Friday, May 24, 2013

Drumroll please...

As you might have noticed, my attention to BBB has been less than consistent as of late. The general busyness of life is always a factor in that, naturally, but the biggest problem is what is always has been: I've had something going on that I wasn't able to talk about here, and I find it nearly impossible to blather on about other stuff when my mind is intensely focused on something else.

But now all that's over and I'm happy to be able to share that Team Hoffmanderson has recruited a new member: we're expecting a little boy, due in late October.

Everything has been going swimmingly (or has been since the morning sickness subsided - a girl, especially a T1 girl, should not have to mainline Ritz crackers 24 hours a day), and all our tests and reports have come back with great results so far. But the biggest news, and strangest thing, for me is that I feel a lot less fear this time around. There's a lot less of that whole "impending doom" feeling going on. It's a huge relief, and I can only imagine it's that way because I've done this already and I've done it with a happy ending - the unknown is a far scarier thing than the known. Before, I didn't trust that a happy ending was a possibility for me...and now I've lived it. That's a huge leap forward.

So here's to a far more enjoyable pregnancy, folks. I'll be the round-bellied lady joyfully responding to any and all questions about Steel Magnolias with a pointed glance at my gorgeous little girl and a rather forceful, "This is my second pregnancy, thank you very much, and this one is gonna end the same way as the first."

STILL not Shelby

Friday, May 17, 2013

D-Blog Week 2013 Day #5: Freaky Friday

Today's prompt:

Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions?

*     *     *

I think just reading this prompt nearly gave me a panic attack. Diabetes is no easy thing, but I absolutely cannot imagine trading it for something else - "Better the devil you know than the devil you don't," right? Hell, I'm not even 100 percent sure how well I would cope with that cure they keep promising. Have you ever been in pain - twisted an ankle, had a UTI, scratched your cornea - and not been fully trusting of the recovery? Like, been afraid to put your weight on that bum leg or had a little PTSD about going to the bathroom? If I no longer had diabetes, I don't know what I'd do - I can't fathom the idea of eating what I want, when I want, with no repercussions or carb-counting. I don't think I'd be able to do it, to trust in it. I'd be the world's only non-diabetic who did 10 blood sugars a day just to "make sure."

But I digress.

I would never want to switch chronic diseases, because everybody's illness is their own personal little hell - that's what knowing all you lovely folks in the DOC has taught me. No matter how perfect something looks from the outside, someone is working their ass off and still feeling like they're screwing things up all over the place, still worrying if they're doing it "right," still wondering what their health and life is going to look like in 5, 10 or 20 years. I know that the world's "best diabetic" still needs cheerleading on a shitty day, still has those aggravating YDMV moments where that asshole butterfly flapped its wings in Tibet and now their BG is hovering well over 300. And I know that we all have our victory days, of course, where we're kicking ass and taking names. But the DOC lesson that I've taken to heart is that our diseases might be different in some ways - we were diagnosed at different ages, they call it T1 or T2 or LADA, or, heck, we're even the same type but I have to bolus for coffee and you don't - but that these ways are so very small as to be inconsequential. The big thing is that we're all dealing with a chronic illness, we're all doing the same endless uphill climb together, and that's a helluva lesson in compassion and understanding.

*     *     *

Click here to check out all the other D-Blog Week posts on this topic!

Thursday, May 16, 2013

D-Blog Week 2013 Day #4: Accomplishments Big and Small

Today's prompt:

We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you've made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small - think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.).

*     *     *

Hands down, my biggest diabetes accomplishment is going on an insulin pump.

For years, I was skeeved out by the entire concept. I was the kind of diabetic who was doing all my fingersticks manually - no kerchunker for me, thankyouverymuch - and I was running perfectly acceptable A1cs on MDI. Why on earth would I want to change what was already working for me? And who in their right mind would want a piece of plastic embedded under their skin?! I had a whole list of why the pump was so horrifying: embedded sets, loud and awful inserters, my skin's intense reaction to most kinds of adhesive, my propensity for scarring, and, most terrible, wearing a physical reminder of my disease 24/7. My list was lengthy, but the truth is that I was terrified of the infusion sets. (Again, I was doing manual finger sticks, and had been for more than 15 years.) The pump was my diabetes bogeyman.

But then I had an endo appointment to discuss the idea of me eventually getting pregnant. My doctor told me I had two options, since Lantus wasn't approved for pregnancy: I could go back on an NPH regimen or I could start on an insulin pump. Apparently, NPH is an even bigger diabetes bogeyman.

I did hours of research online. I signed up for "Thinking about the Pump?" classes at the Berrie Center. I dutifully went and sat through the class, B by my side. My skin was crawling the entire time, I was nervous and anxious and trying to maintain my calm, and failing miserably. When the poor CDE running the class got out some infusion sets so we could try them, I got the sweats. As the only actual diabetic in the class, I went first. I walked up, the CDE stuck the infusion set to me, and I tried to brace myself for the harpoon. I was so worked up about the impending kerchunk that when the CDE made a slight movement I actually slapped her hands away - she laughed, but I was mortified.

The infusion set was eventually put in and it was, of course, not as awful as I'd imagined. B, trooper that he is, got one too. And then we went out for margaritas, I got a little drunk, and I cried while telling B "You know what the saddest thing is? That this won't be a big deal. I'll do it because I have to, and I know I can handle it even if I don't want to. But in six months, a year, five years, that I did it won't be a big deal - my fear will seem silly."

Well, it's been nearly four years and I can honestly say that my fears were silly - the pump is not nearly as horrifying as I'd thought. BUT. It is still a big deal that I did it. I was legitimately terrified of the pump, and I forced myself to confront that. Going head to head with something that scares the pants off you will never be anything but a big deal.

*     *     *

Click here to check out all the other D-Blog Week posts on this topic!

Wednesday, May 15, 2013

D-Blog Week 2013 Day #3: Memories

Today's prompt:

Today we’re going to share our most memorable diabetes day. You can take this anywhere.... your or your loved one's diagnosis, a bad low, a bad high, a big success, any day that you’d like to share.

*     *     *

It was the first week of December 1993. I'd been recently diagnosed with Type 1 at the ripe old age of 15. And, unsurprisingly, I was taking the news like most teenagers would - I was pretty blase, because wasn't I invincible?

Upon hearing the initial diagnosis, I was mostly unruffled despite my mom bursting into tears. I had no idea what Type 1 was, knew no other diabetics of any type at all. I don't think I'd realized it was a forever thing.  I'm sure I'd thought it was like mono or a broken arm, both things I'd had and dealt with and - most important - moved on from no worse for the wear.

I didn't shed my first tears until I had to do my first injection - needles and I weren't friends then. (Not that we really are today, but I got over the crying years ago.) That was my first inkling that this might not be a small change.

We left Big Nan's office armed with a little training on injections and insulin, pages and pages of reading materials, and a very, VERY small amount of information on the next steps to take before we came back the next day. Among those next steps: a trip to the grocery store, and the instruction to avoid anything with sugar in the first three ingredients on the label.

We went to Gloversville's Hannaford and my mom and I began walking the aisles, trying to shop for our normal stuff. But each time we grabbed something, we weren't sure if it was "approved" - we had no earthly idea what we were doing, and I was overwhelmed. I walked away to gather myself, telling my mom I'd go grab stuff for sandwiches. But the bread wasn't "approved." And neither was the jelly. What the fuck kind of disease banned peanut butter and jelly sandwiches?! Nothing we'd grabbed was right, not even the simplest lunch items I'd been packing for years. How was I ever supposed to eat anything ever again? How was I supposed to actually live with this fucking thing?!

My mom found me there in the jelly aisle, holding a jar of Welch's Concord Grape, sobbing uncontrollably. That jar became the stand-in for everything I'd just lost in the world: the ability to eat without thinking, freedom from injections and carb-counting, the right to think of food as nourishment rather than the enemy, the blissful ignorance that health is not guaranteed, a lifetime free of chronic disease.

My actual diagnosis was, of course, a big day for me. But that jelly aisle is where I finally realized my life had just irrevocably changed. I think about that aisle every single time I grocery shop, every time I feel burned out on my disease, every time I feel incapable of coping with a shitty hand I'm dealt.

*     *     *

Click here to check out all the other D-Blog Week posts on this topic!

Tuesday, May 14, 2013

D-Blog Week 2013 Day #2: We, the Undersigned

Today's prompt:

Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) - get creative!! What are you trying to change and what have you experienced that makes you want this change?

*     *     *

We, the unfortunate many who consistently and endlessly access medical care, petition our insurance companies to simplify said access with written materials in readily understandable language for laymen and with plenty of well-trained human beings to staff your customer service departments.

Currently, reading one's terms of service or Explanation of Benefits requires an advanced degree in Insurancese. And, as most people don't have that advanced degree, errors - and often costly or dangerous ones - are made. For example, I've lived in New York state most of my life and, in New York state, things like syringes and test strips and pump supplies are covered as Durable Medical Equipment. However, I've only received this amazing benefit for four years because prior to that I'd never had an insurance company that helped me access that coverage - I did not know how to get it, and no one was helping me do so. As a result, I lost thousands of dollars in unnecessary copays over the 19 years I've had diabetes. And this is a small error. What about the people who don't realize they need to get precertification for complicated procedures or expensive drugs? Or what about getting your bloodwork taken at a lab that is no longer covered by your insurance?

To save patients AND insurance companies plenty of time and money, we demand written plan materials in language the average person can understand so they know what's covered and what's not. We demand customer service reps who are able to answer questions and explain things so they make sense, rather than just repeating some script in Insurancese. We demand that patients are recognized as paying customers, and, as such, are be treated as the valuable people they are.

Monday, May 13, 2013

D-Blog Week 2013 Day #1: Share and Don't Share

Today's prompt:

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?

*   *   *

It's a mixed bag, isn't it? The idea of someone on my team reading what my daily life is like with the D is, at first glance, kind of dreamy. "They'd know how much I think about it! How many times a day my mind goes to my meter, my pump, what my carb count is, if I have glucose tabs, that I need to make that appointment, order those supplies..." Because our effort is as chronic and endless as diabetes is, but sometimes it doesn't feel like that's noticed or appreciated by doctors. My A1c doesn't always reflect the amount of mental or emotional energy expended on just getting through the day with diabetes, you know?

Or maybe the dream is them seeing that I actually have a life - that I have a family I need to stay healthy for, friends to spend time with, a job to succeed at - things I do that are more important than my disease. That when I miss a week of logging or let too much time pass between appointments, the reason is that my life is NOT my disease. That all the time spent worrying and planning and thinking and counting and measuring and everything else is actually just time I'm investing in being able to do something besides Being Diabetic.

Or maybe the dream is for them to see the value of a support network like the DOC. That I felt isolated and terribly burned out after so many years of dealing with my disease alone - I had doctors who looked at my numbers and family and friends who loved me, but I had absolutely no one in my life who understood what burnout feels like or had anything to say about which pump I should buy or where I could find glucose tabs that don't taste like chalky ass. Today I jump on Twitter for five minutes when I need a question answered or want to say hi to friends who know what a middle of the night low is like, post here when I want to share an experience or really need to work through something. And having all those people at my fingertips, day or night, is just an indescribable relief. I can get through any shitty diabetes day because I know there's someone out there right this very minute who's dealing with the same uphill battle. I have comrades-at-arms, and it's incredibly powerful to know that.

Or maybe I don't want them reading my blog at all. After nearly twenty years of diabetes, I have been through a lot of doctors. For the first time, I feel happy (!) with my team. I have a doctor who seems to get that I'm more than a compilation of blood sugars and basal rates. I have a CDE who looks at my logs with me rather than for me - we make adjustments with both our input, and she seems to understand that she might be the professional but it's MY body and perhaps I know what that 7am BG bump means better than she does. I have an ophthalmologist I positively adore and want to adopt as my new favorite uncle. So if I'm happy with everyone, and I think we're working well together, why do they need more information than what they've already got?

So maybe that's it. I spent a long, long time wishing my doctor would just see this about me and that would fix everything. Or that the awful nutritionist I saw when I was a teenager should have shut the hell up about the kind of milk I drank. Or that Big Nan wouldn't have tainted so many years of my life with fear. Or that X or Y or Z. But I don't think reading my blog would have made Big Nan less awful, or informed that endo about how to gracefully deliver the news that I have another autoimmune condition. Rather, I think it all boils down to my doctor or CDE or whoever being a bad fit for me, someone who didn't bother to look beyond my numbers and see that there's a person sitting there. 

I'm lucky to have found a good team, one that fits who I am and helps me be a healthier person. Good doctors are hard to find - I'm going to hold on to mine with a death grip. Let them read whatever blogs make them happy, just as long as they keep doing the great job they're already doing....

Friday, May 10, 2013

D-Blog Week 2013: Bring. It. On.


I had SO much fun doing this last year, and I can't wait to participate again.

You should sign up, too! Just head on over to Bitter-Sweet Diabetes and register to join the bunches of DOC folks already gettin' their D-Blog Week on.


Monday, May 6, 2013

Where's diabetes?

"I am coming to huuuuug you!"

I love this picture because it captures one of L's best current things: the Frankenhug. If you ask her for a hug while any distance away, she will immediately raise her arms and then awkwardly toddle over with arms matter how far away she is when you first request it.

The second-best thing is the way my gear is just kind of there. If you Where's Waldo for a second, you'll see my pump is, as always, in a solid Full Frontal Tubing position. Can you also spot my Dexcom sensor lump?

Diabetes is life, life is diabetes - it's always there, even if you forget about it.

Thursday, May 2, 2013

It's hard out here for a pump

A few weeks ago, I noticed that my poor pump was looking a little beat up. Upon closer inspection, I realized "beat up" actually meant "cracked":

See in the lower left-hand corner?

I took note of it, and planned to call Minimed.

Well, time got away from me as it's wont to do, and yesterday I found myself checking to make sure the crack wasn't any bigger. It was (the above is yesterday's version!), AND it had found a friend:

A nice T-bone crack right off the lip of the battery cap

A crack in the face of the pump doesn't seem scary, but the battery cap?! I could see that causing some major issues the next time I had to change it, so I called Minimed immediately. Lovely, lovely customer service as always, and after answering some questions a new pump was on its way to me:

This is mostly a "yay Minimed! yay non-cracked pump!" blog post celebration, yes. But... 

During the call, I was informed that I needed to return the old, cracked pump to Minimed within 14 days of receiving the replacement, or I would be charged something like $4,000. Now, I am incredibly lucky I'm under warrranty and able to just get a new pump to replace my broken one. And I am INCREDIBLY, incredibly lucky that I have the health insurance that I do that enables me to have a pump in the first place. So it's a little humbling - and scary - to be reminded of the actual cost of all the diabetic supplies and equipment I have. I know for a fact that there is no way I could afford all of it if I didn't have great insurance, and I find it a little shameful that I don't thank my lucky stars every day that I do have that insurance and that I am able to have things like pumps and CGMs. And then I shift from feeling shameful I'm not more grateful to feeling a bit pissed off that I even have to think like this - no one should have to be grateful they have access to medical care and they're able to be healthy. In a better, more perfect world, we'd all just have what we needed - luck, or insurance, or geography would have nothing to do with it.