A New Year

Hello World!

So it will soon be 2011! Yes, hopefully a good year because the last 2... not wonderful overall. Of course Every year has its ups and downs I just think I've had a few more downs than ups.

2009
Jan: Rang in the New Year with Thibaut. A guy I had been dating that could of really gone somewhere... (Positive, believe it or not).
Feb: My 23rd Birthday and Tucker was my Birthday gift! (Definetly a Positive)
March: Hospitalized and placed on 24 hour oxygen, indefinetly (Negative)
April: The Guy from New Years, Thibaut, Moved back to Australia. Where he is from. Broken heart. (Negative)
May: Finally Graduated college!! (BIG Positive)
June: My Dad is diagnosed with Stage 4 terminal cancer. (GIGANTIC Negative)
July: Hospitalized again because of Cystic Fibrosis (Negative)
August: Uneventful. (Neutral)
September: Losing too much weight and sick again, Hospital for a Medi-port placement and Feeding tube placement. (Sucky, Negative)
October: Developed Pneumonia, actually at the end of Sept. Sent to the ICU and put on a ventilator. My family was told the prognosis didn't look good and to expect the worst. I have no memory of this month at all. (NEGATIVE!)
November: Thanks to my Family and Doctors for not giving up and doing everything possible, I come back to life! Have to relearn how to eat and walk. Regain bladder control and build some muscle. Get to go home mid-month (Positive!)
December: Started Pulmonary Rehab/Physical Therapy. Began my Transplant work up. Also Tucker's 1st Birthday! (Positive)

2010
Jan: New Year's wasn't great but could of been worse. Still in recovery from Sept '09 (Neutral)
Feb: My 24th Birthday! Almost didn't get to see this. (Huge Postive!)
March: Uneventful (More Neutral)
April: Finish the Transplant work-up and begin the wait to hear if I qualify to be on the Transplant list. Stressful! (Positive for the work-up being done and Negative for the waiting)
May: Vacation! Much needed. Also heard on May 20th I was officially on the Transplant List (Positive!)
June: Hspitalized for a CF excerbation. (Negative)
July: 7/4 is the anniversary date of when the whole family was told of my Dads cancer. Kind of a bummer day. (Semi-negative)
August: Very Sick, Throwing up daily and losing weight at a rapid speed. (Negative!)
September: Hospitalized for the mystery infection. (Negative)
October: Started Pulmonary Rehab again (Positive although I dislike it)
Novemeber: Uneventful except for Thanksgiving. (Positive)
December: Hospitalized once again for a damn CF excerbation! (Negative!)

So that makes 10 Positives, 3 Neutrals, and 12 Negatives! I think My life needs some positive than that. so 2011, bring it on! I am ready to have 12 positives and 0 negatives for 2011!! So with 20 or so minutes to midnight, I'm going to gather my thoughts and plan my New Year's Wish! I'll chat with you guys next year, haha!

Breathe Easy!

Not What I Planned...

Hello World!

So today went NOTHING liked planned. I was suppose to hangout with my Grandmother and get ready for New Year's Eve tomorrow night. The plan was to go to Boston to a friend's place and celebrate with a bunch of people. Well, not going to happen now.

I woke up this morning with this incredible pain in my back. Just awful. I couldn't take a deep breath and every time I coughed it felt like someone was stabbing me in the same spot over and over again. With Cystic Fibrosis most people, myself included, have a chronic cough. It helps move mucus up and out of the lungs. Well sometimes that gunk is hard to move and that causes a 'coughing attack.' They suck! ANYWAY woke up this morning with that awful pain.

So I had to call out of Pulmonary Rehab because you aren't allowed to exercise if you have pain anywhere. And to be honest I am not sure if I could of worked out today. It was painful to even move. I collasped to the floor twice in pain. I called the doctors and they wanted to see me right away, obviously haha. So I went to the doctor's and they listened to my lungs and the usuals.

They then sent me to x-ray because they thought I might of had a partially collapsed lung! WHAT!?! Little stressful. Well in x-ray, ya' know how you are suppose to hold your breath while they take the x-ray, I thought I was going to pass out! Yikes!! So after that ordeal, I walk back to my appoint and I'm exhausted at this point. They check my Oxygen levels.... 78%. That is not good for anyone who doesn't know O2 levels. You should be in the 90s. They then checked my sugar level... 68. Thats low. Not super low but low none the less. Because of the low sugar I didn't get to drink a soda, I enjoyed that! haha

After what seemed like forever waiting for the x-ray results they came back and thankfully no partial collapsed lung. Just very, very congested. So they perscribed me some heavy duty antibiotics for the weekend. If I still feel crummy on Monday I have to call them back and off to the Hospital I go. Really hoping these meds work. I don't want to go back, especially so soon. That seems like such a fail! But I'm not going to worry about that now. It'll just drive me crazy.

After all this jazz, I was also told to stay away from crowds for the holidays and just get some rest. Hello, do they know they are talking to someone who is 24 not 94?? I'm already banned from drinking because of the Transplant list now I'm banned from seeing my friends cause they have germs!?! UGHHHH!!!

I guess my wonderful plans are not going to happen. Instead I'm going to pack up Tucker and head over to my Grandmother's house, who I was suppose to see today, and have a small New Year's Eve celebration with her. It will be mellow and involve Chinese food. So I can't complain too much, atleast I'm not in the hospital!! The Hospital is no way to start the new year, I need 2011 to be my year! 2009 and 2010 really weren't very nice to me. I'm ready for my good year!

Breathe Easy

Friends

Hello World!

Went to dinner last night with my 3 best friends. These girls have been my friends since we were 10 years old. We went to summer camp together. My favorite thing about us is the fact that we all live in different towns, went to different schools, and then we college came around, We all went to different states! We managed to stay close and every summer we would get back together and work at the same summer camp we once attended as campers. These girls mean the world to me. They know me inside and out and I couldn't ask for better friends.

Well one of them is getting married in Oct 2011! How exciting. She met her future hubby at college. He is a greta guy and they are so cute together. She asked me to be a bridesmaid, I was honored. I can't wait to hear about all her wedding plans. She deserves everything shes got! Love her to pieces!

“A friend is someone who lets you have total freedom to be yourself” -Jim Morrison

Breathe Easy

Holidays

Hello World!

Happy Holidays to everyone!! I hope everyone enjoyed a good holiday with family and friends with some love and laughter sprinkled on top! My holiday was great. While the family is a tad bit crazy when we are all together, I love having everyone around. Its our family tradition to have a nice prime rib roast for dinner. O wow, so good. And the gravy my dad made this year... To die for! I could of just eaten gravy haha! It was a fantastic dinner.

I got some really great gifts. I got pepper spray in my stocking, AWESOME! haha. It was probably my favorite thing in my stocking other than the candy haha. And yes at 24 my Mother er Santa still fills my stocking. Along with my younger 22 yr old brother and my older brother who is 28, and engaged, haha. She just can't help herself! God love her. My favorite gifts I recieved would have to be a toss up between Photoshop and my GPS. I really wanted photoshop. I played with it in highschool but never brought it for myself. The GPS I really needed, haha. I get lost going everywhere! I never know where I am or where I'm headed. I probabaly waste more gas driving around trying to figure out where I am than anyone else haha. But I appreciate all my gifts and I am very thnakful for them. My family loves me very much and I love them too!

One complaint I do have is my Grandmothers. Both of them. God I love them and they are so wonderful. I wish they would just say Merry Christmas and give me a hug every year. But they both insist on trying to buy a gift every year. Both are on SS so they don't spend much, which doesn't bother me. But to them I'm still this little girl. Which is cute and I'm happy to be that. But they insist on buying my these little junky things meant for like 8 yr olds. I graciously accept them every year but I wish they wouldn't waste their money. A hug is all I need. To share a meal with them is all I need. Hopefully they will realize that soon cause I'm running out of "Grandmas Gifts" room, in my room. Haha. Love them both so much. Amazing women!

Well once again Happy Holidays to all of you and your families!

Breathe Easy

New Living Room

Hello World!

So all our hard work has been totally worth it! The new living room...

The couch and shelves....

The Chair and Fireplace...

An upclose of the firplace... I put together, thank you....



And our tree! All lite up!!

I forgot to snap a picture of the wonderful TV/Entertainment stand I put together. O well. I can always post it later. But I had fun working on the new living room. A bonding expierence for me and my dad. Good Times.

Breathe easy

The Weekend

Hello World!

Well I had a good weekend. Did you? We finished painting the living room. Moved all the furniture back in. And set-up most of our Christmas stuff. As soon as its all put together I'll post some pictures. It looks good. I like it much better than our old living room.

Over the weekend I brought all 5 dogs to the groomers. That was a project. The youngest and newest one of the bunch, Lucy, has never been out in public like that before. We get the dogs groomed at Petco. Thats a pretty busy place. She hasn't been many places outside the home. She is also a rescue so she already had some fear problems. I felt bad for her. She was doing really well walking next to me then as people approached her cause they wanted to pet her, she froze. She was so scared of all the people she was shaking and piddled a little bit and even pooed some. My heart broke a little bit. I wanted to yell at these people to back off and give her space, she wasn't ready for all that. I wanted to just scoop her up and get her out of there. But instead I decided it would be good for her to see nothing was going to happen. So I sat with her on the floor and calmed her down. It took us 20 mins to walk across the store when it should of taken about 3. Haha. But it was worth it. She walked much easier out of the store after the grooming. So now all 5 dogs have been groomed and smell good for the Holiday!

Tucker after grooming with his Holiday bandana!

Today I finished all my holiday shopping. FINALLY! I cooked up some special dog treats too. The poochies are going to get them in their stockings! Yes, all the dogs get stockings. :) They also get gifts wrapped under the tree that they will get to shred open Christmas morning. Yes, I know, They are spoiled. But they do so much for us, they deserved to be spoiled and extra amount during the holidays. They are family too!

I also had my follow to the hospitalization. It went great. My weight is up, which is great!!! I'm right under the 100lb goal. So I have to keep stuffing my face haha. My lung function test went well too. I've stable at 33% for almost a month now! Thats great. I was down to 22% at one point. SO all good things on the medical front! Which is welcomed news since most visits aren't, haha. Now if I could just get that transplant call...

Breathe Easy

The Remodel

Hello World!

So it has been a busy week. My parents, or my mom mostly, had the grand idea to remodel our living room before Christmas. So we have had carpet people and plumbers and contractors in and out of the house for 2 weeks now. Monday we finally got the heater moved and the wall reshaped. Tuesday the carpet got put in. So I was put in charge of building the new furniture. They got a faux fireplace that had to be put together. Well that took like 3 hours to do. I had to build a wooden TV/Entertainment stand. That took like 4 hours. After I built things I was told I could help paint. It was proposed to more as "you are going to do it" than "if you want to" haha. So I have painted the ceiling of the room. Tomorrow we tackle the walls. Saturday we are hoping to get the rest of the furniture moved back into the room. So its been crazy!

Now I only semi-complain about having to do this stuff. I really don't mind.  I actually like being asked for a couple of reasons. Being asked to help out with stuff like this has taught me that I should still be trying and doing as much as possible, even being as sick as I am. I also enjoy being asked because I feel needed. Everyone wants to be needed by their family. I feel like I'm not so useless and I'm contributing to the family some how. I like it.

Another reason I like being asked to help, it goes along with being needed, is I feel helpful. My Dad was diagnosed with stage 4 terminal cancer in June 2009. He has cancer in his colon, liver, and lungs. He has had chemo EVERY week since being diagnosed. He is a trooper. He hates going to chemo and I don't blame him but he keeps going. But because of his health he no longer works and is much weaker than he use to be. He was the type of guy that would do and fix anything. He built and entire addition onto our home by himself. So, now He can't do as much as he use to and it bothers him, a lot. He isn't the type of guy to ask for help. So when he does, I know he really needs it. I love when he asks for me to help. He is my dad, I would do anything for him!

So between the 2 of us we have put this new living room together in record time! Haha. We are hoping to have completed this crazy task by Tuesday, so we can have some relaxing time before the relatives come over for Christmas. Maybe I'll post some pictures of our achievements when we are done!

Breathe Easy

Back Home

Hello World!

Well I am officially out of the hospital. I've actually been out since Friday but I was busy enjoying my freedom! Haha. I still have to do a week of home IV antibiotics. So that sucks. My port is still accessed which mean limited showering, which I dislike. I feel so grubby haha. I have a follow up appointment in a week. I feel like I'm going to the doctors like every 2 weeks. Some people go once a year or every couple of years. Not me, ha. O well, better safe than sorry. So my first meal once I was free, McDonalds! Ha. I just love my junk food. Hospital food is just awful. Nutrition is so important and hospitals are just so crummy. They need a nutrition makeover.

Ok, so while I was in the hospital I decided I need a hobby. I don't work, I'm "medically disabled" and I graduated college in May '09. SO I really have nothing going on. I finally got tired of people asking what do I do during the day, for fun, or just to keep busy and having nothing to tell them, So I've decided to dabble in the world of Beading. I love jewelery so why not make my own! I have also decided that if the stuff I make turns out any good I'm going to sell them at local craftfairs. I'm going to donate half of my proceeds to the Cystic Fibrosis Foundation. That way I can give back and help. I think it will help me feel less useless. Because sometimes I just feel like I'm such a useless person. Its not good, mentally. So hopefully Beading is going to help bring me out of that funk!.

Can't wait! Breathe Easy

Missing My Poochies

Hello World!

Ok so I've been in the hospital for a week now. I THANKFULLY get to go home tomorrow. But while I'm here I have missed my herd of Poochies. I have met some great people on Twitter who love their animals just as much as I love mine, so its not so weird when I talk about my dogs like they are children. But not seeing my babies for a week has made me miss them. I can't wait to see them tomorrow! Yay!!
Here are some Pictures of all the mutts in my life....

This is Shotti. She actually belongs to my oldest brother but lives with us because

he can't have dogs in his new apartment.

This is Rags. He is mine but he lives with my Grandma. He has a lame back leg and back problems. So he lives with her so he doesn't get trampled on by the bigger dogs. Its like Joint custody of a kid. Sometimes Rags stays overnight with me!

This is Lucy. I call her LucyJane. She is a rescue dog. We don't know her breed exactly. We were told she was great dane/rotti but she is pretty small for a dane. And her rabies papers just say Lab Mix. So who knows what she is! But we love her. Here she is sleeping on her daddy.

This was the very day we picked her up, so first car ride!

This is Murphy! We rescued him too, kind of. His owners had to get rid of him because of a divorce and the apartment the women was moving to wasn't big enough for him. We tried him out in our home but since he came from a farm he had intense herding skills. These skills didn't mesh with our other dogs. So my Uncle took him in and Now Murph lives with him. Murph is much happier with my Uncle who has lots of space for him to run and he can herd the squirrels and stuff. We still see him all the time.

This little girl is Bella. She was a Mother's day gift to my Grandma. She is now the baby

sister to Rags. They get along great. They are good friends!

These little faces are Max and Ruby. They are my parents babies. They are brother and sister,

from the same litter. Max is my Mom's favorite. He can do no wrong in her eyes.

Ruby gravitates towards my Dad. She is an absolute daddy's girl.

And this handsome devil is my baby. Tucker James!! Wow. I'll just have to do a whole

post about him. There is just so much to tell! And I have hundreds of pictures of him.

He is basically my child. Love him to pieces!!

Breathe Easy

Surprise Visitor

Hello World!

So I'm still in the Hospital. Great time, haha. I have developed lovely mouth sores from all these heavy duty medications. Not the first time this has happened so I expected it. This time it has seem to hit with a vengeance though! I'm talking my whole mouth and creeping down my throat. It was so bad Sunday night I couldn't even eat whole foods. Brightside though, My main doctor is back tomorrow and I'll get to see him. I don't really dig the random attendings that I have to see when my guy has days off. The selfish side of me wants to make my doctor be there every second I have to be there. He can have days off once I'm out and feeling better. Too needy? Too demanding? O well, Its how I feel on the inside.

I got a lovely suprise visit today from my FAVORITE Respritory Therapist. Now, I hate, er dislike most of the Respritory Therapists. Just because of their jobs, not really because of who they are. I HATE vest therapy, I HATE nebs, I always have and always will. I know they are good for me, I know they help me fight CF but still, Total social interruption! I just don't dig them. SO the people that come to administer the nebs and babysit me while I shake all about in my vest are not my favorite people. They wake me up early in the AM, disturb me from my visitors in the afternoon, and keep me up late in the PM. They never come at a convenient time.

Well last fall (2009) I had to be intubated for almost a month. Once I came off the vent I had some extreme anxiety about being able to breathe and getting enough air. Well this Respritory Therapist named Vicki basically became my breathing coach. She is an amazing woman!! She is the one who had to intubate me intially and happened to be there the day I wa taken off the vent too. She was there when I was introduced to the BiPap mask, Which I don't remember but hear it was quite an ordeal. She was also the very first person to take me out of the ICU. Most people were too nervous to take me anywhere. They wanted to keep me in that little ICU room, close to the docs, close to the monitors, Which is understandable. But I was going stir crazy!!!

Vicki came in one day and just saw that I was bummin hard about being stuck there and she just said "You want to get out of here?" I basically jumped out of bed and said yes! She said she would check with my doc and if he gave the OK she would come back later and get me. This was in the morning. Well the whole day went by and I was beginning to think the doc said no and it wasn't going to happen. Around 7pm, Vicki shows up wheelchair in tow and says "You ready"

O man was I ready! At this point I still couldn't walk on my own. I had only even stood up with help and it was shakey. So after about 15mins I finally got into the wheelchair. Then came all the extras we had to bring. A pulse oximeter, oxygen, blankets, masks, some purple thing thats used on people if they stop breathing. But we loaded everything on the little wheelchair and off we went!

FREEDOMMMM!!!!!!

We wheeled all over that hospital. It was great. The last memory I had it was Septemeber and pretty warm out. Now it was November and freezing! I got to smell fresh air! Nothing has ever smelled so good in my life. Vicki was officailly my favorite person in the hospital. She took me out several other times while I was in the ICU. Once I moved from the ICU to a regular floor I didn't see her anymore. It was sad but also good. That meant I was doing better.

So today, Vicki popped her head into my room to say HI and see how I was doing. So great to see her. I owe her a lot. She helped keep me sane. She probably helped me more than she will ever know. Good Lady. And good at her job. So glad she came by. :)

Hospital Time

Hello World!

Well, Thursday morning I woke up and felt like I had been run over by a mack truck. Just awful. So naturally the first person I call.... Mom. She gave me a little advice and then next I called the docotors. Without question "Come on in!" They say. Just wonderful. Exactly what I wanted weeks before Christmas. So I arrive around 1 pm, kind of early, Usually I don't get into a room until 6 or 7. But it just turned out to be a hurry up and wait. Was in the room at 1 didn't see the doctor until 5. Great! So glad I rushed here! Ha.

Anyway, the first night was anything but restful. Didn;t get to sleep until 2am them was woken at 5am to be disconnected from my feeding tube, then woken at 6am to have blood taken. Which I rate as one of the worst things to happen to me in the world! I HAAATTTEEE NEEEDLES!!! Juts the thought of a needle going into my body makes me tear up and get anxiety! Its just plain awful. So after that dreadful experience I try to go back to sleep, finally start to fall asleep and O in walks a doctor to ask me how my night was! Totally not in the mood!!! Finally got to settle back in my bed and well here comes Physical Theraphy. So needless to say I basically slept the rest of the morning away, straight through breakfast. So natuarlly I then wake up starving. Quite the day. Thankfully things slowed down after lunch.

Rocking the Pink Vest for treatments!

So I'm hoping tonight goes a little smoother. Maybe I even get some real sleep. Breathe Easy

Survivor and Cookies

Hello World!

Its Wednesday so that mean SURVIVOR!!! O wow do I love that show. I have watched for as long as I can remember. It is something My Dad and I bond over. He also enjoys Survivor. We watch every week and talk about who we think might win and the drama that goes along with it. It is a good time. We even manged to hook my younger brother last season, haha.

Well, not much is happening in my life. No funny stories to tell. No rants. Its been a mellow few days since my last post. I will say, My mother made some homemade chocolate chip cookies today, she alwasy makes holiday cookies, and they were soooo good. I basically forgot how good cookies are. Loved it!

Well I'm kind of tired. Haven't slept well lately, getting that checked, don't worry.

Breathe Easy

The Road of Life

Hello World!

Wow I think we are finally done with the Tanksgiving leftovers. Phew, I was getting sick of Turkey. So my Thanksgiving was good. Had the extended family over. Always entertaining. There is never a dull moment when the whole family, both sides, get together. I was glad to see them but more happy when they left! HA. I'll see them ALL again in a month for Christmas. Can't wait, haha.

Speaking of family... Sometimes I wish dogs could talk. My puppy dog has been acting funny for 2 days. Funny like out of the norm. He isn't sick or atleast visiably sick. He is just real needy and doesn't want to leave my side. Don't get me wrong I lovvvee that he wants to be with me all the time, but its not normal for him. So I wish he could just tell me what was up. It would be so much easier. Hm, hope he's out of this funk soon.

Well still no Transplant call. I think it is more frustrating waiting then it will be to actually go through it. For the first month I was on the list I had sever anxiety. Anxiety about waiting, about getting the call, about missing the call, about not making it through the surgery, just tons of stuff. I have sinced relaxed. Now I'm more antsy then anxious. I know life is going to be better post transplant, I'm ready for it now!

Waiting has put my life on hold it seems like. I finshed college so I'm done with school. I'm deemed medically disabled so I can't get a job. Occupying myself with things to do is so hard. Without having a job saving money is not easy, I still have bills. So I don't have "extra" money to spend on going out. I depend on other people to take me out. I hate that. I feel like such a useless person sometimes. Sometimes I feel like everyone around me is going 65 on the highway of life and I'm in the breakdown lane with a flat tire. It sucks.

Well, something I do do to keep me a little busy is go to Pulmonary Rehab. Every Tuesday and Thursday. So as tomorrow is a Tuesday, I need some sleep.

Breathe Easy

Thanksgiving!

Hello World!!

Happy Thanksgiving Everyone!!!!

Well lots to be thankful for this year!
- My family, obv! We definetly have our battles but I would be lost without them
-My baby, Tucker James. He is THE best puppy dog. Has helped me in soooo many ways
- Cell Phones! It is my lifeline to the transplant team. O and Transplant team, feel free to call sometime soon :)
-Rootbeer and Bagel Bites. Without those I would starve every night!
-Ellen DeGeneres andJimmy Fallon. They provide constant laughter in my life. Laughing is so good and so needed!
-Socks. Man would my feet be cold if I didn't have socks.

Lots of little things in life to be thankful for. Its the little things that make life worth living. I got to see some friends from out-of-state. That was awesome. It has been a few months since the last time I saw them. Well worth the wait. We ended up going out to a few bars and did a little Pre-Thanksgiving celebrating. Good Times!

Well I hope everyone had an awesome Thanksgiving! Breath Easy.

Thanksgiving

Hello World!

Well we are only days away from Thanksgiving. This is definetly one of my favorite holidays. It is just all about family and friends and being thankful. "Thank You" doesn't get said enough in my family. While we all love each other and we are a pretty close family those words are rarely uttered. This holiday gives us a chance to remember that we are very lucky and thankful to have each other.

So my parents are off for the evening. They are celebrating their 30th anniversary of their first date. Kind of cute? Kind of cheesey? haha! Well while they are away I get the honor of dog sitting. So instead of my one little baby I'm watching 3! I love it. Dogs are so much fun. Besides they are both little dogs so they make great snuggle partners in bed. So cute!

Hmm, nothing really exciting going on with me. Everyday is pretty much the same. There is some good in that... no surprises. Although it can be boring. O well, I'll just keep waiting for my lungs! 6 months and 2 days of waiting.... hopefully not many more.

Breath Easy

Funny Stuff!

Hello World!

Well its been a weird few days. I have felt good (mentally) a little congested (physically) but haven't slept. So who knows whats going on inside me. Its a war in there, I'm hoping the good guys win!

I was browsing other blogs today. I love reading fellow CFer's stories. A lot of them help me in just realizing that other people are going through the same stuff. And I think, hey if they can do it.... I can do it. I also enjoy reading blogs about dogs and pets in general. I think a pet is a wonderful thing to have! I have 5 dogs. Its so wonderful to come home to all that love. And their always ready for anything. Its great.

Anywho, I came across this blog, 

http://hyperboleandahalf.blogspot.com/2010/11/dogs-dont-understand-basic-concepts.html

 

Dogs don't understand basic concepts. OMG! It is soooo good and FUNNY! I haven't laughed that hard in a long time. It was exactly what I needed. The story and pictures that went with it, priceless. The author should make a book. I would buy it in a second! haha. O man, so awesome.

 

Well, nothing else happend really. Kind of a boring week. Breathe Easy!

Can't Sleep

Hello World!

Well its 3am and I can't sleep. Whats new. Going to the doctors tomorrow for a check-up I'll have to wait and see what they say. Well the week has been interesting...

I had an EPIC battle with my mother last weekend. We didn't speak all week to each other. Today was the first day we actually had a conversation. Nothing was said about last weekend. We just started fresh. Who knows if we will ever talk about that weekend but right now it is still a sore spot. Our relationship has been rocky for the past year. Some days it is great! But other day we just disagree and scream at each other. It is a work in progress, and everyday it really does get a little better.

I also started Pulmonary Rehab again. I do hate going but I know it is good for me. I did find out that my favorite Physical Therapist is leaving, which was a huge bummer. The class has a lot of senoirs in it, I'm the youngest one. So it was nice of this Therapist to talk with me and joke around and exercise along with me. I'll miss her but wish her well in the future.

Overall my week wasn't too exciting. Went out a couple of nights with some friends which was nice. I haven't gone out in a while. I really needed that. I felt much better. Hopefully I'll start incorporating it into my schedule all the time. I'm starting to go a little stir crazy being stuck in the house. I have no job because I'm "medically disabled" and I finished school in May '09 so having a social life has taken a small dive.

I've been going through a rough patch, mentally, for about a year now. In September of '09 I was hospitalized and almost lost my life. Ever since then my life has been full of anxiety and worry with hints of depression. I'm worried about my health, my family is too and so are the doctors. Because of all that worry I've been living under a microscope in fear that I will fall ill again. It has just been to much stress. I had a small break down and go some great, to the point advice from a friend who usually has little to say. But they when they do offer some advice I take it very seriously. They just sais flat out "You are not ok and not all there. You need to get your shit together." So thats what I have decided to do. I'm getting my shit together.

I detoxed my whole body from all my medications. Some people will think thats dumb because of the CF but I don't care. I have been on so many different anti-dpression meds and anxiety meds that I was having a hard time finding myself. So I gave everything up. I will say, I feel so much better. Tomorrow I will start a fresh, new routine. A better, healthier rountine. I'm going to try and live my life like I used too. I'm not going to worry about so much stuff, its not healthy. I'm ready to be my carefree, easy going self again!

Breathe Easy

Hero?

Hello World!

Have you ever had a hero? Someone you looked up too and could do no wrong. Well I think I found mine. Although I would call them more of an inspiration than Hero. I want my life to turn out the way hers did. She has CF. She has been through a double lung transplant. She is married. She has adopted 2 incredible children. I want her life! Or actually, I hope my life turns out that good. I have never met this woman but have spoken to her many times.

We first contacted eachother through e-mail. It then progressed to Facebook. She lives to far away to visit but I'm hoping at some point I'll be able to meet her. She has helped through my CF struggles. She is also a great source to talk about tranplant stuff with. She is always supportive without be pushy. I couldn't imagine going through this tranplant experience without her. She has shown what life could be like post transplant. I could never put into words enough Thank Yous for her.

I just hope to one day be able to do for someone what she has done for me. Breathe Easy

They replaced it!!

Hello World,

Well today was a lazy Wednesday. I didn't really get motivated to do anything until about 3pm. Ha! What a day. I did mange to put togther 2 wooden storage cabinets I bought. I thought for sure I would end up asking my Dad to help me. BUT I manged to do all by myself, I guess I'm craftier than I thought. I just have 1 left to build. It is a little bigger so I'll save that for another day.

Tomorrow will be a busy day.... well a little busy. I have to go to the bank, always fun. Although I will say, My brothers puppy ate or rather shredded $25. A $20 and a $5. The 20 was savable. The 5.... not so much. It was in about 8 pieces and part of it was actually missing. Well I gathered all the pieces and brought it to the bank. They replaced it!!! It was great, I didn't think they would. Must of been my lucky day! ANYWAYS I have to go to the bank again tomorrow. I'm also going to swing by my Brother's pizza place (free lunch!) and visit him. Then I'm off to visit a friend I haven't seen in a while.

It'll be nice to get out of the house and just hangout with a friend. Next week I start back at Pulmonary Rehab. Now I hate Pulmonary Rehab but it does work! I'm not a fan of any kind of formal exercise. I'd rather just stay active. But I'm definetly lazy in the colder months. I don't like going out in the cold so I tend to stay in doors and veg out. Not good for CF people! Sitting around just lets that mucus collect and stew infection. I'm hoping to make it through the rest of the year without a hospital visit but ya never really know.

Well my stomachs growling, off to make some grub! Breathe Easy

Just Another Day

Hello World!

So how was everyone's Halloween? Mine was pretty boring. Didn't do anything myself. My neighborhood doesn't have many children left in it so my house only got a few trick-or-treaters. I will say I accidentlly scared a little one. He had to be 4 or 5 maybe. We have this hanging skelton in a cage and when you walk by him, he moans and shakes and screams "let me out!" Haha. It terrified the little one, oops! Haha but thats what Halloweens about so I guess it is ok! I did enjoy all the left over candy in our bowl! Yumm!

In other news, I went to my monthly CF clinic today. It went..ok...I guess. My PFTS are still low, in the 30s. But that is good for me. I have been as low as 22% before. Yikes! Lost a couple pounds... thats never good!! So I need to eat up, extra calories! Overall a decent appointment. I have to go back in 2 weeks to see the Diabetes doctor. FUN! Haha. I got a routine eye exam today. My first one. I'm not really a fan of drops and stuff in my eyes. Yuck! But that went well, Perfect Vision!!

The only thing that bothered me today, and has bothered me in the past, is how many times I'm asked "Are you sure you still want to do transplant?" YESSS!! YES YES YES!! I would not have put myself through all this torture if I didn't want a transplant! It really bugs me that they think I'm "giving up" or "not trying" just because maybe I'm having an off day. Sorry I can't shit rainbows and be all smiles EVERYDAY! This is a stressfull situation. I shouldn't have to be "happy" everyday. Waiting is stressfull, being under constant scrutiny is stressfull, having CF in general is STRESSFULL!!! Sometimes I just want to say "get off my back" but I don't. I bite my tongue. Its not really nice to yell at your doctor. And don't get me wrong my doctor is GREAT! I wouldn't want any other. But sometimes he gets on my nerves! O well, I guess it just goes with the territory.

One day I'll have my new lungs and look back on this and read it and laugh. Can't wait for that day!!

Breathe Easy

A Couple Things....

Hello World!

Well I had a good day! I went shopping with my Mother. Got some new shirts. Pick out a nice top for Thanksgiving. I also got a leather jacket. Its my first one, I like it. Overall it was a good shopping trip. I also went out to dinner with both my parents. Thats always fun. We went to a local spot called The Backroom. So good.

Yesterday, my younger brother sent me on a mission. He decided to go to a Halloween party last minute. I was told to fine him a costume. WELL everybody seemed to be out doing last minute shopping. The party store was mobbed!! I ended up finding him a pretty good one. He ended up being Mario and my other brother went as Luigi! They looked good!

So tomorrows Halloween, everyone have fun!!! Breathe Easy.

Hello World,

Well today was nothing fancy. I went with my older brother, who also has CF, to his doctors appointment. He is in a clinical trial for the new VERTEX drug. I'm not exactly sure how the overall trial is doing but my brother seems like he is in good shape. Although my brother and I grew up together, our CF lives have been very different.

Tomorrow I go to Boston for a routine check-up with the transplant team. These trips always make me nervous. Not really sure why, they are just standard appointments. O well, that too will pass.  Later this week I'll be going out to dinner with some friends. I always love going out for food, it is a favorite past time of mine.

Well I'm not feeling overly chatty this evening so I'm off! Breathe Easy.

Just a Tuesday

Hello World,

So today I had to bring my dad to an eye appointment, No biggie. For those of you that don't know my dad has cancer. He was diagnosed in July 2009. He has stage 4 terminal cancer. He has been going to chemotherapy EVERY week since being diagnosed. I was the one who brought him to his appt that July. Scary stuff. So today I brought him to his eye appt, My dad comes out after about an hr in the doctors office and tells me he has to go to another eye doctor because there is a cloudy mass on the back of his eye. Next sentence could of killed me.... It could be Cancer.

WHAAATTT!!! Everytime I seem to take him to the docs we get bad news!!! Well I'll be waiting to hear if its cancer or not. Hopefully not. Well that was the highlight of my day. Otherwise it was uneventful. Tomorrow I'm going to see my Gram. Love visiting her. She is so wonderful. Why I see her I also get to visit her puppy dogs. I just love dogs. I think life would be so empty without them in our lives. Hmmm well nothing else interesting to share. Hope all is well with you and your family. Breathe Easy.

Weekend!

Hello World!

How is everyones weekend going? Mines pretty good all things considered. It is really rainy and rather chilly but I guess that comes with the Fall territory. I just news that my Grandfather will be visiting tomorrow, thats always exciting. I only see him a few times a year, mostly holidays. So this will be a nice, unplanned visit. He has probably as many medical problems as I do, so conversation is always related to medicince. Ha.

My brothers puppy, Lucy, who is SO CUTE by the way, just got herself banished from my bedroom this morning. She chewed up not 1 but 2 sandals!!! They were a good pair too. Ones you could wear with everything. So now she is banished until shes done her chewing phase.

Well I'm off for the night. Everyone enjoy their weekend. Breathe Easy.

A Middle Ground

Okay, so about a month ago I had no appetite and really wasn't eating much. I also could barely keep food in me. Everything would lead to vomiting, STRESSFUL! I was admitted to the hospital to pack on some pounds and try and control the nausea. Well it worked. I have successfully gained a few "extra" pounds and I'm loving it. My problem now, I'm hungry allllll the time!!! hahaha. There is no middle ground to this madness. My family can't keep enough food in the house! It is crazy.

On other news. Tomorrows Friday!! Yeah, love the weekends. I also got my car fixed after a week and a half of being broken. That was wonderful. I don't go that many places but I didn't realize how much I missed my car until I had to wait for someone to come get me to go out with my friends. I felt like I was 15 again, haha. Awful. Well I'm off to catch some sleep. Breathe Easy.

A Couple Thoughts....

Hello World!

It's Monday! How's everyone's Monday going? I spent my day just lounging around. It was pretty nice and peaceful. This past weekend was out final weekend at the Family Lakehouse for the summer. So I guess I have to finally admit the summer is over. BOOOO!! I really dislike the winter months. I don't like being cold, people become bad drivers in the snow, and it always make my health worse. LAME!

Well I just found out today I have to have another 6 minute walk test and an ABG (Arterial Blood Gas) test for my Transplant team. The walking will be easy, the ABG.... thats a whole different story! I HATE needles. The thought of getting poked causes lots of anxiety and I usually cry. So thats awesome news! haha.

Well I don't have much to report! So this will have to be it. Breathe Easy!

Not Your Ordinary Boxing Match

Not Your Ordinary Boxing Match
Having several fatalities under its belt Cystic Fibrosis remains the undefeated champion. Life with CF is like a boxing match. Except the rounds last for months and the fight goes on for years, not just an hour or two. Like a boxer training before and after each fight, we do our training before and after each day. Only instead of being in a gym working out with weights, we're at home taking a handful of pills and doing over an hour a day of nebulized breathing treatments and vest therapy. We fight as hard as we can, but no matter how hard we punch or jab at our opponent, it hits back harder and harder. Then just when we think we have the fight under control and doing good. BAMM! Out of nowhere comes an uppercut, then a right hook and a left and blow after blow. Then just as our opponent has us against the ropes getting ready to deliver the final uppercut to put us out and win, DING! DING! the bell rings. Its the end of the round. Instead of going to our corners to talk to our manager and get some water and clean up, We go to the hospital to talk to our doctors and get some IV antibiotics and get cleaned out. After 2-3 weeks of that, DING! DING! we get out and start next round. Like a boxer going into the round with a little rest and a few jab wounds, we start out strong, then it turns into a repeat of the last round.Then after round after round it is the same thing, like a boxer getting beat up more and more, getting weaker and more tired as each round passes. You keep fighting the best you can. But like a boxer in the final rounds you begin thinking, "Should I give up?" "Should I throw in the towel?"  Like a boxer who really wants the champs belt, the answer is no. You keep fighting as hard as you can fight and say to yourself, if my opponent wants to remain the champ, he is going to have to earn it, because we're not going down without giving it our best.

 

I began my fighting career almost 29 years ago on April 30,1976, the day I was born. Though I know I will not be able to defeat my opponent I know it someday will be defeated and people like me will not have to spend their lives fighting each day they live or for each breathe they take because they will have the cure to defeat the opponent. I just hope they think back to those of us who gave our lives, to be studied and monitored and fights be documented by the CF team so they could find a way to defeat CF and say Thank You.  ~ Jamey Carver

This was written by a fellow CFer. He lost his fight against CF on June 3, 2006. While I never knew Jamey, I read about his story on a website that was submitted by his sister, Megan Carver. She wanted to share her brother's inspiring words and create awareness for CF. She continues to fight in Jamey's memory.

Just Thinking

Hey World!

Wow, October already. I can't believe its fall. I also can't help but think about last fall. This time last year I was laid up in the hospital on life support. I have no memory of October 2009 at all. It is kind of scary. While part of me worries that it could happen again this winter, I am also so thankful that I made it through the last time.

I just had a clinic appointment a few days ago. It went pretty well. I actually gained weight and my PFTS are the highest they have been in almost a year. So overall it was a good appointment.  I start Pulmunary Rehab again soon. I actually a little excited. I took the summer off so I haven't seen my Physical Therapist in a while. She is pretty awesome. I'm the youngest one and only one with CF in class. The majority of the other people are 50+ and there because they have emphysema. Bet they regret smoking their life away now. Well that was a little mean, but its true. They kind of brought it on themselves.

Well its getting late. So I'm going to take off. Love!! Breathe Easy

Packin on the Pounds

Weighed myself this morning. A little bummed, lost a pound. Most people would be thrilled to lose weight. For me, it's a death sentence. I have had so many problems with my weight the past few years. I was just recently hospitalized for 14 days to help put on some pounds. I was able to gain 5lbs in 2 weeks. AWESOME! Any tips on keeping calories on?

Now trying to keep that weight on is a hard thing to do. I will say, the silver lining is being allowed to eat as many cupcakes as I want! Ha.

Other news: I went with my soon to be sister-in-law to scoop out a possible wedding spot. Very nice! I really like it. She has a few other spots to check out before she decides. But it is Exciting!!!

First Entry

Hello World!

I know its late but I can't sleep. Made some cupcakes today. YUMM! Trying to keep those calories on me. I'm at 96lbs my goal is 100lbs. It is harder to gain weight than you think. I spent the day dogsitting my brothers puppy, Lucy. She's a cute one. Tomorrow I get to go with my soon to be sister-in-law and look at possible wedding venues. It should be great fun. Well this entry will be a short one. Have a goodnight!