The Sometimes Kindness of Strangers

When I started having to wear oxygen in public, I really hated it - probably everyone who has to wear oxygen in public hates it! I was so self-conscious. I got a lot of double-takes and stares - I look so young to be on something that most people associate with either people in the hospital or people who are very old.

That was years ago. Since I have been on oxygen full time for the past few months, for some reason I stopped caring what people thought and started taking an interest in peoples' reactions to me.

This isn't to say there aren't some days when the stares build up and happen to align with a bad mood I'm in. During those times I want to just stop what I'm doing, get the entire room's attention and shout out, "Yes, I need to wear oxygen because I have cystic fibrosis and need a lung transplant - get over it!" But fortunately that doesn't happen often.

The Overly Apologetic Person

One of the funniest things I've noticed from people, and probably the thing that happens the most often, is when I am walking by someone in some kind of close quarters, maybe a narrow hall or doorway, a situation in which I need to say "excuse me" before I pass them. They will often look a bit taken aback and reply "no, excuse me."

It's almost like they are surprised that I even said "excuse me." However, just because I am carting around oxygen doesn't make me exempt from basic social etiquette. Or maybe they are sort of apologizing for not seeing me and my giant tank first and getting out of the way. Who knows?

The Gas Station Attendant

One-on-one interactions can sometimes be interesting, like a cashier at the drug store or gas station (my diesel car now forces me to pay in person much of the time.) Sometimes people just have this look and I know they are dying to ask about the oxygen...I can see it even as I'm fishing for something in my wallet. Sometimes I make idle conversation or try to act "overly okay" as an attempt to divert their attention, but that only works some of the time.

I've had a couple of people ask me if I needed to be on oxygen from smoking. And they were both very blunt, "Is that because of smoking?" I realized after the second time this happened that both said people were smokers themselves. Hmm... I think they felt some potential comradery allowed them to leap over some social niceties.

Occasionally something completely random will happen, like an older man coming up to me downtown last week speaking English with a heavy Carribean accent and telling me a very long story about how he had done a sleep study for sleep apnea and, basically, was having a hard time getting the results back from his doctor. I'm standing there thinking, this man is neither homeless nor overtly crazy, so I don't want to be rude and just walk away. The moral to his story? Was this (pointing to oxygen) what the treatment would be if he did have the sleep apnea? Strange.

I like it instead when people basically pretend there is no oxygen while also being courteous. For instance, hold the door for me because I'm someone who could use a little extra help but don't make a big thing about it.

The Kiddos

Then there are kids, the most curiously aged and least verbally filtered of the humans. You can't blame a kid for starring - I might be the first person they've ever seen on oxygen. For the most part I try to avoid eye contact and just let them stare - let them take all of my awesomeness on oxygen in! Blow their little minds witnessing a medical abnormality!

Some kids go straight to their parents to ask what's going on with me, pulling onto a leg or shirt sleeve. Most of the time the parents give them a short answer with as little chance for a follow-up question as possible. Then there are the bolder kids who will step right up and ask what my oxygen is or why I need to wear it. I don't mind that, actually, although it seems whatever explanation I give is never adequate to wipe the confused expression off their face.

Some parents will see their kids talking to me and try to get them away, afraid of a socially awkward situation - but seriously, this situation became awkward when a healthy-looking woman in her 30s walked through the door dragging a giant tank behind her!

Some parents just go over the top. I appreciate the idea behind it but it's wasting a perfectly good teachable moment for their kids. In this situation, which I've had happen two or three times to me, a child will ask their parent about my oxygen while I am in obvious earshot. The parent then glances at me and responds to their child something like, "she gets to wear that because she is so beautiful." Isn't that nice.

My favorite parental response was given by my step-sister Amy. (Really, I'm not biased!) One of my nieces asked Amy about the oxygen while we were all doing something in their living room last Thanksgiving. "Why don't you ask her yourself?" she said. My niece wasn't sure. It took her a minute to formulate her thought but then she did come over and ask. I was so taken aback (I wasn't that used to the oxygen yet, and explaining health stuff simply to kids is harder than you might think) I fumbled for an answer, but I was happy about how the whole thing played out.

One Last Thing

One last thing I wanted to address is a question one of my best friends asked me along these lines that required some thought for me. It actually had to do not with strangers but acquaintances. I think seeing acquaintances in public can be a lot harder than strangers or friends - they know you well enough to care and be concerned but maybe not well enough to feel comfortable asking about it. My friend challenged me, how is it I want these people to be with me?

The answer, simply, is that it depends on the person. If someone is comfortable asking about my health, I want them to feel free to. I don't want them to assume that I don't want to talk about it or that it's uncomfortable to talk about. However, if the person isn't comfortable asking about it, I'd rather them just ignore it rather than acting weird.

Whoever you are, stranger, acquaintance, friend, family - because I know some of all of those people are reading this blog - I want you to know that I am almost always happy to answer questions about my health. It isn't strange for me to talk about it at all - I talk about it all the time! And if I get tired of talking about it and just want to be distracted talking about other things, I promise to let you know that too.

 

Photo credit: Lisa Simpson, imgur.com; penguin meme, quickmeme.com; AI service man, etsy.com; kid with parent, fotosender.com; penguin illustration, cartoonstock.com.

Re-positioning and re-prioritizing

 
I'm not gonna lie - it's been a hard week.

But! We are smack dab in the middle of my favorite Triangle event of the year, Full Frame Documentary Film Festival. That's right, I am a documentary junkie, I have been for many years, and this is when I get my fix. And the coolest perk of having a friend on the selection committee for Full Frame is free passes to more movies than I can possibly watch in four days. Tom rules!

I have had a bad luck streak with Full Frame in the past. Last year was the first year Todd also got passes, and I missed the whole thing entirely, home with a terrible multi-day stomach virus (which led to a lung exacerbation and eventually my back surgery being postponed.) The year before that I think it was something else that caused me to miss a lot of it.

But then there was one year that the weather was absolutely beautiful...  I went to several movies on Thursday (my then day off work), cut out of work early on Friday to see a couple, more on Saturday, and was documentaried-out by Sunday! Point is, I remember hanging out in the courtyard, iced coffee in hand between movies, thinking that if I had it my way, I would go to Full Frame every single year - and it would be this awesome.

Back to the present, Todd and I knew that, sadly, our free-riding days were coming to an end after this year. Todd took time off work, we planned out a bunch of movies, some together and some not. I dutifully ordered extra oxygen - the special large tanks that require a cart and shout to everyone you wheel by, "hey look, I'm just a youngster and I need oxygen!"

But this whole week I have just been feeling, well, like I am really getting my ass kicked by cystic fibrosis. My lung functions have gone down since I stopped the first week of IVs, I have been needing oxygen basically around-the-clock, my weight has dropped, and my energy...well, you can imagine. Pulmonary rehab was really hard this week, but just plain life has been hard, too.

I realized that even as I have gotten sicker, I am still operating in a bit of a "healthy Laura" mindset - I've not gotten the hang of being realistic about what it takes to do things. I say to myself, "I want to do this, this, this and this today...and maybe that and that if I have time and energy." That is a normal, healthy Laura thing to say. The reality is, I do one or two things and, as I start to feel my energy drain away, quickly start re-prioritizing the list, "well, that can wait, so can that and that, but this has to be done."

I've gotten better about letting go of things that aren't crucial, and I have tried to delegate, too, although I could be better. "Todd can help with this, mom can help with that, a friend wouldn't mind doing something else."

But you can see how, overall, it's so frustrating to not have the energy to do things yourself that you used to be able to do. Frankly, no one wants to ask for help because of not being able to do it yourself. The other thing is, with transplant coming up, I hesitate to start relying on people too much when I feel like I could be asking a whole lot of them in the coming months. I mean, who knows what's coming? But I do know both that I will need more help with a transplant and start feeling less well as the time gets closer.

So: does it suck to be wheeling around a big oxygen tank and unavoidably being labeled as the sick girl at Full Frame? Yes. Am I still happy to be there enjoying it? Absolutely! And that, in a nut shell folks, is kind of like my life right now.

I guess I have to keep in mind what's important, and take it a little slower for the rest.

The Art of Busy

I am making an art out of being busy - that is, I juggle a million things with ease and manage to arrange them into one beautiful design, all with the grace of a dancer. Sort of.

What I really mean is that I have been trying to get a tremendous amount done while also being mindful of my health and energy levels first throughout the day. It's quite a shift for me from go-go-go.

I have been consumed the last two weeks with both our bathroom renovation (choosing, ordering, trips to hardware stores...) and starting the process of applying for long-term disability through work (paperwork, paperwork, paperwork!) Not to mention all of my regular stuff (pulmonary rehab on Tuesday and Thursday, acupuncture on Wednesday, getting my allergy shots 40 minutes from home, arranging oxygen delivery, renewing prescriptions, other appointments, a hockey game and time with friends here and there...) 

Oh, and I am also starting to plan a bachelorette party (I am the maid of honor after all!), trying to get my handicap tag from the DMV (urgh!), revisiting my physical therapist from pre-surgery to get my back pain under control (it's getting better) and making preparations to meet with a lawyer who is going to do our wills. WHEW!

And I am doing all of this while contemplating two of the biggest questions I will ever have to answer in my life: Is it time to stop working? and, do I want to pursue transplant? And the hundreds of sub-questions that go along with both of those.

But, I am pacing myself. Thanks to not drinking, my head is in the best possible place to make these hard decisions and tackle all of this stuff. And since I started ginseng/acupuncture I have had more energy which is awesome.

All and all things are going pretty well. My back pain is getting better thanks to PT, restarting my stretching and acupuncture. Pulmonary rehab is going awesome - I absolutely rock the place every time I go. I am needing a little less oxygen to get around - more for exercise than simple exertion. My PFTs...still bouncing up and down and pretty much the same as they have been.

But I would be lying if I said I thought it was possible for me to recover in a way that I have recovered from infection/exacerbation before. I am clearly in a new stage of my disease - I feel it, my numbers show it, people who know the most about me can see it. I might even call it "the coughing fit stage" because I have never had as violent of coughing attacks as I have in the past weeks. (By the way, for those who think I "look great!" Thanks for the compliment, but please remember that CF is an invisible disease.)

My lungs are decaying and there is no question: we are on the road to transplant. If I have my way, the road will be long and windy. I would love to go on disability and live for 10 more years before needing a transplant! If anyone can do that, I can.

So anyway, please wish me luck in this process of applying for long-term disability. From what I have read, I need to suit up in a coat of arms. I am NOT looking forward to defending myself for deserving this. That is incredibly hard when I have already needed so much external help to realize this is what I probably need to do, what is best for my health.

When it's all over, a huge celebration will be in order - maybe even including a Blue Moon or two. :)

p.s. I should say that I have not 100% decided about going on long-term disability right now. But my HR person has advised me to start the process to find out if I qualify. It will be good to know even if I don't end up needing it now. But lord the paperwork!

Oh, Canada

Me and a tree: self-portrait

Went to Vancouver, British Columbia, the week before last for a three-day marketing conference. I was with two of my co-workers and it was so much fun! Flew out on Saturday and came back Thursday. Long days of travel but totally worth it.

Vancouver is very beautiful when the sun is shining which, from everything I gather, is not often the case in the fall as it was for us. Here are some cool pictures.

The view from my room...on the 16th floor! Practically the pent house.

The cutest sea otter I have ever seen, at the Vancouver Aquarium - a fantastic place.

Moose Mountie!*
*Mouse Mountie remains unpurchased in Canada :)

Waterfall at Capilano Suspension Bridge park

Cool old tree in the walkway at Capilano Suspension Bridge park. There were tons of boardwalks, tree canopy walkways, a cliffwalk (below) and other various look-off spots throughout this very beautiful (temperate) rain forest.

Three Amigos. These are my unbelievably cool and awesome friends from work that I went with to Vancouver. Kristen (left) is our philanthropy manager and is the most amazing supervisor ever; Debbie (middle) is our marketing/communications person and is wonderful as well. We had a great time traveling together.

Me on the cliffwalk!

Planes docked at Vancouver's water plane airport, a few blocks from our hotel on the harbor (or 'harbour' as they would write). It was so cool watching them take off and land.

View across the harbor on a very pretty day.

While in many ways, it seems like you are not in another country in Vancouver (going through customs - really??) in some ways it does - those are the things I most enjoy about traveling. It was cool using the different money, and hearing people say "loonies" and "toonies." I liked being able to strike up a conversation with an average Canadian person about hockey and have them actually know essentially what was going on with their local team. And the people there seemed very friendly for the most part. But geez was everything expensive!!

Switching Gears...

Now I know you all are dying to know (not really) how my back did through all of this with my having neglected PT for quite a while and how my lungs did while I was out there. The easy answer is that my back gave me a lot of trouble, mostly because of the awful chairs at the conference, but was easily controlled with Tramadol (my non-narcotic pain medicine that has basically become my best friend over the last two years.) My lungs did okay...

I like this map of Vancouver because you can see what a water town it is! It also makes it easy to imaging how beautiful the scenery is. By the way, the green area under where it says "Unique Media" is Stanley Park, kind of like their Central Park. It's a really lovely place with windy roads, lots of huge trees, walkways and people.

Expanding on that a bit, I did a lot of walking around in Vancouver - my lungs really like that - and rode the recumbent bike once at our swanky hotel, so I did get some exercise while I was out there. My coughing was well controlled with my go-to guaifensen "blue miracle" pills.

As far as oxygen on the flights, I did not use it or arrange to use it on the way out partly because I didn't think I would need it (sats had been running 97 or so), but really because it just slipped my mind that I would have to make arrangements to actually use it. (Turns out, you are not supposed to put a POC in your checked luggage because it uses a lithium ion batter - oops!)

However, I did have my pulse oximeter with me on the flight out and my sats dropped well into the 80s, so I knew I had to make arrangements for the way home. I will spare you the details, but suffice to say it ended up being a giant mess - there was about an hour of time when I was furiously making phone calls back to the States and was afraid that I would have to both push my flight back and shell out hundreds of dollars for either another portable oxygen conentrator rental, an extra battery, express shipping, another hotel room night, etc. but it worked out amazingly that I was able to use my own unit. Live and learn.

Yes, I missed you guys, too...

Now I am back home. I can never believe how much I miss my cats...if I had ten million years to spend with them, I would want ten million and one. My dad is still in the hospital in Cleveland, unfortunately - that has been worrisome. And I am getting back into doing my PT to see if it will help my back and I am exercising a lot and being more mindful of what goes into my body. I am going to see my pulmonary doc soon - maybe even this week - to make sure I'm in a good place going into our Belize trip in early November.

But most important of all - and for those of you who know me this will come as no surprise - it's hockey time, baby! Time to start cheering for those Canes.

Until next time,