guest vlog! | cupcakes, memes and type 1.5 diabetes

Invisible Illness Week officially ended yesterday, but having an invisible illness doesn’t end until a cure is found.  Today, I have one more perspective on living with an invisible condition to share.

Cherise is an amazing diabetes advocate and lives with Type 1.5 diabetes, also known as LADA [Latent Auto-Immune Diabetes in Adult].  Cherise helps connect the Diabetes Online Community in a major way through the #dsma Twitter chat on Wednesday nights and is an awesome diabetes advocate.

Cherise has taken a new spin on the 30 Things About My Invisible Illness meme created for Invisible Illness Week, and chose to make her guest post in the form of a vlog.  I had a giant smile on my face while watching [also, I totally love the subtitles, so watch for those!]

Thanks for sharing, Cherise!  I will be happy-dancing with the D-OC when diabetes is cured.  And y’all are gonna eat a gazillion cupcakes and not have to bolus or even THINK about carbs.

Cherise was diagnosed with diabetes when she was 23 and is the founder and moderator of #dsma — Diabetes Social Media Advocacy twitter chat.  Cherise blogs at Diabetic Iz Me, and can be found on Twitter.

an interview with another kerri! | living with type one diabetes (and many cats!)

Today is the last day of Invisible Illness week!  I had the pleasure of being able to interview Kerri from Six Until Me (see also: creator of the #KerriPower hashtag we use when doing awesome things together!) about life with diabetes and being an amazing advocate for people with diabetes.  Kerri is also the reason that I have so many awesome friends in the Diabetes Online Community [yay #KerriPower!]

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Me: Hi Kerri! I’m so stoked to have you here sharing your perspective! YAY FOR KERRI POWER! Tell us a bit about yourself!

Kerri: Hi back to you, Kerri!  (Nice name you have there.)  I’m really honored to be hanging out on your blog today.  I usually blog over at my diabetes blog, www.SixUntilMe.com, where I write about life with type 1 diabetes, my goofy little daughter, my husband, and those three cats that somehow ended up living in my house.  It’s a potluck of chaos.

You’re a pretty elite and FAMOUS diabetes blogger :] — how did you get started in the blogging world?
Awww, you are way too nice!  I started blogging back in May of 2005 at the prompting of my then-boyfriend/now-husband.  I had been talking to him about Clara Barton Camp (a summer camp just for girls with type 1 diabetes) and explaining how I missed that feeling of knowing other people who had diabetes, too. He told me about this mysterious “blaaaahging” thing, and I decided to give it a go.  I posted my first post on May 4, 2005 and I found other diabetes bloggers almost immediately.  And then other people with diabetes found me.  From there, it got kind of crazy, because now there are hundreds of people who are blogging about their diabetes or the diabetes of someone they love, and suddenly I’m not at a loss for people who also don’t make their own insulin.  It’s nice, having a community that really gets it.  I’m honored to be part of this.

What kind of impact has the Diabetes Online Community [DOC] had on your own perspective on living with and managing your diabetes?
The DOC has confirmed for me that I’m not alone.  Managing diabetes is one thing, but feeling like you’re the only person on the planet who has to do it is really isolating and depressing.  Finding this community has made me feel more confident that there is a good life to be had, even after a diabetes diagnosis.  There are so many people with diabetes who are doing incredible things – and incredibly normal things – that I feel inspired and empowered by this community every, single day.

It’s evident that advocacy for people with diabetes is important to you. What’s your favourite advocacy moment story? [I know it could be a tough one!]
Growing up, I didn’t have a lot of mainstream media examples of people with diabetes.  The only one I knew of was Julia Roberts’ character in Steele Magnolias, where she’s a woman with diabetes who decides, against the advice of her medical team, to have a child.  Long story short, her character has a baby and then dies soon-thereafter from diabetes complications.  This was my mental image of a woman with diabetes who wanted to have a baby.  Now, after several years of planning, more hard work than I could imagine, and one very closely-monitored pregnancy, I have a healthy and happy 17 month old daughter. Blogging about my pregnancy is one of my proudest moments because I hoped to be an example of hard work equalling a healthy outcome.

What kind of advocacy projects are you currently involved with?
I write daily on SixUntilMe, and I try to keep it raw and honest because I want to share what life is really like with type 1 diabetes.  I also speak regularly at diabetes and healthcare conferences, and I’m currently hard at work on a big project that will be announced next year … so stay tuned!  🙂

You’ve had diabetes for a long time, but has having diabetes brought you anywhere that you’d never have imagined?
These advocacy opportunities have me speaking about diabetes to the CEOs of companies, and to government officials in Washington.  I’ve traveled the country on a platform of humor and honest advocacy, honored to be speaking at different health-related events.  And in December, I’ll be headed to Dubai, UAE for the World Diabetes Congress, which is the farthest I’ll have ever been from home.  I never imagined that advocating for diabetes would bring me such opportunity.

How do you encourage other PWDs to get involved with the DOC?
I tell people that we’re here, all the time.  Any time of day, you can log onto the computer and find another person with diabetes hanging out on a blog, or on Twitter, or on Facebook.  Diabetes never sleeps, but thankfully, neither do PWDs and their caregivers.  😉  Just add your voice to the chorus; the bigger our community becomes, the more our health benefits.

If you could tell a person without diabetes just ONE thing about living with diabetes, what would it be?
There IS life after diagnosis.  You’ll be okay.
Thanks, Kerri, for sharing your thoughts here today!  [We need to have an epic meet-up full of iced coffee and cupcakes and Kerri Power!]

Kerri Morrone Sparling lives with her husband, Chris, and her ridiculously adorable pink-tutu wearing seventeen-month-old daughter.  Kerri was diagnosed with type one diabetes at the age of six and is an influential member of the diabetes community, both online and off.  Kerri blogs at Six Until Me.

i and identify — wearing medical id

(Anybody recognize that P.O.D. title?)

Yesterday evening, sitting next to the sixteen-year-old I do respite with at youth, she grabbed my arm and started playing with my purple flowery sportsband.  Didn’t ask about it, just played with it, and asked what time it was [I think she thought it was a watch].  The funny thing is, the last two weeks, none of the kids had asked about my bracelets (I work with like 55 of them).  Until yesterday, that is.

“Miss Kerri, do you have asthma?” [The kids at work call me Miss Kerri.  It’s all cute and such, though it threw me off a lot the first, oh, two months of work.]

“Yep.”

“[Insert other kid’s name here] has the same bracelet!  And she has asthma, too!”  [Hooray for being matchy with one of our kids?  She doesn’t wear hers much anymore, I’ve been noticing.]

“Yuppers.  I have a black one too, but it’s too big.”  Kids understand all about things being too big.  Adults kind of lose that sort of understanding.

The other thing adults kinda lose, is the ability to not ask me incessant questions and just take it for what it is.  Your bracelet is matchy to my friend’s bracelet, you both have asthma, I’m gonna go back and play now.  Kids are so easy (most of the time).

Last night, my other respite girlie sits down on my knee and starts playing with my bracelet. “I used to have that one!  Except it had velcro on it.”  [The girlie has asthma, recently diagnosed epilepsy and potentially severe environmental allergies in addition to the behavioural/developmental things that lead me to doing respite with her].

 

And my question is . . . why are these kids not wearing their bracelets?  I understand MedicAlert is a little pricey for some, but there are other options.  It’s something I definitely think is important, and people don’t understand how important it actually is..

It’s your life.  Do you wear medical identification to identify your invisible illness?  Why did you make that decision, or why not?

guest post! | “my name is . . .”

I always get really excited when I meet people who are named Kerri(-with-an-I).  Yesterday, I received a request on Twitter from another Kerri to guest post [the second one this week, actually.  We Kerris are into advocacy, it seems!].

Kerri has Myasthenia Gravis, an incurable autoimmune disorder that affects the neuromuscular system, and uses social media to educate others about the condition.  In addition, she leans on the Eternal Rock to help her cope, and her faith in Jesus shines through in both her blog and her guest post here.

Thanks for sharing, Kerri!

Kerri Sweeris

I am shocking.
I can hurt you.
I will devastate your life, and change it in ways you could never imagine.
I can be the worst thing to ever happen to you, OR
I can be the best thing to ever happen to you.
I might take away your ability to work,
or walk
or laugh
or breathe
or see
or think clearly
or even live.

My name is chronic illness.

I will damage the connection between your nerves and muscles.
I will effect your ability to speak,
to swallow
to walk without falling
to hold your own head up
to breathe on your own
to go out alone
to be independent
to live a “normal” life.

My name is myasthenia gravis.

I will save your life.
I will cause you more trouble.
I may make you gain weight.
I may make you grumpy
or tired
or weepy
or hungry
or sad.
I usually help more than I hurt, so you keep me.
I may make you feel trapped.

My name is medication.

I can save your life.
I can give you a reason to go on.
I can bring you back from the edge.
I can make life bearable.
I will never give up.
I will help you fight when you just don’t want to.
I will help you go when you just want to stop.

My name is HOPE.

“I am the Way, the Truth and the Life.
I am Freedom.
I am Emmanuel.
I am the Prince of Peace.
I am the Healer.
I am Wonderful.
I am your Counselor.
I am your Savior.

My name is JESUS.”

Kerri Sweeris is a wife and mother of one miracle child, a 5 year old named Jacob.  She gets through life with the encouragement of good friends, a lot of humor, and by the grace of God.  Kerri blogs at Sick of MG – Living with Chronic Illness.

guest post! | me and my allergy down by the schoolyard

Despite a huge step towards education and awareness in both the media and in the classroom, severe food allergies remain hugely misunderstood and are tangled in too many misconceptions–misconceptions that can have deadly consequences.  As a childcare worker and a friend of many people with severe allergies, it’s something I often find myself thinking about.  But unless you live with it, you don’t know the half of it.

Chad is, according to his Facebook, a ninja, and also my neighbour at the cabin.  Though he doesn’t proclaim his ninja-status in his guest post, only badassery, he shares a story of a recent experience living with severe food allergies.

So I’m The Chad. 37, husband, father, badass and sufferer of a hidden illness. I have a deadly allergy. I really need the guy from the movie trailers to narrate that part. About 10 years ago I suddenly developed an allergy to all water dwelling creatures. Call it seafood, fish, whatever, if it comes from the water, it will likely kill me.

Sadly, one of my most favorite foods is tuna. Not anymore though. I’m not here to bemoan my issue as I have pretty much come to terms with it. What I’d like to talk about is respect for people who have allergies, especially in restaurants.

This weekend my wife, the boy and I went to a local MONGOlian restaurant that shall remain nameless. Now we eat there a fair bit and I’ve always been pretty happy with how they handle it when I tell them I have an allergy. They are quite allergy friendly to all sorts and, as a result, it’s one of our favorite lunches out.

As usual we told the server I had a seafood allergy and off she went to tell the grillers so they could clean a spot for me when I got there. All went well, the tower of food was created and the grill was being scrubbed when my wife heard this terrific exchange:

Server: “That guy has a seafood allergy.”

Manager: “Are you sure it was seafood, cause we don’t have seafood here.”

This was the start of a terrific comedy of errors that lead to one of the staff dumping a bowl onto the grill right beside my “clean zone”. This bowl prominently featured both fish and seafood and all of the oil and flavour sauces ended up guess where. That’s right, in my stir-fry. I calmly called over one of the staff and advised that they would need to throw mine out and I’d go and make a new one. I explained why at which point I watched two of these wonderful gentlemen pick through my stir-fry as though they could find and remove the offending material. I explained again, which was followed by further blank looks, more useless picking through my food, ending with me walking away to make another bowl.

So far, nothing too bad, however my return to the grill was met with sighs and looks of annoyance as if my allergy was in some way inconveniencing them and making there world a sad, sad place. They created a ridiculous safe zone that was nearly half the grill and anytime something bounced out of someone else’s stir-fry, close to mine or not they made a Tony worthy production of stopping everyone and flicking it off the grill. It’s pretty horrible when you feel like you have to apologize for something that is not your fault and that you didn’t ask for. The story ended happily-ish with a free stir-fry for me and an “apology” from the manager type person. Will I go back? Maybe, but probably not to this location. The actions of a couple of people who have likely never been affected by something like an allergy has effectively turned me off from the establishment.

It also made me think about how others with allergies are treated and how much of an issue non-allergy folks make when their kids can’t take a peanut butter sandwich to school or are asked not to wear perfume or cologne to work or are asked to take 5 minutes to make sure someone’s food is safe to eat. It would be great if everyone that’s ever felt put out or annoyed by this would just take a moment and think, “how would I feel if this were my son or daughter or myself affected by this?” “What if one peanut, one shrimp, one sting could kill me?”

In addition to his day job, Chad creates short films and photo slideshows with Wildhorse Jack Productions.  He and his family can be found travelling on major league baseball adventures.  At the cabin, he can often be found on the dock with a book [until those annoying neighbours come over and bother him, anyways!].