I’m currently at 39,854 feet elevation, flying above the most Northern part of California at 504 miles per hour. It will take a series of blog posts to get down my full thoughts on the experience of this weekend in Palo Alto, California for the Medicine-X conference at Stanford University. There are so many stories, experiences and connections to touch on, and while they have all been amazing, the first thing I need to do is introduce my friend Steve, aka a million different nicknames but mostly the (famous :]) Breathin’ Stephen.

Steve and I have been friends through the world of blogging since pretty early on in my asthma journey. He hates when I say it [but I’ll say it anyway :)], but he’s one of my biggest inspirations, and quite honestly, my hero. He often describes us as “The Ultimate Odd Couple”, which could not be closer to the truth; however, there is this ridiculous bond that somehow ended up forming between us in the last three years–Ultimate Odd Couple or not, we totally click, and that just solidified in California.

Much to my own surprise, I didn’t get all teary on him at the airport on Thursday like I thought I would when we finally found each other in the International Arrivals area [I was only there like four minutes, Steve, I swear. Calling you was easier than being confused–your airport is confusing :).]  From the airport, Steve took me on a whirlwind tour of San Francisco [my flight was delayed an hour and a half from Vancouver because of the fog in SF, so we didn’t get to see as much as we had hoped to].

First stop was Twin Peaks.

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I need to come back to SF when there is less fog, but the view was still amazing. [And no, we did not plan to coordinate our shorts, we just kind of matched because we are amazing.]

Check out this view:

twin peaks

[Photo Credit to Steve]

This one’s my favourite:

Twin Peaks with Steve

[Photo Credit to Steve. Or the garbage can or whatever we used to balance the camera on ;). He’s the one who set up this shot though.]

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Giant Pride flag! LOVE.

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I swear we’re on the Golden Gate Bridge, even though I didn’t even really actually see it. That fog is intense.

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[Photo credit to Steve]

Look at that fog!

yellow submarine house

Having a native San Franciscian as your tour guide means you get to become aware of things like the Yellow Submarine House.

It’s by Ocean Beach :].

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Kerri Pose on the beach

[Photo Credit to Steve]

Steve gets a true Kerri Pose on the beach!

Steve and Kerri on the beach

After the beach [where Steve made fun of me for running away from the water, I might add. Dude. I didn’t want to get my awesome shoes wet!)], we grabbed some pizza in Steve’s old neigbourhood [the dudes in there know him, it is unreal and the pizza was awesome :)] and made the journey to my hotel in Palo Alto. [Oh, and he brought me the GOOD KIND of animal cookies!! 🙂 They are awesome!] Unlike what we expected though, the story didn’t end there.

Sidebar explanation. Because, it makes the story make more sense but needs to be a sidebar so as not to detract form all the goodness above.

The unfortunate part is that I got kind of sick in California. I had a bit of a rough time breathing on my first flight on Thursday, but nothing I couldn’t deal with [utilizing entirely too many puffs of the inhaler, but, you do what you have to when you’re at 38,000 feet]. I was good on the second flight and thought it was just some weird short-lived, perfume and/or stress induced thing. First solo trip = stressful, yo.  By “kind of sick“, however, I mean that whether whatever it was that triggered the flight mini-flare persisted or something else triggered me in Palo Alto or prior to getting there, I’ll never know, but I essentially ended up having the worst asthma exacerbation I’ve had in the last two and a half years while in California. Cruddy timing, lungs. With a little help from my friends, I am usually pretty good at staying on top of things and getting back to baseline pretty quickly [and, being away from home made me deal with it more quickly]. If I’m going to, for whatever reason, get sick in a state I’ve never been to before, California was an okay place to have it happen. Steve is a Respiratory Therapist [and, though I was able to dissuade him, was more than willing to make the trek back to Palo Alto to bring me anything I needed (for instance, like the freaking nebulizer power cord I forgot at home) and has stupid crazy severe asthma (is that a good medical descriptor? Badassmatic, yo).  He actually brought me nebulizer meds at the airport because I wasn’t sure if mine would be apprehended at security for being not labeled (they weren’t)]. I always carry prednisone with me when I travel and I’ve never needed to break into it before, but I was extremely thankful to have the steroids with me.

Anyways, Steve was all over taking care of me from two hours away, checking in by phone several times and just generally being awesome–my personal Respiratory Therapist! For those wanting the details on the whole asthma situation, I managed to turn the worst of it around with a fair amount of Ventolin/Atrovent [both in the inhalers and in the nebs Steve gave me] and by starting prednisone. With the prednisone, since I hadn’t been on it in 2.5 years [go me!] I really had absolutely no idea how it was going to affect my body. Which, happened to be completely different than it has the last two times. Because I was concerned about flying home with my lungs all tight and uncomfortable, after some discussion, I threw back 50 mg splitting the dose in two on Friday, 40 mg Saturday, 35 mg Sunday, and so on. Whether it was starting 10 mg higher than I did last time or just the fact that I haven’t been on it in forever, while it turned my breathing around rapidly within about 24 hours [aka no longer coughing awkwardly through the Asthmapolis discussion], I ended up getting the stupid emotional side-effects of the medication and honestly just kept tearing up/fighting back tears at the most random intervals. [Honestly, somebody said something nice or unexpected or whatever to me, I was in tears, it was ridiculous.  It also made me super hungry–Medicine X was a good place to be on prednisone because there are healthy snacks every hour and a half and thus, unlike the last time I was on prednisone, I had no “I just drank a slurpee and ate a Reese’s chocolate bar and that does not mix well with pred tummy” feelings ;)]. Between some sleeplessness, whether breathing or steroid-induced, the prednisone-induced thirst and the needing-to-eat-all-the-effing-time thing, yeah, the pred sucks, but the effect it had on my breathing was so worth it. As I was writing this on Sunday, I’m not perfect yet, but so much better than I was, was correct, but yesterday’s flight adventure gave me a little backslide [regardless: so much better than I would have been had I not taken the prednisone]. I am freaking tired between the busy schedule, the craziness of the trip and the screwing up of my sleep pattern induced by the steroids [and now, after seeing the doctor, I am off school/work until Thursday and doing some gradual prednisone taper crap. Not what I expected to say the least.]

///End non-Steve related digression :].///

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This [Sunday] morning was the ultimate in seeing Steve’s compassion in action, though. We’ve covered I’m not good with prednisone [I don’t think anybody really is], but I’m also not good with not having concrete plans–the combination of them was not good. This morning, the intent was my friend Katie was going to pick me up from the hotel and take me to the airport via Rancho San Antonio for a walk [walk would have been no bueno anyways]. Long story short, miscommunications happened due to some unforeseen circumstances, and I basically freaked out when I couldn’t get a hold of her this morning [see also: um, going to blame the prednisone]. My friend Christina had also offered to drive me to the airport, but apparently prednisone + miscommunication = hysterics. I was so stressed out this morning which prompted me to send Steve a message in some fashion I can’t remember. After some back-and-forth for about an hour where I hadn’t resolved anything with either of my rides, and without any hesitation, Steve got in the car and came back to Palo Alto to take me to the airport [Read: bestest friend ever]. In this time, Katie got a hold of me, and we just ended up meeting at the hotel for a bit which Steve joined us for. Long story short, I am extremely appreciative and thankful for Steve’s willingness to be there for me when I am in stress/prednisone-induced tears on the phone freaking out at 6:30 AM. I honestly cannot say thank you enough. [In all his humility, he is probably going to tell me to take all these nice things down–not a chance, buddy, you are awesome.]  Really, these stories only scratch the surface of his awesomeness.

driving through northern california

Driving through northern california

He and I made the drive to the airport, where we hung out and had coffee [read: Steve had coffee. I had Vitamin Water. Prednisone tummy is evil and while I feel hungry, sometimes it’s like a few bites/sips into something and I am just done with it.  Fortunately and unfortunately, Steve is all-too-familiar with the prednisone shit, so if I am going to be a bit of a steroid-induced mess around anybody, he’s my guy and put up with me well] for a bit before he sent me off through security to my flight.

Airport with SteveSteve's blue eyes!

I like Steve’s expression in this one, the picture makes me laugh. PhotoBooth caught him off-guard, apparently. Hmm, apparently that was the theme of the weekend ;). See how blue his eyes are?

Airport with Steve

Yeah, I have the cool friends who will do ridiculous airport photoshoots with me. Actually, I think it was his idea to take more pictures.

Airport with Steve :]

Anyways, Steve . . . you are everything awesome I expected you to be and more. I’ve said it about four hundred times, but I really cannot thank you enough for your friendship, for putting up with me and my crazy messages super early in the morning interrupting your bass practicing [and checking in on me and my goofy lungs over the weekend], and your willingness to go out of your way to help me–not just today but countless times in the last three years. Today was just the ultimate show of that, and while you probably just want me to shut up now, I’ll just say it one more time: I can’t even express how much I am thankful and how much I appreciate your friendship because words can’t do it justice.  I’m so excited that I finally got to meet you and see your beautiful state! :]  Oh, and I promise next time I’m in California I will 1) be able to spend more time with you and 2) hopefully not be sick.

For the rest of you . . . the above [and more] are why I call him Epic Steve.

A question that gets thrown around frequently in the Diabetes Online Community [or DOC] is that of “What does a low blood sugar feel like?” My friend Jamie lives in the Toronto area, and has been living with type 1 diabetes for over twenty years. Jamie is also on the Chronic Roadtrip planning team, and we have had several amazing Skype and Twitter conversations on advocacy. Today, I’m thankful to have Jamie here sharing another bit of her creative diabetes advocacy (like her whiteboard at work, which I love!) as she shares yet another perspective on living with an invisible illness with a creatively written post! Thanks Jamie!

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You sit next to her on the train every day. She is a lovely woman who chats about her day, and you chat about yours.

She shares her hopes for a promotion. She talks about the sweater she almost bought but couldn’t bear to pay an outrageous fortune for it. She complains about the fight she had with her cell phone provider. She listens to you as you banter on about your workday.

Then she falls silent. She opens her purse and rummages through it. You close your eyes – it’s been a long day.

Then you feel a tap on your knee. You open your eyes and she’s looking a little flushed, and asks you if you happen to have any candy. You do, and hand her a crumpled bag of Skittles that has been lurking in the bottom of your purse. She looks relieved. She tears open the bag and eats them, then leans back in her seat and closes her eyes.

After some time passes, she perks up again and continues her banter about her daughter’s new job, and about the fact that her vacation is only “5 more sleeps”.

Pretty normal stuff. Right?

What you don’t hear is her internal conversation. To outsiders it would sound like a foreign language. It is a stream of consciousness, a constant underlying hum in her brain.

Am I high? No, it’s a low. Crap. Did remember to I stick my kit in my purse before I left? I don’t know. Can’t remember. I did. Ok. Test. Why do they make those stupid strips so tiny and they stick together. Did I bolus too much for that cookie? It was 3 hours after I had lunch. Maybe it was too soon to bolus. My pump said I didn’t have any IOB. Crap. I feel low – 3.1. Crap. I AM low. Where are my lifesavers? Stupid me. Stupid black hole in my purse. Why won’t my fingers work? Maybe she’s got something. She’s sleeping! Should I wake her? I’m soooo hot. Why don’t they turn on the air conditioning in here? I don’t know. YES!! Just tap her on the knee. She won’t mind, right? Thank goodness. Thank you! I wish I had a drink. I HATE cottonmouth.

This is the face of a person with Type 1 diabetes (aka Juvenile Diabetes, Diabetes Mellitus). This is the face of an invisible illness.

Type 1 diabetes requires constant management and frequent interaction. Blood sugar needs to be tested 8-10 times a day – sometimes more. Many inject insulin several times a day. Others use insulin pumps which pump insulin constantly, but it doesn’t end there. No matter which method, people with diabetes must count carbs for everything they eat, and get it right. They must add (or bolus) extra insulin – and get it right, for even a small error can cause a “low” or “high” blood sugar which must be dealt with by adding more insulin when blood sugars are higher than they should be, or have some “fast sugar” to counteract a low, which can lead to many physical symptoms – anything from sweating, confusion and even loss of consciousness.

These are some of the immediate issues that must be considered before any worries about complications we’ve all heard about, like kidney failure or blindness. Of course, people with diabetes worry about these things too, but it is so much more than that. The management is constant. The worrying is constant. The inside monologue is constant.

There are no breaks. The internal conversation does not rest. This is the hidden illness of diabetes.

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Jamie lives with her husband Larry, and is an advocate for both diabetes and accessibility awareness. In addition to three kitties and a dog, a member of the “furball” part of Jamie and Larry’s family is Keeta, Larry’s guide dog–accessibility for people who are blind is a big part of what Jamie advocates for!  Jamie enjoys reading blogs and collecting stories in InkStain’D, . You can find Jamie on twitter at @InkStain_D and her blog at Flying Furballs!

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As I was tweeting with Mike earlier about the difficulties he and I were having with this prompt, I was blank. I was so, so blind to the fact that I have been having an amazing conversation for the last twenty-four or so hours with friends, new and old, on Twitter. The thing about Twitter conversations is that there are so many that are so full of goodness, I often find myself lost in the ideas and not present in the conversation that builds these ideas.

I cannot recapture all of the conversation from last night with Jamie, Larry, Tom and Carrie Lynn, because there were too many ideas, too many tweets, and too long of an amazing discussion of an eruption of tweets, rapid-fire, between two countries–one state and two provinces, Twitter, the facilitator hepling to make our big, big world just a bit smaller. It spawned from my mention of trying to get myself to Toronto in August . . . and then the volcano erupted.

Chronic Roadtrip was born.  A journey being discovered, a plan being determined, a purpose being ignited. A spark we want to spread into a flame of empowerment for people with chronic diseases, like Jamie, Larry, Tom, Carrie Lynn and I.  Except they [ahem: Tom] are going to steal my pancreas as mine is kickass [read: I don’t have diabetes], whereas I’m going to cough while their pumps and meters beep, and Larry’s guide dog Keeta barks.  It’s gonna be an epic chorus in our adventure, wherever it goes.

There is very little solidly determined to formulate a road map, and very little I can say, especially at this point in the journey.

If we are even to make it happen it may involve August, an RV and plenty of adventure with a purpose: education and empowerment.

Ready, set, go, go, go!

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Teleportation. Christina at Mom of 2 Type 1s actually blogged about it this morning. And I guess I am still in that college stage she was in where teleportation would be the most badass thing ever.

Without the online health community, I probably wouldn’t really care about having the ability to teleport. Don’t get me wrong, I love to travel, and I would love to take those steps out of travelling. Just think, if I were able to teleport, I would be able to not even pack, not pay for hotels, and travel the world for a couple hours at a time then pop back home to go to bed! But without the online health community, all of you who have because of the internet become my amazing friends, I wouldn’t even care. Travelling would be cool, but I like the people the best.  I like the memories of meeting up with Rona, of meeting up with Dia when she was here. Of the thought I’ll probably get to hang out with Danielle for a bit in a few weeks when I’m in her city, and hopefully have a #KerriPower meet up in May when Kerri is in the city.

This . . . to be able to have these random meet-ups all the time would be awesome. To be able to see, face-to-face, the people who understand you the best, not only because they share your health condition, but they understand the ins and outs of it, and how it actually intertwines with your life. . . would be amazing. To be able to suddenly pop up and see Natasha or Elisheva [or any of my overseas friends] all the way across the ocean whenever we felt like it, whenever someone needed some rant-time or just to hang out, would be so awesome.

So teleporting? I would be all over that.  Meet-ups EVERYWHERE!

[Or, if not teleportation, I will totally accept an airline sponsor if I have any takers. AirCanada? WestJet? I can give you my whole pitch about the power of community and supporting people with chronic disease through education, empowerment, physical activity and relationship-building!]

My friend Dia (yes, Dia who sent me chocolate with pop rocks in it!) and I have epic Skype sessions a few evenings a month.  We are in reality supposed to be working on a project when we have them, except often very little work gets done and lots of ridiculousness occurs.  Usually the ridiculousness involves kinesiology-related things and nerdiness and it is fabulous regardless of the lack of work we accomplish. (Related: Dia is awesome, and we are on a mission to volunteer at Camp Asthmatopia in the summer. For real. Possibly].

Last night, we were discussing prepping for my pulmonology appointment today and how I intended to be a pain in the butt questioning about exercise prescription again [except it definitely didn’t happen because I didn’t include it on my list of things to address when I was talking with the clinical nurse, so basically nothing new happened], and how I was going to go in with the ACSM Exercise Management for Persons with Chronic Diseases and Disabilities textbook that I am reading just for fun in the waiting room [I also had a research article on teen asthma education, because I am teaching teens about asthma on Thursday!].

So Dia initiated a challenge in which she would donate $10 to the charity of my choice if I took a picture of the book in the waiting room by the reception desk, and a bonus if I got a picture of it with the old-school spirometer, so I could prove it to her.  [By the way, I freaking owned that spirometer today.]

Here is the bonus:

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Soon enough after getting the pictures to Dia, an e-mail popped into my inbox.

A donation has been made to the ASTHMA SOCIETY OF CANADA (at CanadaHelps.org) in your honour.

Kerri, You rocked the ACSM mission. Here is hoping, that we can inspire EVERYONE […] to Get Up, Get Active and Get Involved.

Then I thought . . . why not take this one step further?

If you feel moved, I would love to have you join me on this journey. The Asthma Society of Canada is a non-profit organization striving to improve the lives of people living with asthma through education and empowerment, and encouragement of living active lives with asthma. The TeamAsthma program was launched in 2010 to provide a forum for encouragement of activity as well as advocacy for people with asthma and increase awareness of the Asthma Society to the general public at activity-promoting events through providing athletes with t-shirts to wear at races or other events.

I have created a CanadaHelps page in support of the Asthma Society of Canada with a request for donations to be put towards the Team Asthma.ca program, empowering people with asthma to get active to OWN their asthma!  (I hope to become more deeply involved in this program in the future, so stay tuned.)

Every bit helps, so THANK YOU for taking the time to read this and even consider donating now or in the future, or for sharing the page or this post!