Invisible in the wild

It was a hot cruising day and the pool-loungers were out in full swing. The smell of tanning oils, sunblock, chlorine, and sea water was thick in the humid air. We navigated the deck, passing by the slew of semi-naked people, most of them sunbathing, eyes closed with headphones on, or perhaps reading, or chatting enthusiastically. And then I saw it. A woman, probably in her 30s, with what can only be described as the elusive “perfect” body – tan but not too tan, six-pack intact, classy bikini, great haircut, laying on her back, eyes closed, enjoying. The cannula on her stomach, with a tiny hot pink thing (sorry, I don’t pump, so I don’t know if different cannulas from different companies have different colors and what exactly the hot pink thing on the site was, but it stood out to me) connected to the tubing which was tethered out of sight on the side of her. I am pretty sure no-one else noticed. Perhaps (probably) some of them did, but I doubt they thought much of it. What went through my mind was – shit – it’s hot – I hope her insulin is OK. I wonder if her pump is in a special case or has an icepack nearby. I wonder how this vacation is going for her diabetes. And also – I am not alone! On this cruise-ship – here’s another from my tribe.

I wish I could’ve talked to her. Well, I know I could have but I didn’t even know if she spoke English. And also I didn’t want to make her feel uncomfortable in any way. I saw her again in the restaurant a couple of days later. Husband and two energetic kiddos. Eating a bowl of yogurt. “How the hell did she carb count that one?” I thought to myself (the pink, I assume strawberry, yogurt was just served in a giant bowl so go figure how much sugar is in that one). And then the realization that now that she was fully clothed I would never had known about her diabetes. And no one around does either. It is (mostly) invisible. 

Update!

Random list J

1.       I am back from Europe and it was pretty eventful. And full of freshly baked bread and hidden carbs and stubbornly high blood sugars. And alcohol. And hiking. And family time. And some stress nonetheless. On the way home our flight was delayed by 8 hours, causing us to miss a connection, and as a result spending 36 hours in various airports without even sleeping or brushing our teeth. The good news is we are getting financial compensation (happy dance!)

2.       The day before we left I noticed I had two very itchy bites – one on each of my legs – at least I assumed they were bites. Anyway, they itched very badly and I scratched them, and then within a day or two I had a secondary infection on my skin - a horrible itchy rash spreading with a vengeance - which is nothing that has happened to me ever before. At first I thought it might be poison ivy or something, but then quickly realized it was something else. So there I was – in Europe, high blood sugar, and a (really f’ing itchy) skin infection… In Greece I consulted with a pharmacist and we both agreed it was bacterial – so got a steroid/antibiotic cream. Which helped a bit (but I didn’t consider the double-whammy of rubbing that shit on my legs and then going out into the sun.) Can you say sunburn/ peeling/ super-irritated skin! And then the 36 hour airport adventure and all the Googling on skin conditions I did had me convinced that I might have anything from dermatitis to psoriasis to scabies. Yep, I am a hypochondriac.

3.       After coming home with my skin not looking any better, my BG in the 300s, and no sleep for almost two days, I may have had a slight mental breakdown. In fact, I cried about diabetes (something I have NEVER done before, but I guess needed to happen). I admitted (in a sobbing mess) to my husband that I was doing a shitty job controlling my diabetes, that my skin was probably still infected because I couldn’t get my BG down low enough for my immune system to help out, and that pretty much everything sucked and that I was a horrible person because of my shitty blood sugars. Yep. He responded so well. Hugs, and a “what can I do to help?” (side-note: I love him). Once I calmed down a bit, I asked for him to help hold me accountable. To help with carb counts. To ask me what my blood sugar is sometimes (not to like keep checks on me but just allowing him to be more involved, but not in a pedantic way if that makes any sense at all).

4.       After getting about 11 hours of sleep, re-hydrating, and getting the BG to come down a bit, I felt pretty silly about being a crying mess the day before. But something changed that day. I think when you come out and say to someone (besides yourself or the internet): “I am struggling and I need help”, you give yourself permission not to be perfect, and permission to love yourself when you are far from it. And even motivation to try harder. Anyway.

5.       The skin- about three days after getting back I went to one of those Minute Clinics and had my skin checked out. Of course by then, it was almost back to normal (the NP must’ve thought I was crazy). She said it wasn’t infected anymore and that I could switch from the Ab/Strd cream to OTC HCT 1%/. The rash is completely gone by now – apparently it was just some random infection that can happen whenever there is any break in the skin – cellulitis – and it was not serious and it happens to lots of people all the time. Of course, me being me, I spent a lot of time blaming my poor BG control for it. But maybe it was just a random rash and I shouldn’t have been so concerned.

6.       I went to the dentist last week! There is an exclamation point because: 1. I haven’t been in about 6 or 7 years :O and 2. This was the first appointment I scheduled for myself (my mom would schedule all of mine, even in my early 20s..)  And I was so happy that there were really no issues and that I got complimented on my oral hygiene. Also, I lied about my A1C, giving them the 6.8 (which it was about a year ago), instead of the last 8.6. I just didn’t want the f’ing lecture (dum dum dum complications gum disease uncontrolled blah blah blah) – can you blame me?

7.       I rescheduled my endo appointment to the end of October because I can’t face him right now nor can I face my A1C.

8.       I may have said this before but I feel very determined to get my A1C under 7 (like now). I know I can do it. It’s so weird – how time flies. B and I have started looking for jobs. There have been HR departments we are keeping in contact with and it seems like there are lots of exciting opportunities. Shit’s going down this year (or next), depending on when B finishes his Ph.D. and when/where we move. And then... Well – I mean – we are pushing 30 and probably going to want to start a family (what?) Re-reading some posts of Kerri and other ladies who have had pregnancies with T1D has been very motivational. Re-reading some of my old posts has brought laughter and a little bittersweet sadness. I’m not 17 anymore. Much closer to 30 now (how DID that happen!?)

Not much of a point to this post besides the update – we are working hard on careers as well as continuing with the training our dogs received while we were away. Celebrated 6 years of marriage last Sunday. And lots to do, lots to do, and hopefully a little fun to be had before the summer ends <3

On training future ophthalmologists

I am fortunate to have to opportunity to help train our ophthalmology graduate students at one of the top-two ophthalmology programs in the country! Very exciting!
In fact, training graduate students of all sorts is a typical job for postdocs like myself. In case you are not familiar, a postdoc is someone who just/recently received a Ph.D. and takes on a training opportunity (usually ~1-5 yrs. in a typically academic research environment) prior to pursuing a "real" job (such as a professorship or other). Also: postdoc = underpaid slave = TRUE

Anyway, as a diabetic I am especially interested in eye physiology/disease and especially on fostering connections/mutual understanding between doctors and patients as much as possible in order to improve the quality of care and help improve human health in general. Thus, last year, when I was offered a postdoctoral position in the college of optometry at a major state university, I did not hesitate to accept. But until recently, I never considered how working in an optometry clinic fundamentally connected me to diabetes/PWDs/people who know about diabetes. And specifically optometry students, who are already and will continue to be seeing PWD's for the better part of the 21st century. And I have a chance to make a difference in their training. On both a professional and a personal level.

Case in point: I shared my type 1 diabetes with my graduate student. Here's the biggest thing I realized as we discussed - the absolute lack of knowledge of how grueling the management can be. Here is a brief snapshot:

Him: Yeah, people who don't manage their diabetes - it's crazy - we've had people pass out from low BG - so we always have juice boxes on stock - and soooo many people don't even know what their HbA1C is! I am just happy to hear when my patient KNOWS what their A1C is because it shows they are managing their condition. The A1C gives so much more information than just the last number, you know?! Some of my patients tell me their last number and I sometimes wonder if they're lying. But if they know what an A1C even is, that means they really care so...  [he sounded so excited and knowledgeable... Yes, I know..]

Me:Yes, it's important to know your A1C. I also need to point out that the last number is not at all reflective of a person's care. Blood sugar swings are very common, especially in people who use insulin. Additionally, people can and do lie about their A1C. The thing is, sometimes when we see a doctor, we can feel very judged about our numbers, especially if we don't feel like the physician understands how much we care, and how difficult the management is.

(For instance, I once had a physician rattle off all the possible effects of having a slightly higher than "acceptable" last bg value/A1C. She did this in a very pedantic and accusatory way: "Oh, so you're an UNCONTROLLED DIABETIC??!!... Did you know that Diabetes is the leading cause of blindness??" Those were actually her exact words. I still remember her tone as she lectured me and handed me a handout of what my vision will probably look like since I'm such an uncontrolled diabetic... UGGHHH... [on the bright side, I learned a lot about how awesome the #doc is that day, as I tweeted about the appointment. I also confronted her; she apologized, and I can only hope I saved even a little aggravation and hurt feelings for her future diabetic patients.]

Him: Here's the thing. We HAVE TO tell you everything that can happen. We (the doctors) are paranoid. Did you know there was actually a diabetic woman who went blind and sued her eye doctor and won?! All because he didn't tell her the blindness would be permanent!!

Me: Wow, I did NOT know that.

The takeaway for me is that they have a long way to go in REALLY understanding - in particular - how difficult management is (sidenote: grad student has a t2 diabetic mother who is controlling with pills and diet currently, she was a nurse/professor of nursing!). The truth is there is a lack of empathy training. I don't know if it's all chronic diseases, or if it extends to oncology, etc. but that's the way it is.

Bottom line of their side is: They hear "diabetes", so they pull out a long checklist, and will rattle off all the necessary information not to get sued...

Sad but true. The good news is I am in position to make (an albeit) small difference - one at a time - and isn't that how it all starts? With anything?

On a completely different note - I am traveling to Europe this week - it's been calling my name for the last 5 years :) I will see you in July ["July - she will fly" - April, come she will by Simon and Garfunkel - lyrics below and if you're not familiar for the love of everything - YOUTUBE!]

Con mucho amor, como siempre
-MM

***
"April Come She Will"

April come she will
When streams are ripe and swelled with rain;
May, she will stay,
Resting in my arms again.

June, she'll change her tune,
In restless walks she'll prowl the night;
July, she will fly
And give no warning to her flight.

August, die she must,
The autumn winds blow chilly and cold;
September I'll remember
A love once new has now grown old.

Update

So I have been eating lower-carb, higher-fat now for about 3 weeks and I am amazed at the stability of bgs (e.g. no 300s or lows ever). I am still struggling sometimes to bolus for things that I used to not bolus for - like salad . Or eggs and coffee (with half+half). BUT I am also consistently learning that I need to bolus for those things (unless I'm about to exercise or something). I am learning more about the impact of other factors on my BGs. Like stress. Or presentations (see stress). I am finding it easier to identify patterns and trends when not quite so much insulin and carbs are involved. And that makes me happy.

I don't have to be perfect. Truthfully, my bgs are still not where want them to be. BUT they are better than before (see post from 2 weeks ago) and I am seriously not interested in burning out by trying to push myself towards unattainable bg perfection that I crash or that I just want to give up if it's not "perfect enough". To avoid this, I am taking things slowly and making very very small adjustments to things like insulin doses, habits, other variables, etc. slowly over time. And that's OK.

I am spending a lot more time in the kitchen. If I haven't made my oopsie bread for the work-week or I don't have any lettuce washed and ready to go - I better get in there or else! (the else being eating out and hidden carbs as I've learned recently). Like this past weekend - I went to Subway and got a chopped salad with tuna on top and a cup of coffee. And well - let's just say there's something carby in that tuna because there's no way that (esp. after taking a walk) that spiked my bg as much as it did (ps. I SUCK because I never looked up the carb count online on the Subway site - I am assuming that info is available? - I still haven't looked it up...)

Anyway - to give some more details, there are things that I do consider free(ish) foods still (albeit in moderation only): pickles, almonds, numerous crunchy veggies, protein/fat-only foods (again, in moderation). Coffee can be free but unfortunately not when I need it most (in the AM!) Then there are the 1/2-1 U bolus foods: big greek salads, meat + veggies (varies), anything consumed  in the morning (see coffee)... Then there are the 1-2 U/ meal bolus foods: any reasonable (e.g. half serving) amounts of rice, bread, potatoes, starchy things like that, etc. Here are some pics:

Still haven't suite figured out those cauliflower bagels (left pic); probably because I substituted a small amount of regular flour instead of the almond/coconut (but they were delicious!) May I just say how much I LOVE having the egg and cheese breakfast sandwich on oopsie bread recently: crack 2 eggs on med-high, add s+p (+whatever spices, I like a touch of cayenne), herbs (I like green onion), and plenty of shredded cheese, fold over, and cook on each side (on Med heat) until cheese is spilling out and almost crunchy; sandwich between oopsie bread (google the recipe, it's soooo easy and yummy!). On the right is a slightly higher-carb dinner option that has some rice and croutons (there's roast chicken on the plate too). 

You may wonder - am I craving real bagels? Real bread? Surprisingly not really. Sometimes I feel hungry for other stuff like berries and corn chips and bbq sauce. And I eat them, just not with a ton of other carbs on top. Makes sense to me as a biologist - reducing my fortified flour intake makes me crave folate/B-vitamin-rich foods (including green leafy vegetables, nuts, and fruit and veggies). I can't say that I am craving bread. I eat small amounts of rice/potato - just a small amount, and it's nice but not my favorite thing about my new meals.

I lost approximately 3 lbs. over the last 3 weeks. As an (albeit former) athlete (I played high school and college tennis, very competitively - pre-diabetes - but that's another story for another time ;) I consider that almost negligible because (back then) I have seen myself routinely drop 8 lbs.  over a 3-day weekend of competition. Since I don't want to lose more than another 5 lbs anyway, I will keep track of it to make sure I don't drop down too much. If I do, I will probably increase my carb intake a bit.

My skin! This has been the biggest surprise - it's very clear. Very clear for me, considering especially that I am on my period now and I used to ALWAYS break out a ton the week before. I know it's not summer-time sunshine or anything like that because I have been struggling with some degree of acne for the last 15 years or so (I'm 27 if you're keeping tabs :) so I'm pretty much 100% certain (can't say that I'm a scientist!) fairly certain that the improvement is related to the dietary changes.

Anyways.. Sorry I fell off the #dblogweek bandwagon half-way through. You know - LIFE! I loved participating as well as reading everyone's entries - although I still have a TON to get through - I always get excited that after #dblogweek there are sooo many new entries to read and "doc"ers to meet :D

Happy (extended) weekend! :D

#dblogweek ; The crazy stories (wild-card)

So I knew I was going to write this post waaay before it was selected as a Dblogweek topic (Thanks to Karen being awesome).

I need to preface this by saying that these crazy experiences all occurred at the start (first couple of years) into my adventures with type 1 diabetes. Back then - I just didn't know any better - today I do! All in all, they are all a result of lack of education (surprisingly in three days at the hospital noone told me about diabetes + alcohol and diabetes + exercise, nor did they tell me lows could be as serious as I now realize they can be..) Of course, it's probably my fault for not researching a ton into my new diagnosis, but let these be a reminder to health care professionals not to assume they newly-diagnosed (especially teenage and young adult) patients are know-it-alls.

3) I am in the country on the outskirts of Amsterdam.

Things are great. Except for the part where I am walking 10-15 km per day (that's right!) to go from either our countryside hotel to the bus stop of from there to Edam (where the good cheese is). It is literally the middle of nowhere (beautiful) and I am doing all this exercising, bolusing Humulin R and still on NPH back then with nothing to account for the increased exercise sugar-wise (meaning I did not carry any kind of fast-acting sugar or any food period! on these excursions). In the middle of nowhere. With Diabetes. Not realizing how awful things could've turned out. Gladly, I was rescued by the loaf of freshly-baked white bread we bought in Edam (with Salami and wine to complement all the pot, of course). I must have consumed half a loaf on one of those 7-km walks back from Edam to the hotel that one day. I never tested (because I severely lacked in test strips when I lived in Europe and also because I just trusted myself back then to do what needed to be done without checking often). I just knew that I had to eat! So I did. And I survived. Cause, really - it would've sucked to have just passed out there. In the middle of nowhere. Even the thought that that could have happened and the distress that would've caused to my poor husband still scares me.

2) This one is crazier, perhaps. I am in Costa Rica for a week. I *think I have enough test strips. But, alas, I don't (after an all-time low of 37 mg/dl I have used up a lot more than intended - again extra exercise was unaccounted for). With three or four days left in the trip, I am 100% out of test strips. I try to get some for my meter at the pharmacy, but they don't have that brand - they will "order it" for "later in the week". Won't work. They offer a whole new system that is ridiculously over-priced (like I can't afford it). So what does this girl do you ask? Well - this girl - forgoes testing for four days, continuing to enjoy her vacation, whilst swag-bolusing away. Unimaginable to me today. But I came home with a BG of 176 and no emergencies. Boo yah. (I don't recommend doing such things :)
Here's a pic of Costa:


1) This one takes the cake and it involves first heavy alcohol use since diagnosis. It was in fact my mother's wedding (I couldn't be happier because my parents' divorce was overdue and I was thrilled she found someone she was happy with again). But. It was a Russian wedding, which pretty much always means lots of Vodka. I remind you that I at that time was not aware of the BG-lowering effects of alcohol and the sky-rocketing of insulin sensitivity that occurs. So, after consuming what was probably some stupidamount of very expensive Vodka, I went to check my BG and was in the 200s. I promptly bolused Humulin R to cover it, not accounting for the drinking. And then the shit hit the fan. Within an hour or two I remember crying and that I had real trouble walking (like I would stand up and my legs would just not really hold me up at all). Here's the kicker: Everyone (myself included) thought I just got ridiculously drunk (which I'm sure was true). But we all know that wasn't the whole story. My boyfriend (husband today) and his cousin (we all lived together back then) took me home to "sleep it off". I remember getting into the vehicle. The next thing I remember is sitting up in my bed, leaning over into the provided bucket, and (well you get the point). And then I received a recollection of the events. Apparently, when I got home, I became incredibly belligerent with my boy and his cousin in law. I was told that I was hitting them! And screaming about how I hated them and to leave me alone. And then I was passed out (but breathing) on the bed for "some time". I came to and my boyfriend was so upset - he thought I meant all the nasty things I said to him about how "I didn't love him anymore" which again, I don't remember any of. When I woke up and threw up, I felt shitty and low, and I remember that I walked to the kitchen fridge and chugged some juice and went back to sleep pretty soon after that. As B helped me take off my clothes and put me to bed, he made eye contact with me and said "So - you still love me?" "Of course I do!" I said feeling guilty for getting so shitfaced and stupid, especially on this day. "Good, I'm glad you're feeling better. Man you should've seen yourself - the spitting image of Courtney Lovefor a bit there" he laughed. For some reason I remember that remark vividly. He was right. Looking in the mirror with my hair messed up and makeup smeared with puffy eyes and white button-down shirt wrinkled - I kind of did look like her. The thing is it took me several years to realize that all this craziness was probably a result of very severe low blood sugar, induced by over-doing it on the Vodka, and not "just being too drunk". Scary shit kind of. I talked to B about it too, after I figured it out. Definitely the craziest and scariest diabetes moment ever. I hope health care professionals and D-parents will take time to talk to their kids about alcohol use and Diabetes. I definitely learned the hard way...

Today, I know a lot more and make more responsible decisions. I know that people around me know I have diabetes, and they know what a low blood sugar can look like. I carry Glucagon, and snacks everywhere with me. I am careful about drinking. I know Glucagon won't work if drunk. I am so much more careful. I haven't lost little rebel - she will always be there - but I gained so much wisdom it would be stupid not to use it <3

How about you?!

#dblogweek : keeping it to myself

With the exception of this blog and my husband, my diabetes is almost imperceptible to anyone around me. I don't talk about it a lot, I don't test or inject "in public". When I go into a lab meeting or presentation with a bg of 300-something, my boss doesn't know about it. When I am low low low and my hands start to shake I quietly go to my office and stuff my face with candy or juice. I sit there quietly, as patient as one can be, using all of my willpower not to scream "help - I feel like I'm dying" to a coworker. All in the name of keeping D generally well-hidden.

It isn't shame. Nor is it a lack of a desire to educate. It is simple: I just want people to see ME first.

More recently, I shared my (postsecret) fears of complications and feara of pregnancy with diabetes with my husband. I feel better that I did. But I also feel like I lost a part of the happy-go-lucky demeanor I tend to project as a result. So while sharing is healthy, for me, keeping things hidden also works jn my favor by not allowing me to prioritize diabetes (management, fears, etc) over living my life.

#dblogweek : I can, we can

In some ways I think diabetes  kind of lit a fire under my ass. It has made me face my mortality far younger than most probably think about things like death or old age, but its not necessarily a bad thing because now I know that:

The time is now. Time to travel the world (no matter how poor), time to grow the cutest furrriest family, time to pursue my relationships as well as my career with all the passion I have to give every day. Time to make time for what's really important. Now.

No time for: negativity, laziness, sulking, or questioning.

I can because I have since my diagnosis - gotten married, lived in Europe and traveled to Central American numerous times, adopted three dogs we probably cant afford but love to death, gotten into grad school and got a Ph.D., became an auntie, amateur gardener, avid hiker, and a docophile (am I the first ever to use this word? ;) And I am super excited about what's next! Without diabetes it feels like it wouldn't be the full me anymore - its been about 7-8 years with D but there is no denying it's a huge part of who I am - and I can all the things with it as part of me...

I can, we can - thank you doc for all your support, for reading, for putting yourselves out there. We all have an important story to tell <3