I've often wondered, "what does my husband feel/think about my T1 diabetes?"
Here's the thing: When I was dx'd and started treating , I said to him (my husband/then boyfriend....and to myself), "Don't [you dare] treat me any different. I just need to inject insulin now to cover the food I eat..." Period...
And that's exactly what he did. Nothing different. More recently (~1 year ago), it all started to spill out of me: how hard diabetes and insulin management really is, how much of a mess I am when I'm low/high, etc. And the whole Glucagon conversation. And then there was Dexcom. All of the sudden (although it was "no big deal") I elected to stick myself with a needle/plastic device, one that would stay attached to my arm/stomach for a week (or longer).
And he reacted accordingly. Accordingly to how someone would act when they LOVE someone. He listened to me. He asked a few questions.
The other night Dexcom woke me up (mildly low according to Dex, low-normal according to meter), I had 3 sips of juice [~3-3:30 AM]. As I got back into bed, he (heavy-ass sleeper, of which I'm jealous) was awake. He spooned/squeezed me, and said "Are you OK?" "I'm OK" I replied. And then I knew. Knew once again that the boy I married was "the one". Amazing man that he is. As amazing as when I'm low during daytime, and I'm crying and over-treating, and he says "Hey, wait. Wait for the juice to kick in. 15-15 rule, remember?"
Also, here's this: I always was afraid (being a bit insecure) that the Dexcom (or another medical device) would somehow ruin my (wonderful) sex appeal. Boy, was I wrong. The Dexcom experience has made me feel ever-so-confident to get an insulin pump.
I love you BM.
Truly Yours,
-MM
Wednesday, February 12, 2014
Friday, February 7, 2014
what might have been...what might (still) be...
Being human (and diabetic), I tend to often question "what might have been". Sometimes I question what I would have become if I didn't get type 1 diabetes at the age of 18. What would have been if I got it as a child? What would have been if I didn't start treating it when I did? Would my blood sugar have hit 300 and stayed there for hours this morning if I wasn't drinking beers last night, then overcompensating for a BG of 74 with juice and caramel-chocolate candies before bed?
These days, instead of asking those questions, I tend to ask myself "what will become of me if I..." Of course, most of these questions/fears concern my future as a PWD. I am only 25. I have had this disease for about 7 (almost 8) years, of which the first year I refused to treat. Did I fuck up my life by doing that? Or is it more like: I have only had this disease for 7 years, and although my A1C isn't great, I am working hard, and I know that I can improve it. But what about NOW? Will I be saying this in 10 years "My A1C isn't great but I'm working on it." Is it/will it be enough? Enough to shelter me from complications, or at least from the fear of utterly hating myself if I get complications from diabetes.
These things are always in the back of my mind, but when I'm talking to others (like my mother, husband, or friends), I'm all positive, like: "The treatment options are so great today, my CGM is so helpful, I am lucky to be able to have the items I need to live (AND LIVE WELL) with this condition..." Inside, it's a constant psychological balance of "what if, what then?" and an even more presise physiological balance of "how much and when?". And more importantly, when will it "all work out", while you slowly come to realize that the answer to that is "NEVER", although there are those fleeting moments of beautiful numbers (and the feelings that accompany them) that seemingly were achieved with no hard work at all and with grace at that. And then, there are moments when I don't question anything, I take my insulin, I eat my lunch, and I don't wonder at all, because I don't really care. Because whether my BG is 250 or 85 I will have to go to work, write my dissertation, take care of my pets, my students, dinner, and my sanity. Sometimes, there are more important things that blood sugar values and IOB calculations. Sometimes, I'm going to hike/drink alcohol/dance/have sex/whatever no matter what my BG is because I WANT TO FEEL HUMAN... (unless it's under 60 and then I realize that I live with what appears to be an angry demon and not a friendly dragon at all).
This may seem to be a non-sequitor, but I have a little "PWD in the wild" side-story to tell. Sort of. A few months back at my endo's appointment, as I was sitting in the waiting room, a young woman walked in (probably my age, no older than 30). She smiled briefly, and I smiled back, as we politely and quietly aknowledged each other's presence. I could tell that I knew her from somewhere and just couldn't place her - living in a small ass town tends to have that effect - you constantly meet people you know or sort of know in random places. It finally came to me that she was a full-time employee at the grocery store I frequent. And then I noticed that she was about 5 months pregnant. Assuming she had T1D, my mind wandered to whether or not her employer was accomodating about her checking her blood sugar, etc. as I have seen her so many times, standing behind the register (presumably for hours at a time). Ironically, I saw her again several times in the last two months, and I noticed that she was no longer working the registers, but instead seemed to be doing other stuff in the back, and I wondered if that was a direct result of her pregnancy with T1D. I thought a few times about approaching her, saying something like: "I know this is going to sound strange, but I saw you at the endo's office, and I guess we have something in common, so I wanted to say hi." Probably that would be OK, but you never know how people will react to stuff like that so I didn't make the gesture. Not yet anyway. I saw her again at the store the other day, this time looking a lot huger and puffier, and I said somewhat of a silent prayer (which isn't something I normally do) on behalf of this stranger and her unborn child, who doesn't seem like a stranger at all to me for some reason. And then I said another one, for myself, for my future, for the possibility of children, for my family, and for the ability to not just find calmness in the serenity prayer, but to apply it to my life.
These days, instead of asking those questions, I tend to ask myself "what will become of me if I..." Of course, most of these questions/fears concern my future as a PWD. I am only 25. I have had this disease for about 7 (almost 8) years, of which the first year I refused to treat. Did I fuck up my life by doing that? Or is it more like: I have only had this disease for 7 years, and although my A1C isn't great, I am working hard, and I know that I can improve it. But what about NOW? Will I be saying this in 10 years "My A1C isn't great but I'm working on it." Is it/will it be enough? Enough to shelter me from complications, or at least from the fear of utterly hating myself if I get complications from diabetes.
These things are always in the back of my mind, but when I'm talking to others (like my mother, husband, or friends), I'm all positive, like: "The treatment options are so great today, my CGM is so helpful, I am lucky to be able to have the items I need to live (AND LIVE WELL) with this condition..." Inside, it's a constant psychological balance of "what if, what then?" and an even more presise physiological balance of "how much and when?". And more importantly, when will it "all work out", while you slowly come to realize that the answer to that is "NEVER", although there are those fleeting moments of beautiful numbers (and the feelings that accompany them) that seemingly were achieved with no hard work at all and with grace at that. And then, there are moments when I don't question anything, I take my insulin, I eat my lunch, and I don't wonder at all, because I don't really care. Because whether my BG is 250 or 85 I will have to go to work, write my dissertation, take care of my pets, my students, dinner, and my sanity. Sometimes, there are more important things that blood sugar values and IOB calculations. Sometimes, I'm going to hike/drink alcohol/dance/have sex/whatever no matter what my BG is because I WANT TO FEEL HUMAN... (unless it's under 60 and then I realize that I live with what appears to be an angry demon and not a friendly dragon at all).
This may seem to be a non-sequitor, but I have a little "PWD in the wild" side-story to tell. Sort of. A few months back at my endo's appointment, as I was sitting in the waiting room, a young woman walked in (probably my age, no older than 30). She smiled briefly, and I smiled back, as we politely and quietly aknowledged each other's presence. I could tell that I knew her from somewhere and just couldn't place her - living in a small ass town tends to have that effect - you constantly meet people you know or sort of know in random places. It finally came to me that she was a full-time employee at the grocery store I frequent. And then I noticed that she was about 5 months pregnant. Assuming she had T1D, my mind wandered to whether or not her employer was accomodating about her checking her blood sugar, etc. as I have seen her so many times, standing behind the register (presumably for hours at a time). Ironically, I saw her again several times in the last two months, and I noticed that she was no longer working the registers, but instead seemed to be doing other stuff in the back, and I wondered if that was a direct result of her pregnancy with T1D. I thought a few times about approaching her, saying something like: "I know this is going to sound strange, but I saw you at the endo's office, and I guess we have something in common, so I wanted to say hi." Probably that would be OK, but you never know how people will react to stuff like that so I didn't make the gesture. Not yet anyway. I saw her again at the store the other day, this time looking a lot huger and puffier, and I said somewhat of a silent prayer (which isn't something I normally do) on behalf of this stranger and her unborn child, who doesn't seem like a stranger at all to me for some reason. And then I said another one, for myself, for my future, for the possibility of children, for my family, and for the ability to not just find calmness in the serenity prayer, but to apply it to my life.
Monday, January 27, 2014
From high to low
I used to run high all the time in fear of lows passing out/dying. My BG averages used to hover in the 180-190 range, with some 200+s seen during travel/holiday/stress/sick times. About a month and a half ago, following another endo appointment - "uncontrolled, globally high" (albeit with a surprisingly lower A1C than I expected, 7.2) - I decided that if it took having some lows and getting used to them in order to do better overall, that's what I needed to do.
The good news is: My 7-day, 14-day, 30-day averages have all greately improved, and I feel a million times healthier (and dare I say happier). Hard to admit, but consistently high BGs can put a damper on my (or anyone's) mood.
The no-so-great news is:
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58. I haven't been in the 50s in years and boy did I feel it. And may have cried a little. Thankfully, this is the only time in my tighter management days that I've been this low. I've seen so many more 70s, and am getting to the point where I'm rather functional in the high 70s range, and feel like total shit over 180.
Well, onwards then.
The good news is: My 7-day, 14-day, 30-day averages have all greately improved, and I feel a million times healthier (and dare I say happier). Hard to admit, but consistently high BGs can put a damper on my (or anyone's) mood.
The no-so-great news is:
58. I haven't been in the 50s in years and boy did I feel it. And may have cried a little. Thankfully, this is the only time in my tighter management days that I've been this low. I've seen so many more 70s, and am getting to the point where I'm rather functional in the high 70s range, and feel like total shit over 180.
Well, onwards then.
Wednesday, January 22, 2014
In other news:
A #rhyming (#sortof) #WORDLESSWEDNESDAY
As I mentioned in my last post, I've been trying really hard to lower my overall BG values and largely I've been doing pretty well on that front. My 7-day BG clocked in at 140 :D about a week back:
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"Whether the weather be fine or whether the weather be not, we shall weather the weather, whatever the weather, whether we like it or not."
At the same time, #Diabetes is unpredictable and this is today:
"Whether the weather be fine or whether the weather be not, we shall weather the weather, whatever the weather, whether we like it or not."
Friday, January 10, 2014
Determined...
I haven't posted in almost a month! Last time I was here I talked about my 1-yr blogaversary which corresponded nicely with an Endo appointment. That week I came down with a cold which kept my BGs even more out of sort that usual (read: High all the time), which was not very fun because presenting my Endo with a week of shitty numbers is not my idea of a good time. My A1C was "uncontrolled" (7.2) but in fact lower than I expected given the numbers I was seeing recently. My endo is awesome of course and was nothing but encouraging and helpful, although he made it clear that globally decreasing my BGs was the way to go. I think my I:C ratios are reasonable, but I did realize that my basals needed work, along with my psyche (specifically, I confessed to him that due to the fear of lows overnight, I go to bed higher than I should which in turn affects the next day)... Not sure how to fix that, except have a little faith confidence in my ability to maintain a relatively flat line of 80-120 mg/dL overnight. Easier said than done. However, armed with a donated Dexcom sensor (see last post), along with a refreshment read of particular sections of "How to Think Like a Pancreas", stringent monitoring of every bite I put in my mouth, logging, and no alcohol whatsoever (at least for now, while I figure things out with basals), I am incredibly determined to be the best I can possibly be at managing my condition and feeling better (physically and mentally) about my D. management. Last night, at a BG of 121 at 11 PM, I took a leap of faith confidence in Dexcom and went to bed without that sip or two of juice that I am for some reason so keen on having when my nighttime BG is below 150 (yes, you read that right, I feel compelled to go to bed higher, although during the day I'm incedibly comfortable with 90s these days :) Anyway, here is what happened:
And I think it is pretty awesome! And for the first time in I don't know how long waking up at 6:45 AM this morning (with a BG of 101) I managed to handle breakfast like a champ (you should see the typical 200+ peaks I ususally get...)
I can only hope that once this very last (in god knows how long) Dexcom sensor will hang on for dear life (day 12) and provide me with more and more pictures like this, so that I know when I rip off that sensor, I can do it again without it. And again. And again.
Have I mentioned that I feel great?! I never realized how even consistent high 100s with some 200+s in between can make you feel like shit... My 7-day average on my meter is 154. I'm used to the 190s.
I hope I can keep it up (down).
With love, -Maria
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
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
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