what brings me down – #DBlogWeek Day 3

May 14, 2014
Image

May is Mental Health Month so now seems like a great time to explore the emotional side of living with diabetes. What things can make dealing with diabetes an emotional issue for you, and how do you cope? (Thanks go out to Scott of Strangely Diabetic for coordinating this topic.)

After Diabetes Blog Week 2013, I drifted off and didn’t feel like blogging for a while. A few weeks became a month, and then three…then six…and…here we are, a full year later. But what I didn’t want to acknowledge was that something else was going on as well. Quite a few things, actually, and most of them either were directly related to diabetes, or indirectly impacted my diabetes the way every. freaking. living. thing. impacts my diabetes in SOME way, because it does.

What was that something else, that made/makes dealing with diabetes an emotional issue? Let’s see…

The best medical care I’ve ever gotten for my diabetes was in the “Sweet Success” program for pregnant women with diabetes, and a few women with type 1 in the preconception stage (like me). I’ve been seriously grieving the loss of that expert, kind, diabetes medical attention ever since I had to stop going to the program because I…

Couldn’t get pregnant, and realized that I’m not ever going to be able to get pregnant, and surprisingly enough, I couldn’t blame diabetes for that one – that I’m aware of, anyway. Nope. I did everything diabetes-related preconception-wise perfectly. But my body decided to play yet another cruel trick on me. No babies for this body.

It made – and still makes – me so incredibly sad. I was ready. I was going to do anything I had to do, to take care of my diabetes and my body and me, in order to safely and healthily carry and birth a baby. Success story? Well, as much as anything could be under my control, and plenty of it wasn’t, but the rest of it? The diabetes preparation? I was ON it. That’s all it was supposed to take, right? Right? I was supposed to want it bad enough that I’d take good care of my diabetes, and THAT would make the difference – that was what everyone (books, blogs, doctors, random others) said!
 
So I did. I cared and paid attention to my diabetes like I had never done before. I whipped that fucking blood sugar into shape – 5.8 HbA1c? 6.0? 5.9? DONE. Weight? Lost it – 20 pounds of it. Everything else they threw at me, I handled. Except it didn’t matter.

So much of this diabetes life is straddling the insanely fine line between THIS IS ALL MY PERSONAL RESPONSIBILITY AND IF I JUST BALANCE IT A LITTLE BETTER AND IMPROVE MY SKILLS AND LISTEN TO THE DR. AND COUNT THOSE CARBS AND START EXERCISING AND TESTING MORE AND…AND…IT’S ALL UP TO ME, TO DO IT RIGHT AND MAKE SURE NOTHING BAD HAPPENS.

and on the other, completely opposite hand:

NONE OF THIS FREAKING MATTERS AND NO MATTER WHAT I DO, IT’S ALL A CRAPSHOOT. RUN THOSE NUMBERS ONE MORE TIME AND SEE THAT EVEN IF I AM PERFECT, ANY OF THE AWFUL THINGS ON THAT LIST OF COMPLICATIONS OVER THERE COULD STILL HAPPEN. MAYBE THEY’RE HAPPENING RIGHT NOW. WHO THE HELL KNOWS? NOT EVEN THE FREAKING DOCTOR.
 
I’ve hit the point in my diabetes journey where I’m honestly terrified that complications will set in tomorrow. And also incredibly guilty, because I haven’t experienced many of a very severe level…YET…It’ll be 34 years on June 13, and I *should* be grateful and happy and accept how lucky I am.
 
But I don’t trust that I’ll be one of the so-called “lucky” ones who hit 50+ years without diabetes complications.

There’s the big bad, right there. I don’t trust diabetes not to whack me, or my loved ones, upside the head. I don’t trust that bad crap isn’t going to happen due to this crappy disease. Diabetes, and then infertility/endometriosis, really drained my trust away.
 
Fear. Anxiety. Grief. Pain. Worry.
 
Whether associated with big-picture diabetes life, or the day-to-day chronic diabetes disease management life…they’re there.
 
(Don’t worry – tomorrow’s post will be brighter, and I’ll remember to talk about the coping then too. Thanks for letting me release all this and just GO this far down – it’s a little scary, but I needed to saywrite it.) xoxo
 

Here are lots of other posts from #DBlogWeek What Brings Me Down – Wednesday 5/14!


went for a walk today

May 4, 2012

I went for a walk today. By myself, with my iPod. That shouldn’t be a big deal, except it sort of was.

Background: About a year ago, I had to get some serious dental cleanings–underneath my gums, with laser treatments, because the gums had just begun to recede a little and possibility for infection was high. I have never had any cavities, and have always brushed and flossed, so I was surprised and not thrilled about my gums getting all sensitive (moody gums! who needs that?). That’s when I first learned about the connections between diabetes, heart disease, and gums. Criminey. Like we need one MORE diabetes-related complication to worry about.

My amazingly awesome dentist (I mean it, he’s wonderful) let me know that I couldn’t have the treatments while I was trying to get pregnant in case the fertility treatments actually worked, and by the way, all the fertility hormones I was taking were likely causing the problems with my gums and making the risk of gum disease even HIGHER. That’s JUST what I wanted to hear. EXCELLENT.

But I could appreciate the idea of not battling the hormone-intensive insulin resistance for 6-8 weeks, the amount of time needed for 4 extensive gum treatments and recovery. So I decided to pair the dental work and break from extra hormones/stress with some extra attention to my BG and taking care of myself, and thought what the hell, let’s throw some exercise in there as well just for fun.

I should explain–exercise has NEVER been fun for me. I have regularly exercised at a few times in my life, and the only time I didn’t absolutely hate it was when it was related to doing something else that I loved: marching band practice in high school, for example, or multi-day DisneyLand vacays, or other walking/touring vacations. I was doing those things because they were activities that I loved, and the exercise just came along with it. I could endure that as long as I had the other, better things to do for me.

Exercise to make my body more fit, healthier and feel better? Hell, no. I’ve also struggled through many a time period trying different exercise programs, plans, classes, videos, whatever, and hating the daylights out of it, and quitting almost immediately. I never enjoyed it. Ever.

So this decision to move my body through space and time with the only intent being “taking care of myself” was a big deal for me. I was prepared to hate it the same way I’d hated it all the times before. But I decided I was just going to try it, with no expectations and no big goals attached to it, other than just getting myself out the door and doing it.

I decided I would make it as easy as possible for myself. I would just walk, in our lovely cute neighborhood, in the morning before A. and Ms. Diva got up. I wouldn’t take either of our big dogs, because they sniff and ponder and pee and meander, and that’s annoying when I just want to move.  (did I just say that?) And I wouldn’t worry about how long or far or fast or anything I was going. I’d just go outside and start.

I loved it. LOVED it. That’s so cray-cray, I can’t even believe it. Truth.

So, I kept going! I walked about 30-40 mins. every other day, and then every day, and then I started going a little faster. Running? Sure. I was happy, so very happy. The endorphins lasted pretty much all day. I started losing weight. My insulin requirements kept going down, down, down. I was drinking apple juice for lows several times a day. Insulin resistance? Pretty much gone. I went through nearly 3 months like this, and was a changed woman.

Then sometime in mid-June, I woke up, put my feet on the floor and felt like someone was poking sharp knives up through my heel. Damn it. Hello, plantar fasciitis. Really? REALLY?!?

Hello, primary care doc. Hello, podiatrist. Hello, online searches for self-care. Hello, physical therapy and ice packs and stretching and new shoes and new socks and sleep splints and…and…for 6 months. Meh.

No more walks. I switched to a gym, rode exercise bikes, turned my iPod up really loud to drown out my pissiness at my right foot for hurting so much. Then I got bored with the gym, and the winter darkness and rain began, and life got back in the way and work got intense and so…the exercise stopped.

I walked for things I had to do, with Ms. Diva, with the family/dogs, to run errands, for events, etc. We went to Disneyland in the fall, and my foot made it through that okay. By this spring, it stopped feeling like it had shards of glass all up in it, and just ached sometimes. But I wasn’t walking for me anymore.

Lately, I’ve had enough of that. I’m not doing fertility treatments, it’s spring, the sun is out, the weather is gorgeous, and it’s time. I need this. I need to think again about taking care of me. Just for me.

So I went for a walk today. No running (although that would be my dream again someday), no expectations, just walked. Lady Gaga, Depeche Mode, U2, Joan Jett, and me. It ROCKED.

 


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.


stronger (what doesn’t kill me…) #HAWMC day 2

April 2, 2012

“What doesn’t kill you makes you stronger.” I don’t know who originally said this quote, but Kelly Clarkson is bringing it on nearly every radio station all day long lately. I love her rendition of it, and I’ve been hanging on to the song and the quote quite tightly lately. Belting it out at the top of my lungs right along with Ms. Kelly feels really good.

You see, living with type 1 diabetes is dancing on the edge with a killer, 24/7. That sounds really melodramatic and cheesy, and I don’t mean it to sound that way. That’s just how it is. From the moment I was diagnosed with type 1 in ketoacidosis at age 7, right before I fell into a coma for 4 days, both me and my family were inundated with information about the potential ways diabetes could (would?) kill me. As if the coma weren’t enough of a slap in the face, no, there was plenty more to heap upon us about how dangerous my new existence was.

There were the warnings/discussions/guilt trips about “diabetic complications.” The longer we live with type 1, the more likely we are to experience problems with our eyeballs, our kidneys, our blood vessels, our joints, our gums…. Those warnings were (are?) often used as pressure to fix or change my behaviors doctors determined were “bad.” It didn’t work, in my case. I spent many, many years out of anything close to control of my BGs. Denial? Maybe. Normal teenage rebellion plus pissedoffedness at a broken pancreas? For sure.

It’s another delicate balance between keeping blood sugars in the so-called “normal” range of 70-130 mg/dl and bottoming out to 30-40 mg/dl, becoming unconscious, having a seizure, getting hurt, not waking up. I’ve only had one experience where I was unconscious and had a seizure; I’ve had several where I needed someone else to help me. Many more than several. A sad consequence of me getting my BG into “good” (really tight) control is that I’ve lost any sensations of low blood sugar that would warn me at 70 or 60 mg/dl and prompt me to get some sugar by myself. Awesome. The risk of dying from low blood sugar is always there.

Oh, blah. My point with loving this quote is that enduring all that type 1 diabetes is trying to do to kill me, for the last 31+ years, has made me strong–much stronger than I would be without type 1. I’ve learned to manage the dancing on the edge, even when the edge moves and the killer plays dirty. I wouldn’t go so far as to say that I’m thankful to diabetes, but I’m smarter than it is (even when I don’t feel like it), and stronger because of it. I’m dancing, all the time.

It’s been almost 32 years, t1d. Bring it. I’m still dancing. What doesn’t kill me makes me stronger.

This post is in response to the wego Health Activist Writer’s Month Challenge Day 2 prompt. Quotation Inspiration: Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes.


31 years and some cupcakes, too

June 13, 2011

Here’s the thing: Today is my 31st anniversary of my type 1 diabetes diagnosis.

It’s my 31-year diaversary, if you will. And while I hoped to offer a post containing all kinds of witty musings and tender lessons learned, complete with inspirational how-to’s and potentially-scary things gone awry that turned out to be funny and fine after some unexpected help…I’m not really feeling it. Sorry about that.

I’ve been trying to write this specific post in the few weeks since my last one. After I got all revved up and started with d-blog week 2011 (which was awesome, and quite the cool way to start this whole d-blog thing.Thank you, Karen!), I lost some steam. We had a ton of guests coming to stay at our house one week after another; lots of excitement with end-of-school-year and other special events; and just not a lot of time to actually sit down and type any of the things I’m thinking about D into a blog post.

However, I did have the opportunity to do a guest blog for Kim at Texting My Pancreas, and just finished another for Meredith at with a side of insulin that you’ll see on June 15.

Anyway, a lot has gone on. Other major life things happened, and lots of not-so-major life things too, that occupied my head and heart right along with D:

*Ms. Diva had her preschool “graduation” (Really? She’s five!) and kindergarten registration for August.

*Ms. Diva also had her first ballet performance, where she realized that she is meant for the stage with an “I belong here” look in her eyes as she promptly stopped doing much dancing so she could search the audience for her family and give us a huge smile.

*My mom traveled to visit us for the week of both of Ms. Diva’s events.

*My partner and I celebrated our 16th anniversary last week. And after a year in the new home/town, we actually found a wonderful SITTER(!) who lives just around the BLOCK(!) and whom Ms. Diva LOVES(!). Now we get to go to a movie next month, too! HALLELUJAH!!

*A good friend just gave birth to a beautiful baby girl. Hello, Baby M! Congrats, Mama and Papa!

*It was my nephew’s 2nd birthday this weekend. Happy birthday, adorable boy!

*My best friend finalized and accepted an offer for an awesome new job that will take her from Northern California to Rhode Island. I’m so. totally. excited. for her, and at the same time, sad that she’ll be so far away. Another of our supergood friends and I had a gorgeous farewell dinner with her, and then she spent a whole day with me, my partner, and Ms. Diva this weekend with all kinds of yummy treats (Sift Cupcakery and In-N-Out Burger, anyone? Yes, please!)

*I’ve been working on keeping up with 4-5 bouts of walking/running per week. I love this major life change, but it still takes a lot of my focus and attention in order to keep going and not slack off.

So…thirty-one years. That’s a hell of a lot of time. Most of my life. And what do I have to show for it?

So far, on one hand: A whole lot of not-too-much, for which I am insanely grateful and lucky. I’m not sure that I deserve not having much of any complications that my doctors and I are aware of at this point in time, other than recent root planing and laser treatments in all 4 quadrants of my mouth, combined with a grievance/appeal to my dental coverage to get an exception so they would pay the benefit.  Although it could change at any moment, I’ll take it and be thankful.

On the other hand, I have many many minutes, energy, dollars, focus, sweat, tears, concern, annoyance, anger, frustration, and ME to show for 31 years with D. It’s me testing the BG and glancing at the CGM throughout all of the special events above; chugging some juice before the ballet so that I can smile big right back at Ms. Diva while she’s on stage; SWAGing the carb count for the yummy Korean dinner with my BFFs; schooling the dental coverage provider that treatment of gum disease earlier than later is the standard of care for women with diabetes, so even though I didn’t have too terrible of gum disease YET, I needed the treatment; etc. etc. etc. It’s me thinking 24/7, making choices, balancing the best and the worst D-options and trying to come out with some solutions that work best for me, my loved ones, and the life that is ours.

After 31 years with D, I can’t spend 5 minutes with someone without showing them some small evidence of it. That’s okay. It’s how I need it to be. Diabetes is everywhere, a huge part of my identity, and unhealthy for me to ignore or deny.

D shows up all throughout my days and my life; but it is not the meaning of my day–or my life.

(Now, cupcakes, especially from Sift, could very well be the meaning of life! Or at least, the meaning of my 31st diaversary! I got a few to sample in honor of the day. Photos will be taken and posted soon, I promise.)


d-eyeballs

May 25, 2011

There’s really nothing like the fear leading up to an impending opthamologist appointment. About a week before the date, I start having random moments of freakishness where I may start thinking that my eyeballs have stopped working. I wig out when my BG hits anything more than 140, and I convince myself that some Really. Bad. News. is inevitable. I try to remember to breathe, not always successfully.

So last week when I went to my first appointment with new Dr. D-Eyeballs, I was a bit of a mess. Perfectly normal. I asked for a referral from my relatively new Dr. WonderfulEndo, whom I love, so I had hope that Dr. D-Eyeballs would also be wonderful. I was also prepared for massive disappointment and eyeball crisis. It’s just easier to be ready.

In the last 31 years I’ve had opthamologist Dr. Crappy-s who have asked me if I’ve “been good” to my eyes. Ones that berated me for whatever my last HbA1c was. Ones who tried to scare me with horror stories of retinopathy, glaucoma, macular degeneration, and other complications in people with type 1 diabetes. And then there were the ones who didn’t even ask about my type 1. Admittedly, I have a narrow range of acceptable and appropriate statements that opthamologists could say to me without sending me over the edge. But I’ve heard the entire gamut of possibilities, most of them terrible.

Not my new Dr. D-Eyeballs! She’s totally ah-may-zing. She’s the clinical research director for the practice, brilliant, and informed/respectful/totally competent re: type 1 eyes. I’m so thankful when I get the opportunity to see a good medical provider, and she is one.

Cut to the great news from last week’s appointment: No retinopathy, no other d-eye problems. After more than 3 decades with D.

It’s hard for me to believe. I wanted to ask the doctor if she was absolutely sure. Really? Not one little blip? Even under the extra magnification? Are you SURE?! I kept waiting for the “BUT…”

Not this time.


%d bloggers like this: