A Hot Minute

Hey guys!! WOW, it's been a minute… So, apparently in my Orkambi stupor (I will explain this in a later post), i totally forgot I had a blog many moons ago...So instead of creating a whole new name, etc...i am resurrecting the name...on a new blog forum. Welcome to Living to Breathe (2.0) My goal or intention with this blog is to not only keep family and friends (and whoever else cares) up to speed with my health/life, but also to provide an escape for myself and a platform to talk about all the others aspects of CF that you don't normally hear about. I’m going to be real open and honest folks, so I hope I won't offend anyone, but also, im not really looking for approval either. I need a place to vent, share my thoughts, and just DEAL with CF and whatever it throws at me. Sometimes this is easier done here than face to face or in person. Feel free to ask questions, etc...I'm an open book! MOst of you know most of my life story-ish. I have CF and have been fighting it ferociously since I was 2 months old and diagnosed. But here I am today, 32 years old and still kicking. I am on long term IVs at the moment and have been since April of 2018. I have non-tuberculosis mycobacteria in my lungs and while treatable, it takes a LOOONNNG time to eradicate, and in most cases, you never actually totally get rid of it. Its a poop trash bacteria and a bear to get rid of, so my (our) hope is to fight it into submission haha Basically, get it to a point where it barely exists and is not causing me problems. Treatment will continue for AT LEAST a total of 24 months before I will be IV free...While that all sounds daunting and terrible...I FINALLY have an end date- MARCH 2020!!! So, I got this- only 4 more months!! LET’S DO THIS!! Until next time...keep on keeping on!

I have been BLESSED....

With so much more than I deserve...

To be here with the ones who love me, to love them so much it hurts. I have been blessed.

Earlier this week, my niece Ella thought it would be fun to cry so hard that she passed out. Now, normally when she cries, she holds her breath and you just have to blow in her face. Well, this time she just KEPT holding her breath...lips turned blue and she was out. She was out for a few minutes and then started wimpering...but it probably felt like an eternity to her mother. The paramedics came out and checked her out and she was fine. But still, what a horrific event. One that makes you realize anything could happen at any moment.

I have been extremely blessed with an awesome, loving, and supportive family. A wonderful husband, who loves me and accepts me for who I am. Four BEAUTIFUL nieces and nephews, not to mention 9 MORE when I married my husband. A loving and wonderful church family. The list goes on....

I am so thankful for God's blessings in my life. I know I am not worthy of all this and I thank Him each and every day for all He has given me.

I am so thankful Ella's whole episode wasn't any worse than it was. I can't imagine my life without my sweet lil' Elly Belly. She is definitely a feisty, dramatic little girl, but I love her to pieces.


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Health-wise, I am on home IV antibiotics right now and just found out that I cultured another kind of bacteria and now they are adding yet another antibiotic to my already LARGE regimen. But, I trust my doctors and I know they are only trying to restore my health and PFTs to normal. Just frustrating...you can't win with CF. Its a constant battle to stay relatively healthy. But I'm up for the challenge =)

*SIGH*

Yes, yes, I know I am TERRIBLE at updating this thing. Well, as of the last time I posted, I have gained a new niece and have gotten married!! I really need to do better at this...especially with all the free time I have. Anyways, life is quite sweet at the moment. I have been married now for almost 5 months (WOW, crazy) AND will be gaining ANOTHER new niece in a few weeks. =) I am QUITE excited! Being an aunt is the just about the BEST thing ever!

Jason started school just last month, so that has taken alot of adjustment. We don't really see each other too much at the moment and when we do, he is usually busy with MOUNDS of homework. No joke. But, he just changed his hours at work so hopefully things will start looking up. As for me, I spend my days either babysitting or hanging out at my sisters or my moms. Quite the life, I know. But I am very thankful that I do not HAVE to work for us to make ends meet. Its been such a blessing and my health has been wonderfully awesome because of it!!

GREAT STRIDES WALK

The Great Strides walk is this Saturday, May 1 @ McKinley High School @ 10 AM...anyone interested in joining my team? or donating to my team? The walk is to help raise money for the Cystic Fibrosis Foundation- seriously, every penny counts. The more money we raise for the Foundation, the faster they will be able to get drugs out on the market for all of those who suffer from Cystic Fibrosis. Right now, there is a drug in like Phase 2 or 3 (I'm not positive which one) that actually FIXES the defective gene that causes CF! How awesome is that! Up until now, the only drugs available are to help SLOW DOWN the progression of the disease, this would actually fix the GENE!

For those of you who don't know much about CF, here is a definition of what it all entails:
Cystic fibrosis is an inherited disease that causes thick, sticky mucus to build up in the lungs and digestive tract. The lungs, pancreas, liver, and the digestive tract are all affected by CF. It is one of the most common chronic lung diseases in children and young adults, and may result in early death.

Please help us make CF stand for CURE FOUND!!

GREAT STRIDES WALK

Home Stretch....

Where to start? Well, first of all, I am feeling GLORIOUSLY awesome ;) I went to the doctor last Friday and my Pulmonary Function Test (PFT) was better than it has been since September! I'm almost out of the 50s and makin' my way towards the 60s! I am SO excited but also so thankful! For awhile there, I was just in a nasty funk- I would feel great for like 2 weeks, then feel like crap again...but not anymore folks! Hopefully this new healthy thing is here to stay! ;)

Last week, my mom and I and my grandparents and great aunt and uncle went to a Cystic Fibrosis banquet at the Carlisle Inn. It was an awesome night- the food was great(lol), and it was great to see so many people (young adults and kids in this case) living with the same disease as I am. It was kinda cool actually, you (or I could anyways) could totally pick out the young adults with CF. I mean, they are super skinny and have like, a barrel-y chest. You guys with CF know exactly what I'm talking about..lol. OH, and my old pediatric doctor was there!I haven't seen him in MONTHS...that man was one of my favorite doctors ever....(and there are only like TWO). He was actually my doctor up until I was like 20..they kept putting off moving me to the Adult Clinic lol. I am SO glad they did! It was so good to catch up with him- apparently he and his wife had a baby! I was totally surprised...but anyways, enough about that haha.

Now, on to this "home stretch" thing...Jason is coming home in 20 days! 20 days people! Can you believe it?! I can't believe its almost actually here! The last 6 months have been crazy...and they have made me realize that my life is not complete (so cliche', but you know what I mean) without Jason in it. But enough mushy-ness...God has been here, right by my side this whole entire time- I can so feel it. There is no way either of us would have gotten thru these last 6 months without Him.

Well, I think thats all for now...

It's Been TOO Long

My laptop is on the fritz right now, so I have been using our home computer- which just got re-programmed and has like basically nothing on it- lately. So thats my excuse this time for the LOOONG absence. :)

As many of you already know, I went to Germany in December to visit JASON (<3). Ahh...wow, if you ever wanna experience God's beautiful handiwork, Germany is the place to be! It was SO beautiful there...pictures just don't do it justice. While I was there, we travelled to Dresden, Prague- in the Czech Republic, and Berlin. It was just so awesome to experience the old buildings of Prague and the awesome history of Berlin...truly breath-taking. Prague was so cool...the roads and sidewalks were all cobblestone...and there were so many little shops...and MANY old buildings that were so cool...we toured a castle while we were there...it was just...WOW. And Berlin...I mean, I actually got to see part of the Berlin Wall that was still standing. I was just blown away by everything...never truly realizing I was actually there! :) But I would have to say my favorite part about Berlin was...getting engaged!! Oh wow, did he surprise me! I never saw it coming. I mean, he kept telling me he didnt have money and stuff..so I was like, ok, ya know, maybe sometime after he comes home it will happen. So of course he chooses then to do it! Ah, it was awesome. We went to this little park in the heart of Berlin...and there was snow everywhere, so we just ended up leaning against this tree, to talk. Well, he started off saying how he wasnt sure how were gonna make it thru this whole time he was going to be gone...or IF we were...and then how hejust realized that he couldn't stand not having me in his life and that he wanted to spend the rest of his life with me...*SIGH* How sweet....I started crying, and was like, are you serious? I totally didn't believe him, and to this day, I don't know why haha. But he was like, YEAH Im serious! haha :) So yeah...now Im busy with wedding plans until he comes home- at the end of March. I'm SOOO excited!

And, this computer wont let me upload pics at the moment..so yeah...frustrating. :(

Well, I know I am not very good at updating this more often, and I apologize for that. :( But life is very good at the moment....I have just been working and saving money for my trip to Germany- IN 9 DAYS!! <3>Yeah, other than that, nothing exciting is going on. Declan is getting huge! Oh my word....I can't believe he is 2 months old already! And Isaiah is pretty much 2 going on 10....he acts and talks SO big...like dude, stop growing up so fast! Please?!

WOW....

So, today marks the 3 1/2 yr. mark for Jason and I! I can't believe its been that long since we first started dating! CRAZY! It seems like just yesterday he held my hand for the first time and my the butterflies in my stomach just went crazy... :) haha Honestly though, they have been the *BEST* 3 1/2 yrs of my life and I wouldn't trade them for anything! I can't wait to see where the NEXT 3 1/2 yrs take us! I <3>

AND....in other news, my sister, Lydia had her baby! Declan Thomas was born on Thursday, October 1. And he is just the *sweetest* little guy you'll ever meet! (Tied with Isaiah, btw :)

*Proud Parents with Declan :)

*What a sweetheart!

And as for my health, I ma doing great now! I was on IV Antibiotics for 3 weeks and I feel so much better, but the frustrating thing is, that my PFTs are lower than they were- before I started the IVs, I felt horrible, had no energy, slept ALL the time and yeah..well, my PFTs were like 63% then! The BEST they've been all year! And now, after 3 weeks of antibiotics, they are worse, but I FEEL so much better! I think my body just can't make up its mind! Seriously now... LOL

Just Because....

I know, I am so behind in blogging...please forgive me! Not much has happened since my last post, haha. Well, I got a new job- I am babysitting part-time (2-3 days a week) for a little 5 mo. old- her name is Mallory and she is such a good baby! She is adorable! I will have to post pics next time...other than that, nothing. Lydia's due date is coming up (Oct. 3) and I am so pumped to be an auntie again! My world revolves around my little Bubby ;) and I can't wait to have another little baby around!

Health-wise, I am doing pretty good! I went to the Doctor last week and I was feeling awful- I had like no energy, was tired all the time, and my cough was getting alittle worse. So anyways, I go to the Doctor and here, my PFTs (pulmonary function tests) are better than they have been ALL and my weight is up- which is awesome! But I still felt icky- but apparently the antibiotics I have been on since May/June have been doing their job but something else was acting up! So, they put me on 2 IV antibiotics for 2-3 weeks to help me FEEL better. But they were extremely happy with how well I seemed to be doing otherwise.

In other news, Jason is leaving today in a week for Germany- for SIX MONTHS! I am sooo not looking forward to it- but I know how excited he is and he really feels called to do this. So, if you think of it- please pray for him as he travels and as he adjusts to a whole new lifestyle, culture, etc. And also for our relationship, that God would just use this to strengthen our relationship and help us thru the 6 months that he is gone! We would both appreciate it VERY much!

Oh, since Jason is leaving soon, and Lydia just got a new camera- we decided to take some NON ENGAGEMENT pictures yesterday...it was alot of fun and Lydia did a wonderful job!

*This one was one of my faves- although it was very hard to pick a fave! I loved them all!

Well, I think thats all for now- Sorry for taking so long to blog- I will try to do better! :)

*Life goes on....

I haven't blogged in awhile...wow. lol Well, not a whole lot has happened since then. Chad came home for good from CA...he was there playing minor league baseball, for those of you who don't know. He asked for his release...he just wasn't having fun anymore and he was missing so much stuff at home that he could never get back. I am so proud of him for the decision he made. Of course I would have supported him either way, I just can't imagine how hard it was for him. But I am SO happy to have him at home.

Jason and I went to the zoo the other week. We always try to go at least once every summer. I love it! :)

Last weekend, we had a birthday party for my great grandma Kate- she turned 90!! It was alot of fun and I got to see family members that I haven't seen in a LOOONG time. My uncle Tim and his wife Charity were here from CO with their kids, Danielle and Jayden (they have CF too, like me) and then Faith and Dave were here too, from TN. SO it was good to see everyone again. I just wish John and Melody could have joined us!

Oh, and as for my health...well, it couldn't be better! I feel great and it has been almost SIX months since I was last hospitalized. Which is just AMAZING! God is SO good, isn't he? Usually, I am in sometime in Jan/Feb, then in May/June/July, and then again in Oct/Nov. But hopefully, it won't be for a LOOOOOONG time ;) My next doctor appointment is not til Septemeber!