what brings me down – #DBlogWeek Day 3

May 14, 2014
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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!


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.


10 things I hate about you, Diabetes

May 12, 2011

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10. It’s so damn expensive to manage type 1 diabetes. Between co-pays for  treatments/tests/prescriptions/supplies that is actually covered by insurance, and paying 100% for all of those things that are not covered by my insurance, not to mention anything non-medical that wouldn’t be covered by insurance (like exercise classes, exercise equipment, continuing care education, stress relieving activities, etc…) I’d probably have an extra $10,000/year if you (D) weren’t around. Bleh.

9. You demand too much attention. To “manage” you well, D, I have to think about you all. the. time. I spent a lot of years not thinking about you very much, with BGs and HbA1C levels that showed it. Now I want to manage you well–take good care of myself–and that takes constant attention to you. You’re spoiled and whiny.

8. You’re too much all about “no.” It’s not in my nature to think “No, I can’t have that. No, I can’t do that. No, I can’t eat that.” But that’s what you’re constantly yammering in my ear. And it took far too many years for me to figure out how to work around that, to empower myself to find solutions, ways that I can have things and do things and eat the things I would like to. But the fact remains, a lot of the time, I can’t do what I’d like to do: travel with just a wallet, keys and clothes; go outside and walk/run/hike without an arsenal of d-supplies; eat only when I’m hungry and exactly how much I feel like eating; tear off my clothes and have sex without thinking about the pieces of equipment hanging on my body; and on and on…

7. You hurt us, physically, emotionally, and spiritually. All the time.

6. You never take a break. Supposedly there was a “honeymoon,” although I never experienced it. After almost 31 years, I would think you’d need a vacation. I sure as hell do.

5. You get in the way. I’m always dropping something you require: meter, pump, CGM, various d-garbage, poker, test strips, juice boxes, flash drive w/ my logs on them, carb counting book…good grief. You’re everywhere, all the time.

4. You’ve given me rotten body image, messed with my head not only about the way I look but about ways I can improve how I look without hurting myself. I could have been a woman who automatically thinks good things about her body and the way it looks. In addition to the harmful messages all girls and women get about our bodies, you added on yet another complex level of hatred and harm. Awesome.

3. You completely fucked up my relationship with food for 30 years. I’ve barely started recovering from that, and am finally able to think of food as just what it is–fuel with specific numbers attached to it (carbs/fat/calories), which will influence other numbers in my body (BG, CGM, bolus rates, basal rates, time spent exercising, pounds of weight). Even though I asked for them for many years, none of my endos or primary care docs could refer me to a shrink or counselor who specialized in food and body image issues for girls/women with type 1 diabetes. They didn’t know of any. I finally feel like I’m doing much better, but seriously, no thanks to you.

2. You cause my partner, my 5 y.o. daughter, my parents, my brother, and my good friends a lot of concern, all the time. It’s exhausting for them too. Bad enough you’re always on my case, but why can’t you stop getting in my loved ones faces? You being around reminds me that I’m not like them, that there’s something wrong with my body, that there’s a part of me that will always need help.

1. I can’t control you, no matter how hard I try. Even with much “better” numbers like BG, HbA1c, and weight, you come right out with a whack to my head at any random time. There’s the 32 mg/dl that I don’t even notice that without CGM could do really bad; the 65 mg/dl that feels like I’m spinning right round and can’t realize that the juice in my hand needs to get into my mouth; and the 160 mg/dl that given my new, tighter management, feels like my blood is concrete and I’ve been run over by a truck. Never mind the random 257 mg/dl for no. good. reason. Like, I didn’t eat anything and my pump site is fine and all batteries are working and I’m not that stressed (or wasn’t, before the 257 came along). I do my best every day, and you will not be controlled or submit to me, as you very well should if you had any decent manners at all. Might as well call you Voldemort.

In the immortal and so satisfying words of Kathy Griffin: Suck it, Diabetes.


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