Diabetes isn’t just insulin, test strips and emergency orange juice. There are some downright awful things that can come with it, some disgusting, some embarrassing, some sad, some conveniently qualify as all three, and many of them not easy to talk about, let alone post on the internet. Anymore, I kind of have to laugh at how ridiculous it is that the only complications I learned about as a kid were retinopathy, nephropathy and neuropathy. Those are truly terrible conditions, all of which I’ve had at least an unsavory taste (thankfully not much more), but there seem to be an endless list of other complications, ones that don’t disable or kill you, but ones that can significantly affect quality of life, ones that no one tells us about until we’re standing in a doctor’s office wearing a paper gown trying to get a diagnosis for some seemingly unrelated problem. Every time I’ve been in that position, I’m always left feeling a little blindsided, thinking, why the hell is this the first time I’m hearing about this?

Back in July 2000, I found a lump in my right breast. I almost never did self exams the way we’re told we should. I come from some mutantly freakish healthy long-living gene pool, and no one in my family has had cancer. Of course, no has diabetes either. One day, I just felt a lump. I didn’t do anything about it, and I can’t even think of what my logic was about that. Maybe I thought it was my imagination, or I thought it had always been there and I’d never noticed it, or I thought it would just go away on its own.

Normal Breast

A couple of months went by when I realized it had grown, so I decided I had better call the doctor. I vaguely recall seeing my OB/GYN first, and ultimately I saw a surgeon, but I can’t remember if there was another doctor in between. Regardless, I had my first mammogram. That experience and the machine were pretty scary. It also seems kind of pointless for those of us who don’t have enough upfront to hide a pump because they could barely get enough tissue between those plates to even look at. In addition to the mammogram, I also had an ultrasound, but neither procedure provided definitive results.

During the couple of months all of this was happening, I was starting to get a little freaked out. At the time, I was working in a hospital on the psychiatric unit and was friendly with many of my coworkers. I was getting all kinds of support which was great, but it came with a fair amount of advice, and all of it was kind of overwhelming. I was told to stop using artificial sweetener (ya, right…) and caffeine. People told me about their experience or the experiences of people they knew with fibroids and cysts. One of my coworkers, a nurse who has since died of liver cancer, had beaten breast cancer, so she very kindly pulled me aside to offer her support.

Mammogram Machine

As I said, ultimately I landed in a surgeon’s office. He did a needle biopsy which turned out to be useless because they got so few cells. That meant whatever had taken residence in my boob wasn’t filled with fluid, but that only ruled out some possibilities. The doctor was clearly concerned about the results of the various tests, mostly because they hadn’t given any kind of conclusive results. The most telling procedure he had was what I had been doing from the start, palpating it, and it was growing exponentially. Back in July, it was a pea, but six months later it had blossomed into a kiwi. It was time for a lumpectomy.

It was surgery. I was unconscious. The doctor probably chatted with me after the fact, but I don’t remember now. The lab results would be back in about a week so my follow-up appointment was scheduled. In the meantime, I was groggy and sore, so I went home to rest for a few days.

The follow-up appointment finally arrived after an anxiety-filled week. It was benign, so that was a relief. The doctor said that to palpate it, it seemed to be a discrete mass, but during the surgery he found it had diffuse edges so he had removed it as much as possible, trying to leave as much breast tissue as he could since there wasn’t much to begin with. Then he told me that after he got the official diagnosis back from the lab, he had poured over textbooks to find anything about what I had because he had never seen it before, and he’d been a surgeon for upward of twenty years. I had sclerosing lymphocytic lobulitis, more commonly called, diabetic mastopathy.

Shit, was there any part of my body that this disease would just leave alone? To quote fellow blogger, Kelly, W. T. F.? There wasn’t anything to be done about the condition, but watch it. He gave me a copy he had made from a textbook of a description that was all of two paragraphs to take with me. I googled it when I got home, and I think I got maybe three results back in early 2001. I just googled for the sake of comparison, and I got eleven pages of results, so there’s some decent info out there now. The internet is a fabulous thing: a basic description and a medical journal article.

Mastopathy*

Maybe three months later, I felt a mass in my other breast. I skipped all the formalities I had gone through before. The doctor figured it was the same thing, but because it seemed like cancer otherwise, the only way to be sure was to do a lumpectomy. The results were identical.

The condition went on to take over the remaining breast tissue in both breasts. Pardon me for getting a little personal and possibly graphic, but my breasts look normal, other than the scars from the surgery, although those are barely noticeable anymore. The outer layer of fatty tissue keeps them looking normal, but the actual breast tissue underneath is hard so my breasts don’t feel normal. I lost some volume when the tissue was removed which is admittedly very disappointing since I didn’t have a lot even before the surgeries. Regular self-exams are pointless because both of my breasts are hard lumps – I’d never be able to differentiate something unusual growing in there. Mammograms are pointless because the tissue is so dense that the imaging technology isn’t effective. I’ve seen that MRI’s are a more effective imaging approach to detecting abnormal growths, but shockingly enough, insurance companies don’t want to pay for that, especially in anyone without a strong family history of breast cancer.

Diabetic mastopathy is associated with long-standing type 1 diabetes. It’s primarily seen in women, but there are rare cases in men, and also rare cases in type 2 diabetics. It’s associated with a history of poor glycemic control (guilty), and microvascular complications (this was two years after my vitrectomy). It hasn’t caused me pain, but there can be discomfort with it. The primary concern is that were I ever to develop breast cancer, I’d never know – not for a long while anyway. Besides that, it bruised my self-image and self-esteem and caused a lot of anxiety back when I was single and dating, but what’s one more permanent, incurable medical condition, right? At least this one is relatively harmless, and I pretty much asked for it by not taking care of my ‘betes. One more reason to stay on top of those BG’s.

*Image from Diabetes Care

Halloween is a pretty loaded occasion, especially when parenting a diabetic kid. Not only does it revolve around how much loot the kid can get trick-or-treating, but it’s the unofficial start of the holiday season, filled with its prerequisite carb-centric obstacle course. One thing at a time though, right?

So let’s start with Halloween with all its chocolaty, sugary, sticky, melty, gooey goodness. My relationship with Halloween has been a love-hate one since I can remember. I wanted to love it, but I felt like it hated me. Back in the days of the exchange diet and beef/pork Regular insulin, it was a challenging time. Now, not so much. Carb counting and analog insulins make it perfectly manageable.

Since it’s so manageable, there’s really no compelling reason to keep a kid from doing what every other kid does on Halloween. Isn’t it infuriating to think about a diabetic kid treated differently than other kids if we were talking about, oh, a soccer game? So how can it be OK to exclude a kid or treat them differently at Halloween? Both will have an impact on BG’s in one way or another. In the case of the soccer game, would a kid be hurt, ashamed of their diabetes, or angry? Then doesn’t it follow that the Halloween example could lead to those same feelings?

Trick-or-Treat!

I really do understand wanting to be cautious. I have this disease after all, I know there are dangers that have to be considered, and I grew up with it so I dealt with the difficulties that Halloween frequently brings to a diabetic kid. It’s important to find a middle ground though, and there are times when it’s OK to loosen the diabetes reigns a little, especially if the trade-off is allowing a diabetic kid to feel just a little bit normal. I also know that an occasional crappy BG isn’t the end of the world, especially since it can be caught and treated.

To me, the challenge of living with diabetes, once you have some good basic knowledge, isn’t balancing BG’s, insulin, carbs and activity – as frustrating as that can be some days. The real challenging is balancing enjoying life with the tasks and responsibility that come with diabetes. It’s a tricky balance, and of course, it varies greatly from one person to the next. For a kid though, quality of life means doing kid stuff! Drawing on the sidewalk with chalk, having bike races up and down the street, building snowmen and sand castles, playing soccer (or softball or ballet or whatever activity seems fun), and donning a super-cool costume to go trick-or-treating (or trunk-or-treating as George and his family did!). Being excluded from those festivities is, well, really just being punished for having diabetes, and even if it’s not called punishment, that’s exactly how it feels.

Halloween with Friends

I truly believe the people who best understand what it’s like to be a kid with diabetes are those of us who were kids with diabetes once upon a time. We lived it, and now we’re old enough and have the advanced reasoning and insight that only comes with adulthood to say what it was like and what it ultimately meant to the relationship each of us has developed with our diabetes. It’s an added bonus that hindsight is 20/20.

So, if I had a diabetic kid, I’d let my kid go trick-or-treating or go to that Halloween party or participate in that class party – whatever the mode of celebration might be. I’d let them get as much loot as they wanted because there’s something unspeakably gratifying about sprawling on the floor after the fact with your friends or siblings, counting it up, comparing, and trading (I’ll give you my SweeTarts if I can have that Heath Bar…). Then there would be a very conservative bolus before the much anticipated pig-out – saving every last wrapper. Finally, when it was all said and done, we’d count the consumed carbs based on empty wrappers, calculate the required bolus, and give the difference between the calculation and what was given pre-pig-out.

Loot

A slightly amended version would be to put a limit on the pig-out, however many pieces of candy seems reasonable. Depending on the kid’s age, that limit might not be strictly enforceable though. When I was a kid, I know I ate a couple of pieces while trick-or-treating, you know, to maintain peak performance. That’s why I advocate a more liberal approach to managing Halloween. If the kid is given some freedom, the goal is that they’ll feel comfortable going to their parent, all empty wrappers in hand, ready to do some math and shoot-up without feeling judged or made to feel bad. “OK, you ate these 12 pieces, and that equals 100 carbs, so that means 10 units. Thanks for hanging on to all those wrappers because it sure made calculating that a lot easier than guessing! I really appreciate your help with that. Did you have fun?”

Doing things as I suggest, would you have to chase a high? Likely, but in the grand scheme of things, that’s a small price to pay for a little freedom and the chance to just be like everyone else, especially on an occasion that can make you feel so different, and from which everyone else feels obligated to exclude you. As adults, I think the majority of type 1’s splurge on things occasionally and end up chasing a high. It’s part of the package deal that diabetes is, and it’s important to know that it’s OK to do that on occasion because joining in with others and enjoying life matters. Teach a diabetic kid to do that when they’re young and a parent can guide them, rather than let them figure it out with trial and error on their own later. When that kid becomes an adult, chances are good they’ll be really grateful for it.

Several weeks ago, Katie, a type 1 social work student in New York City contacted me because she had stumbled upon my post about the hole in diabetes health care. She was in complete agreement with me that the mental health needs of diabetics are too frequently disregarded by our health care providers. I’ve consistently been frustrated with the paucity of resources here in the Philadelphia area, and I’ve been investigating options for filling that gap.

Katie is already taking action to make a positive contribution to the need so many of us have recognized. If you live in the New York City area, and you’re a woman, age 18-35, with type 1, Katie is starting a support group in cooperation with Friedman Diabetes Institute of Beth Israel Medical Center.

Topics may include:

Managing exercise, eating, and body image
Managing relationships
Coping effectively with stress and emotions
Discussing feelings of fear, shame, or frustration
… and others that you can bring!

The first meeting is Tuesday, November 18th 6:00PM – 7:30PM. After the first meeting, the group will meet bimonthly on the 2nd and 4th Tuesday of each month.

There is no cost for participation. The group will be self-led however there will be a staff member from Friedman Diabetes Institute available during the meetings. Katie’s goal is to create a place to talk with others about living with diabetes, focusing on the needs and challenges specific to being a young woman.

If you’re interested, please e-mail Katie at DiabetesNYC@gmail.com to RSVP, or if you have questions, comments, or ideas.

The Friedman Diabetes Center at Beth Israel Medical Center is located at 317 E. 17th Street, between 1st and 2nd Avenues on the 8th floor.

It sounds like a marvelous opportunity, and I encourage anyone who is able to attend to give it a try, whether you’re feeling challenged by diabetes or not. I believe there’s always something to be gained from being with people who understand what it means to live with diabetes.

I hope my lady friends up in NYC will consider attending (hint, hint). Much thanks to Katie for contacting me about this and for taking the initiative to organize it. I hope the group is well-attended!

To backtrack a bit, I left the New York metropolitan area Saturday night shortly before 10:00 in the midst of a nice drenching rain. I really despise driving at night because my night vision isn’t what it used to be – one of the glories of having had diabetes for so long. I generally avoid it altogether whenever possible, especially if I have to drive in areas that are unfamiliar to me. Throw in a good downpour, and I’d rather not drive. Allison’s place was only a few turns from the highway though, so I white-knuckled my steering wheel, and headed home. Eventually the rain let up, as did the volume of traffic the further I got from New York, and the drive was fairly uneventful.

Right before I left to drive home, I had called Jason to let him know I was leaving. He told me the 3rd game of the World Series had met a rain delay, and was supposedly going to be starting soon. This was good news as it meant I’d be home in time to catch the latter part of the game. It was the 5th inning when I got home, so once I got my sweatpants on and relayed the day’s highlights to Jason, I parked myself on the sofa to watch the game.

I think we went upstairs around 1AM to watch the 9th inning in bed. We were both exhausted and wanted to go to sleep, but we wanted to see the end of the game first. I felt a twinge of nausea as I was going upstairs, but attributed that to the Cipro I’ve been taking for my UTI, something I’m regularly plagued with. When I got in bed, I checked my BG. Turned out that nausea had more to do with being 37mg/dl. I never used to get nauseous with lows that I can recall, but for the last ten years or so, every once in a while, I get nauseous. This was one of those times.

Jason had just climbed into bed when I told him I was 37. He made kind of an annoyed grunting sound, and headed downstairs to get me some juice. I guzzled my juice, 30g carbs worth, thinking that would do the trick, if not give me a residual high. I settled into bed, curled up next to him, and rested my head on his chest so we could watch what was left of the bottom of the 9th inning in a tied game. It had been a long day, and holy cow, I was spent, so I started to doze.

I don’t remember anything after that, so most of the rest of this was relayed to me by Jason.

He realized I had fallen asleep, so he patted me and told me the Phillies had won (Yay!!). I wasn’t very responsive, so he put his hand on my back intending to try to wake me up, but found me dripping in sweat. He decided I was not in any condition to do anything for myself, so he checked my BG, and I was 28.

He brought me another glass of juice, but I wasn’t responding, so he started yelling at me as if he was angry. Jason rarely gets so angry that he yells. I can probably count on one hand how many times he’s been that angry at me since we’ve been married (5 years next April), so it gets my attention and takes me off guard when it happens. He knows that, so yelling at me seemed like a reasonable tactic to elicit something from me. Apparently, it worked – sort of. He got me to sit up and start drinking, but then I started to fade like I was going back to sleep. More yelling, and I drank the rest, and in my stupor, continued to try drinking from an empty glass until Jason took the glass from me.

Glucagon Kit

Then he was just trying to keep me up and awake, but I was having none of that because I laid back down despite his efforts. He checked my BG again, and it was 27, so he pulled the glucagon kit out of his nightstand. Now, it’s been 10 years since I had the pleasure of a glucagon injection. I always keep at least one kit in the house, and honestly, I think it’s careless for any insulin-injecting diabetic, T1 or T2, to not have one handy. The only logical exception would maybe be someone who lives alone because who would inject it? Still, people who regularly spend time around any of us ought to have access to one in case we need it. You never know. I digress though.

Early in our relationship, I explained glucagon, and as a symbol of our increasing intimacy, handed him one to keep. Diabetes is so inherently romantic. I’ve carried one with us no matter where we’ve traveled. He’s always seemed kind of laissez-faire about it, and I’m not sure if that was confidence or denial. That’s neither here nor there though. It had been a long time since I had explained how to use it, so he proceeded to read the instructions while I laid there, I’m sure hoping I would emerge from my low before he had to use it.

He tried to get a response from me again, and this time I was completely unresponsive. He was smacking my face – not in a domestic violence kind of way, but in a wake-the-hell-up way, and he said he wasn’t getting anything out of me, not a peep. He checked my BG, 26.

26mg/dl

Now, the glucagon instructions say it can be injected anywhere insulin would be injected. I had told him to use my thigh, but that was a long time ago. He’s only ever known me to inject insulin in my stomach, so that’s where the glucagon went. Is that OK? I don’t even know, but I did start to come out of it.

The first thing I remember after having rested my head on his chest back during the 9th inning, was sitting on the edge of the bed, Jason trying to sop the sweat off me with paper towels, which apparently, he’d been doing as much as possible the entire time. Once I was gaining some awareness, he realized we had no clean sheets, so he changed my pillowcase, and I put on my big fuzzy robe because those frozen-to-the-core chills were setting in. The robe was also my protection from the wet sheets. I went right to sleep because being unconscious is so surprisingly draining. I think Jason was still riding the adrenaline wave because he went downstairs to play X-Box. It was quite the finale to my day at Diabetes 2.0.

Also, because my husband is so hilarious, I have to add how he suggested I describe what happened: I woke to see my husband’s rippling muscles, drying the sweat off me, his cape billowing in the breeze. If not for his courageous daring deeds, I wouldn’t have survived. It’s slightly exaggerated, but he is pretty terrific.

Diabetes 2.0 was fabulous! I met Allison at her apartment, and we took the bus into Manhattan. As soon as we got to the Marriot Marquis, bloggers just started appearing: Kelly, Scott, Bernard, and Karen and her husband, Pete. They had an impressive continental breakfast spread of fruit, muffins, croissants, bagels, hard-boiled eggs, cereal bars, and cheese. I am a total turophile, so I’m in heaven when there’s a beautiful cheese assortment (there’s your word of the day). They even had little signs with the carb counts for the baked goods. Although we all concurred the count of the bagels was incorrect. Supposedly they had 56g carbs, but having eaten more than my fair share of bagels, those bagels didn’t have more than maybe 30g carbs. Regardless, the counts for the muffin and croissant I had seemed accurate enough because I used those numbers to determine my bolus, and my BG’s stayed stable all morning.

We took our seats, and listened to the presentations. Those first presentations weren’t of great interest to me. I read a lot of medical journal articles so I’m no stranger to medical jargon, but I generally stick to behavioral health research. The technical details of biology and biochemistry aren’t my thing, and as I said last week, I don’t have a burning interest in cure research. It sounded like most of what they presented was primarily continued work on theories I’ve been hearing about for years.

Dr. Rapaport: When Diabetes Hits Home

After that part of the program, I met Gina and Val, and got to briefly chat with Amy as people were dispersing to attend their respective breakout sessions. Because of my interest in behavioral health, I attended the breakout sessions by psychologist, Dr. Wendy Rapaport. The first session was for parents of diabetic kids, and covered ways to facilitate children’s development of a healthy relationship with diabetes. Dr. Rapaport easily engaged the parents in a great discussion.

Amy Tenderich

Everyone gathered for lunch after that breakout session. As with breakfast, the carb counts were provided (don’t you wish that info was handed to you anytime you eat anywhere?). After lunch, some of the head administrators at DRI spoke, and then the panel discussion, ‘Hope or Hype?’, moderated by Amy Tenderich, began. It was a very interesting discussion that included questions posed to the panel that Amy had collected last week on DiabetesMine, in addition to some audience questions. The main idea that seemed to come out was that the headlines we see so often about “breakthroughs” are in fact significant advances for the scientists working on the cure, but diabetics and their families should take into consideration that each of these headlines generally represents a teeny tiny step towards solving a problem that still isn’t completely understood. That’s what I took away from it anyway.

Hope or Hype? Discussion Panel

Following lunch and panel discussion, there was another breakout session. Again, I attended Dr. Rapaport’s session for adults with type 1 about managing the diabetes police. Again, her engaging manner generated an active dialogue. After the breakout session, everyone gathered for the final presentation on managing burnout by Dr. Rapaport, which was as great as the other presentations of hers I had seen. We talked about diabetes-related behaviors that trip most of us at some point or another. I openly admitted my aversion to exercise that has become the albatross around my neck – but that’s another topic for another post. She wasn’t able to get through all of her presentation slides during her presentations as the sessions were relatively short. I’ll be emailing her to get copies of her presentations, so at some point in the future, I’ll be able to share some of that info more thoroughly.

We stayed behind to get some group photos and chat before we went to dinner at a wonderful restaurant Allison chose. Amy and Fran weren’t able to go out with us because there was a dinner function for the presenters after the conference. The rest of us made our way in the rain to the subway station, where I rode the NYC subway for the first time. I’ve been to New York maybe a dozen times in my life, and just never had occasion to ride it. Nothing much to say about that though. It was a subway. Dinner was delicious, and we had a great time. I had scrumptious cranberry walnut pear turnovers with vanilla bean ice cream for dessert. It was was to die for. I normally order whatever has chocolate, but decided to try that instead, and I was not disappointed. Luckily, Val offered a couple bites of her chocolate souffle, which was also awesome.

Eventually it came time to leave as people had trains to catch. Allison and I headed back on New Jersey, and I drove home to catch about half of the Phillies game. There’s actually an addendum to this story, but I’ll save that for another day this week.

All in all, it was a lot of fun, very informative with a great variety of breakout sessions to meet the needs of all the attendees (families, healthcare professionals, adults with diabetes, you-name-it). I was so happy to have the opportunity to meet fellow bloggers and just spend the day with other diabetics. Who knew having diabetes could be so fulfilling and fun?

Bloggers

Bloggers: Scott (Scott’s Web Log), Fran (Diabetes, Day by Day), Gina (The Diabetes Talkfest Blog), Karen (Bitter-Sweet Diabetes), Me, Val (Dr. Jekyll and Mrs. Low), Kelly (Diabetesaliciousness), Allison (Lemonade Life), Amy (Diabetes Mine), and Bernard (Bernard’s Blog)

Special thanks to Allison for giving me the nudge I needed to go, and letting me tag along with her into the city.