KEEP ON KEEPING ON...

I thought I would clarify something for you all in this post...I'm sure you've noticed that I end every blog post with the phrase, "Keep on, keeping on." Let me explain...

Growing up, EVERY card my dear grandma ever gave me and still gives me, ends in "Keep on keeping on". I never really knew what she meant, but what a sweet sentiment, right? aha Anyways, fast forward to my senior year in high school, on the way home from senior trip in South Carolina...it hits me, oh balls...I need to write my valedictorian speech yet...for graduation that was 2 days away! (yes, I'm that naive and yes i realize that's probably PLENTY of time for normal people to come up with something ha ha, anyways, I digress...) So, I slightly panic and start wracking my brain for a feel good topic for my speech...

I start thinking and thinking and, all of a sudden, my grandma's cards come to mind. DUDE...I think, that would be a really good topic if I can somehow link it to my life. Y'all...it finally clicked. Ya see, my grandma had been referring to my path with Cystic Fibrosis. Keep on keeping on...keep doing what I'm doing, don't ever give up when CF seems to take over and kick me down, JUST KEEP ON KEEPING ON! Cue the tears....OK, maybe only me, but whatever. WOW.

I got some compliments on my Valedictorian speech...everyone was saying how they love my outlook on life and perseverance in dealing with what life and CF have thrown at me. But guys...I never would describe myself like that. I don't know what, but perseverance is just not a word I would use to describe me. It's very humbling, hearing people tell me that. I mean, this life is all I know and I'm just doing my best to keep on keeping on. What else CAN I do?

Yeah, CF blows and ruins my life in different ways...but this is all I know. THIS, is what I'm used to. CF is the worst for sure, but without it, I definitely would not be who I am today or even know some of my best friends! That thought alone, KILLS me. I have met some of the strongest, sweetest, and funniest people ever BECAUSE of CF. (I'm lookin' at you, Kelli and our dear friend Marcia, who has passed.)

Anyways, I feel like I am all over the place with this post and super wordy, but before I end this, I wanted to say that I am so thankful for my sweet hubby, my family, and YOU GUYS. I could not go through this life and battle with CF alone. I'm so thankful for my nieces and nephews...THEY are my WORLD and my driving force to kick CF to the curb and my reason for never giving up. My reason to always, ALWAYS...KEEP ON KEEPING ON.

HAPPY THANKSGIVING EVERYONE!!

Real Life

ANXIETY

*WARNING: REAL rawness ahead...proceed with compassion…

So, as you can or can’t imagine, living 32 years with a chronic, debilitating disease does not come easily. Haha I joke, but this is serious.

Ever since being on Orkambi from Oct ‘16 to September ‘18, paired with my severe hearing loss from a prolonged time on a certain class of antibiotics, I have struggled HARD with anxiety and depression. While on Orkambi, I became a completely different person- and not a fun one. I hated being in groups or large crowds of people, I hated initiating conversation with people I knew WELL-part of it was severe anxiety and the other part was, I couldn't freaking hear! I felt stupid saying WHAT all the time and even when I did, most just would repeat what they said EXACTLY the same way they said it the first time, added with a smile or alittle chuckle. Now, if I wouldnt have had severe anxiety along with hearing loss, it probably woulnt have bothered me much, but I would feel so stupid and ANGRY when people would kind of laugh or joke about it. I mean, come on, I cannot actually help my hearing loss and here you are making a joke! Thanks, now let me go crawl in a hole and cry. It was awful!! And on top of everything, my anxiety was SO high, I started pulling out my hair. Those were honestly the worst 2 years of my life. 

Since finally taking myself OFF Orkambi in September ‘18, my anxiety and depression have very much improved. Depression is all but gone and while my anxiety still lingers here and there, it is nowhere near as bad as it was. I also wanted to add, I TRIED medication and counseling, and while the medication route was a bust, the few therapy sessions I went to were very helpful. 

Anxiety can be such a lonely and vulnerable place to be in. You think so lowly of yourself and it doesn't help when Satan is taking a hold and just spewing lies about yourself into your head. 

“You’re so dumb, you cant even hear”
“You’ll never have much worth bc you dont have kids”
“You don't have a job, what are you even doing with your life”
“No one cares what you go through, they have their own lives to deal with” 
….and ON and ON and ON….

But God, oh my God, He cares. He hears me and sees my pain and gives me the strength daily to stand up to Satan, and say NOT TODAY SATAN! NOT today...You are completely WRONG!!!

I AM A DAUGHTER OF THE KING...I am beautiful, I am funny, I am a wonderful wife, daughter, sister, aunt….EMBRACE IT!!!

I’m not trying to be like, oh poor missy, etc. I promised I would be real, raw and honest and I plan to keep my word. Just keepin’ it real!!

KEEP ON KEEPING ON...

TRIKAFTA!!!

WARNING: I told you guys I was going to be open and honest about everything...inlcuding CF stuff. So, if you are squeamish about medical jargon or bodily fluids...I'M WARNING YOU NOW haha
 
 It'S HERE! It's finally here! I have waited SO long for this….when it was finally in my hands, I had tears y'all. LEGIT tears….I felt so hopeful and humbled and just so excited.

 Now I know I haven't given an update yet and I promise you, I have a real reason. Y'all remember those long-term IVs/antibiotics I mentioned in my previous post? Well, one of them can interact with Trikafta...SO ...I have to take a totally different, SMALL dose until I am completely off these antibiotics...in MARCH 2020. While that’s kind of a bummer, I can already see/feel some small changes! A normal dose of Trikafta is 2 pills in the morning and 1 in the evening...MY dose is ONLY the 2 morning pills TWICE a week, taken 3-4 days apart. Already, a few hours into the first day (last week), I started coughing more and bringing up mucus. Now, I have to mention this- I almost NEVER bring stuff when I cough. My Doctor and CF nurses get exasperated with me because I can never give them sputum samples and they always do throat cultures instead, which aggravates my infectious disease doctor haha. So thats huge in itself already! I also experienced so chest tightness and my chest feeling like, wet and heavy. Eww. haha All of that lasted for like 2 whole days after the first dose but by the 2nd dose, 3 days later, I only had an increased cough and still coughing up junk. 

So not a TON of anything yet because my dose is so small, but still! Guys! I can’t even believe I am experiencing this much! I cannot freaking wait til March and I can be on a full dose!! I don’t have a doctors appointment until January 14th and I’m so anxious to see if my pfts have moved at all. They were 50% last time and that was good(ish) for me, lately! AHHH!

 Keep on keeping on...

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.


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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?!