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!  

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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. 

confession time

Hello!
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
Bye!







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!

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!

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! 

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 annathelemon.com.  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
Anna

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.  

TTYL

Anna  

Winds Are a Changing

Quick note: I wrote this post over a week ago on the plane to Oregon for Thanksgiving :O guilty!  Anyway its a bit of old news but......you are in luck as I will post an update this week!  TWO POSTS IN ONE WEEK!!!!! WHAT?!?!?!?!

Hello Bloggolowers!  

If you haven’t realized by now that my posts may will be sporadic, its time to check yourself as this has been going on for 5 years.  Wait….. WHAT!?!?!?!?!   5 YEARS… wow!  JK I know it has been 5 years did you?  Anyway this is my 6th year with these new used puppies!  Things have been going well…okay.  This latest year brought with it some.. doctors… hurdles… problems excitement.  It all started around this time last year. I had returned from my adventures in London and was a bit sick. A doctor visit and a course of antibiotics later and I was back to my usual spunky self.  Fast forward a few weeks to Christmas.  I had begun to notice that things were not quite right and my breathing was not as good as normal.  I kind of wrote it off as I was in Aspen at the time and going from living in Phoenix at a few hundred feet to Aspen at a few thousand feeling out of breath sooner was kind of a given. However, Christmas morning I jokingly told my mom “I probably have chronic rejection”, you know in the way I used to say I was going to probably get cancer one day…. Uh… I should probably stop saying these things!  I wrote it off and we went about our vacation.  Then I went to the doctor.  This was a routine follow up I had scheduled weeks before and figured it would be good to do as I was leaving for a cruise in a few days.  Long story short this doctor appointment set off a whole chain of events that is still going on to this day.  If you aren’t caught up with what happened check it out here and here.  So now that you are up to date, lets talk about what has happened since.  The Campath worked wonders.  My immune system was wiped out (I had one lab test that actually had the result of 0!), and the plummet down the lung slide stopped.  I was stable for a while and other than some mild tiredness and some occasional joint pain my silly body handled that drug like any good druggie!  Fast forward to July.  I went to the doc had a good report got home and subsequently got sick.  Yup thats the way us lemons like to do it!  Due to a decline in lung function from this sickness and several missed days of work I contacted my doc and was told I needed to be seen.  So back to Duke I went less then 10 days after getting home.  (on the bright side I reached A list status with the airline this year!)  Nothing came out of that trip and I was back to my normal life in a few days.  Then came last week.  I started to feel out of breath more than usual (this time without a change in altitude) without a cough or any signs of infection.  I checked my lung function and whooptie do, I’m down again and a decent amount at that.  An email to my doctor later and I have another trip planned out to the good ole’ NC, for a bronch.  YAY! At this point I have no idea what to expect.  Chronic rejection is a whole new world for me one that, assuming everything works out, will end in another transplant.  Definitely not something I am looking forward to by any means of the imagination but is a bridge I will cross, if and when it comes to it.  For now I try to live my life as best I can while balancing the ever increasing demands of this silly body and trying to adjust back to a similar lung status as I was a few years before my transplant.  I do fine when sitting still but get me walking or doing anything that requires a boost of oxygen and I am out of breath in a minute.  The weird part this time around is I don’t seem sick what so ever.  With CF you are hacking your lungs out all day long so its easy to see why you might be out of breath. This time I seem pretty normal but inside I feel like half of my lungs are missing or broken and I just can’t take a good breath. (which they kind of are).  So thats the dealio with me.  Just, you know, keeping life interesting. 

While all of this is going on I am still trying to maintain my full time job, a puppy (whom I absolutely adore!), teaching English part time (click here if you are interested in doing it too!  You can always contact me with questions Id love to help you get hired!), napping, shopping and watching all the cheesy Christmas movies Netflix has to offer. Plus you know trying to figure my life out and what my next steps are like any normal post college 20 something does.  Saying I have a lot going on is a bit of an understatement, just ask my kitchen and sink full of dishes or the clothes that I pull out of the dryer to wear each day.

Until next time!

Go do something fun! Life is short, LIVE IT!

Day 1728.....uh its been a while

Hello.... Hello..... Is this thing on...
Oh I there! I'm back!  Sorry, it has been soooooooo long, I was just keeping you hanging as all good storytellers do :P.  Nah actually I have been rather busy these last few months with moving, starting a new job, getting a new schedule, seeing the doctor, medical treatments....oh and a puppy :D.  Well, that about sums it up,
Until next time.






I guess I could give you a little (or a lot) more detail.  When we talked last I was in the hospital getting pumped full of bunny immune cells.  Well I am hoppy ;) to report that I am still human and going about my life merrily.  Unfortunately, the rATG did not work but I did not have any major side effects so that was a bonus.  Plus now I know what it is like and that it is not that bad, at least for me. I had a fear of getting rATG pretty much as soon as I heard about it pre-transplant, yet as with all my fears they turn out to be not so bad and the things that suck are things I never really saw coming.  Trust me I know from experience God really meant it when he said "DO NOT BE AFRAID". There really is no point it does nothing but get us all worked up, steal our present moments and lock us in a box of fear.  Everything I have ever been afraid of happening that has happened was actually okay, there was no reason to get all worked up.  And yet God also knew what he was doing when he said it over, and over, and over, and over, and over, and over, and over .... okay you get the point.  Not being afraid is something I have to constantly remind myself.  My latest mantra is the little bit of the song "don't worry, about a thing, cuz every little thing is gonna be alright" and it is true!

Alright, rant over!  Anyway like I said the rATG did not work. I went back in February only to discover my lung function had dropped a bit more.  This time there was no evidence of infection so the doctors were pretty certain it was from rejection and likely, chronic rejection.  They went ahead and did a treatment called campath.  I had heard about this fun med a few times before, from other transplant recipients and knew that it is a gnarly drug that basically wipes out your immune system for at least a year :O.  But at that point in time my doctors felt that it was my best option and really the only tool in the tool box against my (Joe's? Freddy's?...)lungs.  So at the end of February, I was shot up with the stuff.  And....... it seems to have done the trick. So far I have had one appointment since and everything was stable.  I go back in about two weeks and will see if these lungs are holding out, but until then I go about my life.

Having chronic rejection really has not changed my life much.  There are days where my breathing kinda sucks, a bit like before transplant and I am WAY more tired all the time and I definitely can feel the lack of function when I try to do anything physical, but other than that life is dare I say... normal.  I am working, paying bills, shopping at target... you know all the adult stuff. It is pretty easy to forget that there is a ticking time bomb inside of me.  Honestly apart from the lack of lung function things really are the same as before I got rejection.  Rejection is pretty much a guarantee at some point for us transplant folks and if we do not ever get it, it simply means we died of something else first.  So for me, the biggest difference in having rejection is that I know I have it rather than waiting for it to show up.  I can also work on mentally preparing for a second transplant as that is likely in the nearer future than I would like, but who really knows there are people who live years with rejection (by the way when I refer to rejection in this post I mean chronic rejection or Bronchiolitis Obliterans Syndrom (for those google crazy folks ;P), as it is sometimes called, similar name, but completely different disease than acute rejection).  So I just keep on going.  Waking up each day and living it to the fullest.

This new, or really old, way of life for me has made working a little bit hard. I enjoy my job but I would also love to be off traveling the world and spending time with my family and friends and when I try to live each day to the fullest, being stuck at work kinda does not really fit into that plan.  I am currently working as a behavioral health tech at an independent living site out here in Phoenix. What that means is that I work with people who have mental illness and a history of substance abuse learn to live the life they want.  I would not say it is the most rewarding job ever as I literally have the same conversations with the same people about the same issues day after day after day, but it is nice that I get to have a small part in making someone's life better, and... I have three days off a week!  I am also in the process of starting a new job.  It is with a company called VIPKID and I will be teaching English online to Chinese kids!  The best part, I set my schedule and can teach anywhere where I can get internet access, meaning I can teach and travel.  For now, I am working on building up my client base but I hope to one day make this my fulltime job and have more freedom in my schedule.  If you are interested in signing up or learning more you can use my referral link here ( I do get paid an incentive if you sign up, but I am really just sharing this as I think its a pretty cool way to make some extra money. You do need a degree but that is about the only requirement)  I am very early in the process and have yet to teach an actual student but I have my first real class tonight! Wish me luck!  I'll let you know how it goes.

Besides that, I have been trying not to melt in this ridiculously hot weather here.  You do get used to it and it is true it is more tolerable as it is a dry heat but man is it hot, for instance, yesterday it got up to 115 :O.  The hardest part is it doesn't cool off at night so there literally is no relief. Oh and I'm forced to go out in it to take my puppy to pee, yup I got a dog.  She is very sweet, fairly calm and much more suited to weak lungs and apartment living then pepper was. Her name is Islay (pronounced eye-la).  If you are a scotch fan you might recognize that name :P.  She is psycho and does not seem to mind the heat.  Her talents include jumping on and in everything, like a cat, chasing balls, laying in the middle of the road, being super cute and speaking Spanish!  She definitely brought a needed friendship to my life as I have been pretty sad and lonely out here in the desert.  (Get it, it is a desert for real but also kind of one metaphorically :P)

Well that is about all that is going on with me.  I will try to keep this thing up more regularly!  I hope you all are doing well.  If you have any specific topics you want me to cover, let me know in the comments.

Until next time
Your friendly neighborhood Lemon ;)

P.S. I've been thinking about doing a vlog (that is a video blog for those less techy types) any interest in watching that?  My biggest hurdle currently is how silly I feel talking to myself and a camera!  But we will see I think it could be fun!  Plus it is like all the rage and who am I if not a cutting-edge trend follower :P.

Bunnies and the New Year

Hello!
Sorry it has been so long since I last wrote.  Life has been kinda crazy lately.  Since my last post I had my sinus surgery, which went well but left me unable to smell... anything :(.  I also got to go out and visit Michael's family and home town for a much shorter time than planned but at least I still got to go.  I started and finished my final semester of college, graduated with honors, got a new apartment and a job!  Oh and took a semi spontaneous trip to London which was fabulous. You can say things are going pretty well, and they are... or at least were.

Around Thanksgiving I began to develop some shortness of breath. A trip to my doctor confirmed that my breathing was indeed down.  We decided to keep an eye on it, start some antibiotics and go from there.  I did well, was able to enjoy Thanksgiving with my family, return back to school and finish my last few weeks strong.  On Thursday of this past week I went back to my doc and unfortunately discovered that my lung function had dropped even more and this time much more sharply.

All my doctors were understandably concerned and had me fly straight to duke (do not pass go do not collect $200... oh wait wrong thing :P) Anyway.  I got to Duke late Thursday night and was given a bronch the next morning to figure out what was going on.  The results came back as I suspected, I have both froms of rejection :(.

I have dealt with acute rejection up until this point but this is the first time I have had chronic rejection.  Although the names sound similar they are not the same thing.  The biggest difference between the two is that acute rejection can be stopped and reversed.  Chronic rejection is not really something that can be treated it is more managed or slowed.  Luckily the doctors believe we caught it early and that the treatment will be somewhat helpful.  Only time will really tell.

My treatment is a medication called rATG.  It is a substance derived from rabbits that essentially attacks human immune cells.  (I've done a lot of research so if you want to know more let me know).
This treatment is the next level of rejection treatment and will wipe out my immune system even more.  It will be crucial for me to be carful about germs from the next few months at least.  Hopefully this treatment will do the trick to fix the acute rejection and at least temporarily delay the progression of the chronic rejection, but only time will tell.  I will have to come back to Duke more frequently for bronchs after this and to keep an eye on my white blood cells and red blood cell count as this treatment can flare up my cancer again.  Luckily my treatment is going well and I have had almost no side effects. If I were to experience them they are some pretty nasty ones, so I am quite please with that.

This whole ordeal comes once again as a reminder that life is extremely unpredictable and things must be held onto very loosely.  I am currently sitting in a hospital room in North Carolina.  A week ago I was sitting in my Grandmothers house in Aspen enjoying Christmas time with my family and dreaming of sitting on a boat this week enjoying fresh sea air as I was scheduled to go on my first cruise ever.  What I find kind of ironic is my cruise was to celebrate the end of cancer.  Hopefully I will be able to go at some point.  For now I'm where I need to be even if it isn't exactly where I would like to be.  At least it is still a break for me so it isn't interfering with my new job and Michael is not in school right now so he was able to fly out and spend time here, which has been awesome.  Having people around really does make it much more tolerable!

Anyway until next time!
Anna the lemon (or bunny lemon as we are saying now!)

Once a Lemon Always a Lemon

   

                                  

      Being a lemon is not temporary it is a problem deep down at the very core.  You can get a new paint job and put in all new upholstery and although the car might look shiny and great, drive it off the lot and around the town for a few days, weeks if you are lucky and pretty soon the check engine light will be flashing and another $1000 bill will be added to the pile.  As much as I try to hide it, or tell myself it isn't true I really am a Lemon.
     I have been pretty lucky up until this point (and really considering my lemoniness I am still fairly lucky).  For the most part, since the whole cancer thing was dealt with, I have been able to enjoy a pretty normal life.  I have had a few bouts of rejection here and there but that is about it, until this year.  If you have been following my story closely you know that the new year, brought some new bugs, a few weeks long sickness and the end of my no hospital stay streak.  Well since then I have had a cough.  This pesky cough was what I thought, a sign that I had rejection.  In May I had a bronch to check that theory, which was correct.  I did a 3 day dose of heavy duty IV steroids and my cough went away.  Or so I thought, a week later there it was again.  
     In June I went back to Duke for a follow up bronch.  I was prepared for another round of rejection treatment, but no rejection.  So why this cough?  My doctor thinks it may have something to do with my sinuses and told me to get checked out by the ENT (ear, nose and throat doctor).  
     The results of that visit were less than ideal.  At 25 I think I have become an official member of the Cystic Fibrosis club as I too, like many of my friends before me, will be having sinus surgery.  The biggest down side, as if having surgery weren't bad enough, is that it seems the only time to have my surgery messes with my travel plans for the summer.  Not cool CF, not cool!  
     For probably the first time in my life I am having something medical done that does not have to occur at a specific time.  I am not sick, this is not sudden.  It is being planned and yet, I still find myself forced to cancel plans and miss out once again.  To me this is one of the most frustrating aspects of having a chronic illness, my health always seems to get in the way.  The lesson learned from all the changed plans and disappointment is good, life is completely out of your control.  No amount of planning, no meticulous medication schedules can prevent illness and changed plans, which has been good for me and really helped me to have more of a go with the flow attitude then is my true nature.  Unfortunately, the path to this discovery is littered with dissapointment, feelings of being left out and frustration.  This surgery is simply more of the same.  What makes it so difficult is that it is planned.  It did not have to be one more missed event in the book of my life, and yet, despite my best effort it is going to be.  In addition, the surgery comes with another hospital stay, so there is that too.  

     In other news, the climb is next weekend!  You all have been a huge help so far and we have raised a fair amount of money.  Thank you! 
    For those of you still thinking about donating, DO IT!!! The money goes towards helping find better treatments for people with CF, with the ultimate goal of finding a cure, so people can stop missing out on life!  OR at least miss out less.  So please, please help!  Even if you only have a dollar, if everyone gave a dollar it would add up real quick.  (feel free to spread the love around, it all goes to the same place whether you donate to me or another teammate!) 
                                 To Donate to our team, click any of the TEAL words!
   Also in case you are wondering, the CF Foundation is one of the top non-profit organizations and has a fantastic model to use the money most effectively, many companies look to the CF Foundation to learn how to go about this themselves, so your money will be used well!  
           

Bumps in the Road

Hey guys!
Sorry I've been kinda MIA this year, but like I said before this is a good thing, it means I am out living my life.  This year I really have been!  School is out and once again I am back in Colorado, this time for most of the summer, no awesome travel plans to Europe for me this summer.  Can you get withdrawals from lack of travel because if you can I have them.  I miss being in Europe so much and can't wait until I can get back there.  Next summer anyone?

Anyway, this semester went well, even with the slight hiccup at the start, which ended up causing me to basically miss the first two weeks of class.  My classes were all super interesting and I really learned a lot.  My social life has also seen a few big changes.  Remember those great friends that I mentioned in my post from January??? Well one of them has become a little bit more than a great friend!  That's right, I'm dating now!  It has been going really well and is definitely an exciting new path in my life, neither of us is sure where this leads yet but it is an adventure and we are both enjoying getting to know each other better!

Most of my summer will be spent at home or working.  I am going on my usual Mexico trip, but for a lot shorter time this year.  Then at the beginning of June I am in a few weddings.  I have reached that age where all my friends are getting married.  The funniest part of all is that both of my groups of friends (School and friends from home) are at the marrying age despite being 5ish years apart.  It's what happens when the younger ones are part of the Christian crowd, why is it that Christian people often get married so young?

As far as my health goes, I've hit a bit of a road block.  Rember that crazy sickness I had back in January well, ever since then I have had a bit of a cough.  I had met with the transplant team in Phoenix and they didn't seem to think too much of it.  However I had this sneaking suspicion that it was linked to rejection.  After a bronch at my most recent Duke trip, it was confirmed that I do indeed have rejection again.  (What is this like my 6th or 7th time?  It seems like my only break from rejection was right after chemo, killed two birds with that one stone)  Luckily, so far I have only needed the lowest form of treatment they have for rejection, which is what I will be doing this time too.  I will start an IV steroid treatment tomorrow afternoon that will last for 3 days.  I will have to go back to Duke later in June for a follow-up bronch to make sure the steroids do the trick.  Steroids are not my most favorite thing in the world but I am thankful they are available and effective in treating my rejection.  Hopefully this time the IV goes in a little smoother than it has been in the past,  last time it took 6 tries!

With this last bout of rejection have been getting a lot of people wondering why I have rejection again, doesn't your body get used to the lungs eventually?  Unfortunately, the answer is no.  Rejection is always a threat with lung transplant and sadly is one of the leading causes of death for people post transplant.  The transplanted lungs are not my own cells and they never will be.  Our immune system is designed to recognize self versus others and respond to the presence of other by attacking and destroying the foreign cells.  Great when it is a bacteria invader, not so great when those cells are another's organ that is keeping me alive.  As of right now there is no treatment that completely prevents the immune system from attacking the lungs while still providing the necessary protection against bacteria and other harmful substances.  That is why it is so important to put off transplant as long as possible.  Transplant helps give a person more time but it is not a permanent fix.  One way you can help people like me delay the need for a transplant as long as possible is by donating to the Cystic Fibrosis Foundation which does ongoing research into new and better treatments for CF.  They are not governmentally funded at all, yet they provide amazing support and treatment for all people with CF.  They are a major part of the reason I made it as long as I did without a transplant.  In July a group of us will be climbing the stairs at the football stadium to raise support for the foundation.  If you are around and interested we would love to have you join our team.  Please also consider donating (that's a link, click it!) to our team.  All the donations go directly to the Cystic Fibrosis Foundation!
Thank you so much for your support!

 

At the Sand Dunes with Anniken (My Norwegian sister!)

Adventures with this crazy kid!

Art Night with these Cuties!

Some of the Climb Team from last summer!

0 days since last hospital stay

Blog post written back in January (oops, sorry guys!)

They say transplant is trading one disease for another, it's easy to forget this when things are going well, but inevitably post transplant "disease" has its way of keeping it on your mind.  For most of this year things have been going fairly well.  I have been mildly sick here and there but nothing major, well... until now.  New year, new germs, or something like that.  Anyway, I got pretty sick after the start of the new year, probably the sickest I've been in a long time.  It all started with what I thought was a cold but quickly realized it was much more.  I was still at home so I went in to see my CF doc there.  I was sent home with a few meds in hopes they would do the trick and they did... or so I thought.

Fast forward a week and I was sick again.  This time much worse than before and I was back at school.  I ended up doing a little research and found a transplant hospital in Phoenix so I decided to go there.  I figured they would know what to do and I wouldn't risk getting trapped in the ICU again (read about it here).  Luckily I made the right move.  This place seems pretty good and they have been doing exactly what I would think they would do.  I've only been in a couple days and already I am doing much better.  I was on oxygen when I first came in because I couldn't breathe and I am off of that completely now!  Hopefully I will keep on getting better and be able to get out of here in a day or two.  The semester just started and I really need to get back to class!

 My hospital streak is gone, but I am where I need to be for the moment.  I will have to start a new streak once I get out of here!  Thankfully I have some amazing people here who were willing to help me out, from taking me to the hospital and hanging with me for hours in the ER, to helping my mom get my car and just being here hanging out with me and playing games.  I am so thankful for the people I have in my life!

The start of this whole thing, I think Nora knew something was wrong

Day 1059

     The day has come.  Today, October 12, 2016, marks 3 years since my transplant and basically 2 years since I finished chemo.  Wow!  Has it really been 3 whole years already?  It feels like it was just yesterday.  At the same time, lengthy pre-bed treatments, tube fed meals, coughing, lack of appetite, burning lungs, beeping IVs, oxygen tanks and an overall struggle to survive seem like a very distant memory.  I almost can't remember my life before transplant, almost.  
     Making it to 3 years is huge.  About 40% of my fellow transplant patients don't make it this far.  It is not just a statistic but something I have seen play out.  I have seen the dreaded message about a friend needing prayer as they take a turn for the worse.  Many tears have been shed as those battles come to an end.  It is an interesting experience to see friend after friend suddenly go downhill all while I am sitting here fine.  It is confusing, on one hand, filling my head with the why me's of survival and yet, it is also calming.  There is an interesting peace that comes with knowing, truly knowing, how fragile and temporary life truly is.  At any moment it can be taken from me, from any of us, and the thing is, there is nothing any of us can do about it.  
     So what do you do with this information?  You live.  You find what matters, what is worth your time, what makes you happy and fills you up and cut out what doesn't.  You fill it with adventure, with fun and laughter.  You fill it with people in community sharing struggles, joys, laughter and pain.  You say yes to opportunities and try not to let worry about the little things stop you from experiencing the big things.     
     3 years means I have lived 3 years longer than I was supposed to.  3 years means I have gotten to experience almost 3 years of "normal" life (all except that little cancer blip, two years ago).  I have had 3 years to share laughs and play games.  3 years to be silly and make up songs.  3 years to pull all-nighters full of good conversations.  3 years to explore this crazy planet and go on spontaneous adventures big and small.  3 years to meet people and make friends and I've loved it!  
    I won't lie and say I have enjoyed every minute but I have definitely liked a lot of it and I wouldn't do it differently if I went back.  These last 3 years have been some of the craziest but also some of the best years of my life.  If 3 years is all I get, I know that I lived those years to the fullest!  And, if I get more time, I plan to keep on living it, one day at a time because, honestly, that is all any of can really do!      
     This year to celebrate I am going somewhere to see my human smallness and fragility in a more tangible way, under the stars and the rising sun, surrounded by good friends, with an early morning trip to the Grand Canyon!  Until next time, get out there and live!

    

The Other Side of Travel

Somebody get that girl some hand sanitizer!

Recently I had the amazing opportunity to go on a 3 week long adventure through Europe.  I shared much of our journey on social media. Social media is a great place where we can catch up on people's lives and live vicariously through them, but it is only half of the story.  The pictures shared show the happy times, the beautiful scenery the best parts of our lives.  Just as you can cut the dumpster out of the picture of the beautiful gardens at Versailles, you can cut the hard life moments out and paint an almost fairytale picture of a very real experience.  Well I'm coming clean, maybe not completely clean this is not true confessions, (if you want juicy tidbits I'm not your girl!) I will give you a slight glimpse into what a trip is really like for a lemon and what it takes to make it happen.

Behind the smiles, before the yummy food, along with the awesome memories, is a world of pills, sanitizer, finger sticks, tons of luggage and a bit of extra planning.  It can make the difference between an enjoyable trip and a health nightmare (though as stated here, no amount of planning can truly prevent that).  It is the world that exists behind the scenes that makes travel possible for a person like me, a person with a chronic illness.  Unlike my healthy counterparts, I can not pick up and go in a moments notice, my travel essentials won't fit in a small backpack, spontaneous trips can't go on and on, they can only last as long as I have until my next refill. 

On this most recent trip what you didn't see was the half hour or so we were stuck at the Borghese Gallery because my body suddenly decided to make a whole bunch of insulin and crash my blood sugar, which took forever to come back up, or the amount of room in both my suitcase and carry on that was dedicated to pills and extra supplies,  It was a lot!  Basically my entire carry on and a quarter of my suitcase.  I would say this might be the hardest part for me because I hate having tons of stuff with me, I like to travel light.  In fact before my transplant I never used a purse, I was a pockets girl, if I couldn't fit it in my pockets I didn't need it.  Well now the amount of stuff I have with me on a regular basis could put a diaper bag to shame (okay maybe not that much, but in do have a ton of stuff I have to carry around.).  Trips, especially out of the country trips, are extra hard because in addition to my regular daily amount of supplies I have to be sure to bring plenty of extras in case something happens.  For instance on this latest trip I was gone for 24 days which is a lot of pills, but I also took an extra 6 days of supplies with me just in case.  So for this particular trip that amounted to over 1000 pills!!! Then there are all the supplies I need for my diabetes, pump sets (which come

in two parts), extra batteries, insulin (two kinds and an extra bottle of each), syringes in case my pump fails, lots of glucose test strips and of course alcohol wipes, tons and tons of alcohol wipes.  Then there are the quick sugar snacks I need for the inevitable blood sugar crashes.  All this takes a bit of planning since I need to make sure I have enough supplies on hand to get through the whole trip.  In addition I get an antibiotic to bring just in case and I also almost always have a mask, wipes and handsanitizer with me.  

Believe it or not this is what is left after 2/3 of the trip!  And it's only my pills, well and two pump parts.

On the trip itself there are usually a few times my health issues get in the way, I wouldn't be a true lemon if that wasn't the case!  This particular trip was no exception, although I think it was the smoothest trip health wise I have had.  I had energy most of the time and felt well enough each day to participate in the activities, despite getting sick less than a week in.  On my last trip to Europe, I stayed behind a few days because I didn't feel well.  This time I really only skipped out on one evening, which ended up consisting of walking to a place for takeout anyway. 

What were those lemon moments you ask, well like I said, I ended up getting sick pretty much right of the bat.  I guess looking back on it, it was kind of inevitable as I was around the most people I had been all summer when my immune system was at its lowest, my rejection treatment ended up happening days before my trip.  Luckily for me it seemed to be a quick bug as one evening of rest and a slower day following it were enough for me to mostly recover.  

My blood sugar proved to be the biggest issue on this trip.  The previously mentioned rejection treatment has a tendency to cause my blood sugars to get way out of wack and this time around was no exception.  I went from having extremely high sugars one day to crashing multiple times the next.  These crashes caused us to have to stop in a few places while I waited for my sugary snacks to kick in and allow my legs to regain their solid human status instead of the limp noodle like state given to them from the lack of sugar (cell energy) in my blood.  The Borghese Gallery being one of those places.  I also had a lovely crash while eating gelato!!!! (um... WHAT, crazy body gelato has sugar!!!)

Little did I know in this pic my blood sugar was crashing rapidly (quit wasting your time with pics girl, EAT THAT GELATO PRONTO!)

The Great 2016 Gelato Crash!

In addition to the interruptions, there are a few challenges of traveling, especially to another country with some unique needs. First of all I am sometimes limited in what or where I can eat as I have a few food restrictions and need to be extra careful about cleanliness and food safety.  An example of that, the sandwich. A staple it seems in most countries' diets and quite easy to find, yet if it contains any meat and is not hot I can not partake.  The other challenge I find when being abroad is knowing the carb content of my food.  You would think that  almost 3 years of having to count my carbs every time I eat I would be an expert at knowing the carbs per serving, but my friends you are mistaken, I SUCK at carb counting.  This is one area where technology has been a detriment.  Instead of learning carbs I rely on nutrition labels, online nutrition information and good old (new?) fashion internet searches.  Well my friends when the nutrition label is in French, a serving is listed per 100g and access to the internet costs more than college, you get some pretty interesting and highly inaccurate carb counts.  I mean does anyone know what 100g of gelato looks like???  Add to this that many packages did not include the amount of grams in them, forget being able to be like oh 100g is 1/3 of this 300g container.  Chocolate bars we found in the grocery store in Paris turned out to be my favorite nutrition label as there was literally a picture showing what a serving of the bar looked like along with the carbs found in it!  Luckily the word for carbohydrates is pretty easily identified in all of the languages we dealt with on the trip, so you know, it could have been worse.  Plus I had my continuous glucose monitor (learn more about dex here) which helped immensely as I could catch my highs or lows most times before they became a real problem!

Despite the challenges, traveling is great. It has been a while since I had been on a sightseeing type trip and I had forgotten how much I love it.  I get too comfortable in my known daily routine that I forget the true thrill of traveling!  My adventurer spirit has been reawakened.  I can't wait to get on to more windows! 

Here are a a few pictures from the trip: