Surviving Is My Reality

"And so she breathed through her life as if it were a battlefield and wished that one day she would actually live, and not just survive."


This quote is so fitting. CF is my battlefield I will tell you that surviving this battlefield is no easy feat! Today my CF apt was loooonnnggg and a lil bit draining to say the least. My mind is always on overload after appointments like today. I truly am in awe and so very grateful for this body of mine, it seriously amazes me everyday at how hard it works just to survive. 

My lungs are on a slow but steady decline. Seeing loss in lung function and facing the reality of what percentage of lung power I have left can be somewhat discouraging. However, I try not to focus on the numbers too much... it's easier said than done, but the mind can be a powerful healing tool. I have one month to turn these numbers around or I'll be joint bound. Until then I will continue to breathe through my battlefield and do everything in my power to survive because surviving is my reality and I have to be ok with that. 
Breathe out Love! Xo❤

Throw back Thursday

Hearing you will have to be admitted never gets easier.  Not sure if its the realization that I actually am sick and coming to terms with that, or the fact that I have to take a two week time out to focus on something that you never really want to completely focus on. 

So I pack my bags and move in to my home away from home and I make the best of it. The staff becomes my family and I make the joint as cozy as possible. From rearranging the furniture to decorating ceiling to floor, and don't forget the candy dish so the nurses will stop by to get their fix. There's a method to my madness. 

Joint living isn't always easy, however I'm blessed with an amazing support system that helps make it go as smoothly as possible! 

Breathe out Love! Xo 

The Joint

The first time I was in the joint... 

I think I was as scared then as I was on Wednesday. After more admissions than I can count, hearing you will have to be admitted never gets easier.  Not sure if its the realization that I actually am sick and coming to terms with that, or the fact that I have to take a two week time out to focus on something that you never really want to completely focus on. Its frustrating after countless hours and all my energy and efforts it still wasn't enough to have CF not rear its ugly head. CF is inconvenient, CF is not easy, CF is exhausting. However, CF has made me strong and has made me appreciate the Lil things in life. CF makes me Fight harder, Love more and truly appreciate life one breath at a time... A blessing in an ugly disguise. CF is my reality and its made me who I am today, for that I am grateful. So throw these sucker punches my way CF you don't stand a chance. You can strike when you want but you have me and my amazing support system to kick your ass... And don't worry, we will kick your ass!! You picked the wrong girl!! 

Helpful tips for after admission

Today I was talking to a friend and telling her some things I do after admission that I think help keep me out of the joint. These tips seem to work for me but remember we are all different. So I thought I would share them and blog about it...

~After I get home I start up on Tobi or Cayston even if I am not due to start. I feel it maintains all the hard work the IV drugs just did. Make sure you talk this tip over with your Doc first. It's always good to make sure you guys are both on the same page for a good after admission game plan.

~ I also change out anything that came in contact with mucus membranes... Most likely you had an infection before you went in so no sense of re infecting your self. It can get costly so If getting all new is not an option definitely sterilize what you were using.

THINGS TO REPLACE
*Toothbrush
*Mascara
*Chapsticks/Lipsticks
*Bar of soap in shower
*O2 tubing
*nasal sprays
* If you do a thera pep or Pep mask or a form of airway clearance that you constantly blow into.
* sinus rinse bottles
*For Infants or young children you might want to replace pacifiers


THINGS TO STERILIZE
*ALL pari jets or nebs
*Sheets/pillow cases, towels etc.
*O2 filter
*ALL make up brushes
*For infants or young children Really scrub bottles, nipples, and sippy cups


***helpful hint***
When touching all the old/dirty stuff I always wear gloves


This is all I can think of off the top of my head. Is there any tips that you guys do that we should add to the list? I would love to know!

Out but not out and about

Well I got out last thurs from the joint, I knew it was coming... So I went in, and was on a new floor entirely this time. Since the last time I was in the hospital the hospital had moved the CF wing. So I wasn't sure what to expect. The first day I got there I was in a temporary room until a patient was discharged from the princess room ;) Well thats my kind of room... they must of heard about me ;)

So the theme this year was Thanksgiving/My 1/2 Bday, I was in there on Thanksgiving and this year my 1/2 bday happened to be on Thanksgiving. So we decorated accordingly which confused a lot of the staff. But I think I have convinced about 10 people to start celebrating their 1/2 birthdays. ;)

See Libby Lou on the chair she's my pillow pet that Canz and Mistie brought up to me... I brought her home and Lilly and her became fast BFFs, so much for Libby Lou being mine. Lilly carries her everywhere its so cute.

I had an AMAZING view, here are some pics of that. Look beyond the plantation blinds... it really was a nice room, marble sink, full fridge and freezer.

All of the staff was so wonderful and complied to all my crazy strict germ a phobe rules while I was in there. I did have some crazies in the room next door and even had a prisoner that was shackled to his bed. Yep, I was sleeping next to a inmate in there. He had 2 full time guards at one time and granted he was shackeled down, but it was a lil intense. Not very many people can say they spent the night a room away with from a prisoner.

Since I have been home I have been on house arrest. Our air has been the worst in the nation for the last 4 days. Its so thick you can taste it and you cant see very far in front of you. It was putting a damper on my view while I was in the joint.

Yep the above shows we are the worst in the nation with California in second place

The air was a lil better today so I got out for a couple of hours but came back home to my O2. Last night my resting heart rate was 140. So I am taking it easy so that my stint in the joint can last me a long time.

I hope you all are enjoying the holiday hustle and bustle, be safe!! Xo

Ahhhhh

HOME IS WHERE MY HEART IS........

It feels so good to be home! I got home yesterday and did all my out of the joint chores, cleaned sheets, switched out toothbrush and O2 tubing, Pari jets the list goes on. No sense of getting old bugs again :)

Today I am off to get a massage and a couple errands and then My babies are coming home! I can't wait to snuggle them. They are going to freak out when they see me I will try to get video of it. I hope you all have a great day! Xo

I did it!!

I did 24 min on the tread mill then I completed my goal of 10 min on the stair stepper!

Woop! Woop!

B O R E D !!!

TGIF, although weekends in the joint are pretty boring....

I am staying the full 2 wks. Thank goodness for my visitors, internet and magazines!

I blew after 1 week and blew a 38!! Woop Woop highest since sometime in 07. My workouts in here are going great and I even ventured to the stair stepper. I did 3 min on it yesterday with my heart rate at 171 and my 02 at 92 on 3 liters. My goal is to do 10 min by the time I bust out. I did 6 min today so I think I will accomplish my goal.

Yesterday I had a the pleasure of having coffee at the starbucks here with Dr Bob Beall the president of the Cystic Fibrosis Foundation. What an amazing man, he is an inspiration and is so dedicated to finding that cure. His wife is now the proud owner of a Love to Breathe necklace. There are so many great things headed our way. There are over 30 drugs in the pipeline, which is so promising for all.

Thank you to everyone that has sent me cards and care packages. I appreciate it more than you know~

Have a great weekend!

Xo

Somer

Photo booth is always a great way to kill some time :)

a lil glimpse of Hollywood

My Germ Warrior self loves this sign! I had to add my own touches

the view from my bed... pics of my babies!

My front door

long day...

Ugh! I am so sleepy I can't believe it's only 7 pm... My eyes feel like I have been in Chlorinated water all day with them wide open. It could have something to do with me scrubbing my room down with those mega duty sani wipes, you name it it was scrubbed. I have my own pulse ox so I don't have to use the one everyone else does. Being the germ warrior I am I got hooked up with my very own stethoscope and blood pressure cuff life is good. :)

Im all settled and the room 2602 has been transformed into a mini Hollywood

I have Rodeo Drive on my left and Hollywood Blvd in front of me and Vine street on the right ;)

So The University of Utah is SO fancy now (they have been remodeling for 3 or 4 years) we have escalators and apparently the cafeteria hosts a different restaurant every day. Tomorrow is sushi from Asian Star so I can hardly wait I will let ya know if it's any good. Ill post pics tomorrow of my lil Hollywood and whatever else I find fascinating. There is a starbucks in the lobby too, so I am set!

The Thipple is accessed and the drugs are flowing. Killing mucus left and right :) Thanks for all your well wishes!

My poor babies haven't eaten a thing today they know their mommy is in the joint :( I talked to them on the speaker phone and poor Osc was running around freaking out trying to find me. Breaks my heart! I miss them already! Their with their daddy so they are in good hands it just takes them time to adjust.

I got my drug schedule all worked out so complicated... my sched is 5am 1pm and 9 pm and another drug every 12hrs at 8 and 8. Vitamins at 11 and 7 so they don't interfere with Cipro. 4 breathing treatments a day, Rehab is at 9 am so I will be hitting the treadmill bright and early not to mention a blood draw at 7 am, so I am sure it will be a sleepless night...

Thank goodness for the internet and my visitors to keep me sane! Xo

9 am

on 9-9-09...

I will be off parole :(

18 months on parole it was a good run... but now it's time to clean the twins out.

I will let ya all know details (room # etc.) as soon as I know the 411

I just got done packing I forgot how much stuff I take there here are just a few items that are packed away

• answering machine
• Giant size bottle of Purell
• Pulse ox
• USANA
• blankets & pillow
• computer
• ipod and speaker
• books and all things to keep me sane
• treats

The theme is Hollywood and Madge since her new album comes out at the end of this month

Bustin out the Bubbly

Can I get a Hip Hip!!!!!

HOORAY!!

Today I had to blow and I was a teeny bit worried cause I am still having this stupid pain. I feel great other then this pain in my left upper chest. My doc thinks its muscular or a joint issue so I have been taking Motrin 800s and it seems to be subsiding a bit. I just wish it would go away so I can start back up with my Tracy Andersen and my pushups. Anyways back to my exciting news... so today I blew a 35 which is 1 pt up from March! Yahoo!!!! It's not the 42 I keep visualizing but I honestly think I will hit that after the next time I have IV antibiotics whenever that may be. 

But for now I am 15 months out on parole and counting! Which is a 20+ year record for me!! Life is GREAT!!!! No joint for me. I am ecstatic and am off to celebrate!!! Xo

All in a 24 hour time frame

Well I had a pretty good weekend until Sun at 2:15 pm 

I had gotten home from brunch and I was getting ready for my lil McNoodle to come over. It was Shane's Bday on Mon (Happy Bday Big Bro) so him and Tam were going up to Park city to stay the night they were dropping her off at 2:30. Well when I got home from brunch I thought I would throw the ball for the babies outside so they weren't so hyper when Makena arrived. 

So when I walked in from throwing the ball. I had a lil wheeze/gurgle so I coughed and out came blood... My first thought was not again!!! This time however was a lot worse it wouldn't stop. I kept having to clear my airways and I couldn't stay on top of it so I called my mom and had her hurry over to get me to the ER. She was just leaving so she came right over. (She lives across the street from me) I was SO scared and so upset cause I just wanted to watch Makena so we grabbed what we needed and hauled a#$ to the Er. My mom passed a cop on the opposite side of the freeway so she started to slow down I told her to keep hauling a#$ because if we got pulled over they would just get us there faster. I called my Dad to get over to my house so he could watch Makena so Shane and Tam wouldn't have to cancel and I didn't want them to be upset so we fibbed and just said I needed to run up to the U for a med. I don't think they were falling for it but they dropped of Makena and were off. 

Mean while the blood finally stopped about 10 min away from the ER, my sats were still low so I decided maybe I better just go anyways and at least get a chest x ray. I walked in and said I needed O2 they check my sats and they were hovering around 87 so this got me right in a room. So we all know how long an ER stay can be they did an x ray and they wanted to rule out a clot so they ordered a ct scan with a dye. Well the dye is hard on the kidneys so I had to have 2 bags of fluid one before and one after the dye which couldn't go thru the "Thipple" so I had to get a iv in my arm. They ruled out a clot and I wasn't coughing up anymore blood so they sent me home.

I got home and I was exhausted and it was Makenas bed time so we hit the rack! Oh yeah and Shane and Tam found out, the gig was up but I tried to explain I just didn't want them to worry and have fun. 

My mom was also going to spend the night but I told her we would be fine. Well Osc was acting so weird. He didn't sleep at all and was shaking his head and scratching at his collar the whole night so I was up with him and at 4:30 am when I went to check on him his eye was completely swollen shut. He was obviously allergic to something so I gave him a benedryl he was still acting so weird and wasn't sleeping so I sat with him for the rest of the night at 6 am I finally called my mom who panicked thinking something was wrong with me. I told her it was Osc this time and that I needed to stay with him so I wanted her to come over to sleep with Makena just so she wouldn't fall out of the bed or get scared. So my Mom came over and I slept in the other room with Osc and Lills. Around 8 we woke up and Osc still was acting weird but his eye was not as swollen. So around 10 Mon morning I decided I better take him in. So I packed up Makena and Osc and poor Lills was not sure about staying home alone. Osc had hives and was not getting better so the vet thinks he got stung by a bee. He has been stung by a bee once before and had an allergic reaction to it that time as well. He got 2 big shots and has to take an antibiotic, he has 3 bites on his lil body. I feel so bad for him. Shane and Tam came and got Makena around 2:30. as soon as they left it was nap time for me and the babies we were all exhausted. Mon night we celebrated Shanes 31st Bday at MaCools a lil Irish pub. I was so tired and now in a food coma after my huge portion of Shepherd's pie :)

So I left a lil early so I could get back to Osc finish my Meds and get to bed. So it was a crazy 24 hours. 

We are both on the mend, Osc is still a lil paranoid he watches his every step on the look out for either a bee or a spider. I am a lil on the exhausted side and have been taking it easy. My CF doc called and said that he thinks I may have just popped a blood vessel again, it was definitely a scary feeling. The good news is from the last CT scan and x rays I had there seems to be no CF changes. That is always a good thing!! 

Happy St Pattys Day!!!

The Blarney Castle is near Cork Ireland, I went there with my family when I was 13. I climbed to the very top and kissed the stone upside down. I now have the gift of gab or eloquence whatever you prefer. Here are some of my pics from that trip.

For over 200 years, world statesmen, literary giants, and legends of the silver screen have joined the millions of pilgrims climbing the steps to kiss the Blarney Stone and gain the gift of eloquence. Its powers are unquestioned but its story still creates debate.

Me kissing the stone (gotta love my outfit, obviously I had no germ issues when I was lil)

If I had the chance to kiss it today there is no way!!! Supposedly the locals pee on it at night and not to mention think how many lips have been on that. YUCK!!! I can guarantee they don't sanitize it. 

My family had the chance to go back to Ireland for St. Patty's Day 2002. It was right after we had the Olympics in Utah and my Dad went around and collected 12 green Olympic Jackets off the volunteers bodies so that we could all wear them on our trip. There was 12 of us all in the same coat they thought we were a pretty big deal over there :) Below are pics from that trip...

Me on the Big day in a lil cafe by our hotel

My Bro Shane at the Guinness factory! 

Im on a double decker bus getting a tour of Dublin
I loved the all the front doors in Ireland 

Well I told you a lil about my St Patty's day 2007... I had planned this HUGE trip to Ireland with my friend and my Dad was telling everyone about the great deal we found and more and more people wanted to go. So about 20 of my family and friends were all set to go. Well the weekend before the big trip I got really sick. I tried to manage it with oral abx but it was a horrible strain of the flu and it kicked my butt. I ordered O2 for the plane because I was getting so nervous and knew I felt so bad but after 3 days on Abx I wasn't getting any better. So the day we were suppose to leave my family and friends left for the airport and My mom took me up to "My Ireland". I was SO bummed and I told my mom I didn't want any decorations knowing the theme would be St Pattys Day. Well she had already had bags of decorations ready to go knowing that I was gong to end up there and not on that plane. So she decorated and there was green everywhere. My fam called me or should I say DD'd me often, they had a great time. I wish I could of gone, but I was so sick I am glad I made the decision I did. So plans were in the works for something great for St Pattys Day 2008 but I ended up in "My Ireland" again. I am so glad this year to be out of the joint :) on my second favorite holiday! 

Here is some of the group that went in 2007. This pic was in their hotel lobby.

Here is me in "My Ireland" love my Shamrock glasses

This was Oscs first St Pattys Day. I use to buy him shirts for all the holidays he really hated it!

My Lil Irish boy
Everyone Loves an Irish girl!

HAPPY ST. PATTY'S DAY EVERYONE!!!!! 

Don't forget to wear your green! Xo 

A quick update

Well I was visualizing a 40 I really thought maybe with all the working out I have been doing that maybe I could blow a 40. They weren't close :( My Fev1 was down a bit from when I was in the joint last March. So maybe a 40 will be more realistic after I have had iv abx whenever that may be. So for now No joint for me :) so I am glad!!! My doc told me to just keep doing what I was doing and to start Tobi but to watch it since it makes me have some hemoptysis, just a lil streaking tho. 

I wanted them to do an x ray since I have been having some pain and have been pretty sore after the bleed. So I did get an xray and they couldn't pull up my last x rays to compare them to but I have some air bubbles on the right lower side but that might be old they didn't know so they just want to make sure it's not a pneumothorax. So I have to go back and get another x ray on Wed. So I figured I'll still take it easy until then just to be safe, since Im guessing a collapsed lung would really suck.  

I'm off to take a nap I didn't sleep at all last night thanks to snorer and snorett. I have renamed my dogs. :)

Happy Mon Everyone!

Best of 2008!

• Only having to go in the joint once! 

Best record in 4 years. I am so grateful for Aztreonam and USANA, I think they both are making the world of difference, and contributing to the record.

• Starting this blog. 

Meeting all my blogging friends! Love you all!! Even though I haven't met most of you our friendships mean a ton and I know they will last a lifetime! 

• www.Lovetobreathe.com 

My Brother did an amazing job putting it together! We raised over $5,000 for this year for Tatse of Salt Lake.

I want to thank Lissa for making the beautiful Love to Breathe Pendants that many of you have. Lisa tell Brad I am thinking about designing a mens line ;) Also want to thank Everyone that has supported Love to Breathe and helping make CF stand for CURE FOUND!! 

• TASTE OF SALT LAKE

It was our 10th annual year and we raised over 250,000 best year ever!!!! We more than doubled last year. I can't wait to see what 2009 will bring! We are so close to finding a cure I truly believe its right around the corner. So thank you for all your support this last year. I appreciate it more then you will ever know!

• HOT SAKE 2008 NewPort Beach Reunion

The Newport trip is something I did every year growing up with Rickis fam and when we all grew up we stopped going. I think we had a 7 year lapse but when we got back to that beach house we all picked up right where we left it! I had so much fun! I nicknamed the beach house "THE COMPOUND" and I didn't leave the beach or the beach house for a full week!

• Every second that I got to spend with My AMAZING Family and friends in 2008 was PRICELESS! 
  

I am the luckiest girl I know. I have such an amazing support system and for that I am so grateful!

• My Baby Boy Oscar turned 4. 

He is getting so BIG but he still loves his momma. He lets Lills run the roost he is a very good big bro to her.

• My Baby Girl Lilly turned 3. 

She is a lil spitfire and thinks she is the boss! But she still loves to cuddle with me and is very protective of me.

• My Heroes that got a second chance at life thanks to total strangers who chose to give the gift of LIFE!! 

Will, Sara, and Tanya you are an inspiration to so many!! Keep up the Amazing work, I can't wait to see what fabulous things come your way in 2009.

this is one of my paintings... I love hearts!

• Madonna's STICKY & SWEET tour!

BEST TOUR OF 2007 and 2008 most likely 2009 too!!! Since her CONFESSIONS tour was in 2006 and I don't see her touring again for a while.

• The University of Utah Football Team 

We went undefeated all year and will be playing in the Sugar Bowl tomorrow! GO UTES!

My Bro & I on the field

• Being a calendar girl! 

I was selected to be Ms. May on the TOBI calendar for 2008. It was so much fun to have a photo shoot for that. The favorite shot was the one with my babies and I on the grass up in the right hand corner of my blog.

• Turned into a Mac girl... never going back!

Love My Iphone and my MacBook I recommend them. Apple is genius!

• Turning 29.... 

( but really can't wait for the BIG 30 in 2009)

2008 was GREAT!!!! I am looking forward to another great year in 2009!!! I wish everyone Health and Happiness in the upcoming year! Today Jan 1st Utah goes smoke free and Utah will also start Newborn screening for CF, I am so excited! Those two milestones alone in my book are a Fabulous start to 2009!!!

Loves to you all!

Xo

Somer