17 years

June 10, 2012

to the love of my life…

my forever partner in all SORTS of crazy…

my co-mama in the growing and raising of Ms. Diva…

the best person to ever happen to me…

you were Type Awesome before we even knew what that was.

*****

type 1 diabetes is not fair for or decent to you, either.

when we met, I ignored the crap out of it.

I told you that I had it and what it was, because that’s what I do.

but that didn’t mean I took a tiny bit of care of it, or of myself.

this broken pancreas gets in your way, too.

thank you for not letting it scare you out of our life.

*****

you are here with me in every moment of d.

all of the annoyance, fear, pissedoffedness, anger, resentment

of the challenges and pitfalls d brings our way.

AND, more recently, in the joy of the “LOOK at this 24-hour/7-day/30-day/90-day average!!!!!!!”

the amazement of the first A1c of 6 or below

of finally feeling like something is going right with d.

you are here, and I am so grateful for you.

*****

I don’t know how we took some of the journeys we took without some major d-mishaps taking place–

pure luck, and the universe winking in our direction.

standing on line for Lilith Fair in New Mexico and boiling the insulin.

me leaving on a plane for Nashville, my pump sitting on the towel rack at home in New York.

that other time I took both sets of house keys with me to the conference in Denver

(not d-related, but my goodness, there have been plenty of things for you to complain about!)

scares with eyeballs, pumps, insulin, insurance denials, new endos, no insurance at all…

no matter what, you have my back and fight the good (and bad) d-fights with me.

thank you.

*****

you learned about insulin & sugar, carbs & IOB, potential complications & depression.

about how awful  450 mg/dl is.

the difference between BGs that lower just the right amount

and unsuspecting, unsymptomed lows that creep out of nowhere

you found me slumped on the kitchen floor, gazing into the open refrigerator, and got some juice in me.

you went with me to endo appts. with dr. wonderfulendo in a different state, when I told you

I needed to see an endo with a brain instead of the dr. crappys that were a dime a dozen where we lived.

you listen when I’m scared or mad or just burned the hell out.

and you help. even if I snap at you when you ask if I need help.

you help.

*****

you make everything okay, somehow, in ways I don’t begin to understand.

navigating mazes of EOBs and phone calls and blood tests and backdated referrals,

shouldering the bother and the annoyance, the crap and the everything

picking it up when I just have to put it down

just for a minute.

thank you for supporting me, for loving me and all that d brings with me…

when Dex screams all the freaking night long b/c it thinks I’m 40, when in fact I’m 80(!!!)

when I forgot to put the pump back on and we just got our InNOut order.

when I start testing my blood just when we’re about to have dinner.

when we decided that 6 negatives were enough,

and we already have the perfect amount of enough with us and our daughter.

we are enough. together.

*****

seventeen years ago we began.

in that time, so many lifetimes.

so many moments, and not just the d-ones(!)

thank you for every single one of those moments, those days

and every one still to come.

*****

happy anniversary, my love.


saturday snapshots with D

May 18, 2012

 

 

 

 

 

 

 

Check out all the other Saturday Snapshots right here!.

D-Blog Week 2012, Day 6: Back for the third year, let’s show everyone what life with diabetes looks like!  With a nod to the Diabetes 365 project, let’s grab our cameras again and share some more d-related pictures.  Post as many or as few as you’d like.  Feel free to blog your thoughts on or explanations of your pictures, or leave out the written words and let the pictures speak for themselves.


d-challenges & victories #hawmc day 27

April 27, 2012

I don’t know where today went. that’s not right. yes, I do. but I’m here, under the wire again, and going to do this while it’s still Day 27. booya!!

5 smartDpants challenges:

1. Remembering to take care of my diabetes.

That sounds stupid, diabetes is here all the time, there’s always something to pay attention to, how could anyone forget to do what needs to be done? All I know is that it happens, like when my pump yells at me that there’s only 30 units of insulin left in the reservoir and we’re 5 minutes behind schedule to get everyone out the door to kindergarten and work and the other work, and the oldest dog needs his Rx and both dogs need water and someone needs to pull the laptop cord out of the wall and omg, where did the homework go and are we TEN minutes late now? I’ll refill it when I get to work in an hour or so…except sometimes, I forget.

2. Paying attention to what the numbers say, and how they’re trending.

It’s gotten pretty easy to look at a Dexcom reading of 80 with a horizontal arrow and think all is well. Except my BG’s habit these days is to decrease really suuuuuuuuuuuper slowly. So I don’t get any fancy down arrows screaming at me to test and treat IMMEDIATELY. I get these lazy, sauntering downward CGM’s…from 80 horizontal…to 75 horizontal 15 minutes later…to 70 horizontal 20 minutes later…and so on…I get lulled into thinking all is well. With my “hypoglycemic unawareness” business that leaves me symptomless with a 35 mg/dl, it sometimes isn’t so well. I need to pay better attention to what’s going on.

3. Entering all the numbers.

BGs, 10-15/day. Basal rates, currently 5 a day that can change every few days. Boluses given, any time I eat (at least 3 times/day usually) or correct a high BG (some days 1, other days 3-4). Carbs eaten, either SWAG’d or actually counted. I do so much better when I enter ALL the numbers in my log/spreadsheet, every day, and sometimes I get that done. Some nights, my partner has to listen to me ask her “what did we eat for dinner on Monday that was 30 carbs?” when it’s Thursday. (She’s super awesome at remembering. Love you, A!)

4. Choosing the healthier/less fun/more difficult choice.

I make a big deal out of saying I can eat whatever I want, whenever I want, and I’ve lived with D forever and it can just go screw itself because damn it, I will have a cupcake and so there. It is what it is. I can, and I’ll do what I need to do so I keep my BGs in a decent range. But the thing is, my BG is such a freaking flatline when I eat fewer carbs. So it would be better, and feel good, for me to eat salad at most meals. I like salad, a lot, don’t get me wrong. And I do it eat it, a lot. Without bread. But constantly making the choice wears me down.

5. Loving myself just the way I am.

Sometimes I’m just so pissed at my body for failing the way it has, and my dumb pancreas for making my life this way. I can go through and do the gratitude thing or the “this is how it’s made my life so great” thing or the “I wouldn’t have had these experiences without this massive problem” thing, sure. I can. I wish I didn’t have to, though. I wish I could love this body with its brokenness and failed endocrine and autoimmune mess that makes parts of my life a huge pain the ass. Meh.

5 small smartDpants victories:

1. I have rocked an HbA1c of 6.0, 5.8 or 5.9 since November 2010. I never thought I could ever do that. I’m in a little groove.

2. Hundys. I get a BG reading of 100 mg/dl every so often. They’re fun. 😉

hello, hundy!

3. Flatlines, of the CGM kind, also known as d-planking. Those are also fun.

plank!

4. No-hitters, also of the CGM kind.

5. 31 years and 11 months of type 1 diabetes with no complications. #BAMthereitis!!

wego Health Activist Writer’s Month Challenge, Day 27: 5 Challenges. 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.


negative. again. #hawmc day 23

April 23, 2012

 

Lately, a lot of the blogs I think about writing are about something I’m really tentative about putting “out there,” here, on this page. That would make it real, and something I have to deal with, and while I put on this face of smart snark and usually love that part of me, I haven’t been able to get there yet with this particular topic. But I’m tired–really, super tired–of carrying it around with me. While I still don’t know the answer (and it pains me to even say that), or what I’m going to do or how I’m going to deal, I have to put this baggage down. Here and now.

So here it is: I was supposed to be pregnant by now.

I was supposed to have lots of fun and challenging and joyful and interesting stuff about being pregnant with type 1 diabetes to blog about. Maybe I’d even have given birth by now…it’s been such a long time (in my head, anyway), if the first IUI had worked a little more than a year ago and everything had gone well and according to plan, there would be a baby in the house now.

Not so much.

My life partner and I are both women. So it takes a ton of money, time, and mental and emotional energy in ADDITION to all that it takes to keep the diabetes in line, in order to try to get pregnant. Selecting and purchasing frozen sperm. Making appointments with fertility docs; having lots of ultrasounds; taking fertility meds (pills) that make my BGs go absolutely CRAZY HIGH and make me absolutely insulin resistant; extra shots of fertility meds. Then the IUI procedure (a different kind of shooting up than the type 1 kind, for sure!) and a couple of weeks of trying to forget that we’re waiting, while taking more hormones that also keep the BGs riding HIGH HIGH HIGH. Then there’s the stress from waiting and trying not to remember, that awakens the emotional, disordered eating patterns and also contributes to the difficulty of keeping the BGs down.

Throughout it all, I’ve been trying so hard to keep my diabetes “control” much tighter than ever before. I got my HbA1c down to 6.0 (an average of about 120 mg/dl) in December 2011 before we started trying, and it’s been between 5.8 and 6.0 since then. My target BG  is 100. I did, and do, this in order to keep getting the thumbs up from the endo so I can keep visiting the fertility docs. I honestly don’t know if I will be able to keep the supertight control going if I’m not doing it in pursuit of the pregnancy goal. I wasn’t able to do it, or didn’t care enough to do it, before I wanted to get pregnant.

Accompanying all of the “regular” type 1 crap, the “managing diabetes while trying to get pregnant” crap, and the “trying to get pregnant for the first time at age 39 with hormones and IUI” crap, six times in the last year, there’s been the total disappointment. Frustration. Grief. Pain. Anger. Feeling hopeless. Like a failure. Like there’s something wrong with me. Every time I wasn’t successful.

Wait, all of that kind of fun was supposed to be from type 1 diabetes. I’ve had all of those feelings since I was diagnosed with t1D thirty-one years ago. And for the last year, I’ve felt twice as much of those feelings, over and over again. It’s sucked. A lot.

I found the DOC in 2010 when I was first ready to move forward with taking better care of my diabetes in order to get pregnant. My HbA1c was about 8.0 then. All I had in my head was stupid “Shelby, drink your juice” Steel Magnolias, kidney failure, and death with regard to having type 1 and getting pregnant, much less having a baby. The first blog I found was about a young woman’s diabetes-related complications and complicated pregnancy with type 1, and it scared the living crap out of me. It took me a few more weeks after that to get up the courage to google “pregnancy and type 1 diabetes” again. That’s when I found Kerri. MelissaLyrecha. And began to feel like yes, there was some hope and maybe I COULD do this.

It’s not fair (stamp foot) that I finally learned/realized I wouldn’t have to pull a Shelby and die in order to give birth, decided to pull myself together and take care of myself and my D, and got the whole type 1 pre-pregnancy-prep thing down pretty well for more than a year, yet…nothing. Not. Fair.

I did the 6th negative pregnancy test a few weeks ago. Negative. Again.

Not. Fair.


a theme song for me and D (#hawmc day 11)

April 11, 2012

***

One, two, three, four, five, six, seven, eight

Syringe, infusion, insulin incorporated

We’re gonna do it!

***

Give us any carb we can eat it

Low blood sugar? and we’ll treat it

We’re gonna see those A1cs come true…

Doin’ it our way

***

There is no cupcake we won’t try

Never heard “bacon’s unnecessary”

This time we won’t forget to bolus

We’re gonna do it

***

On your mark, get set, sweatbetes!

Got a dream and it’s not BG-less

We’re gonna make those A1cs come true

And we’ll do it our way, yes our way

Make all our d-dreams come true

And we’ll do it our way, yes our way

We’ll make our non-d-dreams true, too…

For me and you.

***

When I read the prompt for today, the very first thing that ran through my brain was Laverne and Shirley’s theme song. So there it is, a little doctored in such a way that it fits this d-blog. Enjoy!!

Prompt for Day 11 of the wego Health Activist Writer’s Month Challenge: Theme song. Imagine your health focus or blog is getting its own theme song. What would the lyrics be? What type of music would it be played to?

For more posts like this, check out the wego health Facebook page and #hawmc on Twitter.


time capsule (#HAWMC day 1)

April 1, 2012

For this first post for wego Health Activist Writer’s Month Challenge, I am pretending that I’m making a time capsule of me and type 1 diabetes that won’t be opened until 2112.There is so much paraphernalia associated with my t1d life, and most all of it absolutely necessary, that I hope the time capsule has LOTS of room! Here are just a few of those necessary items:

One Touch blood glucose test strips; sharps container; apple juice box (4.2 oz./15 carbohydrates); Tegaderm tape; cute little Clinique GWP bag for d-supplies; Dexcom continuous glucose monitor sensor; SkinTac extra adhesive; lancets; insulin pen; poker; insulin pump reservoir; OneTouch Ping blood glucose meter; Novolog insulin; Dexcom Seven Plus continuous glucose monitor; Animas Ping insulin infusion pump.

(do you love the other juice boxes on the nightstand in the background?)

The Most Absolutely Absolute Necessities

Of course I forgot to include a few other absolutely necessary items in the photos: diet coke (!!!), calorieking book/app, and glucose tabs, sure.

Finally, my most recent hemoglobin A1c results, on a big explanatory handout from my endocrinologist, dr. wonderful. I just got it last week, so it’s at the forefront of my d-thinking.

March 2012 HbA1c

I hope no one in 2112 has to know what an HbA1c is. I have no idea what people in 2112 will think of all the d-stuff in my time capsule when they find it…the one hope I have is that they look at it from an archeological perspective–that diabetes will be a long gone historical lesson by that time, and none of the items that are absolutely necessary to my life are necessary anymore. Cure by 2112? Yes. Please. Sooner? Even better.

This is Day 1/Post 1 for the wego Health Activist Writer’s Month Challenge (#HAWMC). Woot! 


letters to dear dr(s). crappy and wonderfulendo

May 10, 2011

DBlogWeek2011Banner

There have been so many of you, I’ll just number you chronologically. Your offenses are very similar: condescending attitudes; inability to listen to what I shared with you; flat-out inaccurate information about this disease; labeling me “noncompliant” or “emotional” and then using that as an excuse not to provide the best medical treatment I needed…and so on. Here we go. (the yrs. old = my age when I saw these drs.)

Dr. Crappy #1 (7 yrs. old): You misdiagnosed me, leaving my mom with “she’s got a flu bug” which several weeks later became me almost falling asleep in the pool during swim lessons. How could you not smell the ketones on my breath? I was drinking at least a gallon of water a day, falling asleep sitting up in the middle of the afternoon, and spending the rest of my time in the bathroom peeing everything out. Easy enough to get urine in a test tube when it’s coming out of me so frequently–WTFructose?! Shame on you.

Dr. Crappy #2 (7-17 yrs. old): You were pretty much the only endo in town. You labeled me “overweight” and “an emotional eater” when I was 10 years old, and I wasn’t overweight (I have my medical file from your office). Every time I came to an appointment, you told me to lose weight. At what point might it have occurred to you that another approach would be helpful? Never?  I attribute at least part of what’s been the story of my life with craptastic body image, eating and exercise behaviors to you.

Dr. Crappy #3 (19-20 yrs. old): You refused to provide medical advice for my diabetes until I lost weight. You have type 1 diabetes, and prided yourself on averaging about 65 mg/dl at any given time, and keeping a bottle of glucose tabs with you everywhere and just “popping a few” as needed–but not too many, watch out! Many times you compared yourself to me with disparaging comments about my weight, my (lack of) BG control and overall “noncompliance.” Thinking of you still makes me cringe.

Dr. Crappy #4 (35-36 yrs. old): You upped my basals constantly based on what–my HbA1c? Because I sure never gave you any BG data to base any decisions. Most of the rest of your patients were type 2, and your nursing staff constantly forgot that I have type 1. Due to your misinformed increases in my insulin ratios, rates and all else infusion pump, I ate all. the. time. and ran low all day, needing more and more food and sugar just to be able to think for a minute. I firmly believe that many of the other meds I “needed” during that time weren’t really indicated, because my symptoms were coming from always being low. I do admit that had I tested more than twice a day (on a good day), I would have had ample data to fight back. But you shouldn’t have been changing anything without that data anyway.

Dr. Crappy #5 (37-38 yrs. old): I am grateful that at least you knew that #4 had me on way too much insulin. Very grateful. I’ll admit that. But, you went way over into the other end of the pool, with your low-low-low carb diet recommendations and strong suggestions that sound just a little bit anorexic-crazed. I’m really glad you never broached your trademarked nutritional protein supplement food replacement thing to me, because I would have lost it on you. Your staff doesn’t know the difference between types 1 and 2, and one said (in the same breath) “Your BG is too high, you need to watch that. I had a patient die from going too low, though, so watch out for that.” You’re also a little lazy, wanting me only on a Medronic pump because the rep hangs out at your office every week, then suggesting the Omnipod because a colleague of yours loved it. Do some research, find out what’s available and then talk options! I will say THANK YOU for writing the letters for my Animas Ping and Dexcom cgm, but you didn’t even want to know how they worked! That’s just weird. Get over yourself.

WHEW! Enough of that ickiness. Nice to get it out there, though. Now, on to the good stuff.

Dr. WonderfulEndo #1: (21-32 yrs. old) THANK YOU for telling me “it would be better if you could lose some weight, but it’s not necessary in order to get your BG under control. You don’t have to be skinny to manage the type 1.” Thinking about it almost makes me cry. You provide the best, most current, most supportive treatment for your patients regardless of their circumstances, and that is so incredibly rare. Here is where I apologize for still not testing more than 2-3 times/day and not providing you with decent data so that we could make the best decisions about my care. We could have done great things together–and I am so grateful for all of my appts. with you. Then, when I didn’t have great or much insurance coverage you didn’t collect anything over the amount billed to insurance. If you hadn’t done that, I would have had to break up with you. SO GLAD that I didn’t have to! You. ROCK.

Dr. WonderfulEndo #2: (38 yrs. old-present day) THANK YOU for listening to me, sitting with me for up to an hour at a time, and looking at my crazy logs of 15 BGs/day and everything d-related, speaking to me as an intelligent person with 30 years of experience. THANK YOU for talking to me as a problem-solving partner. THANK YOU for treating me as someone capable of doing the necessary things, even though they’re hard, in order to take better care of myself. THANK YOU for saying “we can figure this out,” and then helping me do that! THANK YOU for making it easier for me to “tweak” boluses and basals, and for only taking on 1 “tweak” at a time–not my entire plan for my entire day, because that doesn’t do anyone any good. You. Also. ROCK.

p.s. to WonderfulRD/CDE and WonderfulNP/CDE (38 yrs. old-present day) THANK YOU for listening, for laughing and crying with me, for looking at my numbers and logs and ALWAYS asking gentle, positive questions about what I CAN do, never chastising me for what I haven’t done/didn’t do. THANK YOU for alerting me to the fact that I’m a big correction stacker–I’m still trying to limit that a little. THANK YOU for making certain things sound possible, and for celebrating with me when they are! I cry just thinking about how much you’ve helped me. Looking forward to all kinds of goodness to come…and can’t believe I just typed that about my d-team: it’s such a relief, a joy, and a privilege to have medical providers who get it, and who can bring it. It’s about time.


%d bloggers like this: