Thoughts: high a1c, new endo, babies, stuff, etc

Yesterday morning I went in to meet my new endocrinologist. In the last year, I had a lot of stuff going on - defending my Ph.D., moving, starting a new job as a non-student for the first time (add on top of all that the fact that I had no health insurance for about four months and you might imagine how my D care suffered). My last A1C last spring was 6.8 - I was pretty happy with that and aimed further for 6-6.5. And then life happened. And I feel a giant slew of responsibility on my shoulders now, because I just had my blood drawn yesterday morning and just now I learned that my A1C is 8.6. 8.6 is the highest ever A1C I have ever had in my whole 7 or so years of treatment. I had a 8.3 after my year abroad, where I lacked test strips as well as common sense (I was 21 so you know). Now however, I am going to be 27 in April. And one of the first questions my new endo asked me was : Are you planning a pregnancy? To which I responded : Not quite yet, but I hope to start having children in the next year or two. And he was so supportive and nice and smart and respectful., I told him I knew my A1c was higher that last time, but I thought it would be in the high sevens, certainty not the 8s!

Anyway, I can't help feeling that I let myself down, and that the good impression I thought I made on him yesterday is now marred by this number. I know it's just a number, I know I'm not defined by it. I also know that I have to be more honest with myself and make some changes. We discussed what changes I can make (adjusting my basals up until I finally lose thaty 5 pounds I gained over the holidays, prebolusing, exercising more regularly, making sure my fasting #s decrease, etc.). The thing is the bgs downloaded from my meter (more recent ones) weren't half bad - there were definitely way more 100-somethings then not. And I have like no lows. And overall, it was clear from my logs and our conversation that he thought I was doing pretty well (at least in the recent week) and that with a few tweaks we could really reign in the highs. He told me that my notes from my old endo talked about how good I was at micro-managing my self-care and making dosing adjustments, how my endo trusted me. My new endo said that he gives me the reigns (which is not something that he does for every patient). He told me to tell him immediately if I get pregnant (and I'm half-expecting a call saying something like - DON"T DON'T - Not with that A1C). But I also know the call probably won't come - because he knows that I know better. He already knows that I'm hard on myself. And that I've read too much, I know too much, all the negative statistics (outdated or not).

I told him a story of earlier this week when my bgl was 75 less than 2 hours after lunch and I had to drive somewhere. I ate 4 glucose tablets. And an hour later I was 230. I should've had 1 - I said - but I wasn't sure and I HAD TO drive. He said - that's the thing - life doesn't stop for diabetes - we can only do the best we can do - don't beat yourself up - I would call that over-treating if you were sitting at your desk - but you were driving and it's different. Don't be so hard on yourself, he said. I don't care what your A1C is - he said (not is the sense that it's not important, in the sense that he already understands that I am hard-working and motivated, and that I'm in a transition point in my life where adjustments need to be made).

The good news - I really like my new endo. Also, all my other labs were great - no complications as far as we know. Cholesterol, lipids, thyroid, urine analyses, etc etc were all great. So there's that. I can do this. Just because my A1C jumped almost two points this year does not mean that the world is coming to and end, and it certainly doesn't mean that I will stop trying. I will work harder, I will be more diligent. But I will still live my life (although I need to make adjustments to prioritize my D management more).

It was weird - my husband and I have talked about kids a lot recently. We may even discuss TTC as early as the summer. A lot of work remains ahead but I'm more than ready to put all my diligence for striving for this new chapter of our lives. I really like my endo's perspective on pregnancy - I didn't realize this before, but the pregnancy a1c isn't as accurate as a regular person's one because of the changes the hormones have on the hemoglobin molecules (weird huh?) We are on the same page that we would rather my a1c at 6 with now lows that 5 with 30s all around. He is so well-trained as both a DO and MD and has many pregnant type 1s. He also assured me about the great OB/Gyns he knows that routinely deal with T1 pregnancies - and that I don't even have to see him that often if I don't want to as long as I'm in touch and doing appts with the Ob/Gyns... Anyway, it's good to have a supportive doctor, at least I am now looking forward to hopefully making improvements and seeing him again in 6 months - not feeling scared that he will judge me or make me feel guilty - because he really is great!

Sigh. I am so excited for spring to come. It is after all a relief that all my other labs look good, and that I'm generally healthy despite the high bgls and a1c. I'm going on a cruise leaving from Italy and the end on June and I am so excited! I am excited to start hiking wiht my three dogs on a regular basis again once this cold goes away! I am excited that I have the support of the doc in my diabetes and life adventures!

<3 thanks all
-MM

Meets the eye

I did it! After about 23 months I went in for a dilated eye exam. By went in I mean went down two flights from my office. Really- I had no excuse for prolonging the inevitable other than being terrified. Yup (see previous post). I think after being traumatized by a terribly judgemental eye doctor two years ago I was really dreading this - that's the thing - I wish more docs understood that blame games and scare tactics make me want to run far away and never come back!

It was better this time. I was seen by a 4th year student and then also by the attending - essentially my eyes were double-checked. In fact, I believe that happened because of diabetes. I though I was all done but them more flashing lights (just to be sure). As he examined me he routinely quizzed the student on random shit like "what is the most likely primary location of developing NPDR?" At which point I was like "please stop saying NPDR! You're freaking me out!" He laughed - "don't worry"

The thing is I did worry - from the moment I sat in that chair and the student collected all my info. "Do you have any eye disease?" "Not yet" I replied in my best humorous voice. "Why are you so worried, don't worry" they kept saying (so worried in fact that my bp clocked in a systolic of over 140 with a pulse in the 90s - I assired them that I have a bp monitor at home and it's normally fine -all true). Here's the thing: I realized I feel like my poorish diabetes control especially recently (while not extremely terrible but definitely not great) would definitely warrant complications. I thought the time was now. I fully expected to be told that diabetes fucked up my eyes. Being that the blood vessels are soooo teeny tiny there we all know that that's where the first signs will show up typically. So after 8 years (of which about half I would consider subpar management) I fully expected to be handed a new diagnosis and join the complicated club. I went in prepared for the worst: telling myself that I would not be alone in this and that information is power.

Between the two of them, they found no eye issues related in any way to diabetes at all. I think everyone could sense my sense of relief in a profound way that day. Knowledge is power and I felt very empowered in knowing that at this particular moment my eyes are very healthy. And I'm grateful for that fact. The thing is I feel I dont deserve it and yea I know how fucked up that sounds. I know that ydmv and that people who are well-controlled experience complications and that sometimes people with worse control do not. Genetics, epigenetics,etc. In any case - I felt guilt for having healthy eyes with not great control. Based on my last reported a1c from last spring! (6.8) the docs congratulated me on good control and told me to keep up the good work. I could not bring myself to tell them that my current a1c is definitely higher and that during the appointment my bg shot up into the high 200s. He left me with "there are two things with eyes and diabetes. There's time and there's high blood sugar that contribute to disease." I thought it was interesting that he aknowledges that even with good control time can still influence things. I laughingly dropped a line about well controlled diabetes being the leading cause of nothing whilst knowing perfectly well in my head that perfectly controlled diabetes is impossible.

Ok- lets go back to the fact that my eyes are healthy. That the poor control I experience form time to time (while a consequence of my actions or inactions) is no reason to blame myself for being human and far from perfect. Between the 6.8 and now a lot has happened. There was my dissertation and phd defense in July, coupled with a move and starting a new job in the same month. There were months of     not having health insurance. There was the fuck it I'm out of grad school parties, and Christmas and travel. I am quick to blame myself. It's important to remember that I have a life that isn't all about diabetes management! I should be proud of my accomplishments, proud that I've managed to care enough to test often even if I'm running high a lot. Proud that I haven't experienced debilitating lows. Proud that I'm very motivated to get better control and at this particular moment things are better and I couldn't be happier about that!


Yep, there is much much more to diabetes than meets the eye. Here is my dilated eyeball. Please ignore the incoming  wrinkles that graduate school has induced - love you guys!!!
<3 MM ;)

2015

here is what I want to do this year (in no particular order):

-get my a1c to 6.5 or lower with stable (read: not too many lows) numbers
-reduce drinking (ethanol) [the two are related]
-promote career; not sure what this will mean exactly or if I'll get there this year but the idea is to break out from an academic post doc into industry (which pays a lot more and tends to have better benefits and to a degree more stability, at least in terms of funding for research)

You may notice that all three are related and in fact they are. One of my goals for the next 5 years is to reproduce (hopefully more than once). I am... (Dun dun dun) still 26. Not for too much longer.. And  getting to this point in my life where time seems like it's speeding up faster that I thought it could move (without drugs, in the real world). And I realize that I've been married for over 5 years and that in the last 3 years we became parents to three wonderful dogs and a number of cats (our own and strays alike). And that we are emotionally ready. Just not as much financially or logistically yet. Husband is still in grad school and I've barely escaped in one piece just a short 6 months ago (seems like 6 days ago). My blood sugar averages suck but I know that I can do a lot better - just haven't been doing it.. I'm meeting my new Endo at the end of next month. I should also schedule an eye exam (no excuse - it's literally in my building)... I'm scared. Scared of hearing the words "complications, not compliant, uncontrolled, etc" scared to say these words to my husband. Scared to think about where things might be in 20 years when (hopefully ) our kids are grown. Scared to think that shit can go so wrong even if I do everything I can to do it right. Scared of trying. But not trying is not an option. It's out of the question. There - rant over. Fears released. Onward.

Level of care, education

I have diabetes (type 1). On most days, I average 7-10 blood glucose checks per day. These moments may be annoying in that they interrupt whatever I'm doing, but they are so important because each one helps me make a small decision that will add up to my total health. For example: Today I wasn't sure about exactly how much insulin I should take for my lunch because it's the start of my cycle and the haywire hormones resulted in me eating a whole extra granola bar while driving, just to not drop low after a typical breakfast bolus. So I took too little insulin for lunch. And two and a half hours later I was 266. I corrected. I moved on. I will check again after I finish writing this post. (sounds pretty typical, right?)

Yesterday, I was talking to a friend of mine. She is from India studying for her bio Ph.D. in the US and doing research in neuroscience. Her father had diabetes (type 2). He died of a heart attack when he was 57 a few years back. I knew this before. This is what I did not know (before yesterday):

She said (synopsis):

My father and aunt were both overweight and had a hard time managing their type 2 diabetes. My dad had eye problems, renal problems, underwent several surgeries. All the complications were either caused by or exacerbated by his diabetes. I know that every time my aunt checked her blood sugar it was 300 or 350... 

Besides the emotions I felt listening to a type zero talk about her diabetic family members and how it affected her, I was mostly shocked by hearing that her aunt's numbers were "always over 300" (sidenote: both were insulin-using type 2 diabetics). So I had to ask: How often did they check their blood sugar? And she said: "Maybe about once a month."

Needless to say, my jaw dropped. I couldn't imagine not checking for that long and taking insulin (although there was a time in my life when I didn't check very often at all). It's not that these people did not care about their health. It's that they didn't understand all the details about having diabetes and how to treat it. They did not have access to the tools and education they needed.

This made me so sad. And shocked. And grateful for what I have: latest tools, education, access to information through my endo, etc. Most importantly, I am grateful for the 300 test strips per month my old plan covered, and even more grateful for the unlimited test strips covered by my current plan. That is so huge. This man did not have to die at 57. Hearing how his death affected my friend tugged at my heartstrings more than she will ever know. Because I have diabetes too - as well as a family.

I don't have much time to write, but I had to share this. In other news, all is well. I am trying really hard to keep a tight grip on my own D management, and although the efforts are accompanied by lots of failure, I am optimistic. My endo left the state and I will be meeting my new one in two months. I am determined to make a good impression with respect to my A1C. I would fail that goal for sure if I went in today. But I cannot look behind me, I am only now responsible for what lays ahead.

Much love,

-MM

Daily Disasters with a Dusting of Diabetes

1. Bruises... From injections. Most probably from reusing the same pen needle (I know I know), caused by not having health insurance for five months and trying to conserve aforementioned pen needles. Now, I have health insurance (see #2), but it's hard to break the habit of not changing the needle each time. This is of course a very very minor disaster (it's not like it's bathing suit season anymore) and I am making every effort to get in the habit of treating my skin right again (or as right as it can be treated whilst receiving like 6-8 daily injections (counting Levemir twice a day).

2. Health insurance.. This is the first time I am a "policy holder" (Dear Maria, welcome to adulthood). After receiving my cards, I promptly called my old pharmacist and had him play around with the billing (having worked as a Pharmacy Tech for years as an undergrad I know a thing or two about instructing how to bill Rxs to third parties). And a (almost) disaster struck when I realized that this plan was far more expensive in terms of copays for drugs that do not have a generic alternative even if they are on the formulary (Levemir, Humalog, Test Strips). AND that I would thus apparently have to pay $100 per each script each month (OR $250/90 days/each script) until I meet my maximum (of like $2.5 k), which sounded ridiculous to me considering I used to pay $20/script with free pen needles (provided they are billed on the same day following any insulin script). Thankfully, I quickly figured out that the university I work for has a special program for people with chronic illnesses (Diabetes, COPD, and two others I can't remember). All I have to do is participate in four conversation sessions over the phone with the staff at the University hospital (basically it sounds like they want to make sure I'm compliant and collect statistical data) and I get each 90-day RX for $125!! (much better). In fact, next month I get to chat with one of their Diabetes nurses (who is Type 1 herself) and we will likely be chatting about insulin pumps (see #5). Yay!

3. Speaking of disasters... I'm really not happy with my diabetes management. That is not to say that I'm not trying. I'm extremely frustrated with just the fact that it is the way it is while at the same time slightly blaming myself for not being able to do better in my current circumstances (see #4, #5). Basically, it's kind of like this (I realize it's on it's side and that's just about how it feels, especially because I'm trying):

I know I need to pre-bolus more (among other things). I know I need to aim lower. (ALSO what this graph does not show is the 52 last week.)

4. Work!... My first real job (after college and grad school). I'm now almost two months in and am finally starting to feel more comfortable with everything. But holy shit the stress that was brought on. FIRST, I now have a commute (Scully if you're there I feel your woes, IT'S THE [MOTHERFUCKING] TRAFFIC)! As a result, I get up at 5:15 to get out by 6 to make it there by 7 (sometimes 7:30/8, see also #TRAFFIC). As a result, I'm extra stressed. Stressed about starting out in a new environment is fine, but I also feel extra stressed because of diabetes. My boss knows I have T1D but I'm not sure he knows exactly what it means (I totally brought it up in the context of science, all like "science is so cool man, 100 yrs. ago I wouldn't be alive" etc., etc.) And my coworker knows now, and he also knows (briefly) about the fact that there's Glucagon in my purse. (sidenote: most of the time, working with scientists makes life with D just a bit easier). Nevertheless I find myself still self-conscious to inject or test in front of them or my office mate (don't judge). I want to educate, and I'm doing the best I can. Any day now I will "come out" to my office mate (I know there's no shame in D but I always felt like I wanted people to get to know me a little before telling them; in fact, I feel it can make the educational process more effective, if you happen to break some stupid stereotypes they may have about it beforehand [insert slew of stereotypes here]).

5. I'm heavily (seriously, in the near future) considering getting an insulin pump. I think I want would (will) get the T-Slim. I crossed out "want" because I don't think anyone really wants an insulin pump. But I am thrilled with the options of recent technology. What I am not thrilled with (like at all) is a device attached to me at all times. Sure, I know it's useful (like with the Dexcom that I sometimes wear). But at the same time.. I just feel like it sucks to have a device attached at all times. I know I can always go back to treated my T1D in the way that works best for me, and I do feel like I (slightly maybe) want to really try pump therapy to see what kind of a difference it makes in my life (with [sometimes more than] a dusting of diabetes).

In other news... #Allsgood

Peace and Love
-MM

The last 10 weeks...

In the last 10 weeks I:

1. Defended my Ph.D. in cell and molecular biology :)
2. Published 1 review article and pushed my primary paper towards final submission :)
3. Celebrated my 5-yr wedding anniversary :)
4. Moved (which also included putting up fencing for our 3 dogs) :)

I'm sad I didn't have time to write but life has been happening! (And diabetes is definitely on the back burner...) Not to say I'm rolling around in the 200s and 300s all day long, but the frequency and length spent above where I want to be seems to have grown as dramatically in the last several weeks as my life has been progressing.

Tomorrow I start my new job. My first real, non-student job. Where I will be expected to know like Ph.D.-level things and stuff (what?) I can honestly say that the thought of not being a student (for the first time in my life) and being "an expert" in something is triggering a little "impostor syndrome" - yes it's a real thing and apparently more common in women: http://en.wikipedia.org/wiki/Impostor_syndrome

Soooo. Yeahh... Have I mentioned that I'm 26? That I'm thinking ahead about having babies in the next few years (not now!)? And as I fight through the silly thoughts of being an intellectual impostor I am also struggling with the discrepancies between my current diabetes management and my future (baby-producing) goals. But I know that I CAN DO IT IT CAN BE DONE. I think with slowly putting in more dedication and consistency over the next several years I can get to a point where I believe that I can do it. As I settle in (into "adult" life? wtf) over the next few months, I am hoping to make a genuine effort to improve my management (and by extension other aspects of my life). I know blogging (and more so reading all your blogs) has been extremely helpful to me over the last 1.5 years and I hope to find time for plenty of both in the upcoming future <3

Yours,

(Dr.) Maria M

T1D Hacktivism Brief (NOT medical advice):

1. Definitely, most-definitely pre-bolus for breakfast.

2. Definitely, most definitely, pre-bolus for white bread.

3. Try out the expired stuff, unless cloudy (insulin) or generally useless (e.g. Dexcom: Failed Sensor/???/etc.)

4. If you are a woman, you must immediately download the PeriodTracker App and figure out how to “compensate” for like idk the last 10 days of your cycle (case in point: days 21-30 I literally have to bolus like 20-30% more for breakfast and lunch).

5. Keep an old and trusty meter around (in case you ever don’t have insurance [ I don't have insurance ;( ], those test strips will cost waaay less). Mine is the Accuchek Active (and I can find strips on Amazon for like 15 bucks/50 strips [score])

6. Get a dog. Preferably a large one (or three). Like this:

They will DEMAND to be exercised as well as love you unconditionally, therefore improving your mood, along with your BGs :D)