“Like, really?” and other reactions to the Internet

• In this week’s edition of “Ewwww!”, an Indian man named Nanu Ram Jogi announced his determination to be the world’s oldest father. This comes after his fourth wife gave birth to his 9th daughter (or so he “thinks”) at age 54 years of age, while Jogi clocks in at age ninety. Jogi is quoted saying he would love to keep having children until he is 100 years old. (Oh, and am I the only person who thought of Mork’s “Nanu-nanu!” line when reading the guy’s name?)
• Hate to break to you, folks, but superheroes are not real. I know, shocking, right? A recent Argentinian study came to this conclusion because “their social interactions don’t follow the patterns that they would in the real world.” And you thought diabetes had the craziest “WTF?” scientific studies. Just be thankful you’re not a superhero.
• A scientific study that might prove to have some legitimate ground to walk on comes from the Oregon Health Sciences University where researchers have found a brain-based cause for type 2 diabetes in, you guessed it, mice! But hey, you have to start somewhere, right? Apparently some neurons become defective in obese mice that cease to properly detect and respond to blood sugar. Amazing! And they’re going to study it in other animals now and maybe, just maybe, they’ll get around to studying human. You never know.
• Have you ever wanted some easy steps to be more [fill in adjective here] so you can live a better life? Well, Zen Habits has the answer for you! No, really. Everyday, they have some simple steps to help you be a more productive, healthier, happier and financially-secure person! Most of the tips can be found in essentially every lifestyle magazine on the market,  but now you don’t have to waste $3.95 x 6 magazines every month. Because Zen Habits would frown on irresponsibly spending money when you could get it for free from them.
• We have all witnessed the remarkable storytelling abilities from the members of the Diabetes O.C. and other health communities as they talk about their chronic illnesses, but would you believe me if I told you there was a food blogger who told the best narratives about eating? Orangette, written by Molly Wizenberg, a Seattlite who chronicles her adventures while incorporating food into every blog. She also has the best, most romantic “how I met my husband” story, which makes me incredibly jealous (though secretly incredibly hopeful!) and I think it is the best introduction to her blog. Bon appetit!

Well, I’m off to Providence and Boston for the weekend (hurrah for 3-day weekend!) but I will return with my adventures at the doctor’s next Tuesday. As a couple people mentioned, there are a variety of suspects (thyroid, anemia, exhaustion, I-just-have-a-sucky-metabolism) so hopefully I’ll track down and nail at least one of these suckers soon.

Have a wonderful holiday weekend and be safe!

Update

Briefly:

I have made a doctor’s appointment for Tuesday morning to get a lab referral to have my thyroid levels checked again.

I had my thyroid checked in April at my last doctor’s appointment, and never heard anything so I assumed I was in the clear, but I suppose it’s better to be safe than sorry. No point wandering around, wasting away thinking that I don’t have hypothyroidism just because I didn’t have it April. I mean, that’s the time frame in which I was diagnosed with diabetes, right? Had it one month, didn’t have it the next.

My father and pretty much all female members of his family have an underactive thyroid and coupled with the diabetes makes me a prime candidate for the condition.

Oh the joy of being a diabetic Blass! Double the fun.

I’ve been emailing with my dad all day, and he says I have some, but not all the symptoms so there is really no way of knowing for sure if I have it until I get tested. He also reminded me that when I was born, I stayed in the hospital an extra four days because I had a low heart rate, which apparently is another symptom of hypothyroidism. Even if I don’t have it now, it’s probably just a matter of time before my thyroid gland kicks the bucket too.

Why can’t my body just function like it was designed to do? Is that really so much to ask?

All I really want is to have energy again. It’s really depressing when you start daydreaming about sleeping instead of that cute guy who saved you from the mean old carbon monoxide detector.

Fatigue

Tonight is the third night this week I have crawled into bed at 7pm and woken up just before midnight.

On Sunday I came home from running errands and instead of making dinner, slept from 6pm until my mother phoned at 9pm. The only reason I didn’t stay asleep was because she started prepping for teaching the next day and the difference in time zones makes calling during the week difficult.

On Monday I fell asleep immediately after getting off a planning committee conference call. I thought I would just lay down for a few minutes, but my “a quick nap sounds nice” ideas usually end up lasting four hours.

Happened again tonight. Now I’m awake because I never tested, never ate dinner, never brushed my teeth and never put on pajamas. I’m also afraid that if I don’t wake up I’ll end up waking up at 4 a.m. with nothing to do or I’ll sleep too much and be groggy all day. Not that I’m not already tired at work everyday…

In July, when I was moving, falling asleep as soon as I came home from work. I was sort of a non-stop go-go-go kind of girl, with shopping and unpacking and planning and cleaning and then of course there was work. There were plenty of nights I went to bed at a normal time, like 10:30 or 11:00 p.m., but there were others where hitting the sack at 7pm seemed almost normal.

It’s inconsistent at best. There are plenty of nighs where I go to the gym like a normal person, come home and make dinner like a normal person, chat on the internet like a…well, like I usually do.

I tried looking up symptoms for chronic fatigue syndrome, but I don’t know if I’m just tired or “fatigued.” I don’t know how you can tell. Somedays at work I’m perfectly fine until I get home and crash, or I’m perfectly fine all day long. I’m not always tired. But when I am I feel like I’ve been run over by a speedboat. I also don’t have any of the muscle symptoms described. I mean, my back has been sore for a couple of days, but for most of the summer they’ve been just fine. And I have a two-year history of having bad back muscles and that has nothing to do with being tired.

But there are days like today where I yawned my way through the morning emails, lunch, and most of an afternoon phone call and really only “woke up” after a sugar buzz from a piece of birthday cake.

I don’t get it. I thought maybe if I blogged about it somebody else would know what I was talking about and could give me some advice. It’s okay if you don’t. I suppose this also to keep track of symptoms in case they it gets better/worse.

Okay, I need to crawl back into bed and hopefully get some sleep.

You mean I have to do it again?

Briefly:

I am in search of an endocrinologist and I made a phone call to a local diabetes center this afternoon to make an appointment.

When the receptionist answered, I explained to her that I had just moved to the area and that I was looking for a new endocrinologist, and I had been referred to the clinic by someone else and was wondering if they were accepting new patients.

The receptionist then asked me, “Are you a diabetic?”

Now, in hindsight I realize the woman was probably wondering if I was calling on behalf of a child or just myself, but it is still a strange question to hear someone ask you after you said you are looking for an endocrinologist. Of course I have diabetes, I thought!

After giving her all my contact information and how long I had had diabetes, she said she would call me back with an appointment time.

Now, this next part I should have realized I couldn’t get away with, but bear with me. You see, I don’t have a primary care physician yet, but I thought perhaps my old endocrinologist would work as a referral. Apparently not.

When the receptionist called me back, she said that I need a primary care physician to make the referral. I asked her if an old doctor could make the referral. She said no. When I asked why, she said, and I quote:

“You have to be diagnosed with diabetes.”

Excuse me?

“I already am a diabetic,” I said.

“I know that,” she replied. She then went on to explain that if I was ever diagnosed with something else they would need to have a local doctor they could speak with to discuss treatments.

That is a logical explanation. I completely understand why I would need a local doctor and assumed that this would be the case. I’m frustrated that I have to do that, only because I rarely get sick and haven’t visited a primary care doctor in years, but I understand why they need to have someone on file.

But the “you need to be diagnosed” response? Oh please. You can do better than that.

Oh the things people think they can get away with saying…

My Ironing Board has a New Friend!

For the past two months, my ironing board has sat all alone in my living room.

No couch.

No television or television stand.

No bookshelf.

Not even a coffee table.

Just my ironing board, with its little iron buddy.

We had found my dream couch at Macy’s at the end of June. My mother, younger brother and I combed through furniture stores on Route 4 and stumbled upon this little ruby gem of a couch hidden away on the second floor of the Macy’s Furniture department store.

It was love at first sight.

Bright red.

Comfortable.

Long enough to be used as a bed for the occasional guest bed.

Unfortunately, we discovered that the couch was out of stock and wouldn’t be in the warehouse until July 27. Tragic, isn’t it? Although we had seen another chocolate brown couch that would have been suitable, I had my heart set on this discovery. My mother purchased it (her housewarming gift to me) and the interim of waiting began.

And so I waited.

And waited.

And waited.

Finally, on August 11, after not hearing a peep from Macy’s, I went into the store to talk to the clerk. The woman at the front desk told me that my couch was scheduled to be delivered on Tuesday, August 14.

Excuse me?

Scheduled? Without asking me?

I told her that date wasn’t acceptable, as I worked, so I had it moved to August 18. I realized later that August 18 wouldn’t work either as I was expected in the city that day. So I waited until the night before, when the Macy’s employee said they would call, to cancel the delivery and reschedule.

But they didn’t call.

Instead, they called on Saturday (and left a message, because I was in the city) and left a message saying my couch was available for delivery and I should schedule a time to have it delivered!

Okay. Fine.

Heidi, the original saleswoman from back in June, called me to schedule a time. Saturday, unfortunately, not available - because every other person in New Jersey who works wants their furniture then too. So I scheduled it for Friday, hoping that I could either work from home in the morning or afternoon.

Finally, Friday arrives (that would be today). I’m eagerly anticipating the arrival of my new sofa. I see the white delivery truck pull up and I open the door for the two Latino men to come inside.

They push and shove that couch through the door and after not one, not two, but three attempts, they were finally able to squeeze my apparently obese couch through the front door of the complex and my apartment’s front door and into my living room.

It’s beautiful! I finally have a comfortable resting spot to watch the season premiere of Heroes (only one more month!) and my ironing board has some company while I’m away at work.

Don’t they look cute together?

 My new couch, solo version:

 

 (Ed. Note: The fabulous Friday Five will return next week!)

Blessed.

I was in Washington Square Park last weekend with my friend Tara (some of you may know her from Diabetes Self-Management), her boyfriend and a few of her friends, and my cousin.

I was sitting on the grass, sipping a Mango bubble tea, laughing at embarassing stories and watching all the New Yorkers (and tourists) mingle about in the park.

Jazz music played in the background, juxtaposed by a conservative Christian choir.

The fountain was in full bloom.

And I thought to myself how incredibly lucky I am to have the life that I do.

It’s not very often, I think, that we really stop to reflect on everything we have and everything we’ve experienced and everything we hopefully get to experience.

The past two months have been challenging - emotionally, physically, financially.

From finding a car in three days to starting a new job while living in a hotel to moving three thousand miles and having to practically start over again, I slowly realized that I have what I really need.

There are people all over the country who support me and encourage me. Complete strangers who out of the blue email me to tell me I’m a worthwhile person.

I have a new family that loves me even though they barely know me, including an older cousin whom I fully intend to adopt and torture like the older brother I never had. He’s an only child and I have almost twenty years of sibling experience.

I have a cool job with even cooler people - and I’m not just saying that because they read this. I laugh everyday and it feels so good, especially when I have to go home to an empty apartment.

I live next to a city that has more opportunities than I could ever dream of taking advantage of, and enough material to satisfy my burgeoning obsession with photography for years.

It’s beautiful when you feel like you’re a part of something just by being.

My dad said to me the other night, “Looks like you’re living the life you always wanted.”

“Almost,” I replied.

I never want to feel like I’m finished. I always want there to be something next.

I never want to lose my momentum.

Or my faith that I’ll always be exactly where I need to be, with the people who need and want me.

The Time Has Come…

About three months ago, I came up with the idea of having a conference for just for adults with type 1 diabetes. A conference for a group of people who are marginalized because they are neither the majority nor children. A conference for a group of people who are dealing with diabetes burnout because they’ve been poking and prodding their bodies for ten, twenty, thirty years. A conference for a group of people who have their own unique fears about life. A conference for a group of people who aren’t talked about and feel isolated - but are not alone.

Most conferences are currently geared towards all types of diabetes. They discuss complications and they discuss healthy eating. They discuss schools and sports. These are all important things to talk about, but I felt that there were some unique challenges to a life as an adult with type 1 diabetes that never got addressed at the conferences I attended. Things that I wonder about. Explaining my insulin pump on a first date (or tenth?). Having a baby. Changing jobs and dealing with a whole new set of annoying questions. Fighting an insurance company to let me test more than 8 times a day or give me that continuous glucose monitor or finding a new doctor that doesn’t patronize me. Going low during sex. When I’m burned the fuck out after my 25,000th blood glucose test.

And this is just what I’ve come up with.

So I sent out an email to a small collection of adults with type 1 diabetes in my address book to find out if they thought this was a good idea. Most of the people, obviously, gave an enthusiastic yes!

Since that time, we’ve had a couple of discussions about what the conference would be like and now we’re looking to get your input and suggestions. With the help of Kelly Close and her team at Close Concerns, we have created an interest study to determine who and what you would like to see at a conference. Right now we’re just trying to answer some basic questions, but hopefully, if all goes well, I will back over the next few months to tell you more.

Also, we’re holding a contest for the name of this future conference. The person who creates the name that is eventually chosen by the planning committee will receive a copy of Know Your Numbers by Amy Tenderich and Dr. Richard Jackson. Two runner-ups will receive a Six Until Me mug or a Diabetes Mine mug (donated by Kerri and Amy, respectively).

We are trying to gather as much input as possible, so please send this to everyone you know, put it on any message board, and please blog about it! The survey will close on Friday, September 7, which gives everyone about two and a half weeks to complete it (it really should take you about ten minutes… and five of that will probably go to just the conference name question!).

Adults with Type 1 Conference Interest Survey

If you have any questions regarding the conference, please email me.

Really, tell everyone.

Beantown Bound

For someone who grew up on the other side of the country, I’ve managed to see quite a bit of the East Coast. In fact, I’ve been to almost every state from Connecticut all the way down to Florida (with the noted exception of Delaware, and I still question whether or not our hotel was in Maryland or D.C.)

I still have not managed to really break into much of New England but I’m seizing the opportunity over Labor Day, which is my first three-day weekend since starting work (and my only vacation time until Thanksgiving). I’ll be in full road-tripping force as I drive from little town in Jersey through New York, into Connecticut (::waves to Kerri::) and up 1-95 into Rhode Island for a day before arriving in Boston in the evening on Saturday, September 1. I’ll be in Beantown until late Monday afternoon before I make my way back home.

This will also be my very first venture into “Pump It Your Damn Self” land. I’m kinda nervous.Yes, I’m 22 and I have never pumped my own gas. Please do not die of shock. I just happen to have only lived in the only two states in the country that have people pump your gas for you. Why do you think I moved to Jersey in the first place? Kidding… Kind of.

I’m très excited to go and I’m looking for suggestions on what to do while I’m there. I’m staying at a youth hostel in the Back Bay area - no idea where that is or what it means, but apparently it’s a good location, so there you go. Any suggestions for what I should see, do, eat?

Better yet, does anyone want to go with me? (This is, by the way, a perfect example of what I explained last week.) Please email or leave a comment if you’re in the general vicinity. Even if you can’t make it to Boston, I might be able to make it to you. Maybe. If you ask nicely. And are not a psychopathic stalker.

In other news: I’m becoming quite the Broadway aficionado these days. I attended Curtains, my second Broadway show this summer, last Wednesday with my friend Yuliya, an old college housemate, and her boyfriend. Curtains has brought my Broadway count up to five shows, with four of them actually being on Broadway (the fifth was The Lion King on tour in Portland). I cannot say enough about this show. David Hyde Pierce is hysterical - actually, the entire cast is amazing - and the musical numbers were unbelievable. The show was a perfect mix of sharp, snarky banter and make-your-heart-sigh ballads.

This Friday, I’m off to yet another play. This time I’m seeing The Year of Magical Thinking, starring Vanessa Redgrave. I don’t know much about the play other than what is on the website, but it’s Vanessa Redgrave. Not only do I get the tickets at discount through work, but this is also the last weekend the show is playing and I would regret it if I didn’t go.

And on top of that, I get my brand new red couch this weekend!

Which I think I’m looking forward to more than anything.

Verizon Sucks, Portland Rocks and Even More Funny Websites

Wrapping up the end of the week with another madcap edition of the Friday Five. Enjoy!

• In today’s edition of “Please Kill Me Now,” check out this exit survey from Tom, a now decidedly ex employee of Verizon. If this is what he told the company, I would love to hear what he said to his friends and family! Thanks to Christine for showing me this!
• I love Portland and Travel & Leisure thinks you should too. They have featured it as “America’s Eden” in their latest issue. It’s true that the Oregon’s Rose City is a magical place and just a couple paragraphs are already making me homesick. Really, if you’re looking for a cool and unusual place to go on vacation, check out the West Coast’s hidden gem - Seattle and SoCal get enough play as it is.
• It’s a bird! It’s a plane! It’s No Impact Man! Okay, not quite as classic of a line as “It’s Superman!” but Colin Beavan could be considered a super man for taking on his latest challenge: a year-long plan to live with absolutely no environmental impact. While living in New York City to boot. Pretty amazing, huh?
  
• First there was LOLCats, but now there are new additions to the line-up. First up, we have LOLDiabetes, created by our own Kerri Morrone (hey that rhymes!), which features hilarious diabetes-related photographs. Who said diabetes is all business? While I’m not at all a sports fan (and two months of living within driving distance of most major league teams has converted me to none of them- ha!), I must admit LOLYankees has me cracking up in my cubicle.
• Slightly cheating with this last one, but hey, I gave you two websites in #4, but don’t forget to check out the LOLCats, which are causing all kinds of furball trouble at I CAN HAS CHEEZBURGER? (And seriously, if you haven’t seen this site you aren’t just living under a rock, you’re living under a rock on the moon).

It’s A Small World After All

A few weeks ago, a couple of my readers asked me where on Earth I find all these diabetic people. I mean, at the rate I’m going, I’ll probably know every diabetic in Manhattan by Christmas (and with the World Diabetes Day celebrations occurring on November 14, that’s actually not too far of a stretch), I’ll know every diabetic on the East Coast by my 25th birthday, and every diabetic in the friggin’ world by the time I retire.

With the advent of snazzy social networks and the proliferation of blogs written by anyone who has an opinion about something, it makes meeting people on the Internet oh-so-easy.

When I was 13 years old, I met someone on the Internet for the first time. No, it wasn’t some skeevy old guy who wanted to “come over” to “watch TV” and “hang out” (thank you “To Catch a Predator” for enlightening us on what that really means) or even an lame-ass who was dumb enough to actually admit on the Internet he wanted to “do me now,” as they say. This someone was a girl who called herself Kate. She said she lived in Philadelphia and we talked for almost a year when I found out that my family and her family would both be in Washington D.C. on the same day - her family just arriving, my family on the way back to the West Coast.

Kate didn’t have diabetes (and she still doesn’t) but she was my introduction into the “spooky” world that is Internet strangers. Fortunately (or maybe that should be “unfortunately”), my experience meeting Kate was wonderful. We toured the Lincoln Memorial, met our respective families and just hung out for a few hours.

I continued to meet people on the Internet through high school. None of them ever claimed to be men. I was always wary of any guy that I didn’t know in real life chatting with me online, whether or not he claimed to be my age or not. Every time I met someone, I always had a family member with me. Heather, my webmaster from Diabetes Teen Talk, and I met online when we were fifteen. Her mom and dad came with her to my house, where my mom and dad also were.

When it came time to meet people with diabetes, I had already met a total of four people from the Internet, and spoken to three others on the phone. Amy Tenderich and Jon Schlaman were the first people I met from the Internet, when I happened to be on vacation over Spring Break in San Francisco. A few simple emails and a couple phone calls confirmed not only proper identity but also location, both of which occurred in public.

Now that I’ve met almost two dozen people from the Internet, I suppose I’ve become rather comfortable with the idea. I don’t typically distinguish between “IRL friends” and “internet friends” when telling stories with people. If I’m talking on AIM with George and he tells me something funny, and then I decide to tell my dad, I don’t start with “Well, my internet friend George said…” I just say “My friend George.” Because he is. He is my friend. I don’t need to qualify it with anything. How often do you say “my friend from work” or “my friend from yoga class” unless it actually has something to do with the story?

I have also met a lot of other people with diabetes in other places. Volunteering at the Juvenile Diabetes Research Foundation during high school was great because I was also going to different diabetes events, meeting people and sharing stories. Once you start attend an event here and there, you start noticing repeat people. Probably the best place to find people in your area with diabetes is to visit the JDRF website and look for chapters in your state, and then call them up and ask about upcoming events. Or you can check out the American Diabetes Association, mailing lists at Children with Diabetes, or even Facebook!

The moral of the story is this: If you’re in the area of other known Internet friends and you want to meet them, do it. It’s really not as scary as it sounds. Just meet in a public place - partially because it’s safer but mostly because it’ll actually give you something to do besides sitting on your couch - and have a phone call beforehand. It helps with both identity verification and you get to know their actual personality rather than their online persona (because admit it, you are way funnier when you spend fifteen minutes to editing and re-editing that pun you’re about to post).

Also: get out and meet people! Don’t rely too heavily on the Internet if you want to actually see how other people are living their lives with diabetes. A blow by blow description of a continuous glucose monitor is great, but actually see one work is amazing! If you’re not on a mailing list with your local JDRF and/or ADA chapter, sign up and take the opportunity to go to a Walk to Cure Diabetes or a Gala or a golf tournament. There are over 20 million Americans with diabetes, and at least two million have type 1 diabetes. Trust me, someone with diabetes lives near you.

Not that you have to be anywhere near the person to actually meet them. Take me and Joseph for example:

Taken from a four-year-olds perspective

I met up with the Miller family on my first day in Chicago. I have been meaning to post about it but only recently received pictures from that evening. Sandra and Co. generously picked me from O’Hare airport as they were passing through on their way home from their trip to Massachusetts. We spent a couple of hours near a deli in Chicago, just hanging out and talking about diabetes, insulin pumps, blogging and social networking and privacy issues, Chicago, moving and my new job.

Evan, Sandra, Joseph and me

Afterwards, they drove me to the train station (have I mentioned that they are generous?) and then Ryan bought my train ticket and Sandra insisted that I call her when I arrived at my hotel. Once parents, always parents. To everyone, apparently.

But that’s not all!

On Sunday, I met Christine, who came all the way from Buffalo, NY with her father to visit her family for her grandmother’s birthday party. Christine and I met up this past Sunday morning at Union Square and had breakfast at a charming little restaurant called Friends of the Farmer on 18th and Irving Place, just a block away from Gramercy Park. Afterwards, we walked all the way to South Ferry (that’s about five miles), passing through Washington Square Park, Tribeca, and the World Trade Center site. We then took the ferry across to Staten Island where we bid farewell (for now).

Meeting people with diabetes is pretty much the easiest thing you can do, you see.

You just have to ask.