Wednesday, March 27, 2019

Five Feet Apart - My Thoughts

This post isn't all about the movie... it's basically become a brain dump for me. On where my head is with CF...the movie gave me a catalyst to start putting it down.

I'm going to preface this post with the fact that there will most likely be some spoiler alerts in regards to the movie.  If you read the book, honestly, the movie very closely follows it, so there won't really be any spoilers for you. If you haven't seen the movie, you plan too, and you don't want to know what is going to happen, don't read any further.

Chris and I read the book together. So I expected to ugly cry more than I actually did!  As I said before, the movie very closely follows the book, so I think knowing what was coming, I could mentally prepare myself and didn't cry as much as I had originally thought I would. 

I did cry at parts, parts that really resonated with me. Quotes and moments that I could feel as part of my own story, those inevitably brought tears.  A few times they rolled down my face and I didn't even recognize at the moment how poignant what had just happened was, until I felt the hot sting down my cheek.

I liked the movie, as much as someone can like a movie about a terminal illness.  If you have it in your head that it's going to be like A Walk to Remember, or The Fault in Our Stars, you're wrong.  I don't know, maybe you're not.  I walked in to those movies, having read those books as well, but I didn't have the disease the movie was portraying. It felt heavier, less cinematic to me, more real...

This was different for me.



I walked in to a theatre to see a movie trying to pay homage to what I live with on a daily basis, knowing full well it wouldn't 100% stand up to my life and the 30,000 other Americans living with CF.  I knew walking in that what I saw on the screen was going to be a Hollywood adaptation, but also, knowing they had worked with Claire Wineland (a prominent person in the CF community) to try and get things right, I had high hopes. 

In the book, Stella (the main female character) has a lung function of 35% (if you read my previous post, you know that's where I am). Unlike me, she's on oxygen pretty much all the time, and is on a lung transplant list.  Will (the main male character) is also on oxygen, but he has B. Cepacia and is therefore not eligible for a lung transplant.  *While many transplant centers will not transplant for people with B. Cepacia, there are some centers that will, so this was a little bit of a false piece of info from the movie.

Stella is very organized, she makes to do lists daily - my sister, Heather, leaned over to me and was like, "OH My Gosh...She is YOU!" Ha!


                               Chris, Heather and my brother - in - law Shawn all went with me

Will is completely over CF, he's come to the point where he believes he's going to die soon no matter what, so why try anymore. He's on a trial drug to help with B. Cepacia, his Mom wants him to do it, so he is.


I grew up in a time before the Cystic Fibrosis Foundation had all these rules about being six feet apart. My Mom joined a CF Mom's group when I was diagnosed. All the Moms were stay at home Moms at the time, so they got together once a month, YEP - we kiddos came along, and they chatted about how life was going, their struggles, their triumphs.  While the kids ran around and played together...breathed on each other (no doubt).   Once a year we went to a CF conference in Indy.  It was a weekend long thing.  We stayed at a hotel, our parents went to break out sessions to learn about new medicines, treatments, etc.  And the kids?  We played together, we went to our pow wow's, we swam together...we were most definitely not six feet apart. 

I think this was a huge part of why I view CF the way I do.  I made lifelong (some shorter than should have ever been) friendships with people who absolutely know exactly what I go through every single day.  I can't really speak for Heather, but I would guess that being with other Siblings of CF was a major plus for her. She had other people to talk to about what it was like to have a sibling deal with things she doesn't have to, and how sometimes it's could be a bummer and hold her back from fun stuff if I was sick.

So, while I understand the point of these cross contamination rules, I don't want to say I don't care, but honestly, I think it's almost more detrimental in some ways, than helpful.  If someone else doesn't want me within 6 feet of them because they want to follow that rule, I will respect their wishes, but my dear sweet CF friends, if you need a hug, and I am there, please know, my arms are wide open and my airway is facing the opposite direction!


Okay, back to the movie:

They explained what CF is, cross-contamination, and a few things that people with CF go through.  But it was all based in the hospital.  I wish there would have been more info about how those things are done when you're at home, and healthy.  Treatments don't stop when you get out of the hospital.  They start day one of diagnosis and continue daily until you leave the earth.


I've mentioned my regimen on Facebook multiple times...



Not everyone has a g-tube, I don't, but some do.

They didn't mention that some people have CF Related Diabetes, and how this brings a whole other bag of tricks to deal with it.  I'm on an insulin pump because of CFRD.

They didn't mention that after a while, some peoples bodies become resistant to the antibiotics they're on and there aren't a lot of antibiotics out there to treat our specific bacterias. 

They didn't mention that many of the primary IV antibiotics used can cause Ototoxicity, which means, you end up with hearing loss from them.  I now wear a hearing aide in my right ear daily...Thanks Tobramycin!

I don't bring my own comforter set with matching pillows, decorative lights, mug of pens, and art work for the wall of my hospital room.  Others might, but dear Lord, that's a LOT of crap to pack up after a hospital visit.

A respiratory therapist never came in to the do their treatments either.

I haven't been inpatient since 2005, so maybe things have changed.  Maybe if you're constantly in and out of the hospital you do these things and have more independence with your care...I'll plead the 5th on this one.


What they did show...

 You become friends with the other people on the floor...patients and nurses, your roommate (if you have one).

You roam around the hospital together and find things to do and get in to that you probably shouldn't.

That stuff is true.

I used to do wheelchair races with other kids.  We'd go in a big room and there would be a tutor/teacher that came in every day and they would help us with our school work.  Other times we had crafts and snack times, etc. I'd take walks through the hospital, find the library, ride the glass elevators up and down. 



The isolation is also true.

Heather mentioned how the parents/families didn't seem to come much and that surprised her. 

You all know me and my family, that is NOT at all how my family would ever handle an inpatient stay with me. In fact, the only time I really remember not having someone with me every day or night, was when I did an enzyme study the summer after I graduated high school.  I wasn't even sick, I just had to stay so they could watch my input and output...and I was flabbergasted that my parents weren't going to spend the nights with me.  In fact, I think they went to the lake while I was in...

But if I was sick, Mom or Dad or a grandparent was always there.  Heather even came and stayed with me a couple times. 

But even with a very supportive family, there can be some isolation...

As Chris said in the middle of Central Park in NYC, "I live with CF every day, but I don't LIVE with CF every day."

It can be isolating to be the only one to know what it's like to live with these lungs every day. 

To look at a flight of stairs and question what your lungs will feel like after you climb them. 

To wonder if you can, in a year, go on a mission trip with your husband, because it's harder to breathe when you're hot.

To think you may not be able to continue working full time or at all, because you don't know what the future holds and you want quality as well as quantity.


At one point in the book and movie, you mourn Stella's friend Poe and her sister Abby. 

Survivor's guilt is real ya'll.  In more ways than one, I'd argue.

I know people in the CF community that have passed away.  Friends, fellow Cysters and Fibros.  Some I knew personally, some I knew only through CF and connections we made on social media. 

You feel guilty because you're still here...and they're not.  Why do I get to be here and continue my life...why not them?

Then there's the guilt I feel for those still living, but who are doing much worse than me...

I feel that.  It may sound stupid, but it's true.

I'm in lots of groups on FB and people are posting daily about how they're back in the hospital for the 6th time already this year (it's still March people...the 3rd month of the year), or they're sharing information on a 6 year old waiting for new lungs on the transplant list. 

In 2 months I will turn 39 and I'm still kicking it on the 2 lungs God blessed me with at Birth!  Why me, and not them too?


They showed the rage that comes with the frustration of doing everything you're supposed to do and still getting sick. 

CF is a progressive disease.  Yes, the new treatments out are tremendous and have given people back function they had lost long ago.  But they're not a cure. And no matter how well you stick to your regimen, and do what you're supposed to do when you're supposed to, you still get sick at times. 

Poe dies and Stella trashes her room.  Out of anger for this stupid disease that neither of them can stop from progressing forward. 

I get it. 

All too well, I understand what it's like to sit and do treatments, time sucking treatments, and still walk in and find my lung functions have dropped.

You're supposed to see positive results when you do what you're supposed to, right?

CF doesn't necessarily work that way!  It Sucks!

There are many people with CF who deal with Depression and anxiety on top of all that CF gives them already.

I have spent my life telling people that I have CF, CF doesn't have me.  I won't let it get in my way.  I won't use it as an excuse.  It's true!  I believe all of that.

However, I also recognize that at some point I have to admit that there are limitations because of it.  And that is HARD!



So, I guess that's where I'm at with the movie...all over the place.  HA!

I liked it. It gave an okay representation of CF, but there was so much missed all at the same time...mainly because everyones CF story is so different.  But I didn't hate it and I didn't feel like it made CF look like a breezy walk in the park.

If nothing else, I hope it helps people learn a little more about CF. I hope people that meet someone with CF will at least be able to say they've heard of it, and feel they can ask questions.

So, if you have questions, feel free to ask, I'm an open book.

Monday, March 4, 2019

Thirty-five Percent...

Do you ever get news that just sort of Rocks ya?

Not really in a good or a bad way...it just throws you for a loop?

Like, you were rolling along and all of a sudden you find something out and you're like, "Huh? Really? I never would've guessed that?"

I'm talking about news about yourself, by the way.

I feel like I once wrote a blog post that started very similar to this.  That time it was news about stuff you had lived your life thinking could never happen, and then all of sudden you were told something was a possibility.  That time I was talking about Dr. Eigen telling me that it may be possible for Chris and I to have a baby biologically. 

This time, it's about my lung function...


At church on Sunday, we were ripping our tape measures, and mine started at 38.5, and ended with the normal life expectancy for a woman, of 81.  This was supposed to show us how much "time" we potentially have left on this earth.  We were to be thinking about what impact we want to have with the time we have left. How will we make the time we have left meaningful?

I sat there and looked at that tape measure and I paused...


Thirty-five percent


Maybe because I'm approaching 39 this year...

Maybe because I know that the median life expectancy for someone with CF is now 44 years old...

Maybe because that number is the lowest I've seen and I pray it was just a fluke...

Maybe because in some ways I feel like I'm in denial about that number and I tell myself I don't function there...

Something had to be wrong with that machine in December, right?

Maybe they didn't calibrate it that day?

I mean, do people with a lung function at that number work full time?  Do they "test" in to the advanced workout group?  Do they have 98% SpO2 saturations when checked, on room air oxygen?  Do they go over a year without an exacerbation that lands them in the hospital or on Home IV? Do they work full time while they're on Home IV?

Do they?

I've always been somewhat of an exception to the rule when it comes to my CF.

If it works for others, a lot of times it doesn't for me.

I pride myself in not letting CF hold me back. I like that I can proudly and boldly say, "I have CF, it does NOT have me!"


I've been thinking about my life, or rather, my mortality, since that appointment in December. 

The quality of it vs the quantity...

The meaningfulness of it all...

The changes I am facing so that I can have both quantity and quality...

I paused and I thought, am I looking at the right measure? Should I have ripped this sucker way further down than where I did?

Then I added 5 more centimeters because I remembered Chris and I are going together at 86 of Euthanasia.

Because thirty-five is just a number on a computer.

Saturday, January 16, 2016

I'm back!

It's been a while...and I've missed you.

Apparently some of my friends have missed my blog too, because I mentioned it at one point on Facebook and they were all, "YES, please blog again!"

So here I am.

I'm not even going to try to update from the last time I blogged.  It's been too long.

Life is good.

God is good.

And I'm excited to be back and see what 2016 brings us!

Thursday, March 13, 2014

It's been a year!

It's been a year.

A year from the call that turned our world upside down.

A year exactly, from the day we brought our sweet little Bert Gert home.

It's been a year, since Chris became a Dad.

It's been a year, since I became a Mom.


 It's been a year!


It seems like longer, but at the same time it seems like it was just yesterday.

Our lives have changed so dramatically.

I've learned a lot this past year.  

Want to know the Number 1 thing I've learned?


I still have NO clue what I'm doing as a Mom!!!!!


Yes,  I know more now, than I did a year ago, but I still don't really know what I'm doing. 

And to be honest, I think it will always be like this to some degree ;0)

Something I do know...

I know how to be B.G.'s Mom.  

I know what she's saying when she asks for "mulk", or for "takes", or tells me "I Paya'!"  

I know that "Bubbles" means she wants to watch Bubble Guppies.

I know her favorite person in the world is her Papaw!

My heart skips a beat when she yells for the duckies and runs to our bedroom to get them.  (I sincerely can't wait to get a call from her teacher that says, "B.G. told us her brother is, Sexy!?!?!?!?!")

I am the proudest Momma on the planet when she prays aloud with us at night or at the table, says "Amen," and comes up to me at random times, grabs my leg, kisses it, looks up at me and says, "I yuv you!"


There will always be new things to learn and discover with her.  

We will always have moments that frustrate us, that drive me to run into the bathroom, shut the door, and pray that we can make it through the rest of the afternoon.

We'll always be reinventing how our days look, because one moment she'll love something and the next she will want nothing to do with it.

We'll constantly be growing into our roles, as Mommy and daughter (and Daddy for Chris), and what our family looks like.  

But the best part of this is that we will get to learn and grow and do all of these things together.


It's been a year...

It's been a GREAT year, and we're so thankful we get to call ourselves a family!

Friday, September 6, 2013

Heavy Heart

As usual, I got up this morning after my 4am treatment, turned on my phone and started my morning routine.  

But this morning, instead of all the usual happy things hitting my facebook feed, I saw quite a few sad posts.

Posts that weren't from my friends...they were from friends of one of my Facebook friends.

The CF Community lost another precious life.


I didn't really know him.


I never actually met him.

We never spoke outside of facebook.

But my heart hurts...

for him...

for his family...

for his fiance...

for the CF Community in general.


As I get older, now that I'm a wife and a Mom...my health and making it a priority is very different than it used to be.

And not that I never thought it wasn't a priority before, it certainly was.

But I see things a bit differently now.

I probably shouldn't.  

I should have seen my health, and the things I do as being important for other reasons before.

But I'll be honest.  

Before, I looked at what I did (or didn't do) to maintain my health as something that was only going to hurt me, no one else.  

It's true that my failing health would primarily hurt me, but secondarily it would hurt my parents, sister, brothers-in-law, sisters-in-law, nieces and nephews, husband, and now Bert Gert.

Recently I've been very intentional about doing everything I'm supposed to do.

Since my freshmen year in college (when I went in the hospital after getting UBER sick), I have been extremely purposeful about doing my treatments daily.  It started at once a day for 30 minutes, then I bumped it up to twice a day...then my timer on my vest broke, so it was 45 minutes twice a day.

If I was sick, or coughed a lot, I'd do it more.  

I did my inhalers and my nebulizer treatments as well.

I was diagnosed with CF related Diabetes my last year in college.

I've never been good at monitoring this.  Partly because it really only seemed to be an issue when I was sick....and partly because, Seriously????  It's just one more thing to have to do.

So I've been very intentional now about taking my enzymes when I eat, and checking my blood sugars and taking insulin now.  

I'm playing softball with a church Co-ed league, and I'm working out twice a week after school on top of that.  I hope to increase this once I get used to that schedule to begin with.

I'm pretty much a HOT WET MESS...but I'm trying to work on that.

In general, I don't feel bad.  

I think I'm pretty "healthy" for a 33 year old living with CF.

But I don't always do the best job at maintaining the best health for me.  

I'm trying hard.

I have to!


Please don't misunderstand me...in no way do I mean to imply that Kyle didn't do what he was supposed to do, or should do to maintain his health.

I know he did.

CF is a part time job to begin with. 

And even when we do EVERYTHING, exactly right, and go above and beyond....

We still get sick...

We still cough for a few hours during and after treatments (at times)...

We still have to go on IV medications...

We still have to go in the hospital at times...


And that SUCKS!!!!!!!

There's nothing worse than feeling like you're on top of things, doing everything you're supposed to, trying your best in that moment, and finding that your Pft's have dropped.

CF tries everyday to break us down.

to suck the life out of us.

It never stops...

So we can't ever stop!


Dear Kyle,

  I didn't know you personally...but we had a special connection that only people with CF have.  We know personally the ups and downs of living with CF.  Fighting every day.  Fighting on the good days and fighting on the bad.  Doing whatever we can to breathe a little easier, to put on a little weight, to live as normal a life as we can, in spite of all the abnormal things we deal with that others don't.  I'm sad for you, that your new lungs didn't work out like you, I, and everyone in this special community hoped they would.  I'm sad for your family, that they've lost someone so very precious to them.  I'm sad for the CF Community, and that we have lost another wonderful member of our family.  
  At the same time, I'm so happy that you are now breathing easy.  I'm so happy that a nasal cannula, nebulizer, percussion, FEV1, and a million other CF related things are no longer a part of you.  I'm so happy that you now have the ability to do everything your gunk filled CF lungs tried to hold you back from.

Breathe easy my friend.  Run, jump, dance, paint, enjoy the pure oxygen and deep, full breath of life that you now get to experience.  Oh...and put in a good word with God, ask him to bring a cure fast.

Love,
Holly


To help find a cure for Cystic Fibrosis, please visit www.cff.org to make a donation.
 



 

Tuesday, June 25, 2013

Update our life as 5 (I include the ducks in that number)

As you can imagine...life has been a bit of fifty shades of Cra, since Bert Gert joined the fam.

I'll be honest, this hasn't been an easy transition, probably for all of us.

But at the same time, because of meeting her before, and having visits, I think it was as good a transition as anyone could ever ask for. 

I don't know about Chris, but I would say the transition was probably harder on me than on B.G.  We went from no kids, to a walking toddler....Yikes, how'd we do that?!?!?!?!?!

But, she is an amazing girl, and I couldn't be happier to be her Mommy.

I haven't updated in a while because, well...

It seems like there's been so much that has been going on, but also it seems like there's not a whole lot new to tell you all at once.

We've been continuing to get used to life with a 17 month old.  What that means for us as parents, and what that means for her as our daughter. 

I have to give MAJOR props to my super HOT HUSBAND!  He is a SUPER HOT DAD too, and he's doing an AMAZING job!  I couldn't have asked for a better partner in life, and I couldn't have asked for a better Dad to my children.  We are most definitely a team, and as Brandon reminds us often, we are unstoppable.


So, the most recent news...

At the beginning of June was supposed to be termination court.

Turns out it was scheduled for 1/2 a day, and not a full day...so they all went, but just to reschedule, and to schedule a mediation date.

Mediation means:  We all (with attorneys) sit at a big table and say, here's what we are willing to offer you, and in return you (bio parents) sign over your rights.

Or so we originally thought.

Turns out, they don't sign over their rights, they just sign consents that B.G. can be adopted.

SO...Chris and I decided not to offer anything at mediation.


Bio parents signed general consents anyway!!!!


You're totally thinking this is a major Woo Hoo, right?  

It sort-of is...

Because this doesn't mean they've terminated rights...they still have parental rights.

Which means, we still have to ask permission to cut her hair, or take her out of the state, and they still have visits with her...until rights are terminated.

Rights won't technically be terminated now until the finalization of the adoption.

Which won't be until September at the earliest.

However, CHINS (Child in need of services) court is scheduled for this coming Thursday, and because they signed consents at mediation, it is being petitioned that all services and visits be stopped.

We are working our way to finalization, but we still have a few roadblocks to get through.


So that's the update.  Please keep praying for the whole situation.  For B.G. and us with these (hopefully) last few visits, and that court on Thursday goes well. 

Thanks friends and family!

 

Wednesday, April 10, 2013

Right Now...

~ I'm sitting in Starbucks, waiting on Bert Gert's family visit to get over, so we can go home and go to sleep.

~ I'm feeling so blessed to be this sweet baby girls Mom, for as long as God allows me to be.

~ I can't wait to pick her up and see her smiling and waving excitedly that I'm there.

~ I keep replaying in my head, when the supervisor came and got her, and she turned around, looked at me quizically, and then smiled and waved at me...her way of saying, "I'll miss you!"

~ I'm hoping my HOT husband is feeling much better.

~ I can't wait for TOBI inhaled powder to go on the market so I can say "Good Riddance and good bye" to TOBI (via nebulizer) FOR-EV-ER!

~ I can't believe it's been almost a month that Bert Gert has been in our home.

~ I wish my HOT husband was here with me.

~ I'm glad it's Wednesday night and I only have 2 more days to work this week.

~ I'm thanking God...for the blessings in my life...and I'm recognizing that He is the one who has provided me with such a wonderful life.