I'M READY TO CANCEL MY SUBSCRIPTION TO YEAR 2020...

Y'all, I don't know about you, but I am SO over this year already. This pandemic, the election, black lives matter, the rage and arguing going on social media...It makes me weary, bruh. I am so over it. It's not good for my mental health among other things.

So, I've been pretty quiet on here and because there's literally nothing too exciting or worth posting going on. Besides my port coming out in March and starting full dose Trikafta and going to Florida for a wk in June, I've just been existing it feels like. Sad, I know. 

Some of the guidelines we set up for ourselves during this pandemic - We don't eat out at restaurants (just carry out), I do not go into ANY stores, we don't hang out with people beyond our family bubble indoors, and y'all, let me tell you, it KILLS me. Life has never felt so out of control...and that's including what I'm about to add...

Since starting full dose Trikafta, I have been feeling AMAZING. Like I seriously NEVER cough, I'm rarely exhausted or tired in a CF-y way, I don't get short of breath, I can actually BREATHE. I'm gaining weight like mad, eating everything in sight...So much so that its a chore to actually remember to do my treatments and vest and take all my pills, because I feel SO GOOD. Now, I will say, I DO feel alittle sluggish, but I attribute that to being stuck at home and the weight I'm gaining. But, I am slowly working on changing that. 

All that to say, I AM NOT USED TO FEELING THIS "NORMAL." Like, my brain doesn't know what to do with all this air, energy, etc. I am feeling very unhappy with life and not accomplished I guess. I never realized just how much my CF held me back. Like, tons of women are getting pregnant on Trikafta now...that was always the dream, ya know? Children! But all through my 20s, I was not feeling great for so long and we went back and forth for so many agonizing years and ultimately decided we just didn't feel comfortable having a kid, inevitably for me to die or for our parents to practically raise. Enter Trikafta. Now I am "healthy" enough to make this a reality maybe, but honestly, the yearning just isn't there anymore. I fought it for so many years because I just knew it would be a hard, almost impossible reality for our lives, and now I've just succumb to the fact that we won't have kids. I don't know if somewhere deep down, the actual reason for wanting kids is to 'fit in'? Like, all my friends and cousins have kids, maybe if I did, we'd actually be closer and a part of their lives? Hard stuff y'all. I told you, I wasn't going hold back and that I wanted to be completely honest. 

It's just hard to grasp...like my life looks so different now with Trikafta. Like, I would have killed for this 10 yrs ago. Kids could have been in the picture, perhaps. I just don't know what to do with feeling so good now, like where do I go? What do/can I  do/be now? 

Prayers would be appreciated as I navigate this new chapter. Don't get me wrong, I am ABSOLUTELY overjoyed and HUMBLED to be given this new lease on life!! It's freaking AMAZEBALLS!!!

 

Love you guys and as always, remember, keep on keeping on!

I'M FREEEEEEEEEEE.....for now

Wow, what a time to be alive, right? It feels like we are living in the twilight zone...eerie. Super scary too for those of us with compromised immune systems...staying at home in my own little bubble is the only place that feels safe to me. Laugh, mock, roll your eyes, what have you, but I am not taking ANY chances. 

I say all that and then there I was at the hospital today.....ugh!! A little back story...I was hospitalized at the end of February for a week with low grade fevers and literally NO OTHER symptoms. The "fevers" had been going on for about 3 weeks in spite of doing oral antibiotics for a week at home. So I was admitted with the main goal of running some more tests and ultimately, getting my med port taken out because that's the only thing they could figure out might be causing my fevers. All my blood work and tests they ran looked great or came back fine so they (we) kind of just assumed it was my 13-yr old port that needed taken care of. So I had a picc line (basically a way to give IVs for a couple months without a port) placed to continue IVs and then my med port taken out and they ran all kinds of tests and cultures on it once they removed it. Nothing ever came back questionable, so we still don't know what caused my fevers. I did IV Levaquin and Primaxin (my IV I've been on for 2 years now) and my regular regimen of pills- and a week later, felt amazing, no more "fevers" and was sent on my way haha Thanks body.....

ANYWAYS, my new med port placement surgery WAS scheduled for Monday, March 16th...and in the mean time, I was going to my clinic once a week to get my picc line dressing changed/cleaned. 

My surgery ultimately got cancelled because of some insurance issue and needed to be put on hold til April.

ENTER : CORONAVIRUS 

So, as we started getting cases in Stark County...and things started to hit the fan...school closings, restaurants closing, social distancing encouraged...I was super anxious about having to go to clinic every week just to get my site cleaned. So I talked to my Infectious Disease doctor (the one who put me on this long term antibiotic regimen for something called NTM - NonTuberculosis Mycobacterium) and told him my fears/concerns about going to the hospital more than I absolutely HAVE TO right now. Not to mention, I had already been on these IVs for 2 years now & me & Jason are losing our minds trying to keep up with the regimen...and we came to the decision to take a "holiday" from the NTM antibiotics and get my picc line pulled out to eliminate weekly clinic visits altogether. He also advised me to put off port placement too until this Coronavirus is more controlled and on a down trend. No sense putting myself at a greater risk to catch the virus.

So my picc got pulled today & I am totally done with all antibiotics for now. That also means......I CAN START FULL DOSE TRIKAFTA NOW!!!!!  I am OVER THE MOON excited to be free from IVs 4 times a day for awhile and to also finally be on a FULL DOSE!!! Like, I don't even know how to feel....its AMAZEBALLS!!!

I finally get to take the evening dose of Trikafta tonight (I've been taking the morning dose only 2 days a week, instead of the full morning & evening dose each day), so I will keep y'all posted! WOOHOOOO!!!!

Also, STAY AWAY FROM PEOPLE, PEOPLE!! I don't care if you think you'll be fine if you get it or don't think its that serious! It IS serious for alot of us and while YOU might be okay, wherever you might SPREAD it, will not be okay for the rest of us!!! Don't be stupid!!

Keep On Keeping On....and stay safe!!! 

WHEN LIFE HANDS YOU LEMONS...

...errr, or more lemons than you expected.

Ok, but for real. I'm being ultra dramatic. I am fine, everything is fine. I am very blessed to be where I'm at in life....but I digress...

I told you guys I would be brutally honest with you so here it goes...last Tuesday was my first CF appointment since starting Trikafta in November. I gotta tell ya, I was ALLLLL up in my feels. I didn't want to get my hopes up too high because I am on such a small dose right now, but I also didn't want to discount how I was feeling and how amazing this med really is. I was trying to keep my head about things but also getting REAL excited to see the results and share in the excitement that all my other fellow CFers were experiencing (on full dose). So, I walked into clinic feeling all kinds of excitement, worry, and trying to keep my head on straight haha.

Jason and I kind of wanted to record my PFTs JUST IN CASE they were freaking AMAZEBALLS and because if they were, I didn't want to miss out in that first reaction if they were really great. THAT probably didn't help my overall anxiousness about them either....

So I go to do my PFTs....feeling like I'm going to throw up from all the anxiety/excitement...blew my first number (which is always the worst)....and it was 48% -_-  *cue the "umm, yeah maybe we shouldn't record them" and me already feeling defeated...

I blow my 2nd number (which is ALWAYS my best number) and it was 51%. Ok, not bad I guess. Blew my 3rd and I think it was 50%. OK......I blew a 4th to see if I could get it to 52% but that didn't happen - 51% again. My previous PFTs in October before Trikafta were 49%.

Y'all....to say I had the wind knocked out of my sails is a complete understatement! I had all these high hopes while also not trying to have these high hopes and I let it get the best of me. I was devastated honestly. Hey, I said I was dramatic, right? You were warned haha.

I also got the news that I would most likely have to continue my IVs til the end of March. Previously there was some hope that I would be able to finish them near the end of this month (January) because they had not detected the bacteria in my lungs for a while, BUT, turns out my last sputum culture just took EXTRA long to grow the nasty bacteria (called NTM) so that kind of threw all that out the window. It is getting to be SUCH a chore to mix my IV balls, remembering to do them 4 times a day, grabbing them on my way out of the house, etc. I was just DONE with these stupid balls and stupid IVs!!

So, mediocre PFTs on top of having to continue IVs for another TWO months really hit me hard. I tried to be happy with my numbers, as they were better than October's numbers. but dang was that hard. I was super deflated and sad the entire week. I was disappointed in myself, sad with my numbers, and just having a huge pity party. My CF friends and family kept reminding me that the numbers don't always add up with how you feel and that I just need to be patient til I can start full dose. Those sentiments went in one ear and out the other. I know they meant well but I was just not having it.

But guys....I woke up Monday morning, feeling so much lighter and ready to face these last 2 months of IVs and hit it hard. I've got this!! It's only TWO MORE MONTHS....I can hang on for that much longer and then my reward?

NO MORE FREAKING BALLS and FULL DOSE TRIKAFTA!!!

I'M SO FREAKING EXCITED!!!!

Until next time, KEEP ON KEEPING ON!

TRIKAFTA update & some exciting NEWS!!

Well, the hustle and bustle of the holidays are in full swing and I have been quite busy. Christmas shopping, basketball games, and Christmas programs galore! haha

I love this time of year though...Christmas shopping is one of my favorite things ever! I love picking out special gifts for people that I know they will love! Makes my heart happy and I'm about bursting at the seams waiting to see the looks on my nieces' and nephews' faces when they open their gifts!!

Okay, so on to the Trikafta update- Honestly, not a whole lot to report on that. A little discouraging because most of my other CF friends on it are RAVING about their results and I am a very impatient person! ha!  BUT, I will say, I have noticed that my stamina has improved- like I do not wear out or get tired as fast as I used to. I'm still coughing some though and I haven't really been gaining any weight or anything. I also don't have a clinic appointment until Jan. 14th, so we'll have to wait and see how and IF my PFTs have been affected at all. I will say, my hopes are not very high only because my dosage is SO low at this point because of some oral antibiotics I am on until March '20.

HOWEVER, on that note....so I have been throwing this idea around in my head for awhile and finally just decided to bite the bullet and just do it. I have been wanting to ask my infectious disease doctor (the one who put me on long term IVs and orals) if there was ANY chance at all of stopping the antibiotics sooner, rather than later and going to full dose Trikafta. Now, if you know me AT ALL, you know how much I HATE confrontation...I'm seriously the LEAST confrontational person EVER. haha But I finally put my big girl panties on and decided that it couldn't hurt to at least ASK my doctor about stopping early, right?! What if I didn't and just pushed through 'til March and then he actually says, well I would have been fine stopping early if you would have just SAID something. haha ahhhh!!

Ok, so I messaged him on my MyChart and I'm pretty sure I held my breath until I heard a reply. Which, thankfully, was less than 10 minutes, by the way! LOL Ok, so I open the message, fully bracing myself for a NO and.....
He started out saying that he would prefer me to finish out 24 months of the IV and oral antibiotics, BUT!!...but that being said, your last positive culture for the NTM was January 18, 2018 and he would be okay with me stopping NTM therapy on Jan. 23 2020....and going to full dose, especially since Trikafta is doing wonders for people. !!!!!!! WHAT !!!!!!! *Cue happy tears and screaming and all the emotions......

MERRY FREAKING CHRISTMAS TO ME!!!!! Only ONE more month of these FOUR times a day IV antibiotics and 2 orals, twice a day!! Y'all, I won't even know what to do with all my 'free time'. haha But for real! I am STILL in shock and so freaking excited!

With all that being said, I KNOW Trikafta is NOT a cure and will work differently for everyone...but guys, my friends are gaining weight on this drug, NOT coughing anymore, and saying that they don't even feel like they have CF!!! What in the what?! I don't even know what that would feel like!! My other friend just did PFTs for the first time since starting Trikafta and they have improved by 34% in less than months on it!!!!!! This is LIFE CHANGING!!

Anyways....my Christmas just got SO much better, I wanted to share with you all! I hope everyone has a magical and wonderful Christmas and New Years...now I need to get off of here and do some cleaning for my out of town guests next week!

MERRY CHRISTMAS TO ALL AND TO ALL A GREAT WEEK ;)

Keep On, Keeping On...

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!!