a routine. My game plan is to get up on Wednesday and go to the gym after my treatments. This past week didn’t work out so well. My roommate got a puppy and when he put him in the cage when he left he barked for 2.5 hours! He leaves at 5:45am and I got up a little after 8. I tried unsuccessfully to sleep through it, and was disappointed since I was up until 1am watching the election coverage. GO OBAMA! I am hoping that this upcoming week will work out a little better. And hopefully the puppy will stop barking!

He hates being alone is what we are realizing. He loves his cage just not when the door is closed and locked. He is getting out of it so now we have to put a bungee cord around it so he stays in. He is adorable as all hell….but he is a puppy!!!

Oh I did move in with my friend who is getting divorced. Its nice. All my crap fits in my bedroom and we put my sofa in the living room. I didn’t realize how much shit I had until I moved! Good lord! A lot of it is in storage at my moms but still. I will have to take some pics and post them. I look like a pack rat haha!!!

I am now seeing what everyone had said about the O2 concentrator putting off a lot of heat. I never noticed in my old apartment because it was so drafty! But now I sleep with almost no blankets and have the windows cracked because of the heat. Its crazy!! But at least I won’t have to put the heat on in my room at all haha!! I am definitely sleeping much better with O2 and I am so glad I got it! I still sleep a lot of the weekends but I don’t get anymore crazy headaches and I wake up feeling rested which is a new thing for me!

So on to more news. I bought a weekly pill container and I am kicking myself for not buying one sooner!!!! Goodness how much easier it is to put the weeks supply of pills in and then just take them out on a day to day basis!!! Not having to open and close 9 bottles a day is fabulous!!! I recommend everyone who takes maintenance drugs to get one!! Plus now when I go away I don’t have to lug all those huge bottles with me!! Which will be perfect for next weekend ;)

Oh I can not wait to meet this guy!! We have so much in common and we get along very well. Granted its all online but that is the point of us meeting. To make sure we have the same chemistry in person as we do online. I am super excited and super nervous haha!! I have never ever done this before! He knows that so he has been really great with everything. I will have pictures to post when I get back too and by then I should have the internet up and running! If not I may go insane!!!

Work is going great. The interior design department is up and running and looking for more work. So if any of you know anyone in the Philadelphia region looking for commercial interior design services send them our way!! Well contact me and I will give you my work info so that they can call us. My partner T and I went to Baltimore last week for NeoCon East. It is a huge designer show for all things ID related. But mainly furniture and no lighting which we were disappointed about. But anyway. We made a lot of new contacts and have been getting some more products to put into our office library. We also got information about the NCIDQ exam that we need to take to become registered designers. I thought that you HAD the do the IDEP program which is like a mentorship. But you don’t have to in the US. So I can take the test right now (which means I updated my 101 things to do in 1001 days list)!!! Well come spring haha! So I filled out the paperwork to apply for membership to ASID and will be applying to take the exam in the spring! The ASID offers study sessions for the exam for free to its members so I get a double bonus to being a member. Only thing that sucks is it costs $300 a year for 2 years then it goes up to $480 a year. So that really blows! Plus once I take the NCIDQ my membership will upgrade and be more. But I will be registered and awesome haha!! And the exam itself will cost me almost $800 and takes 2 full days to complete. So I NEED those study sessions so I pass on the first try!!!! And I need to get me some money haha!! Income taxes, hopefully, unless I screwed myself with being on disability so often! Or I could lend myself out as a prostitute!!! I could make some decent money maybe haha!!

Well that is all I have to update on now.

Take care!!!

Still no internet

I still don't have internet at my house!!! UGH! So I am stuck going to my mom's every now and then and using it at work. I have been keeping up with my blogs they just aren't getting posted haha!!! I should have it by the 14th but I will be away from the 14th-18th so you won't see any new ones until then. BUT by then I will be back from my trip to meet my someone special and it will be a good blog :)

I did start my new work week at work. It's ok. 4-10 hour days are not that great though. I am tired this week!!! But hopefully I will get used to it at some point. And if not then I will reduce my hours to 36 and take a pay cut!

So sorry I haven't been posting or keeping up with everyones!!!! I feel bad :(

<3