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:

Pepper!

As promised here is the story about what I have been up to lately!

This all started last January when I came across a site that advertised diabetic alert dogs.  I am thinking I was doing some sort of search on service dogs but I can't really remember.  Anyway, I knew that this would be a perfect thing for me.  I really love dogs and have been wanting on for, well... forever, and my diabetes has gotten very dangerous since my transplant.  Dangerous because as I have mentioned in previous posts (see here)  I don't notice when I get low until I am super low, which could lead to me passing out.  If no one is around when this happens I could die because I don't get sugar to my body soon enough.  At the time I did't know about continuous glucose monitors.  The dog seemed like the best solution.  Unfortunately these dogs can run many many thousands of dollars, in fact a low priced dog is around 20,000.  YIKES!!!!  After learning the cost I moved on realizing that this life saving pal was beyond my reach.

Enter October:
I began searching again for a Diabetic Alert Dog (DAD).  This time I came across some information about how you can train your own, which greatly reduces the cost!!!!  What this meant for me: I could actually afford one!  Although I had gotten my CGM (check my blood sugar and warns me when it is going low)  I was finding I still had lows that went unnoticed for a long time.  My alarm might go off, but I would either sleep through it or not hear it.  It was then that I realized that a dog would help me live independently which is what I have been wanting to do.  I began looking for a dog to begin training and came across my little Pepper!

She was the last dog left from a litter of Aussiedoodles (australian shepherd poodle mix) and best of all she was being tested for her service dog (specifically a DAD) potential.  How perfect!  One thing lead to another.  The papers were signed and Pepper became mine!

I picked her up the day after learning my fate.  She is awesome!  Very well behaved and learns quickly.  She is super sweet and loves to snuggle.  I am enjoying the training and am so glad that a service dog was a possibility for me!

What is a DAD?

A diabetic alert dog is a dog that can smell the changes in blood sugar a person goes through.  They are trained to give an alert to the handler when their (the person's) blood sugar either rises too high or drops too low.  These dogs can also be trained to do additional tasks ranging from getting juice for a low to alerting others of the danger.  What is awesome about these dogs is that they often pick up on the blood sugar change 15 minutes or more before it is picked up on the monitor.  This allows the person to deal with their blood sugar and fix it before it becomes a problem.  In my case Pepper will be able to alert me to a low, much earlier than I would feel it, preventing my sugar level from getting low enough to be dangerous!

Sweet!

I'm in the hospital once again.  Had a fever, got worse told to go to the ER to have tests, stupidly went to local hospital ER and not hospital with my cf team's ER, got admitted, given antibiotics, responded to them, feeling better, ready to go home, fully capable of continuing IVs at home if need be, Nausea mostly gone as of mid last week!

 The speed version and now you are up to date, wasn't that nice! 

So of course I have a long story to tell.

You are correct you know me too well!

My blood sugar issues are proving to be quite a problem.  My doctor here seems to think my blood sugar is extremely unmanaged and needs to be controlled before I am let out.  Unfortunately this guy has only just met me 3 days ago and I have a, shall I say complicated medical history.  We have explained that my sugars are crazy, don't make much sense, that we are working on them with my docs and that (controlling my sugars) should not be the main focus of this hospital stay.  Do I agree that my blood sugars are not being managed perfectly? YES of course!  I am not of fan of running in the high 300s at least once a day but things are moving in the right direction.  We have finally gotten my lows to be nearly eliminated which are far worse feeling and much riskier than my highs and my highs, for the most part have been lower than they have been.  We don't have the right plan yet but we are making progress and with anything new it takes time to adjust to it and get it right.  Plus if my possessive (in a caring way) transplant team, who I saw a mear 2 weeks ago and who were able to save my life by giving me new lungs and then save it again when said lungs didn't work right away, are okay enough to let me go over 1000 miles away from them, then I'm going to trust them in this situation, instead of the doc who ordered my meds at the complete wrong times (putting meds that interact badly together and trying to have me take my enzymes when I'm not eating anything) and asked me this morning if CF effects my absorption (uh yeah!).  I certainly don't  agree that my sugars warrent a 3 day and counting gig in the ICU.  Unfortunately between my mother, my father and myself, we are not getting through and this is one girl who knows when to put up the white flag. So I have earned another ride on the blood sugar coaster at the CF transplant world fun park!  At least on the plus side when this is all said and done I will have perfected my multi-all nighter with periodic power nap skills, as hourly blood sugar checks are a great training tool in the hopefully up and coming sport, hey maybe I'll get gold!  (Yes the Olympics are on right now and yes I do watch both the prime time and the repeats most nights as that is just about the only decent thing to watch on the hospital tv at 2:30 in the morning!)

I'm not so sure good night is the appropriate way to end this thing,  but as it is the middle of what free (aka out there, no not hippie, the free, in the world, not stuck in the hospital) type people call night and I have a cat nap to be getting to I will leave it at that, good night.