Tuesday, December 30, 2008

Pulmonary Rehab

Today's first session went awesome!

Last week I basically did a few machines for a couple minutes just so they could get the right settings for me and I left feeling completely wiped out and went home and fell asleep.

Today, I did all the machines I was supposed to do for the alloted time PLUS the cool down exercises at the end and I have to say I felt pretty good about the whole experience. I'm not going to say I wasn't tired, because I am and I will definitely sleep well tonight and probably be sore tomorrow but over all I feel I did a lot better than last week and I can't wait to go back! It can only get better from here.

I must admit though that I am like the youngest person they have going to pulmonary rehab...everyone around me is like 75 or older and they (the other patients) look at me with that sad face like "oh why is she here she is so young??" Oh well! :)

Tomorrow, I have to go grocery shopping to get all the yummy food I plan on making for the party tomorrow night. The house is already cleaned so the cooking is really the only thing left to do.

I probably won't write anything tomorrow so I hope everyone has a fun/safe New Year's Eve and I will post pictures of our party probably on Thursday or Friday!!

HAPPY NEW YEAR!!!


Monday, December 29, 2008

Tomorrow

So tomorrow is my first "official" day at pulmonary rehab. I am anxious and nervous all wrapped into one because I know its going to be hard and I will probably be wiped out by the time I get home!

Wednesday night we are having a New Year's eve party at our house. We had one last year too and it was a lot of fun so I am looking forward to that. I will hopefully take a few pictures so I can put them up to share with all of you! I always plan on taking pictures but sometimes I get distracted! :)

Oh yeah....did I mention that the Miami Dolphins are the AFC East division Champions??!! Go Fins!! Now all we need to do is keep it together long enough to survive the playoffs. Let's keep our fingers crossed!

Sunday, December 28, 2008

Sad day...

Today my whole family is going over to my grandma's house so that we can remember my wonderful papa who passed away a year ago today. He was a great guy and he is missed by everyone who knew him. :(

Saturday, December 27, 2008

Christmas Day...

I hope everyone had a wonderful Christmas!!

Ours was really good. We spent Christmas eve at my in-laws, we ate dinner and then we all played pictionary. That was hysterical...I am HORRIBLE at drawing but we still had a good time.

Christmas day we had breakfast/presents with my in-laws and then we went to my parents house for the rest of the day/presents/dinner.

I got so many great gifts this year, mostly for the house, but I love them all! I got Danny a Play Station 3 for his "big gift" which I am not sure was such a smart move because every time I turn around he is playing it! :)

Brodie had a good Christmas too. He got a stocking full of stuff from us and then he also got presents from my in-laws and Troy & Stephanie (Danny's brother and his wife) it was really cute! Here are a few pictures from Christmas Day...

Brodie hanging out


My Stocking

Brodie checking out the presents

Danny showing Brodie his stocking stuff

Cute boy in his Christmas outfit!! :)

Wednesday, December 24, 2008

Christmas Cookies!!

Today I spent most of the day baking Christmas cookies and candies. I had SO much fun I think I might make this a yearly tradition (this was my first year.) My sister Jessica was here along with my sister-in-law Stephanie and my niece and nephew, Colin & Delaney. Here are some pictures of today's fun...Enjoy!

mmmm....um

My sister (in the green) with Steph & the kids making Sugar Cookies

me making toffee (please don't mind the pj's!)

pretty...

All done!!

I'm not sure if I will be back on before Christmas so I am going to say Merry Christmas now in case I miss you! I hope everyone has a fantastic couple of days. :)

Monday, December 22, 2008

Orientation

So today was the orientation of my pulmonary rehab that I am starting next Tuesday! I got there at 9:30am and I didn't get home till 1:00pm.

Most of the meeting was me talking with the respiratory therapist about my medications, signing paperwork, getting blood pressure/baseline readings of oxygen, etc. and the second half was hooking me up with the heart monitor (all the patients have to wear the monitor while they work out) fitting me/finding out what my settings where on all the machines and then using all the machines for a couple minutes to see kind of where I am at THEN I had to do a six minute walk!

By the time I got home I was beat!! My little sister is here for few days (we are baking cookies tomorrow) so she made the two of us lunch and then while I was watching General Hospital at 3 I started to dose off a little bit because I was SO tired. I couldn't even keep my eyes open for my favorite soap!

I am sure once I get going with the program I am going to feel tired at first but I know in the long run the positives WAY out weigh anything else...I am just excited to get started and hopefully start feeling better and stronger! :)

Also, I can't remember if I told you already but I thought my abx were done today but the place that delivers my meds said my last dose wasn't till Wednesday evening so I still have a couple days....I can't wait until it is done, I am SO over getting up before it is light outside!! :D

Tuesday, December 16, 2008

Just a few pictures....

So tonight Danny and I went to Target and finished up all of our shopping for our family so now we are done....and its all wrapped and under the tree. BTW, I finally got around to taking a picture of our very first Christmas tree!!


We also bought a brand new bed for Brodie....I think he likes it!!




This last picture is a wall decal that I had bought a Kohl's weeks ago and while I was in the hospital Danny put it up for me!! Its above our bed and I LOVE it....I always say we have to kiss goodnight so when I saw this I had to buy it.

Almost done!

Well, I have finished all my shopping for Danny I just need to get him a few things for his stocking and then I am totally done with him!

This Holiday season I have completely fell in love with Amazon.com, not only are things cheaper than if I drove to the store to buy them but they have free shipping too! You can't beat that...

All I need is a few more items for a couple people and then we are done and then I am not going to the store again until AFTER the holidays because its like a mad house there and I hate that.

Brodie is home with us now, we picked him up on Sunday from my parents house. He was SO excited to see us he almost jumped right out of my moms arms when he saw me walking up the side walk...that made me feel really good because I thought he would forget about me! He was following Danny around all day he was probably thinking "you aren't gonna leave me this time buddy!" It was really funny.

I am still on my abx....its going ok I guess, I just hate the morning dose because it is so freaking early!! Its only till Monday though so I should be able to handle it! :)

Saturday, December 13, 2008

IM Home!!

I got home last night around 8. It feels SO good to be home!

Last night we had a fire (we have a fire pit in our backyard) and some s'mores. It was perfect weather for a fire. I think the low was supposed to be 44 last night, whatever it was it was chilly!!

We were outside till almost 1 o'clock in the morning so needless to say I was just a little bit tired when my alarm went off to start my 6am dose of abx!

Tomorrow we pick up Brodie!! :)

Thursday, December 11, 2008

What's a few more hours....

Well, I thought I was going to be going home tomorrow sometime early afternoon and now I can't go home till AFTER my 6:00pm dose of medicine because of yet another hospital screw up!

A couple days ago my doctor came in my room and he told me that the one abx I was on (Azactam) is back ordered and that he has me and another CFer who is here on that med and there is only enough abx for 1 patient for the next 6 days and because she has other problems with any other med he puts her on she gets the 6 days of medicne and he is going to put me on something else effective this morning. Fine.

So today I specifically asked my nurse this afternoon when she was hanging my med if that was my new abx and she said no that it was my last does of Azactam and that my new abx, Amikacin wasn't going to be till 6:00.

Well at like 6:15 my doctor came in to see me and see how my day went and he asked me how I felt with the new abx....and I told him I didn't know that I was just getting it as we were speaking. He said "no, that is supposed to be your second dose" and I said "well, its not its my first" and he says "call your nurse."

Let me just say that my doctor is the sweetest nicest man in the world and I had always heard that he can get mad at the nurses and is kinda scary at times but I have NEVER seen it until now...he laid into that nurse, so much so that I felt awkward watching!

Anyway...I get side tracked.

Basically what happened is he wrote for me to start my abx this morning so that my 3rd dose was tomorrow morning before I went home so he could get the proper levels done (because remember he leaves for peru or something tomorrow night so he won't even be in the country) and now my third dose isn't till 6:00pm so it throws everything off!

The reason he was so mad at the nurse is he specifically wrote that I was to d/c the one abx and start the new one this morning and the nurses for whatever reason didn't follow them. I don't think he would have gotten that mad if it hasn't been like one thing after another and not just with me there have been problems with his other patients and I think he is really getting fed up.

Its just a few more hours but I thought I was going home earlier so I am a little bummed!! Oh well.

Tuesday, December 9, 2008

Burning Up!!

This is my second day on steroids...and I feel like I am in a sauna!!! But I am feeling WAY better than I have even after being on IV's for 2 weeks so it is well worth the hot flashes! :)

My sugars have been a little high in the afternoons but that is to be expected from the solu-medrol, nothing a little insulin can't fix.

Just waiting on the hubby to bring me a milkshake! Man I love ice cream....

Monday, December 8, 2008

Friday

So...Friday is the day I get to go home!! I will still be doing a week of abx at home but at least I am getting out of here!!

My doctor is going on vacation (he leaves Friday night) and there is no way I am staying here without him. I am just looking forward to being home so I can finish up on my Christmas shopping and pick up my dog from my moms house (she is dog sitting for me!)

Once I am home I have it already set up to start pulmonary rehab twice a week at the hospital by my house so I am really excited about that. I think it will be really beneficial for me to get out of the house and working to get strong!

Sunday, December 7, 2008

Nothing to do....

Its Sunday...there isn't anything on TV, I finished the 2 books my mom brought me and I have nothing else to do!! I am SO ready to go home, tomorrow is day 14 on abx and I probably have another week left. I am feeling much better than when I came in but not 100% yet.

Dr. Faverio (my wonderful Dr.) wasn't on call this weekend so I had to deal with the evil Dr. who was on call. I hate him and wish he didn't even have to come in my room...every time he does he pisses me off by something he says. OK enough of my rant... :)

I think everyone at home is sick right now so its probably a good thing I am here so I don't get there nasty colds!

p.s. I MISS MY PUPPY!!! :)

Monday, December 1, 2008

Update...

So...I know I haven't written anything since Thanksgiving, but a lot has happened and I knew I would have tons to write about! Let me start off by saying that I am back in pediatrics and I have it straight from my doctor that I will NEVER be going to the 6th floor again! So here it goes...

Thursday night my husband dropped me off to my room (on the 6th floor) at 5:30pm and then he had to leave right away so he could go to his mom's house for their Thanksgiving (I had to be back for an abx so I couldn't go we just went to my mom's house to eat.)

So I get back to my room, I got up to use the rest room and to get my laptop out of the bag and plug it in when I was feeling a little short of breath so I sat on the bed. After a few minutes I still wasn't breathing easy so I bumped up the oxygen from 3 to 4 liters and that didn't help either.

At this point I decide to hit the call light so that I could get my nurse to help me and to call respiratory so that I could get a breathing treatment. This was at 5:45pm.

As I sit there and wait for someone to answer the call light I still can't catch my breath and at this point I am starting to really get scared because I just can't catch my breath. I start to get really light headed and start dripping beads of sweat off my face all while nobody is answering to help me! I start thinking of alternative ways to get someones attention from trying to open the room door and yelling to just pushing the code blue button which I know has everyone come running but I didn't...I just waited.

FINALLY, at 6:05...20 MINUTES later a CNA just happened to be walking in my room to see if I needed anything (not because my call light was on) by this time I am gasping for breath completely white with blue lips and I tell him I need my nurse and respiratory because obviously I am having trouble breathing. He runs and get a nurse and of course they rush in throw up the O2 as high as it can go and check my Sats which were 75/76 on the 4 liters I had put myself on! Respiratory comes in and starts my treatment and I start calming down almost right away. After 2 treatments I was back down to 3 liters of oxygen and breathing fine and thank goodness haven't had an issue since.

Both my doctor and my mother were LIVID at the thought that my breathing was allowed to get that out of hand because a call light was left unanswered that long. Luckily I was ok but it could have been much worse and that kind of care is unacceptable and that NEVER would have happened to me if I was left on pediatrics where I was. My mom is going to be writing a very lengthy letter on my behalf and my doc is going to be going to whoever he goes to, to make sure something like this never happens again.

I am feeling better now but not good enough to go home yet....in the mean time I have work I can do and 2 books my mom got me from the library to read.

Thursday, November 27, 2008

Happy Thanksgiving!!

I hope everyone has a fun, safe day and eat lots of yummy food!! I am actually getting to go to my moms house for a few hours today so I am thankful for not having to spend the entire day in the hospital!

Have a GREAT day everyone! :)

Wednesday, November 26, 2008

Waiting...

I have been waiting for an hour for medication for my headache.....
I have called the nurses station 3 times......
I am still waiting....

Tuesday, November 25, 2008

Question of the day...

From my nurse today: "So have you had this your whole life??"

WTF!!! I was like Yeah....I was born with it.

Then she's like: "So why do you need to take enzymes?"

I said: "Well, CF affects the lungs AND the digestive system so I need the enzymes to help digest my food."

Nurse: "Oh well I knew the lungs part but I didn't know it affected your digestion."

I just looked at her in amazement....I mean what do you even say to that? I told my doctor and he couldn't believe it either. He says I might get to move back down stairs by Thursday. I think its pretty sad when I can't get qualified help unless I am in pediatrics!!

Room Change

So my doctor is the same doctor that I have had since I was a kid...which makes him a Pediatric Pulmonologist. When I am admitted to the hospital I am placed in the pediatric ward still which is fine by me! I know all the nurses and I am comfortable being there.

Well, last night a kid needed to be admitted and there wasn't any other private rooms available...so guess who got bumped to the adult floor?? I was really upset and still am not very happy but what are you gonna do. The rooms are MUCH nicer, bigger and newer but I would rather have an old small room with nurses that I know and where I am comfortable, than where I am with nurses that know NOTHING about CF. Seriously, when I say they know nothing I MEAN nothing!

I haven't seen my doctor yet today which is unusual for him...he probably knows I am upset! I am still having headaches and I still feel kind of crappy so I will keep you posted on that too.

Sunday, November 23, 2008

I am in the hospital

I just wasn't feeling ANY better and I want to be able to be with my family on Thanksgiving so I admitted myself tonight so that HOPEFULLY I can go to my moms house on Thursday and feel a little better than I have this week!

I have not slept in 5 nights due to my horrible headaches so I am just looking forward to some sleep!! Plus my appetite this week has been pretty much non-existent so I didn't want my weight drastically affected by not feeling good as well.

The only bad thing is that my doc wasn't on call today so I am being admitted by a doctor who doesn't really know my routine but that's ok I will see Dr. Faverio tomorrow! I will keep you updated on how I feel.

Wednesday, November 19, 2008

Christmas Background!!

I changed my background for Christmas....what do you think??

Got a call back...

My doctor's office called me back. He is starting me on 14 days of Cipro along with Colistin via nebulizer (I am on this every other month anyway but this is supposed to be my off month) I am also supposed to increase my albuterol treatments to 4 times a day. Hopefully the combo of all these meds will help me feel better and maybe I can get some sleep tonight!!

Headaches

The last 3 days I have woke up with the worst headaches I have ever had. At first I thought it was my pillow causing me all the problems because when I woke up the pain was at the back of my head where my spine meets but then once I would get up it would move to my whole head. When I take 600mg Ibuprofen I am fine but once it wares of its back again AND now its starting to effect my sleep...the last 2 nights I was up almost all night because of my head! I am going to call Dr. Faverio's office soon to let him know and see what he thinks. I will let you know the outcome.

Sunday, November 9, 2008

Still in Pain!!

My arms still hurt....it has gotten better but they are still achy. At this point its more annoying than anything I just want it to go away!!

We did pretty much nothing this weekend. There is a fair called the coconut festival that they have every year with bands that come and play and carnival food and rides. We didn't go but it is so close to our house we could sit on the deck in our backyard and watch the fireworks display Friday night. We could hear the bands too but it wasn't anybody that great. Friday I think was some country guy and Saturday they had a Journey tribute band (which I love Journey but a tribute band isn't the "real" Journey) and Survivor who's only claim to fame is "Eye of the Tiger!!"

Danny worked yesterday during the day and he is working again right now, hopefully it won't be ALL day! There is supposed to be a HUGE sale at Michaels today so I want to go and see about getting picture frames for all the pictures we got done last weekend with the family! I also need to see about getting a tree skirt and topper for my Christmas tree! This will be the first year I am putting up a tree in our house. Last year we moved in a few days before Christmas so I didn't see the use in putting up all the decorations just to take them down in a week. So needless to say I am REALLY excited! If I am going to be honest (we are all in the trust tree here right??) my Christmas tree box is already in my living room!! I am thinking about putting it up sometime this week and having it decorated by next weekend.

I don't have a lot of decorations for the house but I am gonna try and not buy anything and then the day after Christmas get a whole bunch of things for NEXT year. That way I get everything on sale!!

Well, I think I am going to make something for lunch....have a great Sunday everyone!!

Thursday, November 6, 2008

Updates

I know I haven't written in awhile but I have had a lot going on. Last weekend we had a Halloween party Friday night that we went to at our friends house, it was a lot of fun but I didn't dress up. I know what you are thinking....How can you go to a Halloween party and not dress up?? Well I HATE dressing up and I never do it and my friends love me anyway! I did put little devil horns on my head but that is as good as it gets! :)

Saturday I hung around the house and made 2 pies and homemade potato salad for Sunday and then Saturday night we just went out to eat with some friends. We went to a steak house that we haven't been to in probably 2 years (you know the ones where you can eat peanuts and throw the shells on the floor) and boy has it gone down...I remember the steak being awesome and it was less than satisfactory and so was everyone else's!

Sunday, we had to get up super early because we were getting family portraits done with my family. It took a long time but they turned out really good! I will try and put some of them up later. My whole family then came back to our house and we watched football and hung out and had some awesome food! All in all it was a good weekend.

Now for this week...I have had something to do everyday thanks to Gainesville. Remember the post where I was all happy and I couldn't believe how fast my doctors appt was last time we went? Well I get a call from the tx coordinator last week saying that if I wait until my next appt (sometime in January) all my test will be expired and that I need to come back up to Gainesville sometime before Thanksgiving to do them. Now we were JUST there and I did not want to go back already so I asked if I could do them in town and fax the results to her and she said yes...thank goodness! So Monday I had to do a PFT at my doctors office then go next door and wait for an hour just to get a simple BMP drawn! Then yesterday I had to do a six minute walk and not to mention I need my port flushed!! Its never ending....

To top it all off Monday when I woke up from taking a nap my arms were hurting really bad. I sometimes get what feels like arthritis pain (but it isn't arthritis). It comes and goes and there isn't really any rhyme or reason for it. Luckily, I haven't had to deal with it in well over a year but it is annoying! Right now it is affecting both shoulders, both my wrist and some of my fingers. Its just really achy...it usually last for about a week and it is WAY worse when I first wake up in the morning. Has anybody else heard of this??

Well, I am off to run some errands....hopefully later I can get some pictures up here from Halloween and my family pictures!

Thursday, October 30, 2008

I VOTED!!!

Tonight Danny and I went and did our early voting. We got there at like 6:00 and didn't leave until 7:45!!

If early voting is that long I am glad I will not have to wait in line on November 4th! Next year though, I will probably send mine in by mail. Almost everyone I know has done there's by mail this year...I have always just went to the precinct.

Regardless of who you are voting for this is one of the most important elections of our time and the country needs some TLC...so take the time and go vote....its your American right!!!

Monday, October 27, 2008

Monday morning

This past week/weekend have been kind of dull so I haven't had much to talk about!

All last week I have been really aggressive with trying to potty train Brodie. If someone took him for a walk he would go but he doesn't know yet to ask to go out. Plus since I can't really take him for walks myself when nobody is home, I bought a chain so I could hook him up to that. It took me 2 days of basically taking him out there every couple of hours before he got the hint to go potty...otherwise he just sat there and stared at me! So now when I put him on the chain he goes potty but only if I take him out, the next step is figuring out how to get him to tell us if he has to go!! Does anyone have any suggestions??

Friday night we went out to eat to celebrate our friend Karen getting a new job!! We went to a new restaurant that we have never been to called East Side Fire Pit Grill, I had probably one of the best steaks ever there....unfortunately I had an upset stomach so I took most of my dinner home and had it for breakfast the next day.

Saturday, my mom, Karen and I went to Edison mall to go shopping. I was trying to find an outfit to wear next weekend because my whole family is getting pictures done on Sunday. I was supposed to have Brodie in a doggy halloween costume contest but it rained all morning so we didn't go since it was supposed to be outside! Saturday night we went to KFC for dinner (I LOVE the mashed potatoes and cole slaw...yum!!) and then just went back to the house and played some games.

Sunday we had to be up early to go and see my nephew be baptized. He was so excited it was really cute. Then we went shopping again and I got a new pair of jeans from Express but I didn't find a shirt...I will probably just wear something I already have I own a TON of things that are black! Once we got home I started feeling kind of crappy, I was really congested so I did a breathing treatment and I felt a little better. I think I was just over tired from the weekend and running around. I am doing better now!

Today I have to run into work with my laptop...I need a program downloaded to it and it can not be done remotely I have to be plugged into the network. Other than that I will just be at home!

Sunday, October 19, 2008

The rest of the weekend....

Well Saturday night was WAY more fun than I thought it was going to be! We were hesitant on going because Danny was so tired but once we got there we had a blast and I couldn't get him to leave!! :) We got to hang out with a lot of our friends that we haven't seen in a really long time....friends and German beer.....good times!!

Me and my friend Tiffany!!


So we had another late night and then this morning we had to get up early and go to my parents house for brunch. It was nice hanging out with them but I am glad to be home!! I am going to bed early tonight...I have to go into work tomorrow and I don't want to be dead meat!

Saturday, October 18, 2008

Tired!

I am SO tired today!! I didn't get to bed till like 3 in the morning...not to mention the bottle of wine Karen and I shared while hanging out!! :)

We are supposed to go to Oktoberfest tonight with a group of our friends so that should be fun. I couldn't go last year because I didn't feel good. Danny has been helping his friend Jeff move all day so we will see if he even wants to still go out when he gets home.

If we do go out I am sure I will have pictures to post later.....until then, have a good evening!!

Friday, October 17, 2008

Check-Up

Never in the history of us going to Gainesville for a doctors appointment have we EVER been seen on time (I am talking we don't get seen for hours after our appt time) but Wednesday....we found out miracles really do happen! :)

My appointment was for 10:30 we got there at about 10:05 . This is how the rest of the appointment went...we were seated, checked out by the nurse, put in a room, talked to by the nurse in charge of there research program and then we saw the doctor. After all that we were in our car and driving home by 11:30!! Now that's what I call AMAZING!!

There are 3 doctors who are at Shands and Wednesday was the first time we met the third one, luckily we liked him a lot. He actually explained things to me so I could understand things instead of the other doctor who just makes me feel like I am a number. I like 2 out of 3 of the doctors so I guess that is good!

He listened to my lungs and he said they sounded clear, so that is good and although they can't tell you exactly where you are on the list he did say there were several people on the list way sicker than me and that have a higher score than I do.

So in order for me to get lungs they would have to see if they are a match for every single one of those people first before they see if its match for me. I have only been on the list for 5 months and the "average" wait they say is a year.

Its good news that I am remaining stable but at the same time I don't want to have to wait so long that I get sick and suddenly have a turn for the worst. The good news is that every time I go to a transplant appointment the doctors meet afterwards to discuss how you are doing and to re-evaluate your score (I didn't know this) so in 3 months when I go for my next appointment if I haven't already had my surgery they will check me out and see where I will be then.

All in all it was a good day and except the fact that I had to get up at 4:30 in the morning to get ready for my appointment and to be out of the house by 6:00 (I was extremely tired by bedtime that night) I was glad we went and I am glad that I am doing ok.

Monday, October 13, 2008

Weekly Plans

So today my cell phone rings and it was a phone number with a 352 are code (Gainesville) right away my heart starts beating a little faster and so I answer it and the voice on the other end says "Is this is Jennifer?" I said "Yes", the then I hear "I Jennifer, this is Becky from Dr. Baz's office I am just calling to confirm your appointment on Wednesday" I take a breath and say "Thanks...we will be there!!"

Holy Crap! All I kept thinking was this is it!! The day I really get the call I am probably gonna pass out or something!

So yes, my appointment is Wednesday at 10:30. Which means my mom will come to my house tomorrow when she gets off of work and spend the night that way bright and early Wednesday morning the three of us (mom, me & Danny) can get up and make the 4 hour drive to Gainesville for my visit.

I will be sure to let everyone know how my appointment goes. I am not scheduled for any test but my luck they will decide to throw some in there...they always do!

BTW.....did anybody else hear that Sarah Palin was found guilty by the Alaskan Panel who was investigating for a scandal now known as "Troopergate" of indeed abusing her authority and breaking state ethics law by trying to remove her former brother-in-law from his state trooper job? Now that Palin has been found guilty, not of a crime but of indeed abusing her authority and breaking state ethics law by trying to remove Wooten as state trooper, her reputation as a reformer and a champion for good government may be at stake....hmmm....is this what she considers being a Maverick?? Interesting...

Also, just in case anyone is sitting around and you want TRUTHFUL info about the candidates, what they are for/against and anything that has been said about them got to Factcheck.org they are a
nonpartisan, nonprofit "consumer advocate" for voters that aims to reduce the level of deception and confusion in U.S. politics!

I know I probably shouldn't talk politics on my blog but its the only place I feel I can say what's in my head without someone arguing with me about it or giving me a hard time because I have my own beliefs (my dad and my husband are two of the biggest ones and it kind of hurts my feelings.) I was undecided for awhile on who I should vote for (yes, I usually lean more left but I was still open till I watched the debates and learned about both candidates) but as I learn more and more about who John McCain and now Sarah Palin are as people (not even looking if I agree with there policies yet...don't get me started) I am becoming more clear.

When I found out about John and his first wife (I wrote a post earlier about this) and found how/why he left her it gave me a really upset hurt feeling inside and all I could think was that could be me...and I am tearing up thinking it right now...but what if Danny one day decided he didn't want to be with me because I have to many issues now and I don't have the same health as I did 3 years ago (I know he never would but this is what I feel for this woman who was in a crippling car accident that left her disfigured and then John McCain left her for a pretty/younger version.) It makes me sick to even think about him right now and to think there are still people out there today who won't vote for Obama JUST because he is black and believe me I know a few and its just sad.

Anyway....I just hope that people make a informed decision and that whatever happens helps this country begin to heal and become great! Don't forget to watch the FINAL debate on Wednesday night!!! I know I will!!!

Saturday, October 11, 2008

Saturday Morning

Well, obviously I haven't had to much going on or I would have written! Thursday I took Brodie to the vet and had him all checked out....he is fine of course but I now know my little peanut weighs 3.7 pounds! The vet did say once we got him neutered he would gain some weight so that's good.

Danny came home the other day with a pool table that some guy at his work was selling, its a nice pool table and he got it for a really good price the only problem is that is was SO big they had to take it apart to get it upstairs in the game room so now it is in pieces and has to be all leveled before you put the felt back on! oh well...not my problem! :)

We went to Outback last night for dinner....mmm...it's one of my favorite restaurants and I hadn't been there in FOREVER! Seared Ahi Tuna for appetizer and the Outback special for dinner PLUS like 3 rolls of bread w/honey butter....I was so full I was rolling out of there! :) But it was ALL worth it.

We then went home and watched Iron Man on dvd. It was a good movie and I will definitely see the sequel (I heard they were making a 2nd) but I am not sure it was all that everyone had hyped it up to be...I don't know....has anyone else seen it?? I still haven't seen the new Batman either we are WAY behind on movies for some reason we are usually better than this.

Today, Danny is working so I am will probably just hang out at home till he is done then I don't know what the plan is. Until next time here are some photos of Brodie from last night...he is to funny....

Laying on our bed....
He likes to lay on his back....
Mom....Stop taking my picture!!!
(I love this one!! lol)

Wednesday, October 8, 2008

AIG

Less than a week after the $85 million government bail-out, American International Group Inc spent over $440,000 on a conference at a California resort.

The bill from the St. Regis resort in Monarch Beach included:
  • $147,302 for banquets
  • $139,375 on rooms
  • $23,380 for spa services
  • $6,939 for golf
  • $5,016 at the Stonehill Tavern
  • $3,065 for in-room dining and the lobby lounge
  • $2,949 for gratuities
  • $1,901 at the Monarch Bayclub
  • and $1,488 at the resort’s Vogue Salon
It's just really sad that while average Americans are losing there jobs and homes company executives at AIG are getting a week long "conference" at one of the most exclusive resorts in the nation payed for with taxpayer money. REAL NICE!!

Wednesday Morning

It's been a few days since I wrote anything so here I am!

This weekend was kind of slow, Danny had to work ALL weekend. I tell you I have one of the hardest working husbands in America he works 6 days a week every week and then sometimes seven if his dad needs the work to get done (he works for his parents construction company.) The thing that makes me feel bad for him is he is usually the only one besides his dad to actually work on Sunday's (he has three brother's who work for the company who choose to stay home instead of helping.) I just worry about him cause I don't want him getting run down and he has such a HUGE feeling of responsibility to his family and work that he can't say no if they ask him to work and they know that. OK enough about that...

Monday, I went into work for a little bit. That was nice to get out of my house for awhile and see everybody but boy was I tired by the time I got home! I just can't wait till I can go back to work and actually be there all day like I used to.

Yesterday was a big day....I taught Brodie how to sit and shake!! It took me ALL day to get that little turd to sit he just did NOT want to budge but eventually he did and then the shake came pretty easy. I also made him an appointment for the Vet on Thursday to get him all checked out and to get him started on a heartworm/flea medicine like revolution or something.

Last night I also watched the Presidential Debates. I was getting so annoyed......all they both do is keep saying the same stuff over and over again no matter what the question is. If I have to here John Mccain say one more time that he is a "Maverick" I think I will throw something at my tv! :)

Speaking of John McCain, I just want to address something that has been bothering me. He likes to illustrate his moral fibre by referring to his five years as a prisoner-of-war in Vietnam and to demonstrate his commitment to family values but do any of you know the story of his first wife and why they got divorced? He married Carol McCain in 1965 she was a famous beauty and successful swimwear model and they had 3 kids. He then went off to Vietnam where he was a POW.

During this time his wife Carol was in a horrible car accident her pelvis and one arm were shattered by the impact and she suffered massive internal injuries. When Carol was discharged from hospital after six months of life-saving surgery, the prognosis was bleak. In order to save her legs, surgeons had been forced to cut away huge sections of shattered bone, taking with it her tall figure. She was confined to a wheelchair and was forced to use a catheter. Through sheer hard work, Carol learned to walk again. But when John McCain came home from Vietnam, she had gained a lot of weight and bore little resemblance to her old self. Today, she stands at just 5ft4in and still walks awkwardly, with a pronounced limp. Her body is held together by screws and metal plates.

Once he got home, as a was hero we began to run in more elevated circles and running around with girls (he has admitted to this.) In 1979 he met Cindy McCain over the next six months he pursued her, flying around the country to see her. Then he began to push to end his marriage. Five weeks after his divorce was final he married Cindy. His new father-in-law gave him a job and introduced him to local businessmen and political powerbrokers who would smooth his passage to Washington via the House of Representatives and Senate.

For a guy who makes such a big deal about his character it makes me kind of wonder what kind of character he has since he not only MULTIPLE times cheated on his wife but then left his crippled wife for a million dollar heiress 18 years his junior!

Doesn't sound to good to me but what do I know!!! :)

Saturday, October 4, 2008

My stomach hurts....

I had chinese food tonight and I think that might be the culprit! I was fine ALL day until I ate and then its been upset ever since. I took my enzymes and everything (I always do) so I know that isn't to blame.

We had some friends over tonight, we played Taboo and Scattegories. Little tip....don't let your husband be your partner in Taboo if he has had a few cocktails, you won't win!! :)

Other than that we haven't really been doing that much. The puppy is doing great, he doesn't cry at night anymore when we put him in his crate (until he's 100% potty trained I don't feel comfortable letting him sleep in the bed) and he has only had 2 accidents in the house. I think that is pretty good for his first week and a half.

I have an appointment in Gainesville October 15...not really looking forward to it but I never do. Its always a REALLY long day and we always have to wait FOREVER to see the doctor. We never get in at our appointment time, its always hours late! Oh well.

Sunday, September 28, 2008

My Little Pumpkin!

So today Danny and I went to Target to get a few things and while I was there I just couldn't resist getting Brodie a Halloween costume.....Danny thinks I am crazy but I think he is adorable!


Nothing else has really been going on. My little brother turned 21 while I was in the hospital so he came over and spent the weekend with us and we went out Saturday night....we had a lot of fun but boy was I tired....didn't go to bed till 3:30am!! It's ok, as long as he had a good time....Happy Birthday Josh! :)

Thursday, September 25, 2008

WE GOT A PUPPY!!!!

His name is Brodie and he is a Teacup Yorkie. He is 8 months old and he weighs 4 pounds! My mom and dad got him for me and I love him.

I got him last night and I was a little worried about him because he didn't eat or drink anything all day, so finally at like 8:00pm I gated him in the kitchen so he couldn't follow me in the living room and sit on me and when he thought I wasn't looking he ate his food! I was SO happy.

Last night, when we put him in the crate he cried for like an hour but when he realized we weren't letting him out he went to sleep. I am sure he will cry tonight too but he will eventually get used to it.

Here he is.....



Im home!

I got home Tuesday. I am still getting acclimated to being home, I get tired real easy and my legs have been kind of sore. The last couple of days I have had to run a lot of errands and since I have been in the hospital for 3 weeks I am still a little weak....even with the physical therapy that I did while I was there.

I also have a surprise but I don't want to tell you yet until tonight when I can post some pictures.....so look for a post later on!!!

Sunday, September 21, 2008

HOORAY FOR MIAMI!!

The Miami Dolphins beat the New England Patriots 38-13!!! It was a great game and I am SO happy they won.

As for me...I am still in the hospital. I am scheduled to go home Tuesday which I am totally ready for. I am going to be done with IV abx but will continue to be on Cipro (a pill) for another week.

I have had a super boring weekend with not much to do. My mom visited yesterday for awhile and Danny came today but once they leave and I am here alone time seems to stand still!

Luckily, tomorrow is Monday and I have daytime tv to look forward to!

Wednesday, September 17, 2008

So far, So good...

Its only 10:30 and already I am having a GREAT day!

I am OFF oxygen (YEAH!) and I got weighed this morning and since I have been here I have gained 8.14 pounds!!

Hopefully my day continues to go well and I stay off oxygen....

Tuesday, September 16, 2008

Looks like im not going anywhere!

Well to day is day 13 and I thought I would be able to go home today since I had a transplant appointment tomorrow, but I had to call and cancel it because I am still in the hospital.

My steroids are being continued from 5 days to 7 and while I feel like I am opening up and I am definitely breathing easier...I am STILL on one liter of oxygen.

My doc has stopped the mucomyst for now because it was making me feel more constricted and not doing any good.

The last couple of weeks I was causing myself A LOT of extra stress and anxiety due to a couple different situations (plus with the steroids my anxiety was like double!!) and that was also causing me to not get good sleep and when my anxiety kicks in my chest tightens up even more. SO a few days ago I was prescribed Ambien for sleep and Klonopin for the anxiety just while I am on the steroids and let me tell you....it has helped tremendously! I feel a lot calmer and its the first time in 2 weeks I have slept through the night.

My doctor has also added cipro to the abx that I am taking. Its just a pill so its not that big of a deal. Did I also mention that I have been doing physical therapy while I am here?? Since I was working out at home I didn't want to be in the hospital and loose any of the strength that I have worked up so I asked my doc to set it up. I now have a little exercise bike and work out bands in my room that I do. I really enjoy the bike and have also thought of possibly getting on for home!

So all in all I feel like I am on the mend...I am just ready to go home!

Saturday, September 13, 2008

Quick Update

Yesterday, because my chest has been feeling tight and my doctor could hear wheezing he started me on 6omg of Solu-Medrol for 5 days to try and help open me up.

I already feel a little better so hopefully I can get off the oxygen. I am at one liter and haven't been able to go any lower.

My doctor isn't on call this weekend so I am having to deal with the guy I don't like. Oh well. He wasn't to bad today and my doctors back on Monday so it isn't horrible.

I am hoping to go home Tuesday. I have a transplant check up in Gainesville Wednesday, September 17th so I kind of have to be out. I just need to get off the oxygen!!!

Thursday, September 11, 2008

Bored....

I haven't felt that great today.

I had an issue last night when I was having my medi-port accessed. It made a weird popping noise and the one nurse who was in here made the comment that I probably needed to have surgery and get a new one....now me being the anxiety queen that I am immediately got upset which then through me into a bronco spasm and I felt like I couldn't breath. My doctor luckily was here and he told me that my port was fine (it flushes and draws back blood great) and that it was probably just scar tissue and that I needed to calm down. I get upset very easily and sometimes I cause more problems for myself because of that!

I just think that the nurse shouldn't have just jump to that conclusion so fast without thinking of any other possibility....I mean she jumped right to my port was crap and I need a new one. Of course I would get upset...GEEZ!

So this morning when I woke up I was feeling ok...but all day today my sats have been on the low side and my chest has felt tight and of course because I was wanting to see my doc tonight to see what he thought he didn't make a second round so I have to wait until the morning.

Good news for Sara...she finished her physical therapy and has been released to go home!! Her and Mike will start there road trip home tomorrow. My thoughts are with you guys as you start your journey home...drive safe!

Tuesday, September 9, 2008

More hospital problems!

So, last night I think I had the biggest OOPS ever in the history of coming to this hospital!

I have CF related diabetes that started last year and when I am home and not sick in the hospital it is very well controlled. When I am home the only insulin I usually get is 10 units of a 24 hour insulin called lantus. I check my sugars at meal time and if they are over 120 I use more insulin to cover for the food I eat (luckily when at home I usually don't need to do this because they are never over.) When I am sick and in the hospital my blood sugars usually get crazy and I require more insulin through out the day than normal.

Last night, my nurse came in to give me all my pm meds, check my blood sugar, give me my 10 units of lantus, and hook up my lipids that I told you I get. Around 10:45pm she comes back in apologizing up and down that she is so sorry but she looked at the med sheet wrong and she had accidentally given me 20 units of lantus! She said that she had already called the doctor and he said to stop the lipids and begin running fluids (basically sugar water) so that my blood sugar wouldn't bottom out during the night while I am sleeping and oh yeah....she is going to have to check my blood sugar every hour through out the night! Needless to say I didn't sleep at all!! He also stopped ALL insulin today and the lantus I am supposed to get tonight because my sugars have been low all day. He also said as long as my sugars are above 80 before I go to bed tonight they only need to be checked every 4 hours tonight and then tomorrow we can go back to my normal schedule.

Now, I partly blame myself for this happening I usually pay good attention to everything the nurses do and the ONE time I just have faith that I don't have to hold there hand...look what happens! And I know they are supposed to get a "second" pair of eyes to check they have the right amount in the syringe so what happened? Did she just skip that step or did the second person just look without actually knowing what she was looking at?? Who knows...

I don't want you to think that I am in a hospital full of idiots cause thats not the case there are SEVERAL nurses here that I am personally friends with and they are great nurses! (and I am sure they are reading this and they know who they are!!) :)

There are just a few that you would swear got there nursing license like yesterday and you wonder how they ever graduated.....and I am not kidding! Oh well, I guess this just means I am gonna have to be a pain in everyones you know what to make sure I get the right meds.

Hopefully tonight I can get some rest and I won't be a zombie tomorrow...I need to get some work done!!

Sunday, September 7, 2008

Just a little rant...

The last couple of days I have been getting annoyed and today it finally came to a head!

Usually while I am in the hospital my doctor has me hooked up to lipids at night so I can gain some extra weight. It's supposed to run for 10 hours at night while I am sleeping.

Seems simple....but not only do I have the lipids that need to run but I also have 2 abx, one running every 8 and the other running every 6 hours. The first night the lipids were hung the nurse said she had talked to the pharmacists and they told her the abx and lipids were compatible so they could be run at the same time. Great.

Then, the next night the nurse (a different one) came in and said she talked to another pharmacists and they said absolutely no way are they compatible and when my abx need to be run the lipids need to be stopped.

Well between the lipids the abx and nurses being slow I was hooked up from 10:30pm LAST night until 3:30 this afternoon with no break in between.

Finally, I said to my doctor that they needed to figure out if the abx are compatible or not because it is ridiculous that the same pharmacy gives a different answer everyday. I mean if its not compatible then what does that mean for the days they did run together...did I not get the all the med? Will my port be affected? I mean WTF people??!! This happens all the time and I am tired of it!!

It turns out that it hasn't been "tested" yet so they don't know if its compatible so my doc just said to run them separate to be safe. So now all I need to do is hope the nurses pay attention to there schedule so I am not hooked up to the wall the WHOLE time. The girl tonight came in and went over a "schedule" with me (cause she knew I was unhappy about being hooked up all day) to hopefully have me unhooked by like 9:00am so we will see how that goes.

To answer a question about the mucomyst....it doesn't really taste bad but the smell isn't great. It kind of reminds me of well water which if you don't know what that smells like its kind of like rotten eggs. My doctor and the RT were making me think I was going to hate it and honestly it isn't to bad. I absolutely HATE 7% saline so I welcome any alternative and so far its working fine.

Also, today was the first game of the season for my Miami Dolphins and unfortunately Brett Favre and the NY Jets won the game. Its ok though we can only go up from where we were last season so lets just keep thinking good thoughts!

Saturday, September 6, 2008

No Fevers!!

Well, yesterday was all day with no fevers...Yeah!!

My cough is already getting better even after only 3 full days of abx. Without going into to much detail so I don't gross people out...a lot of the stuff that I have been brining up has contained hard pieces in it which is most likely part of a mucous plug which was probably causing the pain/discomfort I was having in my chest for a few days earlier this week. So its definitely good news that I am getting all the junk up and out.

My doctor just started me on a new med yesterday and I think it is really helping. Its called mucomyst and it is an aerosol med that is added to the duoneb nebulizer that I do twice a day (4 times in the hospital.) Its to replace the 7% hypertonic saline (that I HATE) that usually comes after my duoneb.

I have hated the 7% for years because when I do the breathing treatment I cough my brains out and get horrible bronchospasms to where I can't breath.....and I could be wrong (not likely) but I don't think that is the point of the medicine! I think its supposed to help you feel better and that isn't what it does for me.

I have my friend Felicia as my nurse today so I know I won't get forgotten about like yesterdays intern nurse. Yesterday I would get hooked up to an abx that only runs for 30 minutes and like 3 hours later the lady would come and unhook me! Now I know I don't have a hot date or anything and its not like I leave my room but it nice to be able to get up and use the rest room without carrying an IV pole there EVERY time!! Its to bad they can't just leave the stuff in here and I would do it myself!!

OK I am done now.... :)

Thursday, September 4, 2008

I am in the hospital!!

I got here Tuesday night....but I just got my laptop brought to me today so that's why I haven't been able to post anything!!

So yesterday , I had an ultrasound of my stomach and the good news is I don't have gall stones....but I do have gall bladder sludge! How horrible does that sound? The good news is I don't have to have surgery and the IV abx that I am on right now should do the trick.

Of course, since I have been here I had my normal 2 days of fevers. Yesterday it got up to 103 and today it only got to 101.9. Hopefully tomorrow I won't have any at all!

I was feeling really congested today but its just because of all the breathing treatments I have been getting so all the crap in my chest is moving up and out. I usually feel worse before I feel better, again hopefully tomorrow I have a better day!

Anyway..im just happy I have the internet!! I have my work laptop that I was able to use to have work keep me occupied but I can't cruise the internet on that one so now I have my personal one that I can use when I am up all night not being able to sleep! :)

Friday, August 29, 2008

General Hospital: Night Shift

So, anyone who knows me knows I LOVE me some General Hospital! But what some people don't know is that General Hospital now has a prime-time spin off show called General Hospital: Nightshift.

It has some of the same characters from the daytime show and some new characters and it mostly centers around the hospital at night and the different cases that come into the hospital and the drama between doctors and nurses, etc. whereas GH during the day isn't always at the hospital. Also, unlike the daytime show which airs everyday and never ends and doesn't have repeats. Nightshift is once a week on Tuesday nights and has 13 episode seasons that air on soapnet. The shows also match up with each other so sometimes they will refer to the other show and vice versa to have story lines coincide.

Anyway my point is (I promise I have one) I watch both shows but we don't have soapnet here so I can't watch it on Tuesday nights I have to wait until someone post the show on youtube and then I watch it. So this morning as I was doing my morning treatments/vest I watched the show from this week....and guess what one of the main storylines was about?? That's right CF! Let me tell you I thought it was a joke, I really would have thought they would have done a little more research than they did before airing a story like that. Oh well.

If anyone is interested in checking it out, here it is. They can't upload the whole show at once so you have to watch it in 6 different clips but that isn't to bad. If you watch it let me know what you think!

Jen

Wednesday, August 27, 2008

My Belly Hurts!!!

Well not much to report this week....Monday I worked out, that was good. But other than that all I have been doing is working.

The last three days though I am ok all day (because I am just sitting in my bed working on the laptop) and then when 4:00 rolls around and I get up and moving my stomach starts hurting, and it isn't just a plain old run of the mill stomach ache its a stabbing, double over in pain only helps if you are laying on your tummy kind of pain! When I was 20 I had my appendix taken out so I know that isn't it but its hurting right in that general area. I know it isn't cramps either because thats already passed. Any suggestions??

It really hurts but I feel dumb calling my DR. or going to the ER because my stomach hurts! Another day of this and I am not sure if I can take it...I am gonna borrow my mother-in-laws heating pad tomorrow if it happens again. I just thought of it now and its to late to go next door and get it for tonight (its 10:45pm) so I will just have to deal with ibuprofen . I am hoping tomorrow will be good, my work is having a training class at 5:15 and I really want to go so think good thoughts that I am up for it.

Oh BTW...last night we rented What Happens in Vegas with Ashton Kutcher and Cameron Diaz. VERY cute movie...a little predictable, they hate each other then fall in love...yada, yada...but still a good movie and you should check it out! Also, 4th season of Entourage is out on DVD and we are already on the 3rd disk...awesome show check it out if you haven't already (it airs on HBO) we love it.

Well, I guess that's it...Friday I work out again and hopefully we will be seeing my parents on Saturday. If anything really exciting happens I promise to let you guys know! Good Night.

Jen

Thursday, August 21, 2008

Couple pics from Saturday night!!

I only have a couple from my camera that are good the others are of people singing karaoke so they aren't that great.

Here is one of me and Danny at Chilli's...two for one baby!!



This one is of me and my two cousins...the one with the long hair lives here by me and the other is my cousin Maria who was here visiting from NY....I miss her already!!


CF and Dating

The last couple of days I have been thinking about this topic a lot. Now I know I don't have this particular problem anymore since I am luckily married, but truth be told...I never had a problem with these two things.

I have read a few blogs lately, both girls, who write about how hard it is to date and have CF...how guys find it difficult to deal with there health or don't want to get serious because of there health and while I read both the blogs on a regular basis and wish that some day they both find somebody as awesome as my Danny (if that's possible!!) I can't completely relate to what they are going through.

Before I met my husband, I had a handful of serious boyfriends starting all the way back to my high school boyfriend when I was 17 and not to mention the guys that weren't that serious in between my CF was never even a main topic it was just something I had to deal with....some of the "not so serious" ones in between didn't even know anything was different. I guess maybe because I wasn't really that sick when I was a teenager/ young adult it was different for me I don't know.

I am not sure why I am even writing this tonight....luckily I didn't have to go through anything like that and to put the cherry on top I also found the most wonderful man in the world who loves me, all of me, CF and all. I just hope others out there find their special someone too.

Wednesday, August 20, 2008

Sad...

My cousin left tonight....it sucks, the next time I will probably see her will be after my surgery when she comes to help take care of me (she is a nurse practitioner.)

Other than that, I have NOTHING going on. I swear my life is so in a rut. I wake up exactly the same time everyday (excluding weekends when I usually sleep in an extra hour) work for exactly the same amount of hours, cook dinner, go to bed and start it over the next day. I don't think it would be so bad if I could actually GO to work but working from home is SO lonely!! The weekends are usually a little better we see a few friends go to dinner one night but nothing spectacular.

I have been looking for a puppy to get so at least I have a pal to play with during the day but I haven't found one yet. I just need to hurry up and get my transplant so I can get on with my life and actually feel like a productive member of society!!

ok....enough sorrow for one evening!! I am off to watch General Hospital. :)

Tuesday, August 19, 2008

Lazy Day...

Well thanks to the Tropical Storm everyone had today off and it wasn't even that big of a deal! Last night when I went to bed it was raining and windy and it stayed that way pretty much all night and this morning. The power had gone off a few times but other than that it wasn't really anything.

I woke up at 9 this morning to do my therapy and breathing treatments and then because it was rainy and dark I went back to sleep until 11:30!! Talk about lazy morning....the whole house was like that. Unfortunately, my cousin has to go home tomorrow night so we are just going to be hanging out the rest of the day.

I was supposed to have my work out session today but obviously I missed that so I am going to have to make that up. Oh well.

Monday, August 18, 2008

Looks like a hurricane!!

Well...looks like we will be having a category 1 hurricane tomorrow morning! It is only a Tropical Storm right now but it is predicted to strengthen and make land fall right here in SW Florida.

We aren't to worried, I have lived here my whole life and have been through every storm that has come through here as far back as Hurricane Andrew in 1992. Plus, my husband just remodeled our house and we have hurricane impact windows and doors so we are completely safe. I will let everyone know how it goes tonight and into the morning.

On the plus side my cousin is still here from NY and I have LOVED spending time with her! Her flight to go home is Wednesday night so depending on the storm she might be here a few more days! I wouldn't mind that one bit. ;)

We had a girls night out dinner and a movie Friday night. We saw Sisterhood of the traveling pants 2, it was very cute. Saturday night we went out to a karaoke bar and had a blast...I will post pictures later....it was hilarious.

Anyway...don't worry about the storm we plan on just snuggling on the couches and watching a good movie. Talk to you all soon!

Jen

Wednesday, August 13, 2008

Nothing Much....

Not much has been going on here so I haven't had anything really to talk about! I have had work-out twice this week and each time I have gotten a little bit better which is a great thing.

Today when I worked out, not only did I get through all of my exercises twice (the other day I was tired after going through all of them once) but I went through them quicker and with less recovery time after each (meaning I wasn't AS out of breath after each move as I was on previous days!) So I am kinda proud of myself that I am improving a little bit each time and hopefully it continues.

On a side note.....my FAVORITE cousin in the whole world is coming to visit me! She lives in NY and will be here Friday morning for 5 days!!! YEAH!!!! I am super excited and can't wait to see her. It will be a year in September since I was in her wedding and thats when I saw her last. She is fabulous and everyone loves her so I am sure I will have pictures to put up from this weekend.

Anyway....I got to get some work done so I will post more later.

p.s. I go to the doctors tomorrow to get my port flushed so I will let you know if anything happens there too!

Wednesday, August 6, 2008

Today was a shocker...

So yesterday afternoon as I am cuddled on my couch with a good Sex and the City episode I get a phone call....It was from a lady who my mom has been talking to about possibly getting me to start working out and getting ready for when I get my transplant call.

**We have been working on this for awhile since we know the stronger you are going in for transplant the more likely you are to have a quicker recovery or at least be better off than somebody who didn't move at all before there surgery. But there is no way I have the energy to go to a gym 2-3 times per week to work out so we have been looking for places that will come to me...that way if I need my oxygen I am at home and will feel comfortable enough to use it.**

So anyway back to yesterday...I get a call from a very nice lady (now I didn't know we had actually found a place and that they were going to call me) and she wanted to set up an appointment to come and "meet" me. So we set it up for Thursday afternoon and I went back to my regularly scheduled programming!

Today, I got a call from Stacie (work out lady) and she had a cancellation and wanted to know if she could come today instead of tomorrow, which was fine because I was just at home working and I didn't have any plans of leaving.

So at 12:00 and to my surprise I answer the door to a lady with a work out bag and weights! My first reaction was..."we aren't actually gonna work out today are we??!!" I thought we were just gonna talk and maybe sign a few papers...she had other plans!

So today was my first "mini" session. I did a warm-up and only one round of all the exercises. She is coming monday and wednesday of next week so hopefully I do better!

At first, after she left I felt kind of jello-e (you know that I just worked out for the first time in a LONG time feeling) but I have to say I actually felt really good for the rest of the day so this might be a good thing for me.....we will see after next week...or worse tomorrow when we see just how bad my body will reject any kind of manual labor!! :)

Saturday, August 2, 2008

Saturday...

So today after I woke up, Karen and I went to the beach. We were there for 3 hours before I had to go home, it was very hot today. We heard later that there might have been Red Tide...but we aren't sure.

After the beach I came home and took a nap until Danny got home from work. I always need a nap when getting home from the beach!!

Once Danny got home we took showers and then got ready to go out to dinner with some friends. We went to Carrabbas it was the first time going to the new one in our town and I wasn't impressed. They crammed like a million people in such a small place...it wasn't very big at all and it was really warm in there! I don't think we will be going back.

After dinner, we went over to our friend's house for a little bit where the guys played Guitar Hero III. It's a pretty cool game but they only have one list of songs to play so after awhile you get tired of hearing the same songs over and over again.

Anyway...we are home now and I am just doing my breathing treatments and then I am hitting the hay!! Good Night!

Friday, August 1, 2008

End of the week

Well, today is Friday and its been a pretty uneventful week. I did end up catching Danny's cold and I felt crappy for a few days but I am feeling better now.

Wednesday, I had to go into work for a couple of hours because my laptop that I use for work wasn't working but now its fine. I also gave the HR department my brand new social security card!

Next week I have to go to my doctor's office and have my port flushed. When I am not on IV abx, my port has to be flushed once a month with some saline and heparin to make sure that it works properly.

I was either 20 or 21 when I FINALLY let my doctors talk me into getting a medi-port and I only did it because there was a new doctor who put it somewhere other than where most doctors put them. Most people have ports placed on there chest and since I was young and lived in FL where bathing suits and tank tops are staple clothing items I refused to get one if it was where people could see them. I am thin and if I were to have a port on my upper chest it would have been obvious to see.

When I went in for my surgery to have my port placed, the doctor had me wear my bra and right where my bra strap went around my chest to clasp in the back (on the side under my left arm) he made a tiny little circle under the strap and thats where he placed my medi-port! When it is not accessed you would never know its there because it is always under a bra or bathing suit plus he used one of the smallest ones they have so even if my shirt is off unless I am laying on my side you can't really see it either unless you knew it was there.

Since I have been going in the hospital a lot more lately I am just glad that I made the decision along time ago to have a medi port. There is no way my veins would be able to handle all the abx I have had to have the last year and half.

I am not sure if once I have my transplant if they are going to take it out or leave it in. I wouldn't mind leaving it in but I guess it all depends on what the doctors want to do. Anyway....I think I am going to go downstairs and make some lunch!!

Have a great day!!

Monday, July 28, 2008

Just another Monday....

Hello All!! I hope everyone had a great weekend....mine was pretty good.

Friday night we all decided to stay in. We ordered Chinese food and rented a movie, Definitely Maybe. It has Ryan Reynolds in it and that little girl Abigail Breslin. It was a cute movie and even Danny liked it so it wasn't a TOTAL chick flick!

Saturday, Danny woke up feeling a little under the weather (for him this a big deal he hardly ever gets sick...maybe once a year) so we just took it easy and lounged around. Saturday night me, Danny, Curt, Karen and Tony all met my family out for dinner for my little sister's birthday. After that we went to Chilli's were a couple of our friends met us all there (everyone but my family) to have a few drinks. Once we were done there we all decided to go back to our house to play battle of the sexes...it was so much fun but half way through the game 3 other couples that we are friends with came over so then it really got hilarious!!

Sunday....we got up and all went to the Humane Society. Curt and Karen are HUGE animal lovers and like to just go see the animals. I was hoping to maybe find a dog for me but all the dogs there were big and loud and I am looking for something small and compact so I can carry and that doesn't shed! :)

Today, I didn't do anything. My laptop for work isn't working so I really couldn't work. BUT I did watch more episodes of SEX and the City (I am just now watching all the seasons on DVD I have never watched it before) I am on season five and I can't turn it off!! I have to admit I was really upset when Carrie broke up with Aiden. I knew they would break up eventually because I know she marries BIG in the movie (even though I haven't seen that either) but it was still disappointing he was sweet and very good looking! Oh well....one more season to go and then I can watch the movie!

Oh yeah...on a side note. All weekend I felt great, but today I was congested all day and just felt crappy and this evening when I was cooking dinner I felt like I could have had a low grade temp but then it went away. I just hope I am not catching what Danny had/still has a little. I haven't been letting him kiss me cause I didn't want to get sick but maybe that wasn't enough!! I will let you know how I feel tomorrow or the next day depending on if there is anything else to report.

Good Night!!

Monday, July 21, 2008

Hi Everyone!!

I know I haven't written in a few days but when I am not sick it seems I don't have much to report...which is a good thing!! :)

Some friends of ours have the same birthday (Sunday) so Saturday night we all went out to celebrate. It is a dance club here in Cape Coral another friend of ours works there so we all got VIP. It also has a sushi bar there which is good because not only do I love sushi (and I eat it as much as I can now since post tx I can't have it at all!!) but because they serve sushi there you can't smoke inside....which is perfect for me!! I have to admit I did have a very good time, its the first time in a long time we stayed all the way until the club closed because I felt good enough to!

Yummy Cosmo's!!!

Me & Danny!!!

Today, I went into work for a little bit. It was nice to get out of my house for awhile and see everyone. I got my anniversary presents...5 years!! I got a little charm necklace with the company name on it and a plaque....now all I need is an office to hang it up in!! I did feel pretty tired when I got home so I fell asleep for like 1/2 an hour.

Anyway....I am just catching up on my daytime tv I missed today while I was gone so I am gonna go....TTYL

Wednesday, July 16, 2008

My Trip

I don't really have any news to report from the last couple of days. It has been raining all day everyday so I haven't really wanted to do anything but sit in my pj's!!

Oh Yeah...I did do one thing yesterday...I went down to the Social Security office and finally filled out the application to change my last name on my SS card! It only took me a year but I finally did it!!

I thought I would show you a couple pictures from our trip this weekend...I hope you like them!


Danny and I on the bus to Universal..


My mom & dad


Me, my 2 brothers & my little sister



me, Danny & Shrek!!


me & Danny

Monday, July 14, 2008

I am home!!

I got home last night and we had a great time!

Danny and I got up SUPER early Saturday morning. I did my vest and breathing treatments while Danny packed up the car since we were staying the night in Orlando. Once I was done I got dressed and then we were in the car and driving by 6:15...not bad!!

We got to the hotel by 9:00 and of course my family was late so we sat around and waited for them to show up. Once they got there we ate breakfast and were on the bus to Islands of Adventure by 11:00. My mom thought it would be a good idea to get a wheel chair so that I could save my energy....I protested but in the end decided to get one (I have NEVER had to do that before and I was kind of upset about it) and I must say it was a good idea. With the help of the wheelchair I was able to go all day without using my 02 while at the park and I don't think I would have been able to do that if I walked the whole time. We had dinner at the Bubba Gump Shrimp Company in City Walk and then headed back to the hotel at around 10:00pm so I had a VERY long day and was really tired.

Sunday we got up early and went and spent the day at Universal Studios. It was good but I have always liked Islands of Adventure better. We stayed till 7:00 but then it was time to head home (my parents are staying all week we just went for the 2 days.)

All in all it was a good weekend...it was nice to get out of town but hopefully the next time I go to a theme park it will be with new lungs and I can once again WALK around without getting tired!!!

On a side note...I was thrilled to get home so I could check on Sara and of course she is doing great. She is amazing everyone by being up and walking the entire floor without 02 in such a short time! Way to go!! Make sure to check out her blog for up to date info on her and to drop a line of encouragement.....

Wednesday, July 9, 2008

I am done with my ABX!!!

Well, today was my last day on abx. One of my nurse friends came over at 8:00pm after she got off of work to de-access my medi-port. It feels SO nice to have that dressing tape off my skin. It gets very irritated by the end.

I have also been checking Sara's blog pretty regularly today and she seems to be doing phenomenal besides the obvious pain of a MAJOR surgery. I am so very happy for her and her husband that she got the call and she is doing so well. Please remember to keep her and her family in your thoughts and prayers as she continues to get stronger.

Thanks!

Tuesday, July 8, 2008

Sara got her lungs!!

Sara is a girl I have met through blogging who also has CF. She had been waiting on the transplant list for over 2 years at UCLA and today she got her lungs!!

I would like everyone to keep her in your thoughts and maybe even leave her an encouraging comment on her blog. Her husband is updating it to let everyone know how she is doing!! I am SO excited for her and can't wait till I can talk to her about the whole thing!

CONGRATULATIONS SARA!!!

Sunday, July 6, 2008

Weekend Update....

Well, I have nothing to really update about my health. I am done with prednisone and so far (keep fingers crossed) I am still feeling good. I am still doing 2 abx every 8 hours which will be done Wednesday...thank goodness! I will be glad to be on a normal sleep schedule.

We had a pretty busy weekend. Friday (4th of July) we went over to a friends house for a BBQ and fire works. Saturday after my abx were done in the morning I went downstairs and made a dessert to take to another BBQ that we were going to with my parents and then today (Sunday) we went over to my mother-in-laws for a BBQ! I like visiting with people...but sometimes I just want to stay home!! :).

Oh yeah....tonight some friends came over and we watched a movie.....No Country for Old Men. Weird movie. I have know idea how it won 4 Oscars. Has anyone else seen it?? I would be interested to know what you thought.

Anyway.....im doing my abx right now and so I am gonna turn the good old tivo on and watch General Hospital thats recorded!! (I know don't laugh)

Friday, July 4, 2008

Happy 4th of July!!

I know I haven't written in a day or so I just have been feeling so good that I had A LOT going on!!

Wednesday, I woke up at my normal time to hook up my abx. I started my vest right away (usually I hook my self up..turn the alarm on to go off in a 1/2 hour switch abx...hit the alarm again...you get the picture) got dressed and ready and was on my way to a little retail therapy with Karen (Danny's friends new wife who are staying with us) at about 10:30. We went to this HUGE outdoor mall called Coconut Point. It has every store you can imagine...its great!

We went to about 2 or 3 shops got a few things for my house that now my husband has to hang up for me :) Had lunch at Panera Bread and then Karen got her nails done and I got my toes done! We got back to the house at around 4:30 and let me tell you we were both wiped out!! I think thats the most walking I have done in a long time. When we got home I rested for a little bit, started my abx and then made spaghetti for dinner. Then at around 7:30-8:00, 2 of my favorite nurses from the hospital came to the house to de-access and then re-access my medi-port since I need another week of abx. I love them for this because otherwise I would have had to go to the hospital waste a whole bunch of time and energy...yada..yada..yada. So when they got off work they made a special trip to help me!!

Today was a pretty boring day compared to yesterday. I worked for awhile this morning, it was really crappy out this afternoon it rained VERY hard outside! Danny came home from work early today...him and a couple of his friends went to Tampa tonight to see "Crue Fest." Let me just state that my husband is probably thee biggest Motley Crue fan on earth...he looked like a little kid getting ready this afternoon...it was kinda cute! They are staying with a friend in Tampa tonight and then heading home tomorrow morning. Thank goodness I have a house full of people or I would be having a cow right now!! :) We did watch a couple of movies tonight, Fools gold and Bucket List. Fools gold was good...how to lose a guy in 10 days with the same actors...Matthew Mcconaughey and Kate Hudson...was better, and Bucket List was a tear-jerker in the end!

Tomorrow, we are going to some friends of ours for a bbq and then Saturday we are going to a party with my parents. Should be a good weekend. I hope everyone has a great and safe July 4th!! :)

Wednesday, July 2, 2008

Doctor News....

Well I called Dr. Faverio's office yesterday to find out if I was to discontinue my abx today OR if he wanted another week.......well he wants another week!!

The only thing I am bummed about is that if we go on the boat on Friday for the 4th of July I wont be able to wear my swim suit :(

Its ok though because I am feeling WAY better and hopefully another week will make me feel good enough to go to Universal Studios/Islands of Adventure in a couple of weeks! So keep your fingers crossed that I will have enough energy to walk around a park!!

I am going out for a little bit today so tonight I will let you all know how I am feeling!!

Tuesday, July 1, 2008

So there is good news and just ok news...which first??

OK the good news. Yesterday I had a totally wonderful day. I did a little bit of work in the morning then I had to go downstairs because I promised Danny I would make him his favorite pie so that he would have it for after dinner.

THEN, when I was done making the pie I was still feeling good so I even cleaned the whole kitchen...im talking move things around to clean the counters, wash and dry the dishes everything. I haven't felt that good in a while so I was happy to do it! I even peeled potatoes and put them in water so they were already done for when I started dinner. Man am I efficient! :)

The just ok news is that this morning I am SO tired. This staying up until 1:45 to do my iv abx and then having to get up at 8 to start them all over again is really wearing me out!! I still don't know if i am going to be done on Wednesday or if I am gonna do another week...I will keep you updated! All I know is that when I am done with my vest I think I am going back to sleep for a little bit! Have a good morning!!

Monday, June 30, 2008

Delaney's 1st birthday!!!

Birthday Girl!!



Her little baby cake...


Looking at people like "why are you singing to me??"


Should I....


Maybe just a little.....


Digging in....


she is saying "uh-oh"


what did I do???


opening presents with her daddy...


hanging with uncle Danny...



Most of the times I don't like kids parties (especially since we don't have any) but today was a good day and a good party!! Good Job Steph!! :)