Approval

Conversations a woman with diabetes must face when considering getting pregnant.

OB/Gyn:

“Okay, so when do you plan to get pregnant again?”
“Whenever. My husband and I are prepared now, but any time within the next year would be ideal.”
“No, really, when do you want to get pregnant again?”
“If it happens next month, it’s fine.”
“Ohhhh – I see you have T1 diabetes. And your A1c is not quite where we’d want it to be for preconception purposes.”
“Yes, I’m aware of that. But I’ve been through this already and know what’s expected of me.”
“When did you deliver?”
“41 weeks.”
“Whoooaaa! You must have been really good at what you were doing and knew your stuff to let Dr. [MFM name] let you go that long. But, still, your A1C needs work.”
“Yes, I’m actively working on it (lady, get off my back)”
“Well, are you sure you don’t want another form of birth control/pre-conception counseling? We even admit women with diabetes who don’t have great control of their diabetes, but your’s seems almost there.”
“No, thank you. I know what the expectation is.”
“So when do you want to get pregnant, again? Because since you have diabetes, you are at a greater risk of miscarriage so we want that A1C to be below 6.0.”
“…”

Endocrinologist:

[runs through insurance provided check-list] “…And you are still on [form of birth control]?”
“No.”
“So are you using any sort of birth control right now?”
“I’m tracking my cycles casually, but no, not really.”
[Something incoherent about A1C not being where it should be, greater risk for miscarriage, blah blah blah, I stopped listening.]

Blood Sugars:

“Oh, you don’t have any hormonal birth control in place?? WOOOOOO HOOOOOOO! ALLLLL THE HYPOGLYCEMIA!”

 

Well… they did want my A1C lower.

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A Missing Link

31vxY3W6QTL._SL500_SL160_Well, I’ve waited long enough I guess. I finally broke down and bought a data cable for my OneTouch UltraLink meter so I can sync my readings to Carelink. This comes after the half hour conversation with my CDE who couldn’t, again, pinpoint any patterns to fix based on my (slightly inaccurate) CGM readings alone. Since I test myself around 15-20 times a day, I can’t manually enter all of those readings into my pump… especially during a low. (And I can’t wirelessly sync my meter to my Paradigm, because it’ll want to calibrate.) So she felt that my CGM wasn’t telling her the whole picture. (Obviously!)

So I bit the bullet and dropped $40++ on a glorified USB cable. (I guess there is software to go with it… which is dumb, but the Carelink site still runs on an old version of Java, so I guess it comes with the territory.)

It’s not a perfect solution, because the pump and glucose meters won’t combine results for my CDE to download… but it beats having to drop into my doctor’s office every week.

I also get to pick a week to write down everything I consume and my reasons for giving the insulin dosage that I did.

I also purchased lancets, on my own, for the first time ever. They’ve always been donated to me or I’ve never gone through them enough to purchase, or they came with a freebie meter. But I was only given 10 Delica lancets and I didn’t install my remaining new one properly (i.e. I bent it in half).

Square Peg, Round Hole

Square Peg in a Round Hole

The problem with trying to blend in with non-PWDs is the desire to try and do just as much as any over-worked and stressed, but otherwise healthy average American would attempt. The difference is that I need to manage a pre-existing chronic condition on top of the stressors that present themselves – either by choice or not.

I had my three month follow up with my endocrinologist this morning. This appointment comes after a very rough weekend of some of the highest, sticky blood sugars I’ve seen in a while. Y’know – the ones where additional full corrections don’t budge your 300s, even after a full set change, new vial of insulin, etc. for a number of hours. And when you recover slightly to eat again, you are back to where you started.

Just one week ago, I had been considering buying stock in GlucoLift because I was going through bottles of tablets in a week and consistently dropped at the same times.

Twice my CGM registered “Above 400,” which wasn’t entirely accurate. But still didn’t make me feel any better. And since I was in a competition setting all weekend, my patience was already wearing thin. (A post-comp post-mortum is planned… with photos. Don’t worry.)

My doctor’s “solution?” He suggested putting me on bed-rest for the rest of my life… possibly under sedation so I wouldn’t know I was there. That way, all variables affecting my blood sugars will be the same.

Obviously, a joke. (Well… mostly.)

For the time being, I have a “type 1 diabetes (uncontrolled)” note on my medical record. And he still wonders why I went off my birth control pills because clearly, there is no way I could have a baby right now; even with a 5.9% A1C.

His frustration stems from the fact that he isn’t sure what to do with me; that every time we tweak something in a basal rate or a bolus ratio, something else changes and establishes 15 other problems. Three months ago, I was going to take it easy on the dancing, but ultimately realized that I could still afford to do it. (He threw in the “maybe you should take a dance break” idea and I was ready to throw my iPhone at him.) Surely he doesn’t think that my life can be that consistent… or that ANYONE’S life is that consistent?

Here are things that have, however, changed since I last saw my doctor, three months ago: I now have a full time job; I still have a second part time job; the dance studio went from closing, to possibly being sold, and to new ownership with renovations planned; I’ve had my brain scanned and seen 3 different doctors for the same issue; I upped my physical activity in order to compete last weekend; my grandfather is stressing out my family because of his health; and then everything in between.

So – logically… what would have worked three months ago probably isn’t going to work now. Imagine that. I haven’t read one blog in the DOC that says life is easy and consistent, and therefore their blood glucose control is a reflection of stability. I don’t fit the norm and I’m well aware of that. I’m just so tired of the “we don’t know what to do with you” attitude.

Where’s Your Head At?

Normally when I say that I should get my head examined, I don’t mean it literally. However, over the last few weeks, I’ve started to question whether I really should.

About two weeks ago, I seriously thought I blew out an eardrum or something. My own damn fault. I like music a lot and I like to listen to it loud. (Plus – my car is really noisy, so I have to listen loudly otherwise I can’t hear anything.) I’m around music all the time – at dance clubs, conventions, studio settings and dances, etc. I figured stuffing those earbuds in my ear was just a nail in the coffin.

While I didn’t experience any typical symptoms of a blow out, such as bleeding, loss of hearing, and so forth, I began to notice that the side of my right face was going numb every time listened to anything with a heavy baseline. My right temple would also start throbbing. (I’ll admit – I was listening to Lindsey Stirling a lot.) My right ear was where I wore my ear bud at work so I could listen for phones out the other, so I figured that had something to do with it. I couldn’t listen to my car stereo without intense pressure on the side of my face nor sleep on the ride side of my head.

Maybe it’s just an ear infection gone AWOL.

Changing up my work sitch (to some bright purple headphones) and turning down the stereo didn’t seem to help, so I called the doc for an appointment. He said I “could” have an ear infection but it didn’t look severe, but gave me some ear drops just in case and advised me to take a whole lotta Sudafed to keep the congestion out. (I didn’t have any congestion, but okay.)

4 days of Sudafed and drops and I’m not seeing any improvement. Clearly it’s not an inner ear issue because otherwise the crazy v. waltz routine I’m doing would be much more of a problem than it is currently, balance wise. Plus – I’ve never had an ear infection so bad that it feels like Khan is crushing my skull from one side. (Though – have you seen him in the new movie? I don’t know if I’d mind, but honestly… anyway…)

Sup bad guy... (c) Bad Robot Productions

Sup bad guy… (c) Bad Robot Productions

Back to the doctors I go. This time, I also mention that I’m back to grinding my teeth at night because obviously something is painful enough to do so. We come up with two scenarios:

1 – I have TMJ, which would be causing the soreness in my jaw and grinding of the teeth madness. (Since the appointment, I’ve begrudgingly began wearing my uber sexy night guard to bed each night. As if I needed something else…) However, this doesn’t really explain the Khan-inspired head crushing feeling I get when I head to sleep, listen to loud music, or simply exist in the evening hours.

2 – I have a slightly more serious condition called Trigeminal neuralgia, which is essentially the inflammation of a blood vessel that carries blood to the brain through the face. The condition is more common in women over 50… and possibly one PWD under 35. I’m not really buying into the symptoms though because the characteristic is a shooting sharp pain on the face at any given time. Either after eating, yawning, touching the face, etc. I wouldn’t really characterize my pain as sharp. Although – shooting, maybe. As in, my brains want to shoot outside of my ears from the pressure. However, if it is this, I get shipped off to neurology for further examination.

In the meantime, the doc prescribed an anti-seizure medication to stop the pain from radiating in my skull. I only take it at night and it knocks me out cold. But – I’ve still been waking up with a semi sore jaw and the Khan Pain doesn’t really let up in the evening hours. Mostly, I can make it through my day without incident.

I am supposed to see the doc again on Friday so I can divulge my triggers, which so far have been driving at night and my six year old god-daughter’s dance recital. Today I asked for a CT Scan of my head… y’know, because tumors also cause headaches and shit, so we might as well rule out that possibility.

If it is TMJ, at least I have a dentist appointment next week.

Wish me luck!

Share ALL THE THINGS!!1!

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Monday, 5-13-13: Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?

It’s Blog Week for the DOC. So I’ll be using this week to journal along with multitudes of other PWDs about the same prompts. Consequently, I also leave for vacation on Friday, so I’ll be writing a LOT and scheduling my posts accordingly.

Anyway, let’s start. First thing: I actually have shared my blog with one of my medical team. Well sort of. I passed the link along to my rep from Medtronic while I was getting plugged in to my CGM. I have no idea if she stops by on occasion. I also often talk about my run ins with medical staff here, knowing that yeah, maybe one day it could be found. But when my average hits per day are less that 5, I’m guessing I’m not popping up on Google searches very easily.

But what would they do or say if I was discovered? They probably wouldn’t have time to care, honestly. I’m just one PWD in their busy schedule. I have zero complications, semi decent control, and I exercise. I’m “low risk” as some might say. I generally don’t have a problem explaining my reasons for eating certain foods at certain times, or experimenting with dosing and medicinal needs on my own. I ultimately have to face the consequences later and am educated enough to make the adjustments. They are simply there as a guide.

But gosh, darn it. Maybe I want a slice of pizza every so often. Or want to head out to sushi. Yeah – I know what it does to my post meal BGs and that those spikes are completely unacceptable during pregnancy. However, I’ve been trying to keep this “invincible disease” as invincible as possible, so blending in with my peers and their meal choices are my ultimate goal. Besides, it’s not like pizza is a daily meal.

I will have random spikes that I can’t explain, and I can’t expect you to either. But it always leads back to the question, “well, what DID you do there?” Blame serves me no purpose in this fight.

In Too Deep

 

I moved my sensor on Monday morning because I was sick of the wonky results and wanted to start fresh. (It’s going better by the way.) So there I was, standing in front of my bathroom mirror, with this in front of me.

IMG_0653

It’s pretty daunting for the first time. It’s not a small needle that inserts the sensor wire and the fact that you have to shoot it into yourself at high speed at a 45 degree angle makes me nauseous. But – onward! I need to figure this out.

I load the sensor into the blue gun (because I have no other adequate description for it). This is after I drop the sensor about 3 times trying to remember how to load it into said gun. Sigh. If I didn’t observe the 5 second rule, I’d probably be out a whole box of sensors by now. (Shh…)

Anyway, peeling away the tape replays the Metronic reminder video in my head. “Don’t insert the sensor at any more than a 60 degree angle, for it could cause bleeding and discomfort.” Fine, whatever. I suck at geometry so it’s all going to hell anyway.

The loaded gun replays another image in my head – the one my trainer gave me.

Oh – hey, the sensor kit looks like a hummingbird and you have to make sure the head is loaded properly before inserting.

hummingbird-garden-hover

animals.howstuffworks.com

Well, that’s a nice pleasant image right? A pretty, calm hummingbird that’s about to be jammed into your abdomen? Psh. Honestly, I think it looks like this.

mosquito_65147_7

Michigan.gov

See? Waaaaayyy more accurate.

And for good reason.

Despite my best efforts, my hand jumped slightly upon insertion, thus resulting in more than a 45 degree angle at placement, bleeding and the sensation that I’m being poked whenever I bend in half. (And I’m a dancer… we do things like that. A lot.)

I need more practice.

Empty Net Syndrome

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The hubs and I had a discussion last week over dinner. My A1C is fantastic on paper. I have a CGM getting plugged in tomorrow. I’ve micromanaged my diet so bad that I actually refused to eat just about any carb source while at my family’s get together this weekend that I couldn’t measure out completely. (And walked away from a red velvet cake… unheard of!) With the exception of the strange hormonal lows and highs for this week, which are expected, I’m pretty much staying true to that A1C. This is my last week of this BCP pack.

So why not just pull the goalie and start taking free kicks?

I still have my endo’s email in the back of my mind, stating I really should get my sugars to be consistently >90 for fastings and >130 for post meals. And sometimes… that happens. Other times, not so much. But I also hear my OB’s voice saying that “I’m a gold star patient and so many young women come in to her office already pregnant with 10.1% A1Cs… and still have healthy babies, blah blah blah.”

The whole kiddo thing changes everything, blood sugar wise, so I don’t know why I keep waiting for my endo to give me the proverbial green light if there isn’t much of a risk on paper.

I’m also not really sure how long it’s going to take to get pregnant. My hubs and I are a hot mess in the eyes of an infertility specialist, but we want to try anyway. In fact, I don’t even want to say “we’re trying.” Saying that you are “trying to get pregnant” implies you have expectations that you will get pregnant and when you don’t, you drive yourself mad. I’d like to just say that we’ve pulled the goalie and letting God do his thang.

And to think I get measured for a new ballroom dress on Sunday…

Post 100: Stairs

photo

It’s my 100th post! Thanks for following along. I’ve had other blogs before, but most of them went by the wayside because I just explored everything. Now that I have a focus (and goal), it’s much easier to write. And I’m glad a bunch of you still like to listen to me complain about “being special.”

So why stairs? Couple reasons:

1) Physical: I strained the ligaments in my left knee because I tried to make them twist sideways during a ballroom class. I figured I was doing something odd half way through and got a correction, but apparently asked the question too late. The damage was done. I’m taking a dance break for a bit and hobbling around in a brace. Walking is okay. And then I approach my office, where senior management and the lunch room are both upstairs. Can’t exactly “run upstairs for a quick bite” anymore.

2) Mental: I got an additional job at the studio as a receptionist to try and make up for the lost income. I start training today. I haven’t been a cashier/receptionist in years. I’m sure it’ll all come back, but again, it’s new procedures, phone greetings and systems. (And an exercise in holding my tongue as I try not to offer unwarranted advice on established processes that I may not find efficient.)

3) Diabetes management: Now that I’ve reached my 6.1% A1C, you’d think my docs would be over themselves excited and I could start baby dancing any time now. Nope. When I saw my primary care dr. yesterday, she was quite confused as to why I was still taking my Pills. (Yes – I’m aware it doesn’t work like that, thanks.) I explained my endocrinologist didn’t want me to move forward until I was in better control.

Her response: You have a 128 average – that’s not good enough?? 
Me: …………………………
Her: Oh wait – why was your random glucose test 218 mg/dl?

The problem is that I still spike and drop like a Japanese roller coaster. They probably cancel each other out to a 128 average. To give myself credit though – there have been more instances were I seem to stay around the 120 range safely for extended periods of time. I’m also checking the BGs like I’m already pregnant. (I can whip through a vial of 25 in two days now.) So the highs come down faster, in theory. But my endo still wants me to have pre meal sugars under 100 and post meals under 130. The last six months of diet experimentation haven’t really changed my insulin reaction time. Though – I’m editing my settings daily now because of it. (I better not hear that I’m not ready for the daily changes during pregancy. Ha!)

4) Cyborg status: I get plugged in next Tuesday. I have some research to do and steps to cover before I see the trainer. Finally some much need clarity.

Til then…

Useless Information

Another frustrating day with the med staff… another day without answers.

I knew going into today’s appointment that it wouldn’t be as productive because I was out of town last week, eating Lord knows what. Plus I’ve been sick for the last 4 days, which doesn’t give me much blood sugar street cred. Of course, my endo only downloads the last week and a half of blood sugar readings from my pump.

The reaction I get?

“Wow… your blood sugars are all over the place. Hm. There is no pattern to anything at all. You are just high everywhere. Except for last Saturday. If you could repeat Saturday forever, it’d be all good. Keep working with your CDE to figure it out.”

That’s it?

Seriously?!

“Oh – and don’t have kids yet. And stop eating rice.”

<sigh>

At the rate I’m going, I’m not going to have kids period.

“You’re a Challenge…”

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My endocrinologist highly discouraged trying to get pregnant until at least another A1C round. Then reminded me that the only reason my A1C corrected itself like that was because I ran hypoglycemic for 2 months straight. (With some epic rebounds.)

Since this isn’t a progressive way to maintain control, I met with my CDE again for another pump download. During the analysis of the last two weeks of records (all I really had because it’s a new pump), she sighed after starring at my 6:00 pm lows and said “well, you’re a challenge…”

Well, there you have it. Another CDE is stumped by my glucose control. I added that this is why so many other doctors gave up and just said “Meh, I guess you are okay.” Generally, that had to do with my sugars running higher, but same difference.

That said, no, there isn’t really a rhyme or reason why there are lows plaguing my evenings. Basals have been adjusted, as have carb ratios. I run low regardless of activity or lack thereof. A fatty lunch or a plate of vegetables. The a new problem cropped up – overnight lows.

So I’m stuck with another round of basal tests; this time overnight. And I need to monitor my evenings after another round of adjustments.

I’m really hoping this is all worth it.