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Thursday, December 12, 2013

The 1-Year Blogaversary Post

Wow, I am on time! ~A year ago today, this blog was born :) Ironically, I have an endo appointment this afternoon, weird...

I started blogging to connect with others, to share my story. A little over a year ago in the beginning of December 2012 I was at a tumor immunology conference in Miami. Needless to say, sometimes at conferences (especially as a graduate student traveling by herself to a city she's never been to) my time largely consisted of exploring the city, and also wasting time by surfing the web on my phone during boring events, or lengthy train rides. It was then that I began to read Kerri Sparling's blog sixuntilme.com and I couldn't stop myself. On the way back to the airport on the subway I literally drained my whole battery reading story after story of Kerri and other people living with or loving someone with T1D. At that time (as has been in all my ~6 years since Dx) I was extremely private about the fact that I had T1D. I would go as far as to day that on some level I was ashamed of it and to a degree felt out of place in the world (and thought others would see me differently and in a negative light if they knew). I guess a big part of it was being completely "normal" (doing things others did) for so many years (I was diagnosed at age 18) made me feel very strange and unlike myself as a diabetic. Over the last year, I took advantage of free counseling services through my university (all schools should have that!) where I discussed in  depth many things, one of which was my self-image as a person with diabetes. I must say that I have come a long way in self-acceptance and confidence, which has in turn allowed me to share my true (type 1 diabetic :) self with other people. Friends were shocked. People I had known for years had no idea.. And while sometimes I would have to field some uneducated questions concerning what I should be or shuold not be eating or whatever, I still felt much more at ease and was largely unrattled by all of my "coming out" moments. The first post I wrote was titled: "T1D: Coming Out". In the last year, I have shared my chronic condition with at least 8 people (which is much much more than in any of the last 6 years). The thing is that I don't think it was so much the growth in age (18-25), nor was it 12 months of counseling that got me there. It was in fact reading the stories of others in the DOC, connecting with them (online and IRL), and realizing that I was not alone that did it for me. So for that DOC I sincerely thank all of you!

Moreover, I have learned that the DOC can be extremely (selflessly) helpful in times of need. I will share just as few examples of the kindness of strangers in the Twitterverse that will never be "just strangers". I can't think of a better word than friends, but it is different. I haven't been around here long enough, nor do I have a lot of funding to travel around to meet PWDs IRL, but nevertheless the compassion that was shown to me in the last year was nothing short of awesome and amazing. Here are a few recaps:

- Last February I was at an eye doctor's appointment, where in reponse to my honest answer about the last A1C (7.6), the "doctor" shouted at me: "WOW, so you are an UNCONTROLLED DIABETIC! Do you even know that Diabetes is the leading cause of blindness???!!!" (No lie, that was EXACTLY what she said). Then, she proceeded to tear me apart for my high morning BGs. At first I tried to explain to her that I understood all this (and more), that I was doing the best I can. I took out my Dexcom (she did not know what a CMGS was!!!) trying to explain to her how hard I was working to manage my condition. All I got was something like: "Well, you need to be doing much better or you will get complications." OK. Then I kind of snapped. And may have raised my voice. And then I tweeted all about it: (the replies are not shown here but there were many, and they were all expressed with such comradery and support that I almost cried happy tears ;)



- A few months later, my Dexcom receiver ended up in the toilet (you know)... I tweeted again, getting advice from people about putting it in rice,etc. That worked, and was great advice, saving the function of a very expensive device. What was really amazing though was the woman who was willing to send me at no charge her son's old Dexcom. I was very touched my her willingness to help a stranger and her compassion and grace when she DMed me that "I don't believe in reselling D supplies." (I offered to pay what I could and she wouldn't hear of it) Thankfully, my Dex is fine, and I didn't have to accept the gift, but this was another moment that solidified for me what a tight-knit and LOVING community this is...

- Fast forward a bit and my motherfucking! ins. co. decided to change things up and rebill (read: Back-bill) my sensors, turning out to cost me almost twice as much as expected. As a graduate student on my measly TA salary, I cannot afford sensors for my Dexcom system anymore (and now owe like $500 for shit I've already used). I can barely afford test strips and insulin. I tweet out in hopes of finding someone who switched to a G4 and might have some 7+ sensors they don't need. What do you know? Sensors along with a backup Dexcom trans. + receiv. coming in the mail this week. I am so excited to use them and extremely grateful to the gentleman who provided all these at no cost.

So, THANK YOU DOC. I love you all and would do the same for you... When I get all rich after my Ph.D. (ahahaha) I will definitely donate D supplies and fund charities and fly out to meet more and more of you :) Maybe I'll even switch from cancer reasearch to T1D, who knows?!

Con much amor, como siempre <3

~MM


Wednesday, November 20, 2013

On "burning out"

If you scroll back a few posts to see my old-school logging tactics you will find that I test like a maniac most of the time and try so so hard (most of the time) to stay under 200, even after food intake. Furthermore, I try really hard to remain stably in the low 100s overnight and not let breakfast kick my ass too much... In addition, I track my cycle religiously and think I have figured out how to adjust reasonably to the week 4 insulin resistance. 

Having said this, I also have a life. It is filled with stress and love and unforseen circumstances and many other things. It is more important to me than my diabetes management but also I know that (on some level[s]) my life will suck proportionately with how much my D care sucks. And sometimes regardless of all my efforts, I really feel that my D care sucks. 

When I see consistent 200s almost all day it makes me want to scream. Not only that, but sometimes it makes me just want to stop trying. Because sometimes it seems that no matter how hard I try and how diligent I am I will still fail. 


Among many, I have 2 great flaws: I am impatient as all hell and also I am inconsistent. I am inconsistent in my procrastination, in my diligence, in many things. Combine that with impatience (and a little too much self-critisism) and you have one serious case of all over the place (especially when it comes to D management). 

My endo appointment is in 3 weeks. I have not seen him since February. I feel like a failure because I know my A1C isn't where it "should" be. It is where it is and it is definitely my fault. At least that's how I feel about it right now...

Monday, November 11, 2013

we're ONE but we're not the same...

first off all due credit goes to Johnny Cash for the title of this post..

Also, here is a relevant quote by Hermann Hesse: "as human beings, we can understand one another... but one man can interpret himself to himself only..."

What can I say? - Diabetes is just like that... type 1, type 2, you name it. it wreaks havoc.. some ~5.5 years ago I started treating my type 1 diabetes and some short time after that I started a pharmacy job where the pharmacist himself had type 2. At fist when I met him, he said - "welcome to the club". I thought it was a stupid sentiment at first and didn't want to be recognized for having diabetes. Later I realized that it was OK and that we had a lot in common. At the time, I had excellent A1Cs and honestly thought that he was nuts for not doing the same. It took me months to realize that fear that comes with the lows of diabetes and the lack of control. Today, almost 6 years later, I understand what he meant when he complained about 300s followed by 50s. Back then (if only for a short time of a year or two after starting treatment) I thought Diabetes was fucking cake. How wrong I was. And at the same time, the T2 pharmacist really rode the extremes (which happens)... But while sometimes we may suck at understanding one another, let us try to do that, and more (much more) importantly - understand ourselves (or do the best we can at least)....

gracias y con mucho amor como simepre <3

-Maria

Wednesday, October 23, 2013

Catching Up

It's been a long time and I'm happy to report that I have not fallen off the face of the Earth (literally, yet)... Here is a bit of everything (diabetes and non):

1) Last week I was in Boston, MA for a family wedding and had the opportunity to meet two IRL type 1s (my 4th and 5th total T1Ds IRL). One of the two was Dr. Shara of http://diabeticdoc.blogspot.com/ who is as lovely in person as her writings convey. This was no coincident and was planned well in advance and I am really glad to have been able to go. There is something about seeing/hearing for yourself (outside of formal support groups or doctor's offices/hospitals or internet pages) the real people who live with such a unique and giant aspect of what you have to live with - type 1 diabetes. And that they are successful and funny and happy and not phased by it at all. Because this disease is difficult and it's easy to let it completely drown you, but knowing that meeting others who have been doing it for decades and are well-spirited, ambitious, and continue to work at it everyday after a long time is really inspiring.

2) My husband and I drove for 15 hours in 1 day (twice last week, with stops) with 3 dogs in the back of my hatchback. That was crazy but we made it. Blood sugar cooperated better than last year's trip. It wasn't even close to what I wanted and the trip made my BG average shoot way above what it has been the last few months, but I still had a great trip. It is a lot easier to use Novolog to correct quickly and effectively than Humulin R, I have to say that...

3) FAT! Can we talk about fat? Seriously. I knew that eating hi-fat meals would raise BG hours later due to gluconeogenesis by liver but I never realized how bad it could be. Something about the travel and family-time foods, followed by the cold front coming in after getting back to Ohio has prompted me to eat large like enormous amounts of cheese, hungarian salamis, and what I can only describe as Russian-style cured lard (with bread), caviar, and pretty much any other 80%+ fatty delicious things that go hand in hand with cold weather and red wine... (At one point I hit 429, slept through a lot of it, woke up still in the 300s after like enormous amounts of insulin... It was BAD. and silly. and unavoidable somehow.) PS. I'm totally OK though :)

4) On the work/school front - I submitted a breast cancer postdoc grant to the ACS last week and the next deadline is for an NIH grant on Dec. 8th. I should also start writing my dissertation (any time would be good). I'm trying desperately to get a semester off from teaching freshman bio labs in the spring so I can actually work - they like to keep us grad students busy... Finally, this upcoming Saturday, I will MC a student-run cell biology conference in West Virginia and I am super nervous but excited for all the planning to end... Event planning is stressful and I'm never doing it again! I think I may break out that last expired Dexcom sensor later today or tomorrow and hope it serves me well through the stresses...

On that note, I really hope that my next entry isn't a month and a half away... I miss this place <3

Wednesday, September 11, 2013

Synopsis

The week that school starts up again (for me this means ~20 teaching hours on top of research and seminars in my graduate program) calls for a big and tough adjustment, diabetes-wise and otherwise. It has been especially challenging considering that I crashed my car on Monday morning (the day I was supposed to start teaching). In fact, I may have saved a curious and playful (with cars unfortunately) Border Collie's life by the accelerating and swerving around a dirt-road curve on my way to work, causing me to spin out and crash into a barbed wire fence and wooden posts... Yup. Thankfully both I and the dog are OK but the same could not be said about my car. Thanks to support from friends and my mom's kind comments about good karma for possibly saving a dog's life I'm pretty over it and can't wait to get back into the car that's being repaired. In the end, it was only a busted radiator, but having the cheapest (liability only) insurance left us to fund that replacement, causing more financial stress on top on carpooling stress on top of start-of-school stress... Whew.

Diabetes-wise, the increased cortisol levels and sedentary condition are causing major insulin resistance that are causing me to rethink my basals. Additionally, I don't drink on weekdays and most weekends during the school year, whereas summertime in grad school pretty much means beer and BBQs on a semi-regular basis, which obviously lower BGs on its own, although I don't think that has that much to do with it.. On the bright side, Integrated Diabetes (@Integ_Diabetes) sent me 4 free Dexcom 7+ sensors, as they received a donation. Although they all expire within a week, I think it'll be just fine, this sensor I installed has been very very accurate, and I plan to set a high alarm of either 180 or 200 as soon as I get this shit straightened out:




Honestly having Dexcom back for a little bit right now has made my week (well that and not killing a dog with my car).. I'm pretty annoyed with the high pattern, and have increased my Levemir from 10 to 12 total Units (split) in the last 16 hours. Not too concerned about it, unless one of my insulins went bad, given the recent heat-wave. I've been holding off switching out the Novolog, but I think I may have to, as I've corrected a few times this morning, and it just doesn't seem to be working well. But I seem to also be going up between meals, and that caused me to change my basals first... I've almost always had a consistent I:C if I stay at the same weight (which I have been!), although I recently figured out that in the mornings with coffee, I'm more 1:10 or 1:12 than the usual 1:15... I'm trying to be patient here and not change too many variables, but I'm seriously starting to suspect my Novolog... But I will get it figured out. Today. Maybe tomorrow.

Friday, August 30, 2013

Getting it (together)

About 5.5ish years into life with T1D, I believe I finally am starting to "get it". I mean, I "got it" before, but I feel like recently I've gotten better at seeing the big picture. Having finally read (devoured in 48 hours) even just 1 book about diabetes (Think Like a Pancreas), I was amazed to find information that I did not know about. Information that verified to me, that no, I was not an "abnormal T1D", whose blood sugar homeostasis requirements fluctuate wildly during the course of the month, and that I 'm not imagining things when I eat a protein-filled no-carb breakfast that makes me spike a few hours later (thanks Liver!), and that I can weigh many foods and multiply by this thing called a "carb factor". Furthermore, gaining information within the last 8 months of  being involved with the DOC has been extremely eye-opening, not only in the sense of emotional support, but also in learning about the treatment plans of others... Information is powerful...

At first, when I started treating, I was nonchalant, thinking that treatment was easy. When I realized what a fine line of fine it is, then I was scared. Now I must say I'm neither. Recently, my fear of lows (which don't often occur because I'm often running higher) have been replaced by some quiet confidence of treating myself the best way possible and in order to feel well, aiming closer to normal than ever. Actually, aiming for the higher side of normal.

I do have to mention that it wasn't just the gathering of information that restored my faith in myself to be able aim lower. I was so scared of the lows. So scared. Then one day a few months back, I had the opportunity to take LSD (has been shown to be effective for PTSD, cluster headaches, and recent studies confirm psychedelics do not cause mental heath problems, and may in fact be beneficial to mental health; Having said this, I am not advising anyone do anything I describe here - psychedelic drugs are very powerful and must be used with respect and common-sense caution. And having said that, the LD50 is extremely low, just look at the informative chart below (all credit to Wiki).




Such opportunities do not come by often, and I was prepared to use the experience to think about anything that may be on my mind (if you've done any psychedelic, you know it's not like you have much of a choice as to what goes through your mind)... I was running high BGs for "tripping safely" reasons (150-200 all night). And then I started to feel like total shit. The acid seemed to exacerbate my ability to perceive high symptoms, causing me to drink and pee even more excessively and developing a complete disgust for the state of my body. Closed-eyed visuals showed only my blood vessels, clogged by excessive sugar, slowly, slowly getting more clogged. (At the same time, I was thanking God for the existence of insulin, although I didn't dare take any at that particular time due to my state of mind and practically non-existent concept of time.) WHY IS IT LIKE THIS - I wondered - DAY AFTER DAY -higher that I should be - letting myself drown in a sticky puddle of sugary blood - that was precisely how I felt deep inside, like I was crying for help and unable to get out.. AND ALL THE WHILE, THE TOOLS ARE RIGHT THERE - ALL I HAVE TO DO IS TRUST MYSELF THAT I'M CAPABLE OF USING THEM WELL AND NOT FUCKING UP TOO MUCH... What am I scared of?

Then it occurred to me that I should put myself in a low state of mind while being high. Knowing that my BG was high, and without the fear of passing out from a low, I allowed myself to explore my fears of being low. WHAT AM I SO AFRAID OF? Is it the discomfort (hell) of feeling the symptoms? Although those are frightening, I allowed myself to imagine vividly what it's like to be low. I counted each and every symptom, imagining it, and proceeded to consider the worst-case scenarios, of passing out, dying, etc. In the end, I felt that I had confronted my fears head-on, in a way that I was never able to do before. It was a powerful experience and I am grateful to have had the opportunity, primarily because I have seen the changes in my self-care already. Not over-treating lows, solidly and consistently correcting mid-100s, adjusting basals and I:C ratios for different times of the day and month, and logging more days than not.

Dare I say that for the first time in a long time, I am proud of my self-care when it comes to Diabetes.




Tuesday, August 6, 2013

This week in diabetes and graduate school:



1. Stubbornly High BGs this week due to 1. stress; 2. high progesterone. By stubbornly high, I mean consistent! 200s while taking unit after unit (every hour) of Novolog.

2. To elaborate on the stress part, I have post-doctoral grants to apply for. They are due this Fall and will pretty much may largely determine whether I continue as a graduate student making a measly 22K per year for 1 final year OR if I can actually get that (oh-so-elusive) Ph.D. and make 50K + (ish?) next year - I'll take whatever I can get though, regardless... Stress, emotions, me being me, lead to high BGs.

2. (A) On top of that I had to take a pregnancy test last week. (It was negative). But I was stressed for a bit there on top of all the grants. [because I am not ready for a child at this moment]. All's well that ends well and I am waiting for insulin resistance to pass and feel better about BGs at least for the next couple of weeks. Next month, I think I will try to change basal rates - I don't pump, so I guess that would be basal doses - during different weeks of the month. Got to love being a woman. Well, I do, but Diabetes doesn't always hardly ever play nice with hormones (in general, like seriously).

2. (B) School starts again soon (like I don't want to think about how soon). Although I don't have to take classes, I do have to teach, on top of doing my research and aforementioned grants... Stress aside, need to incorporate exercise and relaxation, Diabetes, I am coming for you! I'll do the best I can with what I've got.

* On a very bright note, I will be joining the TuDiabetes community soon! I can't even tell you how often I am on those forums, reading it up! Also, I am excited for the emotional support I always gain what I  meet others living with T1D (online or IRL). I hope to drop by DSMA tonight.

With Love, MM

Wednesday, July 24, 2013

Diabetes vs. Car Crashes (aka Once Upon a Time)

Once upon a time (in the Fall of 2008), a young (20-yr. old) woman (OK, Me) who was treating her T1D diligently (although with minimal testing, aka a little nonchalantly)  was moving with her boyfriend in the Boston area. On the third or fourth trip, going back for more furniture, the couple got a little lost in the new neighborhood, and while looking for the right turn, in combination with awkward ramps and blinding sunlight (not to mention the hunger), hit a metal ramp head on in their little Honda going no more than 35 MPH...

The Driver's (male) airbag goes off, the passenger (ME, MM!) is left stunned. The hood of the car is smoking and leaking fluids, what's worse it the Driver's head, which is leaking blood. The passenger calls 911.

What may be more distressing than a (Thank God, [seriously]) more superficial than at first thought wound to the Driver's head was the fact that I (the Passenger) pre-dosed (oh-so-diligently) 2U of Humulin R in anticipation of a some sort of fast-food cheeseburger on the way to pick up the furniture...

I remember pleading (in shock) with the Ambulance guy to "give me glucose tablets" (they only had gel, which was super-gross). They lead me (calmly) onto the back of the ambulance to test my BG. Once he got out the thing (meter), he was like " I'm not sure how to use it [what??!!] ". At that point, I snapped out of my shocked state and remembered that I (in fact) had a BG meter in my bag. My blood glucose level was 110. (Insert shock and feeling like the Ambulance guy thinks you were kidding about the Diabetes) LOL.

Fast forward 1 hr. and I'm having Coke (non-diet, unknown amount) in the ER because I "feel like it". I alternate between bitching about Diabetes (aka confessing my Dx) to my [back-then future] mother-in-law (whom I called on the ambulance ride to MGH)... and also this is my first time BITCHING about DIABETES to anyone ever... Fast forward 4 hours, as we're finishing moving (while my then-boyfriend, now husband, is still at MGH). I'm exhasuted as I sneak out for a cig [Parliament] , and I feel shaky (still haven't had dinner). I go upstairs and (discreetly) test my BG (it's 40-something). I drink some juice and throw away the rest, I help clean up, move furniture into car, deliver it to E. Boston, pick up boyfriend from hospital, thank God I'm still alive.

Such as life, funny to have remembered this so vividly almost 5 years after...

Accountability in T1D Management

Honestly, when I write down what I eat and how much insulin I take and when, and what my blood glucose is at all times, it's a lot easier to be happy with myself regardless of the actual numbers (I think they call that logging, but I like to call it being accountable). If I'm having highs, I correct, make note of it, and also list some possible explanations. I feel more confident making small changes to my treatment plan when I see all the data in front of me on paper, in fact I become more comfortable with a lower BG range. I am my own little science experiment. When I'm having a bad time, careful logging tends to bring me out of it, as I tend to be extremely more honest with myself on paper about the carbs I eat (as opposed to handfuls of blueberries unaccounted for, guilty ;). I hate being high, I am sick of it. Not that I'm always high. But a lot of the time I'm higher than I should be. And while I can avoid looking at my meter averages or tell myself that I don't have to correct the 180 because I "might" exercise later, it all becomes so much more difficult to ignore when you have all these numbers in front of you six or seven times a day... Accountability... Furthermore, the logs provide invaluable information over the course of long-term events, like finding out I ALWAYS seem to need extra insulin on Monday mornings, that Tuesday and Sunday mornings are the most carb-friendly, that my insulin resistance increases after ovulation (due to progesterone increase I think)... It's time to break out the log again I think.

Friday, July 12, 2013

In Progress...

Today is my 4-year wedding anniversary. I was 21 when I got married, following a 3-week engagement, and preceding a 10-month stay in Madrid, Spain. While I must say that at the time of our big announcement, a shock and awe reaction arose (amid perhaps some doubt about our young age and long-term intentions), to us it was more like "well, it's going to happen anyway, and what a way to honeymoon for almost a year" :) I'm happy to say that looking back, I would not change a thing <3

The picture below depicts us just after saying "I do", walking away to "All You Need is Love" (by The Beatles).


The title of this post,"In Progress" is because that is just the way things are - all of our lives in many if not every way. As I think about how my husband and I grow together, I can't help but also think about my Diabetes, and how we grow together as well. It's not always unicorns and rainbows, but in the end, a combination of compassion, dedication, and hard work, and most importantly, LOVE will get you where you need to be (meaning you're kind of there already) - that is while ever-changing, and always being "In Progress". 

P.S. I Love You
-MM

Wednesday, July 10, 2013

This Morning's Blood Glucose BullSh*t

When I woke up at 3 am and tested my BG, my meter said "176". I took 1/2 U of Novolog and went back to bed. Given that 1/2 U "should" lower me by 50 points (although it varies a bit depending on time of day, not even considering activity levels), I was not surprised to see the "131" at 6:30 am, in fact I was rather pleased. I dosed 4 U of Levemir and went on to take a shower, feed and take out the dogs, prepare lunches, etc...

Upon opening the refrigerator, I felt a strange chill. Not surprising - the fridge is a cold place. OK. I feel strange. Am I anxious? I can't be low, I just tested 30 mins ago and I was 130, I thought looking at the clock. There is NO WAY I'm low. Why do I feel like I'm having heart palpitations. And why am I sweating, I so much?? (A second ago I felt cold). Another minute and two fingers on my (carotid? :x) artery, and I was like - OK clearly your body is trying to tell you something. I tested and the "60" came back, glaring. FUCK.

What came next was quite surprising (to me). I measured out the appropriate amount of juice, treated. 5 minutes passed and I was "64" (I DID NOT DRINK ANY MORE JUICE!), waited 10 mins and I was "92". OK. 30 minutes later I was about "140". I'm proud of myself for remaining calm and not ridiculously over-treating. It gives me confidence and hope that I can do that in the future more consistently.

Sadly, it seems that natural Glucagon reeaaally kicked in later, kind of spoiling everything, and raising me into the 200s without any food. (At least I assume that I'm in rebound mode now).

So it's been an interesting day so far. I'm really still confused about how I could've gone down 70 points in 30 minutes (from 130 to 60) without any Novolog or exercise. My best guess is that something was messed up with that first test, although I have no idea what it could've been... I'm certain nothing is wrong with the meter because the #s correlate to how I feel (although guilty of losing control solution). Also, ovulation is around here, so it could be that. I've never heard of any kind of Levemir mishaps in term of absorption - it has fatty acid chain on it, which binds to a protein called albumin, so as the albumin "falls off", it is slowly used in the bloodstream. I've heard with Lantus that you can get immediate absorption is the injection is not SC, because of the pH solubility, so with Lantus a butchered injection may cause a sudden drop but not with Levemir (please please correct me if I'm wrong)... The reason I'm even entertaining this is because I would expect such a drop if the Levemir did somehow act "all at once"...


(and yes, I'm certain I took 4 U Levemir and NOT Novolog lol)...

Wednesday, June 26, 2013

What's up (DOC) - a hormonal discussion

Well, after the last post of doom, I have been rather proactive and managed to drop my 7-day average from 199 to 172 (in 4? days). :)

As part of this being proactive I finally ordered Novolog cartridges from the RX (one I had for about 4 months on file) to be used with the Novo Jr. pen (which has been in my closet for just as long), which actually dispenses half-units. Done are the days of "waiting it out another 30 minutes to see if the IOB is enough or if I need another whole unit", or "drawing out insulin with a syringe to guesstimate what may be anywhere between 0.2-0.7 U with some complimentary air" (not sure which one was worse)...

So far I actually like the Novolog (I was on Humalog before)- it seems  to have less of a tail and really hits you hard at +1 hour, which is great for me because I really struggle with pre-bolusing by 10-15 minutes and often have high pp #s.

Of course, just as I thought I was getting my BG shit together, my hormones decided to flip a shit (just a couple of days before I get my period), leading to ridiculous insulin resistance, and thus fucking up my nice average (BGNOW - 357!). I'm pretty sure I go from 1:15-20 to like 1:8 for the 2 days before I get my period, and then as soon as it starts, it's like BAM: LOW LOW LOW (try 1:25 for 12 hours, and then back to normalcy?)! I apologize if this is TMI, but I wonder how other women handle this? For me, Dexcom has helped me notice this consistently, and I think I'm just going to low carb and slightly increase insulin until the resistance passes. Also, I'm pretty sure that for me, something screwy (BG-wise) occurs during ovulation, but it's not as obvious as this... I wonder how men with diabetes are affected by their hormones (probably less predictably?)

Now I'm finally seeing a decline in my CGM and completely refuse to beat myself up for this horrible HIGH (maybe if I state it it will become more true) lol

Friday, June 21, 2013

The Struggle

Currently my 7-day blood glucose average is 199 and my 14-day blood glucose average is 194.

It's not that I'm not trying - in  fact I KNOW I am because in the last 30 days I have tested my blood sugar level 460 times. 460 TIMES. My 30-day average? (you guessed it!) 199.

It's not that I'm not trying - it's that I'm terrified of lows. But in moments when I allow myself to think about that scary word ("complications") my struggle with my inability to maintain steady numbers in the low 100's (instead of steady numbers in the high 100s) stings a lot more than the ever-powerful fear of the low that will  may leave me incapacitated or worse...

I know that I (almost always) have strongly felt the lows (pretty much as soon as I hit 80 I feel like I'm ready to pass out), so realistically, knowing that information (along with the fact that I test so much and am anal about triple checking for safe [read: slightly and sometimes not-so-slightly high] night-time levels) I should feel empowered and confident in trying to aim as close to normal at all times as (super)-humanly possible... nevertheless - all I feel is a dread when I'm 90 that it will drop at the slightest thought of any physical or mental effort and leave me feeling like total shit. sigh.

Nevertheless, I am committed to (any kind of) improvement. I will start by patting myself on the back for like zero lows this month (lowest was 82 I believe) and for firmly staying out of the high 200s and above. At least my high (199) average represents something that is not 30-500 in range, but likely something that's typically between 170-220... also, almost of my tests are post-prandial so I'd like to think that fasting levels aren't as bad as it seems, but the truth is I'm probably in denial and it is in fact as bad as it seems, because even though numbers may be "just numbers" I think they can speak volumes... especially given the sample size of 460...

What does not help the issue is that I tend to be a kind of all-or-nothing person. I set goals that are difficult to reach and I go for them, but in fact if things don't seem to be going my way 100% I tend to feel discouraged and unaccomplished. If I set a goal of a 30-day average of 120, I'm sure I may even come close to that (armed with Dexcom and extra strips of course), but I'd probably feel worn out the next month and rebound to 250...

I don't know how to work day by day and see a slow shift in my average and feel accomplished. I do hope that I can learn to do that, because it seems that it may be the only way to fight this battle. I need to feel somewhat normal throughout the course of the day and extreme highs and lows prevent that greatly, and I know that hour-by-hour efforts (even if more time-consuming) will reflect positively on my feelings in the moment and in the future.... We'll see what happens, I'll keep trying, I'll try harder, Try not to let fear get in my way so much, although it's easier said than done...


Thursday, May 16, 2013

Catching up...

During my 8-day vacation in Mexico, I struggled with Type 1 Diabetes. My BGs were (largely) running in the 200s.  I had 2 or 3 300+s. ... I had a GREAT vacation. [I had no lows.] I feel well-rested and yet still hung-over, and I've already jumped into work head-first, organizing a conference, starting to work on my dissertation, my gardening, and my research...

My Diabetes accomplishment came today, when I decided to use a old note-card to start logging in order to improve my numbers while retaining a very low record of lows. So far, I've logged 1 in the 200s, and 6 in the 100s. So that's an improvement - and that's all that matters.


Thursday, May 2, 2013

All you need is love

It is my wish that everyone learn to believe in themselves, trust themselves, and remember that it doesn't matter what anyone else thinks of you - it's what you think of yourself that will make or break you.

Also, it is my wish for everyone to feel very very much (doesn't matter for whom/ what/ why/ how) LOVE

Con mucho amor, como siempre
-Maria





Friday, April 19, 2013

A Brief Reflection on the Last 5 Years

On April 18, 2008, I was hospitalized with (pretty intense) ketoacidosis, and an A1C of "over 18". That day I had my first insulin injection. I remember my mom telling me that she could literally see the color returning to my face a few hours after that...

On April 19, 2008, I stabbed myself in the leg with a 26-Gauge (hospital) syringe and I remember that it hurt like a motherfucker. Finding "an inch to pinch" on my 95-lb frame was a stretch and the log-like syringes did not help. But, nevertheless, I continued to administer my shots and didn't make any faces about it. My feelings towards insulin therapy changed dramatically and forever when I realized it would take away the horrible symptoms and make me feel like a normal person once again...

Later that afternoon I found out that I still wouldn't be released from the hospital, and I found myself in tears and bawling for help, as my cell phone was dead (no charger), and I couldn't get out of bed to make a phone call because of all the tubes attached to me. The feeling on extreme loneliness and abandonment (and perhaps a little grief) took over completely. A nice nurse let me use her cell-phone (a simple and kind gesture that saved the day). I talked to my mom and she came back and spent the evening (a brought a phone charger - thank God). I was so ready to get out of there...

On April 20th, 2008, I was released (not before a bunch of blood tests and EKGs and multiple promises on my part of following through with treatment). I filled my scripts, I bought a frozen dinner at Whole Foods, along with licorice and almonds, and got on the train to go home.

It being 4/20 and all, I got high (not letting Diabetes get in the way on anything, especially smoking pot ;).
Then it was time for dinner, and a butchered injection that left a weird lump on my belly for a few hours (bubbles, anyone?)

Fast-forwarding to today, I will just list some things that happened in the last 5 years of my life, living with type 1 diabetes:


1. 2008 - I achieve A1Cs of 6.2-6.9 for the whole year :) (Lows included and complimentary)
2. 2009 - I graduate from college with a B.S. in Biochemistry and get married 2 months later.
3. 2009 - A few weeks after getting married, we get on an airplane, and spend a year living in Spain.
4. 2010 - I get into and start grad school in the U.S. (Cell and Molecular Biology Ph.D. program). [note: my A1C hits a high of 8.3 since start of treatment).
5. 2011 - I publish my first paper.
6. 2012 - I adopt 2 puppies and start thinking about crazy concepts, like smoking less pot, exercising more and having children (thanks puppies).
7. I start being more open about Diabetes, by finding the DOC, starting this blog, and coming out about my condition to numerous friends and acquaintances IRL.
8. 2013 - I finally bring down my A1C to 7.1 after 2 years between 7.7-8.3 (with few lows and not too many huge swings).
9. 2013 - I defend my research proposal, and complete comprehensive exams for my Ph.D.
10. 2013 -  I realize that having diabetes is a huge part of who I am, and I can only do my best to be as positive, diligent, and not self-reprimanding with failure. I also infer that I can apply diabetes-related strategies (especially all those mental tricks like a killer sense of humor [sometimes blacker than my coffee]) to the rest of my life and (hopefully) be better off.

Con mucho amor <3 Como siempre

~MM


Monday, April 1, 2013

HIGH - An April Fool's Monday

HIGH... In my seventh month of using Dexcom (at least 50% of the time), this is a definite (true positive) first:


Awesome (NOT!). Although I am a little in "Awe" about the whole thing...

I took my morning Levemir promptly upon waking up, and although I was in the 190s before breakfast, I definitely factored that into my correction (with Humalog).. Breakfast was 35g carbs + coffee. Two more units of insulin & 2 hrs. later and I was somewhere around 270 mg/dL - go figure. (Normally 1 U will bring me down ~70-80 points in the morning).. More corrections and a light (~35g carb) lunch, and a bolus which was increased by about 20%, and Dexcom is currently showing (wait for it): 324->. FML

Oh well, I must be about to get my period (or something). Diabetes - you make no sense sometimes (a lot of times?). Perhaps you are just aware that it's April Fool's Day, and this is all just a joke on me???

Sunday, March 17, 2013

Just another one

so - first off, I am posting only 4 days after (successfully) finishing [written] comprehensive exams for my Ph.D. (in Cell and Molecular Biology doing Cancer research, waiting to transition to T1D research soon), and only "2 days!!!" since my last post. BUT... In case you haven't figured this out already - this blog is (kind of like) therapy for me... and can I just take the moment to(re)establish myself as #queenofparentheses and perhaps #queenofquotationmarks ??


"Another (random) list of 10":

1. I am sooo happy to have "passed" my written comps. (oral comps coming up) ... May I just say: the immune system is complicated!! 

2. I can't figure out if my recent high BGs [cgmnow: 336->, yelp) are a result of stress (due to several factors) or ovulation (seems early according to my "PeriodTracker" App) or whatever.  

3. I had some MillerLite with my lunch today and I don't feel bad about it (yay) [read: not alcoholic, all chores done, all exams away for now, time to celebrate {Spanish style}]!

4. Twitter #doc has made me stronger.

5. Sometimes I don't know if I can trust my #dexcom (it's been almost 48 hrs. with this sensor and I just don't know - every touch and it seems to freak out)...

6. There was a time when my A1C was 3 times more than it is today...

7. One of these days (1.5-2.5 yrs.) they're going to give me an f'ing Ph.D...

8. One of these days (x - 20 yrs.), we'll know EXACTLY what causes Type 1 Diabetes (IMO).

9. One of these days (y - 70 yrs), we'll have a "cure" (at least a preventative cure). (IMO)

10. Having T1D has made me stronger (emotionally), wiser (mentally), and healthier (physically).

PS. I see an arrow down on my #dexcom and I will get out of the 300s, the 200s, and basal 15-20% more tonight. One day at a time...

Friday, March 15, 2013

T1D: My Ongoing Science Experiment

As PWDs know all too well, there is a large amount of thought and calculation that must go into everything, every minute of every day: food, activity, stress, etc. My endo calls this "an ongoing science experiment", and I tend to agree. Having worked in a laboratory for the larger part of the last decade, I am all too familiar with science experiments:

1. They often go wrong.

2. You often don't get what you expected.

3. You must continue to repeat the experiment, and can only "trust your data" if you have seen consistent results at least 3 times under identical conditions.

4. When going from the test tube into an experimental animal model, do not expect anything to go right, because physiology is so darn complicated (read: I was advised to come up with backup experiments for my dissertation, as any work with mice is "most likely to yield inconsistent results and/or fail completely").

*Nevertheless, I love science, and am grateful for the insulin and devices it provides to keep me alive. I believe that over the next 20 years, we will know so much more, and be able to help so many people who struggle with numerous diseases. (A part of me cringes when thinking of BIG PHARMA, but at the same time, I [and many others I'm sure] do it for the people, to try to bring happiness to those who struggle with whatever health problem - diabetes, cancer...)

**Now: back to Diabetes:

After my endo appointment last July I realized that I'm actually testing 15-20 times per day on some days, so for the sake of my fingertips, I took the CGM leap - and I'm glad I did. Bottom line: my A1C went from 7.8 to 7.1 (during what is probably one of the most stressful times in my life: being a Ph.D. student). I'm working on improving that while maintaining my awesome record of about 1-2 "real" lows [i.e. under 70 mg/dl] per month (not too bad IMO)... It's great to see when Dexcom catches an impending low around 85, and I'm able to treat calmly (read: 1 glucose tab, not a bottle of juice) before I even get symptoms (depending on my IOB of course)...

The CGM made what my endo calls my "ongoing science experiment" a lot easier. Even when I'm not wearing it, having found new patterns I didn't realize existed and seeing the consistency, especially in terms of monthly hormonal fluctuations, giving me more confidence when making treatment decisions. The CGM is just a tool. But in my five years of treating T1D, it's the best tool I've found yet... And I can't wait to see where we will be 10 years from now.





Thursday, March 7, 2013

10 Reasons I Love my Endo

1. He used to be an OB/GYN, delivering babies, but found it "too boring" (lol).

2. He high-fived me at my last appointment in celebration of my improvement to an A1C of 7.1% (more importantly, he did not make me feel like total shit last time, when it was 7.8% - instead, he spent 45 minutes listening to me [unlike my ophthalmologist, but that's another story in itself.])

3. It takes 3 months to get an appointment - he must be good...

4. He does real Diabetes research!!! (read: he cares)

5. He seems so honestly empathetic (sometimes I wonder if he has Type 1 Diabetes).

6. He always returns my calls and files paperwork quickly.

7. He is soft-spoken, yet direct (I may sound like I have a crush on him now, but in fact I am astounded by how great he is as a physician and a human being).

8. He doesn't make me scared. (i.e. He reassures me that many complications statistics are from a time when  D was treated very differently).

9. He believes that his patients should make their own decisions.

10. He has 6 pregnant PWDs (currently) and he makes me so optimistic about that whole baby thing (which won't be happening for at least 2 more years ;))

Sunday, February 24, 2013

Patience, grasshopper

Patience - I have none. Just ask my husband (I'm working on it).

I think the photo below kind of sums things up for the evening:


I know that if I had stopped at 4 glucose tabs like you're supposed to then first time I hit the line, this wouldn't be happening now. I find it hard to wait for the sugar to kick in for 15 minutes, and I find it hard to hold off an extra bolus when I'm at 300...

My husband suggested setting a time for 15 minutes, and not allowing a second treatment until it expires (provided the situation's not too critical of course). This seems impossible to me. If I see that I'm still dropping 5 minutes after, all bets are off. When am I going to become more brave again, I wonder?

I've been having a lot more lows trying to push things to an average of 120 (instead of 150-160), but it's really hard sometimes, and on nights like this I can't help but feel like I kind of suck at this Diabetes thing.

Oh well, try again tomorrow.

Friday, February 15, 2013

A little about me :)

Well - you already know I have Type 1 Diabetes (since 2006).

As my profile describes it, I am currently a Ph.D. student studying Cell Biology in Ohio. I am doing research in ovarian cancer for my project. Specifically, I study an immune system protein that promotes inflammation and may lead to angiogenesis (formation of blood vessels in the tumor). I can't wait to get started with Type 1 Diabetes research for my post-doc in a couple of years (provided they grant me my degree and all).

Here is some of the rest of me.

*********************************************************************************

I was born in Russia. I grew up in Boston. I have lived in Spain. I do in fact consider myself to be a "citizen of the world".

On April 16th of 2013, I will be 25 years old. On April 18th of 2013, it will have been 5 years since I checked myself into MGH and had my first insulin shot.

I have smoked a lot of pot (still smoke, but much less than during undergrad).

I consider myself to be (somewhat of) a rebel.

When I was 22, I quit smoking (cigarettes) cold turkey (successfully).

I believe in love & freedom more than anything.

I (kind of/sometimes) hate talking about politics, but consider myself a Libertarian.

I have 2 wonderful puppies, who make my days better no matter what else happened. Also make me more busy, and provide more stuff to clean :)

I hope to have children  (my first child) in about 2.5 - 3 years. (yes, I know it's hard to plan, but I'm trying). Because I don't have time for and I can't afford any now, and also because my A1C isn't "where it should be" for getting pregnant.

I was in denial about my diabetes for 1.5 years after diagnosis and didn't treat. My first shot of insulin occurred when the DKA was very severe and my A1C was "over 18". I am lucky to be alive and healthy. And to have the supplies necessary to deal with T1D and lead a "normal?" life.

Today, I was in a meeting and a colleague was almost in tears and said she couldn't talk about it, because she would start crying. I didn't know what else to do (to make her feel better), but blurt out: "Hey, wanna know something personal and awful about my life? [she seemed eager to hear it]. I have Type 1 Diabetes, and sometimes I have to inject myself {with insulin} 7 or 8 times a day..." This spurted conversation about someone's niece who has type 1 and about insulin pumps (and distracted the almost crying lady completely, catching her off guard: go figure). Overall, it made me happy because (even a year ago) in the past, I was embarrassed about my diabetes and now I feel like I am starting to own it, starting to own myself.... [Mostly thanks to seeing T1s on TV (Nat Strand winning on the Amazing race), discovering sixuntilme.com (Kerri Morrone Sparling), and of course the #doc...

"life is like a sine graph" (something my mom always said). I believe it, live it, happy to be "down", because I know "up" is coming.

I have been considering getting a tattoo of a little black dragon on my right shoulder (never wanted a tattoo, then had a dream about a tattoo of a dragon on my right shoulder, after which the idea never left my head) - and soon after this blog was born... Maybe one day, after I get it all figured out, I might add a red leash around his neck ;)


Wednesday, February 13, 2013

Lows & Fears of WalkingTheDragon


So I may have mentioned once or twice on here that I’m “terrified of lows”. And I’m sure no one likes the: sweaty, confused, shaky, shaky, shaky, cold, hot, sweaty, crying…

I hadn’t cried in a long time until yesterday night. Not boasting – just saying – because once upon a time (8 or 9 years ago, when I was a teenage girl) I cried a lot (back then I also didn’t have diabetes, so I’m not sure what there was to cry about J) …

Some of you may know that last week (see: “frustrated”), I switched from Humulin R and N to Levemir and Humalog. Overall, it’s going fine. I’m trying to work out the basals, which is kind of working (i.e. I woke up at 6:40 this morning, and was at a BG level of 146 mg/dl with no corrections overnight, which would never happen on N J). On the other hand, fast-acting insulins scare me a little because of how fast BG can drop an hour or two after use, so I really have to get better at dosing with 100% accuracy and (more importantly?) waiting to eat after bolusing to improve post-prandial #s (which have sucked ass for the last few days)…

And then there is that one word: exercise. I suck at it, and can be only be defined as “inconsistent” when it comes to it (and some other things). I am 5’4” tall (1.63 m) and 115 lbs (52 kg) (on a good day), and also: I’m out of shape (read: can’t run 10 minutes without being out of breath). But, nevertheless – capable of running… SO – yesterday, when I got home and was feeling stressed about: comprehensive exams for my Ph.D. at the end of the month, never having enough time to clean the house anymore, diabetes, my beautiful puppies being more lonely during the semester.. I decided to (wait for it: exercise!). Not really. More like run around for 20-30 minutes with my dogs (read: lunges, sprints, laughter, throwing objects)… But it was fun, and (as I found out 2 hours later) totally counts as exercise (as do cleaning and sex).



I was around 140 before dinner (cgm #, because I am slightly lacking in test strips for a few days). Not giving much thought to the puppy play, I proceeded to dose 3 U of Humalog immediately before a dinner of: couscous (~44 g carb), chicken (negligible), and broccoli (tends to be negligible for me, as many vegetables are). Noticing about 30-45 minutes after, that I wasn’t peaking (at all, according to Dexcom), and considering the puppy play, I ate a small apple (a fibrous wonder of ~9 grabs of carbs). Also, I had some beer (about 2 lite beers, ~6.5 g carbs, and yes, I know OH lowers BG J).

Given my ratio of 1U:15 g carb, I thought I kind of nailed it. Nevertheless, 1.5 hrs after all this, I felt “OFF”. (I hate and love that feeling, because it’s a warning, but it’s terrifying). My brain felt “jello-like”? According to the CGM, I was @ 127 and steady. According to my Accu Chek I was 88. OK. I had a little juice, thinking “no big deal, just a bit of juice will do it.” (Don’t overtreat in the 80s, even post-prandially, don’t overtreat in the 80s…) BUT, about 10 minutes later, my Dexcom started yelling that I was 66 and falling, and all of the sudden I started feeling: sweaty, confused, shaky, shaky, shaky, cold, hot, sweaty. Oh, and also: my heart was beating out of my chest - HARD. At this point, I had more juice, and then (all of the sudden!) I found myself to be a crying mess, asking my husband to “bring me more juice in case I needed to drink more.” And I started crying more and more….

“Are you OK?”, he asked. “Yes, I’ll be fine, it’s just a low, it will pass”, I said. And then…


Then – I broke down and I told him about that time in Costa Rica 4 years ago, when I pre-dosed 3 U of R for dinner when I was 37 (I tested after I dosed, because I was rebellious and stupid, and determined not to let diabetes completely and totally rule my life). I told him how I chugged the sodapop that night at the hotel, bottle after bottle). And I told him how I was too proud to say anything, and how I had to be in control of myself, because I would never let anyone help me…

And then, saying all this through my tears, I remembered all of the sudden how BRAVE (young?) I used to be. It’s as if my stupidity back then inversely correlated with a sense of any fear. EVER. [Also I felt more in control of myself today, because I had plenty of juice as well as Glucagon. I have been carrying Glucagon with me only the last 1 year out of the last 6 years of being a Type 1 Diabetic]. I felt (slightly) better. Then I tested, and I was only 84 (after all that juice) and I drank more juice, still not feeling 100% (I’m also pretty sure that my meter of the last 4 years needs to be retired, because that felt like a 55-60 BG). Also I knew that I completely over-treated a low that was in the 60s at best.

I don’t know how you do it, #doc. When I read (once upon a time) Kerri Morrone Sparlings’s (@sixuntilme) post that she wrote at a BG=55, I wondered “wtf? If I was 55 right now, I would be destroying the contents of my fridge”. But, that is BRAVE: to trust your body and your math skills in time of crisis and not over-treat.  I know I can deal (even at a BG of 37), because it’s happened and I’ve lived. Nevertheless, I know it can end badly. And that’s the terrifying part…

Nevertheless, I love my diabetes. When I was diagnosed and finally accepted treatment, a teacher told me: “If you want to live a long and healthy life, find a disease – then nurse it.” Kind of stuck with me.  

I’m trying really hard to be grateful that my body pretty much  always alarms me right away if I’m under 80 (if I’m paying attention).  And I am hoping I can become a little bit more BRAVE like my younger self again. And with that: Don't live every day as if it were your last. Live every day as if it were your first. (Paolo Coelho).

~KeepWalkingTheDragon


Monday, February 4, 2013

Frustrations...

These days I seem to be becoming more and more frustrated with myself. The Humulin R and N regimen I am on has been kicking my ass and leaving my BG high and leaving me pissed of. I am unable refuse to CONSISTENTLY pre-bolus by 30-40 minutes, and the NPH peak leaves me in a constant fear of nocturnal lows, resulting in keeping BG values higher than they should be, followed by a 50-80 point climb into the 200s by 5:30 AM, every day, like clock-work.

Why am I on R and N? I started on R and N in 2008 after diagnosis, and a couple of years ago was switched to Lantus and Humalog (for a period of 6 months). There was no significant change in my A1C going from R & N to Lantus & Humalog (7.8, 7.6), but I did see better AM numbers (I blame the lack of better control with analogs on not having a CGM at the time). After looking more into it, I found it highly concerning that Lantus has an extremely high affinity (like 18-fold higher than regular insulin) for the IGF-1 (insulin-like growth factor) receptor (mitogenic potential), and that at least two independent studies have shown an association between Lantus usage and cancer. So I went back to the old and trusty R and N (something about how old they are combined with the fact that they are structurally identical with human insulin, unlike analogs, makes me feel good as a cell [cancer] biologist). However, my experience with Humalog for those 6 month got me used to the convenience of a  later bolus, and I found it harder and harder to wait the amount of time required for the R to work properly. The N pisses me off even more. The morning injection kicks in and I am dropping like crazy by 1 PM. The nightly injection (regardless of whether I shoot up at 7 or 10 PM) always drops me at 2 AM and never covers my early morning dawn effect... So I find myself constantly shooting up, having snacks, and constantly frustrated.

Having gotten that off my chest, I have an appointment Endo in 2 weeks and I am requesting  (read: demanding) a change to Levimir and Humalog (or Novolog). Having looked into Levimir, I feel much better about it than Lantus and (psychologically) I can't stand the NPH anymore. The fast-acting analogs like Humalog are only structurally disrupted to prevent hexamerization (thus resulting in faster release than R), and these changes do not affect it's affinity for other (non-insulin) receptors, making me feel pretty good about them... At the end of the day, there might me some risk to analogs, which (if any) will become apparent as more time goes by, but the evidence of the complications of long-term high BG are clearly evident today. And I conclude that it would be stupid not to change up my regimen when I know it will likely: 1. Give me better BG control, thus preventing complication and 2) (dare I say more importantly) give me some freedom...

Question: any T1s out ther on Levimir? Do you use 1x or 2x daily??

Thanks #doc for listening <3

Thursday, January 17, 2013

(Over)-Avoiding Lows & the CGM

I avoid lows like the plague. The lowest number I have seen in the last year or so was 77. And while I'm happy about that, I am not so happy about oftentimes running in the 160-220 range, with my A1Cs over the last few years firmly planted around 7.5-7.8%. I know that's not horrible, but I also know I can do better. The truth is I read so many posts about devastating lows other T1s have (sometimes frequently it seems) and it makes me feel super guilty that I am able to avoid that. But then I also hear about all the A1Cs in the 6s (and lower!) and I feel even more guilty for running high a lot of the time (even if it's not super-high)...

The truth is my A1Cs were better when I didn't stalk my BGs like I do today. I started stalking a few years ago with the main goal being not going low, and while I have successfully achieved this, I have also raised my A1C and I see the 200s way more often than I should. My endo is happy that I have (almost) no lows and he is also happy that I don't swing wildly up and down all the time. But I know that (on average) my numbers should be about 50 points lower.

For some time, I avoided the idea of a CGM because I didn't like the idea of something being attached to me. But I must say, testing 15-20 times per day (sometimes more) took it's toll on me emotionally (and financially). Furthermore, running high during times when I can't test all the time (like when I am teaching) due to fear of lows is bad and I know this. So finally, a few months ago, I got setup with the Dexcom Seven+ and I absolutely love it. Finally, I have some peace of mind when I am lecturing or hiking or chasing my dogs. Finally, I can give my fingertips somewhat of a break. And most importantly, I look at the graph and there is no denying what needs to change.

In the last few months, I have been able to push my numbers lower than I have felt comfortable before - i.e. I used to correct 90s and aim closer to the 150s before the CGM. Today, I feel much more comfortable with the 90-120 range. That is not to say I come close to staying there the whole time, but I have re-evaluated by goals from just keeping my BGs under 200 overall, to aiming for pre-meal values under 130 and minimizing post meal peaks to 180. Of course, I am not always successful, but the CGM has really made me reconsider some of the misconceptions I had about my BG trends. I have yet to have my A1C checked after starting on the Dexcom system (that's coming up next month) but I am (cautiously) optimistic. Also, I have to admit that the Holidays still kicked my ass this year (Dexcom notwithstanding) and I was totally guilty of rescheduling my appointment from 1/7 to 2/18 in an effort of avoiding disappointing myself and my doc... =)

Monday, January 14, 2013

T1D: Lows, Highs, Laughter

Type I Diabetes is not easy to live with. I usually do not let on about this fact when I tell others about my diagnosis. However, it became easier to be honest with others after accepting the diabetic me. Coming to terms with T1D for me was much more that just seeking treatment and sticking with it. It involved accepting diabetes as a part of myself and loving myself (and my diabetes) with all I had.

For almost four years, I did not carry around Glucagon or snacks. For almost four years I assured myself and everyone close to me that diabetes was "not a big deal". At first, I just tested four times a day, counted/estimated carbs, took the amount of insulin they said to take (nothing less and nothing more). My A1Cs were good, I felt good. I had my first "real" low when I was 20 years old. I was high (on weed), and I was confused and terrified. I was shaking. "I feel like I'm going to pass out." - I said to my boyfriend (now husband). "It's not the weed" (I'm an experienced smoker). Next thought: "I should test my blood sugar" (God bless me). "It's 42, I need juice, please get me juice, now, NOW." I chugged the tall glass of orange juice. "It's getting worse, please don't let me die." Within 5 minutes, I could feel the calmness creeping back in. "I'm starting to feel better", I said finally, drinking more juice. I didn't even test again after that (just once later, before bed). This happened a couple of months after I started insulin therapy. I was a brave soul back then... That is not to say this experience didn't shake me. I realized then that this was serious. However, I still didn't always carry snacks or Glucagon. But I started paying much more close attention to how I feel, having then realized that this could actually make me pass out (or worse). 

Flash forward two years: I'm living abroad, I'm broke and I can't afford to test often. I'm high on Moroccan (or Pakistani) hashish, I'm writing a research paper, I'm feeling quite stressed, and I'm feeling "tingly"? Something's off.... I must be really low, I think, quickly reaching for crust-less white bread (yep, in Spain, they sell crust-less bread slices!), Nutella, juice, whatever... 20 or 30 minutes pass. It gets worse, I feel shaky, terrified, awful... I test, finally: 340... WTF... It takes me another 30 minutes or so to figure out that what I am actually feeling is panic: what a way to learn that anxiety attacks and low blood glucose feel damn about the same. stupid paper, stupid money, stupid diabetes.

Which of course brings me to laughter - when tripping on mescaline a few years ago, I finally accepted myself as a diabetic. 

[If you're unfamiliar, Google the use of psychedelics in therapy and the use of MDMA in the treatment of PTSD (check out maps.org for recent studies). I may "defend" (explain in depth along with what Walking the Dragon means to me) all this is another post, but for now suffice it to say that classic psychedelics like mescaline or psilocybin have extremely low toxicity, and under the right set and setting can be powerful tools for self-exploration, extremely honest conversation, and self-acceptance. I am not saying this cannot be achieved without drugs or suggesting that anyone should use any drugs by the way. Also, I should mention that they are extremely powerful, mind-altering substances, and one should be well-prepared (in all the D-ways and the non-D-ways), well-researched, and have a sitter if they do ever engage.]

In any case - back to the story. I was tripping (mildly but effectively), and I went to check my blood sugar. My meter, instead of looking annoying to me as it usually does looked shiny and animated, welcoming and inviting. My shiny bottles of insulin looked even more friendly. "All this stuff - I'm so lucky to have it" I thought, reflecting on people 100 years ago, for whom T1D was a not-so-quick and awful death-sentence. Seemed so funny to put in a test strip, wait for the screen to turn on, prick my finger, squeeze out blood, apply it to the test strip and wait for a number - in fact I'm pretty sure I burst out laughing. This is who I am - I thought - Diabetic. And I am so lucky to be alive, to be healthy (T1D notwithstanding), to be able to enjoy life, to be able to know within such a small range of error what my blood glucose level is, and to be loved. And to love myself - with Diabetes - to LOVE my diabetic self... 

Today, I test frequently (understatement?), use a CGM, and hoard numerous snacks, glucose tablets (and even Glucagon!) with me at all times. And I tell many more people about my diabetes, along with the challenges that come with it. It upsets me much less than it used to when I encounter uneducated (even prejudiced) people, and it doesn't bother me that much anymore if people act like they feel sorry for me. Because I know myself and my disease, and try to be open and honest about it (instead of ashamed and ignorant) I can live better with it. And for that, I'm truly grateful. 

Con mucho amor ~M

Thursday, January 3, 2013

T1D: Things They Never Told Me

When I first started insulin treatment some 6 years ago, I naively thought it really was as simple as a carb-to-insulin ratio that when followed and timed properly would magically result in close-to-normal, steady blood sugars. I thought this, because that was basically what my healthcare providers told me - the only thing I was fore-warned about were the symptoms of low BG...

Looking back, I shouldn't have been surprised that after getting off a trans-atlantic flight to Spain, my numbers were consistently and annoyingly high for a few days... Or that after walking around and sweating in the Costa-Rican heat for hours, my seemingly non-symptomatic low of "37" (the lowest number I've ever sighted) was probably to be expected... Or that dehydration will mess with insulin activity... Or that I need about 40% more Humulin R to cover my meals while driving cross-country... Or that drinking alcohol can/will (depending on the amount of OH & carbs consumed of course) make your BG plummet, sometimes like 4-8 hours later (something college students should probably be aware of)!

This (I hope!) is not be the case for everyone, but I never received information when I was in the hospital learning to treat for the first time to what degree activity and stress levels (as well as simply the TYPES of food we eat, not just the CARBS) impact BG levels. Most of these things, I figured out as I went, and still learning everyday.

I'm not so much complaining about my healthcare providers - they suggested meeting with a nutritionist, and I got the initial free visit, but not having regular meetings as part of my insurance coverage, I obviously opted out. Once I realized that low BG (and BG levels in general) are a "serious matter" (understatement?), I was ever-so-grateful to have the internet to be able to look up all this info as well as compare notes with and meet fellow PWDs... Also, grateful to have the Dexcom technology - I know it's not perfect, but it makes my life A LOT easier.

Having said that, I extend my utmost respect to parents of children with Type 1 Diabetes... At least when I fuck up in my own D-care, I laugh it off (most of the time) and move on (always)... I can't imagine what it would be like if it was someone else in my care: I was too old for parental D-care (being 18 y.o. @ dx), but I think all the T1D parents (many of whose blogs I've been reading) are amazing!

Con mucho amor - and remember: do you own research, pay attention, and don't forget to walk that Dragon!