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)

#Dblog week: What brings me up

My family, my friends. My ability to share with them. My ability to share with you.

This wasn't true even two years ago for me. I was lonely in my diabetes life. I allowed myself to feel all those things all by myself and only by myself: the guilt, the fear, the carelessness, the depression, the anxiety, the feeling of wanting to be "normal" and knowing that diabetes won't let me... These are hard feelings to deal with.

I went to therapy - initially not because of diabetes.. In fact, as I progressed through the sessions, I came to realize - what a big role diabetes has played. In everything. In my attitude towards myself and others, in my risk-taking habits, in my sense of who I am. Diagnosed at 18.5 yrs. old, in the midst of what I will now only describe as a "very tough time in my [very young] life", it was a slap in the face and seemed nearly impossible to accept to say the least (I digress, that's a whole another story).

Today, my friend and I met over lunch (and may have smoked some pot ;). We talked about my upcoming dissertation and about my impending new job, we talked about research, and people we knew, we talked about our bosses, and summer plans. Somehow, diabetes came up. Here's where I'm lucky - being a scientist, most of my friends are familiar with diabetes - most basic things anyway. Side story: this particular friend of mine actually has a history of T2D in her family. Her father very sadly passed away in his 50s due to a heart attack, after many years of obesity and T2D.. (My friend herself has lost ~70 lbs. in the last 1.5 yrs due to this fact mainly). I proceeded to talk (ramble?) about the basal-bolus approach (imagine rambles herewith, including an in-depth discourse about the analog vs. human insulins, doses, lows, highs, etc.), concluding with the statement "so that's the current treatment approach ... sounds simple in theory..." I could tell that for someone who did not have diabetes, she understood very well. She sympathized in my struggle and opened up more about her dad..

I joined the DOC about 1.5 yrs. ago.  Feeling less alone, I felt like I could open up to others. I have not been disappointed. Whether it was my friends, my husband, or my family, I have been finding nothing but understanding and support when it comes to my diabetes life. The thing is I never would have known it was possible, that it was out there to that extent, if it wasn't for all your stories, for all your openness.

Today, I share. With you. Or IRL. And I am still amazed at how much it helps.

I love you all.

<3 -MM

#Dblog week: What brings me down

I haven't written in a month and a half, as life has been crazy, mostly in a good way. At the start of April I traveled to San Diego for a few days for a conference and caught up with my mom, which was fun. While there I received unexpected email for a job interview, a refreshing change of events after months of looking. This was for a 2-yr postdoctoral research position at a state university nearby, and I am both shocked and thrilled to report that I landed the job on the spot. This event set off a chain reaction of quickly finishing experiments and throwing together my dissertation. Currently, I am scheduled to defend my Ph.D. in less than two months, and start the new job at the end of July.

Of course, these are not the things that bring me down. These are all great (life-changing?) events, and I am both excited and terrified to tackle the heavy work-load for the next 1.5 months at the end of which will (hopefully, almost most-definitely) be my Ph.D., and a new job awaiting (one that will pay almost twice what I'm used to). What brings me down is the negativity that Diabetes sometimes casts over these exciting events. When I am at the Zoo and feel like total shit because the traveling and greasy food spiked my BG into the 300s. When I see an average on my BG meter that I don't want to admit is true. When I feel like summer-time BBQs and beer drinking should make me feel guilty. When I think about my future with my husband (which I would like to include children, many perhaps) I am excited, but at the same time Diabetes management ("poor" management in particular) casts a fearful shadow over what should only be happy thoughts. It makes me sad that I can't seem to have 100% enjoyment, because Diabetes is almost always (somewhere) on my mind when I think about my future.

At the same time, I have to remind myself that I am more that just a girl with Type 1 Diabetes. I am a daughter, a sister, a wife, a puppy momma, a researcher, a friend. I'm Maria. I am not just a disease, and I will not let this aspect of who I am take over. On the other hand, I cannot ignore it or it will take over. These days I find myself looking for this balance more than ever, and I am sure (especially after reading some other Dblogs from the DOC this week) that I am not alone in this. Thank you all for being there.

<3 MM

Update: the last Endo appointment, life.

After being tortured in my intravenous blood draw a few weeks back, I anxiously anticipated my lab results over the course of a few days (and was delighted to see an email from my practitioner a few days later). However, I was disappointed to see that although my thyroid, lipid panel, and cmp came back normal (and my glucose level was "high" at 103 mg/dL :), there was no mention anywhere of my A1C (although I read the order and there was supposed to be an A1C done.

In the end, they did one (finger-stick A1C) at the office last week. My Endo always does this thing where he comes in a starts chatting and lets you talk, and it's like you have to guess (or ask) what your A1C is. So I was chatting about how much insulin I was injecting and how I thought I had figured out a better I:C ratio for breakfast during and how that changed based on what week I was in my cycle. And about how I decided to stick with a consistent amount of Levemir daily (split) throughout the month. "Well, your efforts are paying off."  "Oh, really? what was my A1C?" (there, cracked and asked). "Ummm, six point.. six point... Ummm.." [searches through computer files].  But I had heard enough.

I am in the sixes, for the first time in years I'm in the sixes again. "What? I don't care even what it is" I blurted out. "I don't care if it's statistically insignificant from seven. I haven't been in the sixes in years."

I should have known when he asked to bring in the two medical students (he doesn't do it if it's not good news). They were 1st and 4th year D.O. students (worlds apart, basically), and we chatted about me finishing up my Ph.D. (this year!) and the long job search (in progress and still ahead). They tried to follow all my logic and chattering about my care, and stared at me as the Endo checked my feet, lungs, my injection sites. "D you have a cold? There is a little rumble. Not pneumonia or anything, nothing serious... Hmm, your Potassium is a little low, make sure you're getting lots of fruits and vegetables. Not worried/concerned by anything else... Your cholesterol levels are extremely good, just pristine..." [wow, thanks]

There, a clean bill of heath. And a sigh of relief.

My A1C was 6.8. When I first started treating, I had plenty of A1Cs in the sixes. But, I never tested, while taking good amount of insulin and just eating whatever I wanted, and I probably had a lot of lows. In fact, it's kind of surprising I didn't have any serious emergencies or hospitalizations occur during that time. However, after I realized that insulin could kill you (something I think my doctors avoided telling me at all costs in fear I wouldn't treat) my A1Cs jumped to the 8s and 7s for several years, despite obsessive/compulsive testing. In the end, I must (at least partially) credit to my ability to wear a CGM at least some of the time, today, largely due to generous donations from DOCcers (who switched to the G4 and had left-over 7+ sensors to spare).

It's spring time in Southern Ohio. In two days, I take off for San Diego, and I am super excited. I will be attending a cancer conference, as well as meeting up with my mom (whom I haven't seen in six months). I'm a little nervous about the earthquakes as I haven't been out west before (hopefully that's just paranoia). I am already planning how I will manage to shove all my diabetes shit into my carry-on. For this trip, I plan to wear really cute clothes and possibly a bathing suit, and although Dexcom old-faithful is on the back of my arm today, we shall part ways for my time in California.

I feel refreshed. I really needed to see a concrete improvement in my D-management, because I have been putting in a lot of effort, and sometimes lots of times, based on my averages and logs, I'm very disappointed. I really needed to see/hear from my doctor that something is getting done right. And now, although I won't lie to you all by saying I didn't give myself a few "sort of fuck-it" days after the appointment, the lowered result makes me want more improvements and makes me actually believe for a second that I might be able to will definitely actually try to do the pregnancy thing down the line. Things in my life are changing rapidly, and heath care is no different - next month I turn 26, and will no longer be on my parents' nice heath insurance. Will cross that bridge when I come to it.

For the time being, I want to live and enjoy the season. And I will keep walking the dragon, as I must.

Peace out.