guest posts / health + fitness / life

guest post! – a matter of parallel badgers

• by kerri

Following my asthma diagnosis, the world of chronic disease took on a new dimension–not only was I living it, but I was now able to resonate with others who were living it too. I’ve found through these interactions that it is only in part that the same diagnosis creates friendships–however, I also have found many, many friendships with others living with a variety of chronic diseases.

Bob is one of those friends, and he is also not the Roomba (my grandma has a Roomba named Bob. Bob fully understands this reference even if nobody else does). He’s always quick with some wit, humour and support, and is one of the many people I was blessed to encounter who is a member of the Diabetes Online Community. We’ve had many discussions about the parallels between different chronic diseases, specifically asthma and type 2 diabetes–I’m happy to have him sharing his thoughts today!

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My name is Bob. I have a blog (www.tminustwo.net) in which I share stories and perspectives from my life with Type 2 diabetes.

It’s been many months since Kerri first invited me to exchange guest posts. I started a draft at that time, but it’s just been kind of cooking on the back (WAY back) of my mental stove. There’s just been something I wanted to say, but I haven’t know quite what it was or just how to say it. (This is not completely unusual for me. I recently published a post that had been in the hopper for over two years.)

Kerri and I have often discussed the parallels between life with diabetes and life with asthma. Recently on Facebook, Kerri made a comment to me on one of those parallels. I offhandedly replied, “Yeah…if there’s a badger clamped onto your butt, it doesn’t make a huge amount of difference what species of badger it is.”

Ah-ha! THAT, my friends, is what I’ve wanted to say. No matter what kind of chronic disease a person has, it’s an enormous pain in the butt. And while chronic diseases have important differences in the nature of the impact on the folks dealing with them and what managing the condition involves, there are also many things that seem to be very common among those living with these conditions.

For the five years since my diagnosis, I have been an active participant in one online diabetes forum or another. In that time, I have read the stories of many people touched by the various kinds of diabetes. I’ve also, from time to time, heard or read the stories of people with other conditions. And, as Kerri says, there are many parallels.

See if you’ve found yourself saying something like the following:

  • “Because I look normal, people don’t realize that sometimes I’m really sick.”
  • “I work hard to take care of myself, but there are still bad days. It’s so frustrating!”
  • “People say the stupidest things to me about my condition. Sometimes they act like they know more about managing my condition than I do. Even though they usually mean well, it’s annoying and hurtful.”
  • “Dealing with this day after day, year after year, is so wearying and so dispiriting.”
  • “Everybody wants to tell me about their relative that had my condition, and it’s usually someone whose outcomes were really bad.”
  • “My sister-in-law is always sending me articles about ‘cures’ for my condition that are totally whacko, and my neighbor in this marketing scheme is convinced that all I need to do is buy her products!”
  • “Even some of my family members just don’t understand what this is like. Either they don’t get that I’m sick at all or they treat me like I can’t do anything.”

Any of that sound familiar? If you or someone you love has a chronic condition, I’m guessing that some of it does.

For many people living with a chronic condition, participating in social media with those who “get it” can be very helpful. People with diabetes find that the diffuse and informal entity known as the Diabetes Online Community provides a way to exchange information (“Where do I wear my insulin pump with my wedding dress?”) and viewpoints (“I really disagree with this article!”). More importantly, though, it gives PWDs (People With Diabetes) the opportunity to interact with other people who really “get it” and to receive the powerful reassurance that they are not alone.

I don’t know to what extent people with asthma have created similar resources, though I understand that online communities are being formed by people with many different conditions.

To me, this is a wonderful thing and well worth doing. After all, we need all the help we can get – we have badgers clamped onto our butts.

advocacy / asthma / badassmatics / friends / health + fitness / life

perspectives on asthma: it’s a six-letter catch-all

• by kerri

To wrap up Asthma Awareness Month, I thought it would be interesting to vlog a day with asthma to give an idea of what things can be like. Though I’ve been sharing guest posts from my friends with asthma, they capture the big picture but not the finer details of the day to day intricacies of living with a chronic disease.

Asthma, though, can look immensely different from day to day and from person to person. I am extremely thankful for the willingness of some of my friends to rise up and join me in sharing what a day in their lives with asthma looks like (and, on very short notice)–and of course, if anybody else wants to contribute, by all means, please fire a video off to me!

Super special thanks to Steve for getting a video off to me on really short notice!

Steve and I filmed these in an overlapping block of time, so we really had no idea what the other person was doing. However, our perspectives really overlap in certain parts of these videos, which just blew my mind. Steve has really severe asthma, but if you know any part of his story, you’ll know that he truly rolls with it, does what he has to, and lives a really vibrant and active life regardless of his asthma.

However, despite “asthma” sharing a common name, and Steve and I having common passions . . . you will see that Steve’s day is dramatically different from mine.

(By the way, I’m convinced Steve is a pro video blogger in disguise. And I think he needs to do this more often. Also, Steve, I like your hoodie.)

Asthma: it’s a six letter catch-all.

It can have a host of symptoms from coughing, to shortness of breath, to wheezing, to chest tightness.

It can be asymptomatic, or relatively mild, or severe enough to require treatment in the intensive care unit.

It can be treated with inhalers and nebs, pills and injections.

It can affect somebody for two minutes a year, or twenty four hours a day.

It can be anything but simple, and there is no such thing as typical.

But most importantly . . .

It can be owned,

it can be lived with

. . . and it can be thrived with.

badassmatics / guest posts / health + fitness / health advocacy / life

dia’s asthma story: square peg in a round hole

• by kerri

Despite the fact that my online friends and I often live thousands of kilometers apart, sometimes we are lucky enough to meet one another in person when the right series of events occurs. Back in the Fall of 2011, Dia (who I really hardly knew at the time!) happened to be in town for work . . . and then we clicked so much I ended up skipping Issues in Sport to continue hanging out with her in Second Cup due to the effects of #kinwin (kinesiologists: we get it).

On occasion, Dia blogs at Respiratory Situation. Today, I’m stealing her and she’s sharing her story here! (And, if you have any questions on the science-y things, I’m going to have to refer you to her!)

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A big thank you to Kerri for asking me to guest post on her blog

Happy Asthma Awareness Month everyone!

Here is a bit about my asthma story; I had what has been described as childhood asthma but the experts have debated that it might have really been some kind of bronchiolitis. I was asymptomatic for decades until I got a cold, which became pneumonia in 2008 and things were never the same. My family doc mentioned that my “asthma” was exacerbated and I remarked ”…but I have not had symptoms in decades” how can this be asthma?” That question began a journey of  tests, doctors, meds, more tests, more doctors ( world  renowned docs), 2 counties , different  meds, participating in  research, novel treatments, becoming a more informed patient and  developing an excellent working relationship with my doctors.

The heterogeneity of asthma

The asthma umbrella incorporates tons of different shapes, sizes, and abnormalities…etc. We are not all round, trying to fit into a round hole.   I know for sure that I am a SQUARE! My respirologist once told me that none of his patients were the same.  They all have variances from each other. This is one of the things that makes asthma so complex.  Some patients are coughers, wheezers, produce sputum and others don’t.  Some respond to certain kinds of treatment and others respond to something else. ( There are lots of journal articles on asthma phenotypes, endotypes and personalized medicine , you can also speak to your Respirologist about this topic.)

My “Square Peg was finally identified after wading through a sea of “ its just asthma, use your rescue inhaler and we don’t really have any ideas, why you are not getting better so, lets just keep you on prednisone.” Btw:   I am yet to be convinced of the wonderfulness of long term prednisone use, much to the chagrin of my Respirologist , even though we are trying everything to get me off that posion.

My Peg involves a significant eosinophilic component, mucous hyperseacretion and severe airway hyperresponsiveness. There are limited options for my specific abnormalities.  Name the inhaler, add on therapy and I have probably tried it.  I have also tried a few out of the box therapies with mixed success. It does get discouraging but you just have to keep pushing forward. This fall was the most ill that I have been in nearly 2 years and it was scary, but you get through it.

What to do as a “Square Peg”?

Arm yourself with knowledge, read everything you can, ask questions, be willing to try something different, participate in research, be pushy but also be respectful of your care team (they are people too and are often just as frustrated as you are), be an ACTIVE participant in your care. Keep pushing for better treatment, better awareness and find/develop a network of asthma peeps to help you through the journey.

A network of Asthma Peeps

There are times when asthma and lung disease suck beyond belief. When you don’t bounce back, despite all the treatment under the sun, when people don’t understand what you are doing, is the best you can with what you’ve got. Be responsible for yourself, change your perspective and be willing to try.

Remember that people are cheering for you to be successful (get better, push new limits…etc) I encourage you to find a group of people who understand (speak to your doc about speaking with a therapist who deals with chronic illness or directing you to a support group). There are also online communities that are awesome and you can meet some wonderful people (Like Kerri!) through them but you should be willing to be an active participant in that relationship.  Why not start a grassroots based support network?

To my support network and asthma/lung team, THANK YOU for everything.

You can find me at http://respiratorysituation.wordpress.com

Resources that I find helpful (Of course nothing can replace human contact!).

Badassmatics on Google+

PURR at FIRH , Pulmonary Research Registry 

Severe Asthma Research Program

http://www.amazon.com/Fishmans-Pulmonary-Diseases-Disorders-Set/dp/0071457399

http://www.ncbi.nlm.nih.gov/pubmed

The Asthma Society of Canada

advocacy / asthma / badassmatics / health + fitness / life

world asthma day 2013: catch my breath and go for it

• by kerri

World Asthma Day was last Tuesday, and I am extremely frustrated that I missed it being in the hospital. I missed my five-year asthma-versary being sick. As for my World Asthma Day post, here it is. Late and without the buzz surrounding World Asthma Day.

But you know what? The first Tuesday in May or not, it still matters. It matters as much as it did on the day that it was created, and it will matter as much as it does until this stupid disease is cured. I feel asthma as both a blessing and a curse, but the reality is, I would probably be a different person without it–and I honestly don’t think i would be a better person without it.  And I certainly would be missing a lot of amazing friends without it.

On World Asthma Day, though, at 3 AM PDT (5 AM CDT), from hospital rooms 3,035 kilometers apart in two different countries, through e-mails my friend Steve and I decreased the distance for moments at a time, as he dealt with a lot of hardcore shit at the same time as he was hospitalized yet again because of his asthma.  Steve is not only the guy who is half responsible for my perspective on living with asthma being how it is, because of all he’s taught me and all he’s walked through with me . . . but because it’s when he gets sick, it’s also when I get the angriest about this stupid disease and the reality of the impact it can have on people. Yet, Steve’s story also contains a lot of positivity. As does mine.

There are echoes of conversations I’ve had with many people in this video–with Steve, with Jay, with Natasha and Elisheva and many others.  And now, I’ll share them here.

Because I have the ability to change my own world. And having asthma doesn’t change that.

The guest posts will resume this week, and I am really excited to share them with everybody. Have an asthma story to share? E-mail me at kerriontheprairies [at] gmail [dot] com.

health + fitness / life / nutrition / wellness

only part of the story: nutritional deficiencies

• by kerri

IMG-20130502-00028.jpg

I’ve had a really hard week, both physically and emotionally.  While I’ve had anemia caused by iron-deficiciency for over a year, it has never, ever, kicked my ass as thoroughly as it has this past week. And in reality, it snuck up on me. I knew I was feeling more tired; I knew I was having more problems keeping up to my life. But it very, very quickly spiralled into something I had never experienced–an unignorable feeling of exhaustion, of tiredness, and ultimately it has let me, for the better part of the last week, unable to function.

I would not be surprised if other nutritionally-based deficiencies were able to kick peoples’ asses the same way that my iron-deficiency kicked mine.  The problem with nutritional deficiencies, though, are that people automatically perceive that you are not eating properly. I have to be extremely clear here: I am in no way a vegetarian nutrition superstar, and I am NOT solely trying to defend myself. I know that I do not always make the best choices. But even if you see somebody’s nutritional choices for one hour, one day, or one weekend, you are not getting the whole story of what is going on in their overall life–or in their body.

Last Thursday, I hadn’t been feeling well–well, nor had I been as of Tuesday of last week, either. I was extremely tired, but for the most part was pushing through. Maybe I took a nap when I got home from work in the morning, and maybe I didn’t feel quite right, but I was functioning. It had happened before, and I assumed that eventually things would balance out as had happened before. I kept taking three iron supplement pills a day as I had been for the past six-plus weeks consecutively, and figured that I’d catch up on sleep over the next weekend, and that I was feeling run-down from spending the past weekend in the US with my coworkers.  I got home from work before 10:30 that morning after a typical 7:30-9 shift, took a nap for an hour, and felt okay. Not great, but okay. A couple hours later, though, I was feeling much worse and made the difficult choice to ask my boss if they were able to cover me for the afternoon.

And thank God I did, because by 6:20 on Thursday night, I experienced some intense dizziness while doing dishes, and for some reason wandered into the bathroom. Where I nearly passed out and pulled a towel rack out of the wall in the process. In a flurry of dizziness, I stumbled from the bathroom to my bed where I spent the next nearly five days.  I realize now that it is completely possible if I had pushed myself and gone to work when I wasn’t feeling right, I could have crashed at work.

I’ve slowly been recovering. Very slowly. I spent nearly five straight days in bed. Yesterday, I spent about eight hours simply sitting at my kitchen table on my laptop, and I was exhausted. I have never experienced tiredness like this, and the feeling of slowly coming back from a place where my body had become extremely depleted, of not only iron but potentially of blood. We’ve been in contact with my primary care doctor and my gynaecologist, both of whom I see tomorrow.  I am working really hard at timing the consumption of my iron supplements better with added vitamin C, like I have tried previously, I am working at increasing the iron in foods I am eating . . . I am trying.

My diet may not be stellar. But it is only part of the story. And it is seemingly the only part of the story that people seem to want to pay attention to.

Because it has a simple solution. Because I can make the choice to modify that part. Because it is easy to lay blame.

I have spent a year beating myself up over this thing. About how my hemoglobin keeps dropping despite the fact that I’m taking the pills that frequently make me feel sick, that I am trying to modify other choices I am making.  But the reality is, is if my body can’t keep up with the iron that it is losing, it is never going to be able to replace it regardless of how hard I try.

Regardless of how much I blame myself. How much I blame myself for not trying hard enough. How much I blame myself for not being more proactive in my medical care earlier. How much I blame myself for what has happened this past week.

Because it is easier to blame myself for everything, than it is to accept that I don’t have control over 50% of the problem. Because with any chronic disease, lack of control over the situation is half the emotional battle.

When you’re feeling physically exhausted, it is much easier to blame yourself and experience all the associated anger, guilt, frustration and sadness all that more deeply.

And it is much easier to lay that blame on yourself . . . when others are laying it on you too.  When they’re lecturing you about how wrong you’ve been in the choices you’ve been making for yourself. And when it’s coming at you from all sides: family, friends, coworkers–people who are trying to be well-meaning, but are the ones who are completely contributing physical, emotional and spiritual burnout unintentionally.

I am already blaming myself. I do not need another lecture or a reminder that maybe I’ve fucked up.

And neither does anybody else with symptomatic iron-deficiency, or any other sort of nutritional deficiency or medical condition–yet many of us experience it too frequently.

I’ve experienced too many full on lectures or related comments from well-meaning people this last week. People who I love deeply, who I know are just trying to help me be healthy.  But you know what? When my body is already feeling like shit, that means my mind is already feeling like shit: a lecture is not helping. What does help?

The support of my friends. I love all of the people in my world. But like most things, once the first couple days pass of being sick from whatever cause, people fade out. If you want to help, stick around–even if we are not too interesting laying in bed, we really do appreciate that you are taking the time to simply be there for us.

Being supportive doesn’t mean giving me a lecture on how to manage my health–you are not in my body, and you are not my doctor or dietitian. It can be as simple as talking to me about something completely unrelated to distract me from how I’m feeling, or shooting me a quick text. Or posting something goofy to my Facebook or tweeting at me. Or learning alongside me–it is so simple, but my friend Steve simply asked me “What foods in a vegetarian diet are rich in iron?”–not only was this in no way judging or condescending, it showed that he cared enough to want to learn more.

Support doesn’t have an agenda.  Neither does friendship or love.

 

Note: This post is not aimed at anybody in particular. Its more about the force of accumulation.