"Kindness is the mark we leave on the world." - RAKtivist

 "Kindness is free to give, but PRICELESS to receive." -RAKtivist

In a world where we can be ANYTHING, why are not more of us choosing to be KIND? I'm speaking to myself too....

During the pandemic, most of us were/are stuck at home with not a whole lot to do, so naturally a lot of us were probably on social media more, looking for some human contact. Guilty. I found myself on FB a lot unfortunately and can I just say, how sad and downright depressed it made me? SO much arguing and shouting in ALL CAPS about masks, BLM, political parties, athletes, celebs, qanon, etc. Its enough to make someone seriously depressed.

Honestly, being stuck at home was nothing new to Jason and I. It was basically just an early hermit/flu season for us. In that season, we wear masks anyways and avoid places with a lot of people. Finding ways to stay occupied is/was HARD. Connecting with other humans on social media was a great outlet...before 2020. I say this in all seriousness. Even for someone without a history of anxiety and/or depression, all the arguing and disagreements and back and forth would have been a major stressor. Can you imagine what it was like for someone with these already? YIKES.

And yes, I can already hear some of you saying, well just get off then. Easy, right? Well, when you spend most of your time at home already (prior to 2020), because you are not able to work and don't have alot of friends who also don't have jobs or are home a lot, social media is great way to connect with people and with the world. Well, enter 2020. Being on social media was pure torture to my precious mind and soul. Feeling and being attacked for ANYTHING I posted or agreed with because it didn't fit the narrative of a good, Christian woman. Being belittled and called names because I don't share their version of truth. And I'm NOT saying my version was completely true either most likely. Just saying...

I felt very stupid, condescended to, because I wasn't a good arguer...or didn't know the right words to use or say. And sadly, most of the people involved were professing Christians I had known my whole life! I'm sorry, is that how Jesus would respond? (Again, I am speaking to myself too....checking my thoughts and words daily and I still fail). 

All this to say, please be kind with your thoughts and actions and please, please, give grace to us who struggle daily with this. Not one of us is perfect in any way and we need to accept and recognize that.

Stay safe y'all! If ya need me, I'll be entering hermit season come October haha! 

Keep On, Keeping On...

**DISCLAIMER**

I am not trying to call out anyone, by any means. I, myself have done and said some nasty things on social media too which I am very remorseful for. I hope and pray that people who know my heart, know that that is not who I am or what I stand for. People are going to disagree with you and everyone has their own opinions and views. All I can say is, give grace. <3

I am a 6 on the enneagram and very often take things very personal...I am working on that. Work in progress for sure!

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!