Wednesday, February 8, 2023

it's beginning to look a lot like…2019 😬

I wrote this blog on January 10, 2023, sorry for the late post.  Maybe I will actually keep up with this thing.  SO MUCH HAS HAPPENED since 2019 😬 and I realized I basically haven't shared anything.

January, a time of fresh starts and new beginnings.  Unfortunately over here, it’s looking more like a rewind.  
After successfully avoiding covid for the past 3 years I was finally caught by the little devil.  And well it pretty much took my life shook it up, melted it, cut it into pieces baked it and then handed it back.  To say the last few weeks have been rough is a bit of an understatement.  

My life today looks a hell of a lot closer to my life 4 years ago instead of 4 weeks ago.  
Im laying in my bed wide awake because  listening to the song of the sick.  The rhythmic breathing of the oxygen concentrator, the hum of my feeding pump and the occasional beep if I lay in the wrong position.  

My clothes no longer fit, I can't keep up with others, I spend my days napping and watching movies, dreaming of the day I can get up off the couch and vacuum my own house.  Once again I think of my living room while I sit on a couch that is not mine and live out of a suitcase because I can't be on my own for now.  and I realize, Ive been here before.  4 years ago.  But as I struggle to take a deep breath and realize it might be just a tiny bit easier than it was yesterday.  And as I set the oxygen aside I realize I haven't been here before.  Before there was no getting better.  Before the weight wasn't coming back.  Before the apartment was getting cleaned out.  Before I was dying this time, this time Im going to live. 

I do realize that the fact that I’m typing this right now means I didn’t actually die and did live that time too but this time is soooo different.  

This time I can choose to work hard, jump back into life and get better.  Or I can just give up and wait.  Last time I had no choice.  My body was actively attacking my lungs and no amount of laps or healthy meals or willpower or even medication was going to change that.  The only way forward was to give up.  To let go of those lungs and do it again.  But this time, this time I can actually make a difference.  

And you know what? I’m finally so ready that my changes aren’t going to stop there.  It may have looked like I jump full speed ahead into life but the truth is I don’t.  Most of the time I let life happen.  I let fear and doubt get in my way.  But, NOT. ANY. MORE!  

I'm the damn leading lady NOT the best friend and it’s time I really become her.  (Pst…. You are too! 😊)

So this year, 2023 let’s make it the year we get off the couch, we take those first few hard steps, we do the hard things, we call the friend or plan the trip, we keep walking and pretty soon we realize, it’s not 2019.  We didn’t go backward.  We took everything we have been through shook it up,  melted it down, cut it up, and baked it into something truly wonderful!  And this time, for the first time, we really are truly, truly LIVING!  

Partial Blog from March 30, 2022

A Little Bit Crazy

Okay first off I owe all of you an apology.  Life gets busy, people get sick, a little depressed, and blogs get forgotten.  A lot has happened in the last 3 years (can you believe it has been that long, I sure can't) and not just in the world but in my own life as well.  I will fill you in overtime but the quick version is, I moved back home while waiting to be sick enough for my second transplant.  I ended up getting it in October of 2019 and moved back home right in time for the world to shut down.   I spent the next few months taking it easy and working on healing.  So far I am doing well, these lungs are holding up and aside from being more tired and worn out than before I am doing well.  And that is the quick version so let's dive into our story for today.

What it's real?  Have you ever asked yourself this?  Do you ever wonder, have you ever not been able to tell?  I have.  3 times now.  The most recent being 5 days ago.  

It is a pretty scary experience.  This time was the worst as in my "dream" world I went from being in the car to what I thought was a pretend hospital room.  When I came to and was still in the "pretend" hospital room saying I was confused is an understatement.  The details aren't really important but this experience more so than the others showed me how bad our mental health care is in this country.   I needed psychological help and it was not given to me.  Instead, I was put in a room alone without anything familiar to hopefully come back.  When I did my questions went unanswered and I could not figure out why I felt "awake" from my dream yet was still sitting in the room it took place, rather than in the car where I was supposed to be. 

Monday, March 4, 2019

confession time

So I'd love to say the reason I haven't posted in a while is because I've just been super busy, but I can't because...well... I like to keep things honest on here.  Sorry for my delay.  There has been no post or the rest of the hell week videos (there are two here and maybe more by the time you are reading this...maybe...hopefully) because quite frankly I really did not feel like it.  To be completely honest I have not really felt like doing much the past few weeks.  I am in a weird kind of place in life and I am having a harder time at it than the first time I found myself in a similar space.  In christian circles, especially as a kid the question always comes up if you could spend a day in heaven but then come back and finish your life would you.  No I would not.  It's the same reason I always hated that song about it being better having 1 day in God's courts than 1,000 elsewhere.  I beg to differ.  If you only get one day I'd rather stay where I am at because at least I don't know what I'm missing.  Well jokes on me because I got that day and now I'm back to my days of elsewhere and elsewhere has really lost its luster.  (no I did not get a glimpse of heaven, stick with the metaphor people!)

Anyway, I'm guessing you all are here for a long awaited update and although I feel more like rambling on about my personal thrilling day to day life, you probably have your own thrilling personal day to day life to get back to.  (This will likely be a rambally post so when you have the info you came for feel free to leave! Like you need my permission, psh) (I feel like you all are really missing out because you are not getting to hear this blog spoken the way it is intended, I try the best I can and if you know me well you might have an idea but, let me tell you, y'all are really missing out) (Maybe I should start hosting blog readings) (Or I could..... see I warned you.  Rambally)

Okay for real this time here is the news.  Well today I came to Duke for a check up.  I haven't had it yet so I really know nothing except the same old stuff as last month, which I will reveal after this story.  (I should definitely hold it off as long as possible to keep you reading, right?! After all isn't that what every show ever does, it's a classic way to boost audiences.0

Sooooo.... on my flight today there was this one guy saving a seat and.... okay sorry you can't say I didn't warn you.  I guess you can just say I am feeling a bit happier and more like myself again and I find typing this as a way of therapy.  Did you know that people who commit suicide usually do it as their mood is going up?  It is because in the depths of their depression they don't even have the energy to do it.  It isn't until things start getting better that they have the energy to actually kill themselves. So you see this is a way better option.  (PS I am not in anyway suicidal, this is not a call for help, I'm really just kidding around with you all for fun, like a serial killer and his victim ) (that was a joke too) (AH sorry probably not things I should be joking about, I probably shouldn't be blogging late at night while I am sleep deprived and my mind is running a mile a minute) (but it's too late for that now!) (I do realize this is a computer and I actually could change all this and make it more socially appropriate and I might)  (However, if you are reading this now, I clearly did not) (I promise I am completely sober...for real...maybe this lack of oxygen is getting to my brain)

Okay for real here we go.  So after my eval at Duke which went off without a hitch minus the day of running around the hospital because nobody could figure out where I was supposed to be (see here about 11or 12 min in).  I waited anxiously for the results.  Since I am being honest today, I was extremely anxious for the results which was dumb because I pretty much knew what they would be and they were exactly what I thought. Let waiting phase 1 begin.

Talk with you later

Sorry I couldn't resist.  So after discussing my case the wise minds at Duke have agreed that I am a good candidate for a re-transplant but that I am not in what they call "my window" yet.  So what does this mean.  Basically it means that my lungs are not sick enough yet that a transplant is my best option right now, instead the doctors feel it is better for me to keep living with my current pair.  Now I want to clear up all the confusion, take everything you know about health and through it out the window right now, no seriously do it.  This is not exactly good news.  In this case I want to be a little bit sicker.  Not sick enough that I am past my window but in that sweet spot where I am ready for transplant.  Why, would anyone in their right mind want to be sicker.  Well first off we already covered that, see above ramble, I am likely not in my right mind.  Okay all joking aside I want to be sicker as my lungs are at the point where I have a fairly low quality of life at my current state.  Being a 27 year old who a few months ago lived alone with a full time job I enjoyed, an adorable sweet puppy friend and this strange guy who came over often and said something about dating :P, now having none of that (okay I still do have the puppy) and struggling to breath everyday is quite the challenge.  It goes back to how I started.  I got the taste of "normal, healthy" life and then got thrown back into the life I knew before my transplant and I am having a hard time adjusting.  (see I told you it would all tie together, okay maybe I didn't say that but I was thinking it :P) See I am a pain avoider (hard to believe with what I have been through but it is true) and I like the easiest most painless route that leads to what I want, because you see I am also selfish.  What I want is to be able to be independent again.  What I want is a decent income that allows me to meet my other desires (see number one),  What I want is to move out of my parents house and to put my stuff that is currently in boxes back on my shelves and walls and be surrounded by the cute things that I like (again see number one), what I want is to be able to live my life and not have to think about how much walking will be involved or how tired I will feel or what the altitude is or.... (see number 1?  not sure if it really applies here but I had to stay with the joke right?) . Anyways basically I am having a hard time accepting and finding the joy in my current situation on a daily basis because quite frankly I'm bored out of my freaking mind!!!

So I figure I need to change this.  I have started finding things to do little by little.  I am also teaching a bit more so I have both more income (barley) and more time filled.  If you have ideas for things I could do or are involved in something I could join let me know!  I need more people in my life, it gets pretty lonely sitting at home with my dog all day, no mater how much I love her.  Now here is the trick... it can't require any sort of commitment as my lungs can deteriorate in a matter of days and it's off to Duke, so like a part time job sort of thing is out of the question.  (wouldn't that be great, yes I'd love to take the job, 2 days in, so actually I'm sort of dying and need to quit now and by now I a mean now not like in two weeks, Bye! Plus there is the whole very minimal energy thing) . So here is what I'm thinking, book groups, game groups, craft groups, sit around and talk about stuff groups, young adult groups (or not so young but still young adult group, I'm not really sure where I fall anymore being in my late 20s, AHHH who am I....sorry I'm getting ahead of myself that is a whole other post :P) Basically any sort of thing I could do that does not require a lot of physical activity but provides something to do/ social interaction/ maybe some new friends.  So if you know of something hit me up!

So anyway that is my life in a nutshell wrapped in a bunch of unnecessary layers topped off with duck tape so by the time you finally open it you are so annoyed you don't even care anymore about the nut on the inside or remember why you were even trying to get it open in the first place.  See.  Rambally.

Well hopefully this helps answer your questions.  I'm honestly a little lost myself so here is a quick recap.
Blah blah blah......good candidate for a second transplant....blah blah ...... not time yet....... blah blah blah blah.....Duke will keep a close eye to catch me before I get too sick...blah blah...bored out of my mind, need help! (huh I guess this is a cry for help, would you look at that :P).....blah blah blah blah blah!

So until next time......

P.S. Many people ask if I will get better, the short answer no.  The best we can realistically hope for is that I stay the same and get a little bit more time out of these lungs before I get my next set (ultimately a good thing, not what I personally want).  God has done miracles before he could do one again and cure me, which would be great, but I'm not holding my breath, I couldn't even if I wanted too I don't get enough air in.  Yes, I know that maybe my unbelief is preventing my healing.  Somehow I don't think that is actually how God is and I know he will use this time, no matter how much I hate it and fight it, for something good.  Because He is good and He works all things together for good.  Not all things except the things we fight him on, or all things except the things we don't face joyfully.  Nope all things, so I gotta just keep on keeping on and trusting in his crazy and somewhat comical plan.

P. S. S.  Don't worry I'm still my usual happy joking self for the most part.  When/ if you see me will I be all sad and mopey?  Probably not.  Am I just faking my happy attitude? In most cases no.  I am simply as the tittle suggests being honest with you all.  I usually try to keep things positive but today I am letting you into a glimpse of one of my "days".  You know, we all have them and today I'm sharing mine.

P.S.S.S I should probably go to bed.  It is way too late and I'm sitting in a hotel room typing in the dark because my dad is already asleep, some people are smarter than others.  But here is the deal, I wasn't kidding about being at Duke (or the airplane story) and we are two hours ahead of home, add that to the fact that I have been having trouble going to bed before 5 am the past week and well... I am WIDE awake.  (That whole staying up until 5 am thing may have something to do with my fun Chinese friends who make me money.  Wow!  That sounds super odd/ sketchy, it's not trust me.  I'm planning a post to explain that maybe later this week, so I don't want to bore you with the details here, plus you know readership right? gotta build that suspense!)

Okay, for real I'm gonna try to sleep, wish me luck!
Good night  you blogollowers you

PSSSS okay I promise I'm almost done.  I actually had something I felt was important to say that I can not remember at all now (silly med side effects). So this really is the last thing.

Good night!

Wednesday, February 13, 2019

Trying Something New

Hi guys!
  So hell week is over and I am back home!  I decided to try something new this time around....I made a video of my hell week experience.  Head on over to my youtube channel to check it out!  So far I have part 1 up but stay tuned for the rest as I will be getting that up soon.  For those of you wanting a more traditional experience (is blogging even traditional?  Maybe truly traditional would be coming over to my house and asking me about it.  I'm down for that!  Come on over!) you can read my first experience through hell week here.  For hell week 2.0 go here.

I'd love to hear your thoughts on the changes, feel free to comment here or on youtube.  I hope you enjoy it!

I also would like to do a Q&A video so send me any questions you might have, seriously ANY question, transplant or health related or not, if you want to know it, ASK IT!

Until next time!

Thursday, January 24, 2019

Stunt Doubles Wanted

Hello blogollowers,
Its that time again: Update Time!  Things have been pretty quiet the past few weeks as far as my medical journey goes which has been a nice little break.  I finished my Rituxan treatment about two weeks ago and do not go to Duke again until next week.  I have however been pretty busy especially for a person who sleeps about 18 hours a day.

What have I been doing?  Traveling of course!  Two weeks ago I got the opportunity to spend time with my stepmom and some of her family in Portland.  It was a lot of fun and a nice change of pace.  From there I flew to Phoenix to work on packing up my apartment as I am officially moving.  While in Phoenix I went to a tiny home show and got to look at several tiny houses.  I am currently in the process of planning my own tiny house, but that is a topic for another day.  It was fun to see the houses and get a better feel for them, it also helped to inspire me to get rid of a lot of my stuff while I was packing.  Nothing like picturing yourself living in 200sq to get you to cut back on stuff. 

After Phoenix I got the opportunity to go to Florida for a few days with my mom and some of her family.  It was super nice to be in warm places for a week and finally thaw out a bit.  I am not used to this cold Colorado weather anymore. 

I had a good time on all my travels and it was nice to have something to do.  It also helped me to feel better getting out of the house and being a little more active.  When I am home I do not do a whole lot, I can definitely tell that my energy level is greatly reduced and I end up having to nap about half the day.

Next week is the big week.  I will be flying off to Duke this weekend and will be out there for the next week and a half.  I am most definitely not looking forward to it.  The tests I am having to do are not my most favorite thing in the world.  The worst offenders are the Barium Swallow and Manometry test.  Both of these tests have to do with the digestive system and as we have previously discussed, this system and I are not really friends, so it is only fitting that it would have the worst tests.  Though, the badness of these tests has nothing to do with my silly digestive system, they are just plain unpleasant.  The first test, the barium swallow, involves drinking a thick, chalky, artificially sweetened, radioactive concoction while pictures of it moving through my system are taken.  It wouldn't be so bad except that my body rebells against drinking something radioactive which makes for a very unpleasant time while I try to force more of it back in. 

Then there is the manometry testing.  This test involves having a small large tube shoved in your nose and down into your stomach.  Its kinda like that whole noodle trick only the "noodle" is the worlds longest piece of rigatoni and nobody is laughing.  After that fun a more reasonable noodle size tube is placed.  What this one lacks in size it gains in time as it stays there for 24 hours.

I am currently taking applications on stunt doubles for these two tests.  Any takers?

Besides these fun ones the rest should be a walk in the park, a few IVs and some minor procedures but nothing terribly unpleasant.  Hopefully not too long after all this testing we will get the verdict.  Am I a candidate for a second transplant and when?  I do not feel that sick and am not on oxygen so I am thinking it may not be time.  On the other hand I have lost a lot of function and do not have much more to go.  I also do not want to have to do these tests again. I also kinda want to get this over with and get out of the limbo state I currently find myself in.  I am thankful that God is in control and that his plan is good.  I can stay in that in the midst of all this uncertainty and have peace that most of these decisions will be made for me!

Until next time!
Get out there and live while you can! 

Thursday, January 3, 2019

New Year, New Me, New Blog

Hello blogollowers
Welcome to the new year!  I hope you are all doing well and enjoyed the holidays.  Today's post is a little different as the focus is not about my health but to give you some updates on my blog.  After blogging for over 5 years (Yikes) I have finally added my own web address.  You can still use the original one to find the blog but you can also find it by going to  I figured it was about time to make things a little easier and run with my Lemon title.  As many of you may have noticed I changed the background to feature the lovely lemon.  I have also changed the name of the blog from on to new windows to Lemon Life.  I figured it is about time to tie everything together.

As we say goodbye to the old name and welcome the lemon to the blog, I figured it is about time to explain the reason for the name.  Growing up in the hospital there were two things I absolutely hated.  being hooked up to a million machines and having to sit in the hospital bed.  The two were very closely related as I was forced to sit in the bed when I was hooked up to a million machines.  Anyway, other than when I was sleeping, and I use that term very loosely, I would not be found in the bed.  At the hospital I grew up going to there was a window seat in each of the rooms and better yet a deep window ledge.  BINGO!  This was my spot.  I could almost always be found sitting literally in the window.  My mom used to call me the girl in the window, which lead to the name for my blog, On to New Windows.

I am hoping to make a few more changes in the upcoming months or year, you will just have to wait and see.

Until next time

Thursday, December 13, 2018

Frequent Flyer

There is a truth in life that we all try to avoid.  Some of us go much longer than others without having to face the reality but one day, everyone, everywhere, in every-time, will come to the reality that we are not in charge.  That our life is not our own, we can not do whatever we want or follow our heart, or become anything and no amount of meticulous planning, saving, working toward a goal can stop the inevitable from happening.  At some point all of us are going to face a moment where we realize just how out of control we are....well ladies and gentlemen, I have reached that point.  Do not get me wrong I have had moments like this before.  Its kind of impossible to grow up with Cystic Fibrosis, get a lung transplant and have cancer while still living in the blissful world of having control.  Having lived life both ways, I am human after all and we are all prone to believing we have control at one point or another no matter how much life forces us to see we do not, I would argue that life is actually simpler and more peaceful when we learn to release control.  Especially when we release control to God, who if I'm completely honest with myself is and was in control all along.   Luckily for us God has a way of forcing us to see this and that is the exact spot I find myself in. (or was in last week when I started to type this) .

I am finishing this almost exactly a week later and my life has settled a bit.  It is still wildly unpredictable but I have had a week to ponder the unpredictable and have had some nights of good sleep in my own bed to help me cope and my peace has returned.

So heres the deal:
Last time I wrote I was starting out on this path to figure out why my lung function had dropped.  One short nap for me, and an exploration of my lungs for my docs and it was discovered that my silly old immune system is acting up again and attacking my lungs.  My doc decided to give me rATG again (the same treatment I did last December).  This med is given inpatient so I was checked into Duke Friday 2 weeks ago.  I was in the hospital for almost a week and got out last Wednesday. The treatment went fine again like it did last year.  I spent the days sleeping off the Benadryl high and the nights walking the halls, painting, watching movies and confusing my nurses with my night time awakeness and strange use of a bed.  We are hoping this treatment will help bring my lung function up at least a bit and stop the rejection as the bronch showed acute rejection which is a reversible kind.  As if this was not enough we also discovered that I might have specific antibodies that are targeting my lungs.  This is another part of the immune system and what a flu shot works on, you give the shot, your body basically makes a key that identifies the flu virus so that the next time your body sees it it can identify it quickly and wipe it out.  Great if it is the flu not so good if it is your lungs.  As a result of this we decided to attack my B cells with another treatment, these are the cells that make the antibodies (keys).  This treatment is one of the medications I received back when I did chemo so it is not a drug I have never had before.  The treatment will be a weekly outpatient infusion for 4 weeks.  It is scheduled to be given at Duke but we are in the process of getting it moved to Colorado.  I got my first infusion of it yesterday at Duke that went alright.   I had an allergic reaction to the medication, which happened last time as well.  My throat got very itchy and stingy and my lungs felt tight.  At the same time my blood sugar was dropping, unrelated to the med, which lead me to feel AWEFUL.  Some juice, a shot of epinephrine, some IV Benadryl and more steroids later I felt back to normal and was able to start the infusion again, this time with no drama, as usual I was super high from the Benadryl and forced myself to sleep it off, so you know there would be no prophesying.  

Hopefully the combination of the two treatments does the trick.  It is kind of silly because unlike a normal medication that helps your body to work better these meds are meant to wipe out my immune system as it is working too well, great for not getting sick much this past year, terrible when you are trying to keep foreign lungs happy in your body.  If these do not work we have a few more tricks in the bag and another transplant is also a possibility.

Although I have some answers and a mild idea of the next few weeks, most things are still quite up in the air.  I have to take a month or two off of work as my doctor feels I need to rest between treatments and should not be retuning to work yet.  This has been hard for me as I have really enjoyed my work and miss getting to interact with my clients.  I also feel bad as my clients have no idea what happened to me all they knew is I would be out for a few days and then back the next week.  Well that has now turned into over two weeks with no return in the near future.  Basically I just suddenly disappeared.  Which has been kind of strange for me to think about.  The other big thing is that I am looking into the possibility of moving back home.  I have been in Phoenix off and on the past 4 years and have been living here long term for the past year.  Although I constantly think about moving back home and miss my family I also really like the warm weather and am not looking forward to going to CO in the winter.  I still am not sure what I will end up doing but I have decided to at least go home while we figure things out so that I am not alone out in Phoenix as these treatments and my decreased lung function have really been affecting my daily functioning and leaving me fairly tired.  So that is the plan for now.  Is it set in stone, definitely not.  This could all change tomorrow.  My lung function is pretty low and we do not have much wiggle room, if I wake up tomorrow to a lower function this whole plan could be dropped and I could be rushed off to Duke to be hospitalized until lungs become available for me.  At this point anything can happen.  So we wait, trust God and go about daily life as best we can.