Last October, I created the World Diabetes Day Postcard Exchange hoping for maybe 100 or 150 participants. There wasn’t anything too fancy about it. People found out thanks to the magic of social media, and emailed their name, address, and details they wanted taken into account when I matched them to a postcard buddy. I entered each participant’s information on a spreadsheet, and manually matched them based on age, type of diabetes, gender, number of years living with diabetes, and relationship to diabetes (self, parent, sibling, spouse, child, friend, aunt, etc.). I flagged emails in my received box so I knew who was entered on the spreadsheet, if I needed to send a follow-up email, if I had emailed their match to them. I’m not very good at planning and organizing, so it was a very dynamic process of refining what I was doing as I went along. As the number of participants increased, I developed a system for responding, sending confirmation emails, sending postcard buddy names and addresses, and following up. In the end, an astonishing 529 people signed up, far beyond my expectations, so it was an absolute miracle that I pulled it off.

Since it was the first year, and far more people joined than I anticipated, it was not without glitches. Not surprisingly, some postcards got lost in the mail, but the bigger problem was people not sending postcards at all. I did my best to rematch people who didn’t receive cards with people who volunteered to make extra cards, but in the weeks after World Diabetes Day when this was proving to be an issue, Jason and I had a long anticipated vacation, I was trying to finish my school work before the semester ended, and we had just gotten a new puppy, so I was completely overwhelmed trying to multitask. I was literally sick to my stomach and losing sleep trying to respond to people who were emailing me to say they still hadn’t received postcards, contact those people who seemingly hadn’t sent postcards, and reach out to anyone who was willing to send extras. There was also understandable disappointment from people who received store-bought postcards in a handmade postcard exchange to which all I could do was apologize because I felt like I should have been clearer that postcards were to be homemade. I wanted everyone to have fun and enjoy it, so I felt personally responsible when that didn’t happen.

I still feel terrible that not everyone was satisfied with their experience, so I’ve been working to make improvements. I hope this will eliminate or at least minimize the things that went wrong last year. There is a dedicated website now, www.wddpe.com, so all the information about joining is in one central, easily navigable location. Instead of having to manually enter everyone’s information onto a spreadsheet from emails, there is an online registration form that automatically puts everything onto a spreadsheet for me. There is an online gallery on the website with public image uploading so everyone who makes or receives a card can post a picture and browse images of others’ postcards.

There are some other improvements I hope to make, but they are contingent on receiving a Seed Grant from Diabetes Hands Foundation. This grant money will go towards stipends for two people to help me communicate with participants. While the manual work of entering data on the spreadsheet is now automated, each person who registers still has to be emailed a registration confirmation, and once everyone is matched to a postcard buddy, the name and address of that person needs to be sent to them. I expect there will be a need to follow up with some people too. I desperately need help with this part of the project, and I would like to be able to compensate the people who help me.

If I receive the grant money, I also plan to promote this project. I’m excited that as of today, 99 people have already registered, as many as I had hoped would join last year, and it’s only June 15th… but we can do better! For as much work as it is on my end, I believe this project has great value to those who join. There is value in the self-expression that goes into making the postcard. There is value in connecting with people. We connect with people in the DOC, but there are so many more people out there, and I want to find a way to reach some of them. Sending mail is old-fashioned, but I think those who received a postcard in the Postcard Exchange in 2011 can attest to the magic of receiving a piece of snail mail, made and mailed by another person in the world who “gets it”. Should I receive the grant money, I will spend some on Facebook advertising. I am already ordering promotional postcards to take the the Children with Diabetes Friends for Life Conference in Orlando in July, and if I receive the grant money, part of it will compensate me for the cost of the postcards.

To win the grant, I need your help though. Please watch the Vimeo video about the project. Please click “Like” (you need a Vimeo account to “Like”, but it’s easy to make an account). Please click “Share” and share the video to Facebook, Twitter, Google+, and Pinterest (you don’t need a Vimeo account to “Share”). Each “Like” and “Share” count as a vote, and if the World Diabetes Day Postcard Exchange video receives enough votes, I will receive the grant money and be better able to grow and improve the project, connecting more people with diabetes with each other, and making it a better overall experience for participants.

Today is the LAST DAY to vote, so please don’t hesitate! “Like” and “Share” today!

Today’s D-Blog Week Topic is What They Should Know: Today let’s borrow a topic from a #dsma chat held last September. The tweet asked “What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?”. Let’s do a little advocating and post what we wish people knew about diabetes. Have more than one thing you wish people knew? Go ahead and tell us everything.

I’ve shared a lot of personal things here, but there are a few things I’ve skirted or glossed over because it all seemed to fall squarely into the TMI pile. The problem with that is those other people who have diabetes and have dealt with similar problems feel just as alone struggling with the awfulness that diabetes can deliver as I have, and the people without diabetes get the edited version, which says something because I’ve shared a lot. Buckle you seatbelt, because here are some of the more unpleasant problems that life with diabetes can offer.

Diabetic Mastopathy: I’ve actually written about this before, and all things considered, I’m quite open about it, but let’s start at the top and work our way down, uh, literally. My boobs are not exactly soft and squishy the way they’re supposed to be. There’s a soft squishy layer, but under that the breast tissue has solidified. When I developed diabetic mastopathy at age 28 in the first breast, they initially thought it was cancer because the hard pea-sized lump became a hard plum-sized lump in all of 6 months. They did a lumpectomy, taking out a decent chunk of tissue because they thought it was something malignant– goodbye barely a B cup, hello A cup. Thankfully, the biopsy showed it was totally benign. When I noticed a hard lump in my other breast three months later, I had another surgical biopsy. They took less tissue, but it’s not like I had a surplus to donate. That biopsy confirmed the same diagnosis. It’s affected the way I feel about my body. The incisions were around the areolae (yes, I totally had to look up the plural), and the scars have healed nicely, but they’re still there. I’m married to a total boob guy too, which is a bummer for him, although, clearly, it wasn’t a deal breaker because here we are. Buying bras is discouraging and depressing because B cups are a standard size, but lots of styles aren’t made in A cups, and when they are, they often have an inch of padding in them. Yes, I wish mine were bigger, but I’d rather wear my girls naturally than wear a bullet-proof bra. I don’t always feel self-conscious about my boobs, but the surgeries and having diabetic mastopathy has affected my self-confidence, so I don’t feel as good about them as I once did, and as I hope I can again.

Yeast infections: This is a common problem for women with diabetes. Yeast feast on sugar, and when blood sugars are high, the kidneys filter out sugar as best as they can. That sugar, along with other wastes filtered from the blood by the kidneys, gets excreted in urine. Just because of the magic of female anatomy, when we tinkle, sugar gets on our lady parts, and this can be a smorgasbord for yeast which live naturally in the body, but given the opportunity, will multiply beyond normal levels. Frequent yeast infections are a common sign of undiagnosed diabetes in women with type 2, and for women with any type of diabetes, they can signify out of control blood sugars. Once upon a time, I didn’t manage my BG’s so well, so I had frequent yeast infections. Yeast infections are simple to treat, but once you’ve had many and you’ve treated them, the yeast start to resist treatment, so treatment becomes an ordeal. Thankfully, now that I take better care of my diabetes, I’ve had very few issues, but they were such a problem for me once upon a time, that avoiding them is one of the top things that keeps me motivated to manage my diabetes, as tedious and thankless as it feels at times. On those days when I get the fuckits, and I’m tempted to eat potato chips straight from the bag or ice cream right out of the carton, without taking the time to weigh and measure so I have a semi-accurate carb count, I remind myself that I don’t want to die, and I don’t want an itchy hooha. One is my long-term goal, and the other is my short-term incentive.

Diabetic Diarrhea: Before you’re all like, “Eww, gross,” get over it… everyone poops. I went looking for more information about this for the sake of writing this, and came across this article from Clinical Diabetes, co-written by one of our favorite endocrinologists, Dr. Steven Edelman. According to the article, diabetic diarrhea affects up to 22% of patients with longstanding diabetes. Diabetic diarrhea hasn’t plagued me like it did when my BG’s were out of control, but I still occasionally have an issue with it. The doctor who initially diagnosed me with it when I was about 25 told me it was related to autonomic neuropathy, so basically, the nerves in my lower digestive tract have been damaged. I’ve had it so bad that I couldn’t leave the house because over-the-counter meds weren’t doing the trick. Thankfully, it hasn’t lasted long enough for me to feel the need to get prescription medication, or seek care from a specialist. It’s been a mild disruption to my life on occasion, it’s embarrassing, it makes me feel awful, it causes anxiety, and it’s a reminder that as much as I try to manage diabetes, sometimes diabetes grabs the steering wheel and takes me for a vicious ride.

These problems haven’t been the end of the world. I was treated for retinopathy, but I still have my eyesight. My kidneys aren’t in awesome shape, but they get a passing grade, and my nephrologist continues to tell me she has no reason to think they’re going to tank on me. I have mild peripheral neuropathy, so I’m not about to lose a limb. I sometimes lament the “quality-of-life complications” that I have though. They aren’t disabling like those more serious and life-changing complications can be, but they’ve affected my body image and relationships in various ways over the years. It’s hard to not feel physically and mentally worn out when your bowels are haywire, your vagina is indescribably itchy, and your boobs, the supposedly hot symbol of womanhood, are defective and embarrassing… as if I need my womanhood further insulted. If you live with this disease long enough though, this is the kind of shit, no pun intended, that you have to man up and manage. Most of the time, I don’t think about it, but there are moments when these problems recur or make themselves evident in some way, which translates into moments of hating this disease, hating my uncooperative body, and hating myself… and that’s what people need to know about life with diabetes.

The first time I signed up for a blogging event, one that stipulated I blog every day for a month, I succeeded. Since then though, every time I sign up for any sort of blog-everyday-for-however-long event, things unravel quickly. Most recently, and most lamely, I signed up for WEGO Health Activist Writer’s Month Challenge in April, and completed a total of zero posts. I knew going into it that I wouldn’t be able to blog every day, but I had thought I could at least do a few days. Not impressive, I know, unless you’re impressed by complete hang-my-head-in-shame failure.

Blogging everyday for a month is clearly not for me, but blogging every day for a week is something I think I can manage, and potentially accomplish, so I signed up for the 3rd annual D-Blog Week, which starts today. D-Blog Week is organized by my dear DOC friend, Karen at Bitter-Sweet Diabetes. I love to support my DOC buddies (especially Karen!), and I love how D-Blog Week is a great opportunity to connect and share above and beyond the usual DOC activity.

Today’s prompt is as follows:

It seems the most popular thing about Diabetes Blog Week is that it helps us find blogs we weren’t reading yet and connect with some new blog friends. With that in mind, let’s kick off Diabetes Blog Week by making some new connections. Think about the d-blogs you read that you think we may not know about and introduce us to one that you love!! Let’s all find a new friend today!

Needless to say, one of the reasons I haven’t been completing blogging events is that I don’t blog much anymore. I’ve transitioned the focus of my online diabetes advocacy work to Diabetes Art Day and the World Diabetes Day Postcard Exchange, partly because I don’t have much to say anymore that I haven’t already said, and partly because I think those are more unique ways I can contribute to the DOC. I like having this space to write an occasional post when I feel inspired though, as I did yesterday, but I can’t do this regularly anymore, and won’t even pretend otherwise. I’m really grateful that some people still like to pop by and read when I do post though because even though I don’t say much here, it’s nice that people are still willing to listen.

Unfortunately, my D-blog reading has become almost as disappointing as my D-blog writing. In my experience, twitter is the best way to discover new blogs, but my tweet action is sporadic. I join #dsma chats when I’m able, but it’s very infrequent that I pop on just to tweet it up. What can I say? Twitter is a lot of work, and when I used it effectively, if you want to call it that, it was a massive time sink. I simply can’t do that anymore which means I’m not “meeting” new DOC’ers like I once did, and I’m not discovering new D-blogs.

I’m not even good at staying on top of the blogs I used to read regularly. My system for blog-reading these days generally relies on people posting links on Facebook. If there’s a link to a blog post in my newsfeed that catches my eye, I’ll go read it. I know it means I miss a lot of great blogs, so it’s far from perfect, but my “Facebook system” works for me better than driving myself nuts trying to read every single diabetes blog. As you can imagine though, my system is not especially conducive to finding new blogs.

So it comes down to this. I don’t have a diabetes blog friend to share with you, at least not one you don’t already know. Maybe I’ll discover some this year as a result of D-Blog Week that I’ll be able to share with you next year. For now, I’m going to go a little rogue, and share some fun art-making blogs with you. I know that’s not the assignment, but perhaps you’ll find some inspiration there, inspiration that you can use to help you with your Diabetes Art Day project or your World Diabetes Day Postcard Exchange postcard (it’s never too early to start!). If you ever have the opportunity to do creative projects with kids, maybe you’ll find some ideas to have a fun art-a-palooza. Maybe you’ll get inspired to do something creative just for the sake of your own personal creative growth. Maybe you’ll have a diabetes-themed spark of creativity that you’ll share with me so I don’t feel quite so terrible about taking liberties with the D-Blog Week prompt today.

PaintCutPaste and PaintCutPaste on Facebook:
A super neat website by an art therapist and mom who shares art projects that are fun for kids and adults. From her site:

“my initial goal for this site is to share with parents, caregivers, and teachers various ideas for creative activities to do with kids. as this blog grows, it expands to include ideas to nurture the creative drive that lives within each of us, as well… our kids help us to remember how much fun playing with art can be, and sometimes it’s fun to take your turn with the paintbrush or sewing needles! i hope this site brings you and yours inspiration and plenty of beautiful paint cut paste messes!”

Art Journaling as a Creative Process and Art Journaling as a Creative Process on Facebook:
This site hasn’t been updated in about 6 months, but the posts conveying the benefits and describing techniques of art journaling are timeless. Have a look through the archive, and discover the true magic of this art form. I love this site, and offer it as a resource to the students in my Intro to Art Therapy course, so now I suggest it to you too. As a bonus, most of the techniques are very adaptable to postcard-making… just sayin’…

It’s Mother’s Day. Mother’s Day used to be all about celebrating my mom, and I never conceived of it as anything else. I can’t say when it occurred to me that it was something more than that. My evolving conception of it has been a few years in the making. As I’ve watched my peers get pregnant and have children, I realized the daughter age bracket had expanded into the mom age bracket, and I started to feel oddly out of place. It wasn’t until last Mother’s Day that it really hit me that most women my age don’t just honor their own moms, but also get to be honored as moms. Last year, Mother’s Day made me sad… really sad.

Unfortunately, not having kids hasn’t saved me from ever-increasing gray hair, so two weeks ago, I was at the salon to get my hair colored. As I stood at the counter to check in, I noticed a promotional sign they had posted for Mother’s Day spa specials, and I felt my stomach sink. The day was coming. Like plenty of grown women, my mom doesn’t live nearby, so other than a short phone call, there would be no brunch or other time spent celebrating my mom. Without that, Mother’s Day has become an uncomfortable reminder that I’m never going to be a full-fledged member of womanhood.

To put this into context, I know Mother’s Day isn’t hard for me like it is for women who have lost their moms, or those who have struggled with infertility and miscarriages. I would never pretend to know the pain those women experience on this day. I can only imagine how difficult it is for them, and my heart aches for them all. However, for reasons that are less clear than might be for those women, I am sad, and I feel alone.

When I was about 20, I started to think having children might not be a good idea for me. The notion stuck, and while I had lingering ambivalence about it, I figured it was the best decision for me, so I got a tubal ligation just shy of my 32nd birthday. A big part of my reasoning was related to diabetes. Having already needed surgery for retinopathy at age 25, and having ever-increasing levels of protein in my urine from kidney damage that was being treated with medication and regular check-ups with a nephrologist, I was fearful that pregnancy would be more than my body could handle. I was afraid of losing my vision, having kidney failure, and most of all, I was afraid of dying.

I was concerned about miscarriages or a complicated pregnancy. I was concerned about having a baby that wasn’t normal and healthy in all conceivable ways that babies are supposed to be normal and healthy, and of course, I was concerned about having a child who could develop type 1. I feel like the guilt of having a child with type 1 would kill me.

There were other non-diabetes reasons that I chose not to have kids. More personally, I don’t have a great deal of confidence that I’d be a good parent because there are aspects of my personality that don’t seem like quality ingredients in the recipe to make a great mom. I was concerned about my depression, how and if it could be managed during a pregnancy, and the likelihood that my child would eventually develop depression, a concern only confirmed after my father committed suicide in 2010, and I subsequently learned more about the mental health issues on that side of my family.

Less personally, I’m concerned about over-population and the environment, because, with all due respect to those who have chosen to have children, having a child is about the worst thing the average person can do to the planet. I’m constantly worried about the state of the country and the world with religious extremism, bigotry, and a long list of societal ills that make me cross my fingers that the world doesn’t self-destruct before my time is up. Not to completely devalue the things that make life and the world beautiful, but when I catch the news, I’m grateful to not be leaving a child in what seems like a perpetual socio-political shit storm.

I’ve given an incredible amount of thought to my decision. I set the choice in stone by getting my tubes tied, and I’m committed to following through despite ongoing ambivalence and doubt. I have very rationally weighed the pros and cons, and when the doubt surfaces, I weigh them again. I always, inevitably, without fail arrive at the same conclusion. Even when I consider the option to adopt, I still can’t reconcile the fact that I don’t think I’m really cut out to be a parent, at least not a parent to human babies – with all my heart, I love and am absolutely devoted to my animal children.

But I wonder. What would it be like to be pregnant? What would it be like to have a pint-sized version of me and Jason? Would the joy be worth the heartache and headache? Would I love it and think it was the greatest thing I ever did? Would I regret it, and wish I had stuck with the better safe than sorry approach I’ve ultimately chosen? Not knowing the answers is really hard.

Because having a child is not something one can take back or do over, my decision to not have a child has been the most careful, thoroughly-considered decision I have ever made. It was not necessarily a hard decision to make, but I’m finding it’s the most difficult decision to live with despite all my perfectly valid reasons for choosing as I have. I think I’ve made the responsible choice. I think it would have been an irresponsible risk to choose otherwise, a risk I wasn’t willing to take, but I’m struggling to be OK with it nonetheless. On Mother’s Day, when it feels like every woman my age and older is being celebrated, I wish I knew what I was missing, and I wish I didn’t feel so alone in my uncertainty.

I’m 39, and this is it. Jason has unequivocally said he doesn’t want children, and my mixed feelings persist – hardly a compelling case to apply for adoption, or get my tubal reversed. There was a time when we could have potentially changed our minds, but the window is closing, and I don’t think anything is going to stop it. Mother’s Day makes me afraid that once it’s closed, I’m going to regret our choice, that on Mother’s Day 5 or 10 years from now, I’ll be crushed that there isn’t a munchkin making burnt toast for me, and giving a handmade Mother’s Day card to me. I’m sad because the opportunity to have children is slipping through my fingers as I maneuver closer to 40. I’m sad because despite all the unwavering evidence to the contrary, I’m scared I’ve made a terrible mistake, and today, and every Mother’s Day for the rest of my life will remind me of that.

There’s an initiative on Facebook called Write Hope on Your Hands for Diabetes. Technically, it’s supposed to be hope for a cure, and while I do hope and believe there will be a cure someday, I have no delusions that I’ll ever see it. It’s better for me to accept that this is how it is, and I can live a fabulous life with diabetes even if I’m never cured. We all do what we need to do to make the best of it, and this is what works for me.

Regardless of whether or not you think you or the diabetic in your life will be cured, living with diabetes today, making the absolute best of it in the here and now, should be important to us all. In that spirit, I’m participating in the Write HOPE on Your Hand project by hoping for healing.

Healing is loving myself with diabetes because loving myself less because of busted beta cells or because I have X, Y or Z complication is not how I want to live my life. Being broken does not mean I am not whole.

Healing is loving my life with diabetes, even though it can be difficult, even though lows and highs screw things up, even though there’s financial hardship. None of those things are more powerful than the gift of joy and love that fills my life.

Healing is recognizing and appreciating the wonderful things that have come into my life because of diabetes. Because I’ve had diabetes for so long, because diabetes has had such a profound effect on who I became, that’s really everything in my life that is meaningful – my husband, my career, and all of my friends.

Healing is accepting that I likely won’t be cured, and knowing my life is no less great or meaningful without it.