« February 2010 | Main | April 2010 »
If this has me laughing like a total goofball after five days of captivity, I fear what might be funny by the second week of this bed rest journey:
And mark my words: When I get home, I'm teaching Siah how to Trololo.
I have fake Factor V Leiden.
Okay, not exactly "fake," but this blood disorder can come in two forms: heterozygous and homozygous. I have Factor V Leiden heterozygous, which means I have one mutated allele and am a higher risk for deep vein thrombosis than your average blogger, but not as high as my homozygous counterparts.
I didn't know this disorder was part of my genetic makeup until about a year and a half ago, after a family member was diagnosed and prompted the rest of us to get screened. And at that time, I didn't have to make many changes, other than switching my birth control pill and popping a baby aspirin before I got on a plane.
But playing host to my little lady friend now, Ms. BSparl, raises risk factors for clotting across the board. Which means that I need to regard Factor V as a viable enemy, instead of "just that thing." Between bed rest (aka "lazy lump of Kerri), pregnancy (aka "growing awesome baby"), and Factor V (aka "blargh"), I'm at an increased risk of throwing a clot, so precautionary measures are being taken.
Namely: compression boots and Heparin shots.
The boots don't bug me. I know some people on Twitter were a little split on their opinions, but I am holding on to about 10lbs of fluid below the knees, so these boots (which blow up and relax in a way that compresses my legs and keeps the circulation at an optimal level) are helping to alleviate some of the swelling. I wore them for a few hours and after taking them off, I saw my ankles again. ANKLES! Hadn't seen those suckers in about two weeks, so that was a treat. Ankles and I had tea and crumpets and celebrated their re-emergence.
What bugs me are the Heparin shots. For several reasons.
First off, I'm not on complete bed rest. I'm on modified bed rest, so that means I'm able to use the bathroom, shower, and wander to the kitchenette for ice water and tea. So the idea of taking an anti-coagulant because of my doctor's requests that I lay low just makes me feel plain lazy. Lazy and I? We don't get along, not even in theory. I'd much rather do a little exercising every day instead of taking these injections, but I do understand that the priority is keeping my blood pressure down, watching the swelling, and - oh yeah - resting.
Secondly, the concept of Heparin freaks me out because if my situation progresses quickly and my daughter needs to be delivered without much notice, this whole mess goes from "scheduled c-section" to "actual surgery," where I'll need to be put under and wouldn't be awake for the birth of the most important person I'll ever know. In that situation, Chris wouldn't be able to be in the delivery room and I wouldn't see BSparl until I came around from the anesthesia. That does NOT sound like a fun plan to me. Granted, Heparin takes 4 - 6 hours to get out of my system, so this kind of emergency situation is unlikely (especially considering how often they monitor me here), but still, I'm uneasy at the thought.
And thirdly, the shots suck. Royally. Even though I've asked to use an insulin syringe and administer the injections myself, the pain is sharp, and the bruising is intense. It looks like someone stuck violet petals all over the backs of my arms and on my thighs, but that's making it sound too pretty. Actually, it looks more like the nurses come in here at night, grab me violently by the arms, and shake me around until I yell "Uncle!" (Or, more likely, "Nurse!) Here, have a look:
Ghastly. And other than the look of it, it's hard to find real estate to inject the Heparin into, seeing as how my lower back is claimed by the pump and my legs have dibs called by the Dexcom.
I'm having blood drawn today to check the levels of anti-coagulant in my body, which will help my medical team see if this is the right course of treatment for me to actually be on. I think this just gets chalked up to "another hurdle during a high risk pregnancy," and while I'm bitching about it now, the payoff (read: cuddling with my kiddo) far outweighs any arm bruises or discomfort.
By virtue of the name itself - "bed rest" - you'd think I'd be sleeping a ton and feel all squishy and relaxed here at the hospital. Like a spa, only with crappy food.
Oh hell no. Because of the nature of pre-eclampsia, and having a high risk pregnancy to begin with, I'm under constant supervision. This is a good thing, because the doctors and nurses here absolutely know how to handle any circumstance that crops up, but it's a tough thing sometimes because the "rest" part of this is hard to achieve when the door is opening and people need vitals all day long.
My day begins around 5:45 am, when the resident on call pops in and checks up on my basal rates, blood sugars, and overall puffiness. Her questions are usually the same - "Any bleeding? Spots in your vision? Pain in your upper right side?" I'm happy that I can answer "No," to these questions. And then she leaves.
My nurse comes in at about 7:00 am to review blood sugars, liquid intake, urine output, takes my blood pressure and temperature, and gets the heartbeat on the baby (which is a great way to wake up in the morning, to the sound of my daughter's galloping heartbeat). She leaves, I test my blood sugar, and try to go back to sleep.
But at 8 am, the Joslin team comes in and does a review of my blood sugars, basal rates, and everything else diabetes-related. (Basically, I review the same information about three times before 8:30 in the morning.) We review and/or make adjustments as needed, and their crew leaves in a flurry of labcoats.
(At this point, I order breakfast from the kitchen and hope it doesn't arrive while I'm in the shower, because nothing is more awkward than "Room service!" trilling in from the door while I'm making attempts to wash my hair with these enormously swollen hands.)
10 am brings the nurse back to my room with a dose of Heparin (fun shit) and my Labetalol pill. I've asked to administer the Heparin myself, because there's something about the way that the nurses give the injection that makes my skin bruise ferociously. (Pictures to come soon of those messy bruises.) So instead of using the normal "horse needles," they're letting me use insulin needles and give the shots myself, which helps a lot in managing the bruising and pain.
After the medications, they hook me and BSparl up to a fetal monitor, which keeps track of her heart beat, her movements, and any contractions in my uterus. She's been dubbed "busiest baby on the floor" because she's a very active little biscuit, and even though I'm attached to the monitor for 40 minutes, it's comforting to hear the sound of her heartbeat filling the room.
And then it's like lunch time(ish), and I make futile attempts to catch up on emails, check in with work stuff, and read some blogs. My hands are beyond swollen, so computer work is very limited and after about 30 minutes of typing, the pain is pretty intense. (And from what I've been told, after I deliver the baby, I'll swell up even more for another day or two before it starts to subside. This kid better love the hell out of my Cookie Monster mitts and Fred Flintstone feet. ;) )
The afternoon seems to vary, but always includes input/output tracking for my liquids, at least a few hours laying on my left side to alleviate the stress on my kidneys, and my watching of an episode of Law & Order: SVU. (Best. Show. EVER.) And a vitals check from the nurse staff. (Yesterday had a bonus visit to the radiology department, where I had an ultrasound and saw my daughter's chubby cheeks. I love her.)
Evening includes dinner. And usually a few phone calls. And another round on the fetal monitor. Sometimes I make attempts at the computer again, but it all depends on what my hands are agreeing to follow through on.
10 pm has the nurses visiting again with my prenatal vitamins (Note: They let me keep bottles of insulin in my room but they confiscate my prenatal vitamins? Not sure if they think I'm hooked on DHA or something.) and the second dose of Labetalol. Vitals are taken again.
Midnight brings the second dose of Heparin, and another check of the baby's heartbeat and my blood pressure. After the nurses leave, I try and collapse into bed and fall asleep.
Until 3:30 am, when the nurses return for another heartbeat check, blood pressure check, and blood sugar check. Check, check, check ...
Bored yet? Well-rested, are ya? This is the day in-day out routine for the next two weeks, and I'm snoooooring at the very thought (yet unable to really sleep because I have nurses visiting every few hours). But BSparl and I are being watched so carefully and so closely that if any issues crop up, they won't take anyone by surprise. That helps keep she and I safest, I think.
But for now, it's boooooooring. Thank goodness for my parents, who have come by with flowers, entertaining pictures colored by my nephew, and magazines. Thank goodness for my mother-in-law, who calls daily to check in and reminds me that this is only temporary. Thank goodness for my best friends, who call often and keep me in the loop on what the hell is going on in the "real world." Thank goodness for the Internet, which is letting me connect with you guys and Facebook crap and all the other nerdy connection points that I'm relying on when I'm the only person in my hospital room.
And thank goodness for Chris, who is shuffling back and forth between our house and the hospital, working hard to prepare the nursery (we didn't have much notice on this visit, so things are a little bit in disarray for Ms. BSparl), maintain our home, and oh yeah, work? When he comes here and sleeps over, just having him in the room makes everything easier. (I'm just waiting for one of the nurses to accidentally try and get his blood pressure.)
... it doesn't hurt that as soon as BSparl hears his voice, she gets all bugged out and wants to dance. She loves her daddy. I think she likes me okay, too. I'm hopeful that the next two weeks go by as smoothly as possible, keeping her safe and happy in there, and eventually bringing her out to us.
So we can hold her and dance with her on the outside.
All day Wednesday, I had the pleasure of collecting my urine in a "hat" for 24 hours and then sending it off to my doctors for protein analysis. Since I was ordered to remain on modified bed rest until further notice, Chris ran the collection up to the hospital for analysis at noon.
Where they lost it. Twice. And the test wasn't actually performed on the sample until almost 10 pm that night.
Which lead to the mad scramble on Friday morning after my OB called, saying that the protein content of my 24 collection was too high for comfort, and they wanted to admit me to the hospital until the baby was born.
I'm not the most calm, relaxed person. (WHAT DO YOU MEAN, YOU PICKED UP ON THAT?) I get nervous about things, I have a hard time adjusting to change, and I have a lot of trouble letting people make the full decisions regarding my health care. So being told I needed to pack a bag for a time frame ranging from 1 - 3 weeks, and that upon my return home, I'd have my daughter with me ON THE OUTSIDE, I melted down just a little, teeny bit.
But it's not about me, or what I need. This is about my kiddo, and keeping her safe and sound. So the bags were packed (where I put in jeans and "real shirts" but then realized I'll be on bed rest, so replaced those items quickly with sweatpants, sports bras, and t-shirts) and Chris and I headed off to the hospital.
"See you in a little bit, Siah. But when I come home, you won't be the queen bee anymore. Ms. BSparl will outrank you by an awful lot."
Siah looked at me, slightly crossed-eyed, and then ran off to chase a speck of dust that scampered by.
When we arrived, the doctors checked my blood pressure (was a little elevated - 140/84, but no one was freaking out) and labs were drawn to assess the levels of creatinine in my blood. The medical team checked on BSparl, too, with a full ultrasound and non-stress test to assess if and how the pre-eclampsia was affecting her. Thankfully, she's having her own personal dance party in there and seems to be just fine, despite all of my symptoms.
So we're in for the long haul now, which just got a bit shorter. I'm currently 34 weeks, 4 days along in this pregnancy, and the hospital goal is to make it to the 36 week mark. If anything becomes unstable between now and then, BSparl will arrive on an earlier flight. :) But I'm being watched carefully, and so is she, so nothing will be sneaking up on us while we're under the careful eye of the team here.
My blood pressure is being checked every few hours, my liquid intake/urine output is being tracked to keep tabs on my kidney function, and we have ultrasounds and blood work scheduled every two days. I'm on heparin shots three times a day, thanks to this bed rest/Factor V heterozygous combination (more on that later). And the nurses are keeping my blood sugar logbooks for me, which means this is the most thorough logbooking I've ever done in my entire life. (Also, my numbers haven't been over 120 mg/dl in three days, which means I've scared my diabetes into complete compliance. Testing every hour probably helps a bit, too. Panicking slightly doesn't appear to hurt, either.)
I'll be a little scarce at times online, thanks to the swelling in my hands that keeps me from being able to work comfortably, and due to the barrage of docs and nurses that are checking in throughout the day and night. (I have upwards of 10 doctor or nurse visits throughout the course of the day - makes for a very BSparl-focused 24 hours.)
Chris and I are so thankful for the support and well wishes we've received from you guys - it makes a world of difference, and I know BSparl is benefiting from these good vibes. (And I am too - thank you!!)
Over the weekend, my family (special thanks to my mom, who worked so hard!!) threw Chris and I a baby shower - a beautiful baby shower. Our families and friends came together to celebrate this baby-on-the-way, and I don't really have proper words to describe how nice it felt to welcome this baby into our family.
Thankfully, I do have a few pictures. :)
My college roommates and I (and the BSparl baby bump, front and center.)
Everything we received was soooo tiny and complete cute overload. My face basically looked bewildered in every photo during the gift opening.
These bibs all had mantras, but this one - "Single" - made me laugh out loud. It also made me fast-forward mentally to when my little girl might not be single, and then my brain shut off.
Our baby shower favors were these delicious chocolate treats in the shapes of baby bottles and pacifiers. Fortunately, they are delicious and lovely. (Unfortunately, we ended up with several favors at our house, and I'm trying like hell to resist eating them.)
And now we have a house full of baby gifts from our very generous friends and family, and hopefully a few more weeks to go before we actually are tucking a baby in at night. Thanks for all the well wishes, you guys. It means a lot to us!!
Dear Baby,
I know you can hear me in there. You are about 5 lbs of baby girl and when I sing to you while we're driving, you move around from side to side. (I hope you aren't trying to escape the sound of my tuneless voice. In my mind, and in my car, alone, with the windows rolled up, I'm fooled into thinking I sound pretty decent.)
So make sure you're listening now, because I need you and I to work together pretty closely for the next few weeks.
Yesterday, at the doctor's office, we were there for a routine visit but my damned blood pressure was a little spikey, coming in at 140/90. Much higher than what we see at home, which is closer to 125/73. (White coat syndrome, anyone?)
Our OB reacted immediately. She sent the nurse for my urine cultures and confirmed that protein was spilling into my urine. They took three more blood pressure readings, all which came back in the 130-140ish range. And then they did a quick measurement of you and your heartbeat.
"I know you have an ATU appointment today, but I want to send you over to labor and delivery for monitoring. Basically, I think you're showing signs of pre-eclampsia. I do not want to take any chances."
"Okay, what does that mean in terms of what happens next?" The words "labor and delivery" and in my vocabulary, but I wasn't planning on using them until ... oh, say the end of April.
"I want them to hook you and baby up to monitors and keep an eye on both of you for a few hours. If your blood pressure continues to climb, or if the baby shows any sign of distress, we may need to have her come today."
Baby, you feel enormous sometimes, all rolling around in there. I can feel your legs up about four inches past my belly button, and I can feel the swell of your pretty head closer to my pelvis. You take up a lot of room in this belly now, and when I'm trying to get up from the couch at times and need to roll a little on my side to launch myself upwards, I laugh because it's just ridiculous how big my pregnant belly has become.
But when the doctor said that you may need to come early - 33 1/2 weeks along kind of early - depending on the stress on both of our bodies? I couldn't help but picture just how small you are. We have five weeks left. I want you to stay put as long as possible.
"Today? That's like instant panic. Today? So should I call Chris?"
"Yes. Once we have you over at labor and delivery, and they monitor you, we'll be able to determine if you can go home today and tackle bed rest for a few weeks, or if we should keep you overnight and monitor you both, or if you should be admitted for a few days, or, and this hopefully is NOT the case - that she's coming today via c-section instead of in a few weeks."
Lots of information to digest. I called your dad from the foyer as I waited for the elevator and gave him the details. "Basically, she is probably not coming today. But she might be. And I'm freaking out a little bit. I think it's okay for you to wait to come up, just until I know what their plan is. They're not going to make any fast decisions - more ruling stuff out and ... honestly? I have no idea what's going on."
Little girl, I was confused. But after spending a few hours having blood drawn, blood pressures taken, and non-stress tests performed, things were looking a bit better. They did an ultrasound of you and you look strong and healthy (and round in the head, you cute little mess). They also scanned the placenta for any signs of detachment or calcification, and took measurements of the fluid level in your uterine apartment. Everything was looking good, except for the protein spill and the elevated blood pressure.
The doctors came to evaluate me. Us. And their main concern was the protein.
"We'd like you to do a 24 urine collection and stay overnight."
"Stay overnight for monitoring purposes? Are there concerns for me or the baby? Or are you just really eager for my pee?" It had been a few hours, I was hungry, and my hands were sore from texting Chris and keeping him updated on our situation.
"At this point, just the ... um, we just want your pee." (Baby, I love making doctors repeat back the odd things I've blurted out. Those awkward moments from them almost make the initial awkward moments from me worth it. Wait until we're at the pediatrician. I'm sure I'll embarrass you endlessly.)
"So can I do the collection at home instead of being admitted? And bring it back after 24 hours? Or is that risky in ANY way? I don't want to tell you guys what to do, I just don't want to hang out in the hospital purely for urinating purposes." (And also, I didn't have any back up pump supplies or clean clothes or anything to even read, so the idea of being trapped in the hospital for 24 hours, purely to offer up constant urine samples, made my head spin.)
"No, home is fine. So long as you can bring the samples back after 24 hours. And we'll need you on modified bed rest until further notice, because if pre-eclampsia progresses, we don't want any problems. You'll need to keep an eye on your blood pressure, and any headaches that might crop up, and if you have any pain in your upper right quadrant, you need to call your doctor immediately."
"Got it."
After discussing a few more items, they worked through my discharge paperwork and handed me two, enormous orange jugs for "collecting." "Here - you pee in this hat and then pour it into th
e jug."
"Excuse me? Into a hat??"
"Not an actual hat - this plastic thing. It's called a hat." The nurse tried to control the grin tugging at the corners of her mouth. They must have thought I was completely unscrewed.
"Ah, okay. I can do that."
And off we went, toddling back to the parking garage and heading home to your dad. Baby girl, we're almost there. If you can hang tight and stay strong for a few more weeks, that would be the best for both of us. It seems like we're not sure how soon you're coming these days, so it's up to you and I to try and hold out as long as we can, in good health. Everyone at the hospital is keeping a very close eye on us, and we're under the best care possible, so it's up to you and me for a little bit. We need to stay calm. And hydrated. And keep tabs on blood pressure. And stay calm. Did I mention calm? Calm would be good.
I love you so, so much. And when they tell me that "she looks beautiful" and "healthy" and "strong," I feel so proud of what you and I have done, and how far we have come. Daddy and I will take the best care we can of you, and we're almost ready to have you as part of our family. Almost. You just need to stay put and keep growing for a few more weeks, so when you arrive, you are as strong as you can be.
Be good. (And if you see my pancreas, give it a kick, would you? Maybe you can jump start that lazy thing.)
Love,
Mommy
Today is a BSparl day, and I'll be at the doctor's office for the majority of the day, having blood work, attempting to depuff Le Puff, and spying on my baby girl as she goes her moving and shaking in there. I wanted to revisit a post from almost three years ago about the delicate balance between advocacy and pity.
I love me some advocacy, but pity? No thanks. I'm all set with that.
* * *
I see a lot of marketing materials from various diabetes organizations, publications, and websites. The messages are varied, to say the very least. They're all are asking for your support, most often financially, to either raise awareness of diabetes or march towards a cure. That much is definite.
The variances are to be expected, though. This disease doesn't follow many rules.
The curious thing to me, after having seen hundreds of these materials, is how different companies chose to portray diabetes. Some companies show the 53 year old man sitting next to a dialysis machine. Others show a small child, running in a playground, smiling despite their diagnosis. A crying child being injected in the arm with a syringe, clutching their teddy bear? A smiling, healthy-looking person testing their blood sugar? Or a sullen, sad person taking their medications as a tear of hopelessness runs down their face?
Mixed messages ranging from "I can do anything!" to "I can't do a damn thing." Ah, the many faces of diabetes.
I can understand the "pity ploy," because if you show the face of a small, hopeful child with their whole life of promise ahead of them, it's a bit easier to ask for money. "How can you sit there and not help the children," sort of endeavor. From what I've seen, people don't feel as pressed to donate towards a cause that shows images of people living healthy lives with diabetes. It's the proverbial pain and suffering that draws people in and tugs at their wallet.
It's just a strange thought that portraying myself - ourselves- as healthy people may actually keep people from supporting our cause. "She doesn't need our help. See, she's just fine with her insulin pump and exercise regimen and doctors. She's fine."
What these marketing documents can't convey is the constant thread of "make sure you" that runs through my mind.
Make sure you bring your meter in case you need to test. Make sure you have juice and insulin, for either a high or a low blood sugar flip. Make sure you go to the doctor to have your A1c taken to keep you on track. Make sure you have a job with good medical insurance so you can afford all the supplies you need. Make sure you have friends and family who can support you on your journey with this disease. Make sure you don't overindulge/undereat/over-compensate/under-estimate.
Make sure.
I'm confused at times, because while I'm young and healthy and in control now, I wonder what my future will hold for me. I hope I'll always be healthy. But I'm never sure. I can't really "make sure." I can just keep trying. And hoping.
Can marketing materials tap that uncertainty? Can they show the efforts we put forth to achieve good health? What kind of picture or tag line or template would they use to show our lives?
The health care reform bill "doesn't fix everything that's wrong with our health care system, but it moves us decisively forward," said the President yesterday. Insurance companies will be under government regulations, coverage can't be denied based on pre-existing conditions, and the bill should be signed as early as this Tuesday.Wait ... coverage can't be denied based on pre-existing conditions?
According to this New York Times editorial, "The biggest difference for Americans who have employer-based insurance is the security of knowing that, starting in 2014, if they lose their job and have to buy their own policy, they cannot be denied coverage or charged high rates because of pre-existing conditions. Before then, the chronically ill could gain temporary coverage from enhanced high-risk pools and chronically ill children are guaranteed coverage."
I've always wanted to take that leap and run my own business. I enjoy working in new media and health care, I like working hard, but what kept me from making a bold move was pure and unadulterated fear. It was the same fear that caused me to immediately grab my diploma after college and start working at a crappy job two days after graduation, simply so I wouldn't lose my medical insurance coverage. (I was a bank teller. I have no math skill to speak of. Tell me how that career choice was safe for anyone.) As a type 1 diabetic, medical coverage takes precedence over a paycheck, seeing as how I have never had the option of purchasing a private policy. (Something about that whole "taking insulin" thing makes insurers squeamish. What, like taking injections ever kept me from becoming a productive member of the work force? Yet I'm allowed to pay my taxes.)
Sometimes, it takes a bold move to force a bolder one. I left my job last October in pursuit of one thing: a healthy pregnancy. The fear that once held me back was replaced by the overwhelming desire for a healthy pregnancy, and Chris and I moved forward without hesitation. But, of course, we had to make sure there wasn't a lapse in my insurance coverage, and with pregnancy being considered another pre-existing condition, I remained insured by COBRA. Thankfully, once BSparl is born, we have another plan in place. But the details of my insurance coverage aren't the focus here. Nor will they be.
The point is now there are options for people with diabetes. Or at least that's what I'm hoping. I've been pouring through the newswires and seeing, over and over again, how pre-existing conditions can't be denied. Reuters reports that "Uninsured adults with a pre-existing conditions will be able to obtain health coverage through a new program that will expire once new insurance exchanges begin operating in 2014." This is in addition to insurers being "barred from excluding children for coverage because of pre-existing conditions." And I remember when I was a kid and my parents dealt with that very issue after my diabetes diagnosis.)
Newsweek sheds a little more light on this, stating, "Insurers who offer plans on an insurance exchange will be prohibited from rejecting customers with preexisting conditions or charging them higher rates. But the exchanges won't be mandatory until 2014. In the meantime, people with preexisting conditions will be permitted to enter a 'high-risk pool,' which offers caps on premiums and out-of-pocket spending. Still, there's a catch: only people who have been without coverage for six months are eligible. The rule is designed to stop people from arbitrarily switching from their private insurance plans to the cheaper—but taxpayer subsidized—pools. But it means that people who lose their jobs can remain uninsured for a full six months."
I don't know enough about the health care reform bill to speak eloquently about the details. I am only exposed to what the media shows me, and what my research procures, and what pages of the bill I'm actually able to pour through and understand. And I know that talking politics on the blog (just like talking religion) can be a very tough topic, because PWD have so many varying opinions and stances on these issues. But I'm a person with diabetes. And I'm hopeful. I'm hopeful that this could be the beginning of diabetes not dictating my insurability. I'm hopeful that people with diabetes will have the option to work in fields that inspire them, not just ones that insure them. Diabetes has a hold on so much of what we do throughout the day and so many of our choices, and I'm hopeful that the passage of this bill will give back some options.
(Just a quick note: I posted something on Facebook and the comments are impassioned, but respectful. So far. :) If you are going to leave a comment on this post, you definitely don't have to agree with me or anyone else, just please be respectful. Or I'll send Siah after you.)
I've been diabetic for over twenty years, and when I was diagnosed in 1986, my first meter was an Accu-Chek (this post has some pictures of these old diabetes meters). The strips were large, absorptive pads that soaked up the blood drop and changed color after I wiped the blood away with a clean cotton ball. The color strips were either stuck into the machine and read after 120 seconds, or the color pads were compared against the guide on the side of the strip bottles.
Comparing colors? Total guessing game. But waaaaay back in 1986, glucose meters were FDA "OK'd" to be off by a margin of 20%. That means (if my math is right, and don't trust me that it is because I'm still a Morrone) if my meter said "100 mg/dl," I could have been anywhere between 80 mg/dl - 120 mg/dl. For me, particularly at this stage in my life, that's "almost low" or "almost needing a correction bolus."
Wouldn't you think we've come such a long way since then?
Oh, but we haven't.
The standards for glucose meter accuracy haven't been tightened up since before my diagnosis. Sure, meters have gotten fancier and faster and they come in a variety of brands, colors, and sizes, but they aren't more accurate than the ones I used when my fingers were being lanced for the very first times. (And this was proven to me when I was at the ER the other night - the nurse busted out a Lifescan meter that was older than dirt to test my blood sugar. It was their approved hospital meter, and the results were the same on that meter as they were on my current Lifescan meter.)
Scott wrote a remarkable post about the issue of meter accuracy yesterday (click here to read it) and Kelly also hit this nail squarely on the same day (her post can be found here). And Bennet questions what accuracy is in the first place. And after reading their posts, I'm inclined to comment as well.
I base EVERYTHING I do, diabetes-wise, on the information provided by my glucose meter. I base my insulin-to-carb rations on those results, my basal rates, my food intake, and my exercise decisions on those numbers. I calibrate my Dexcom using those numbers. EVERYTHING. Hell, maybe not even limited to just diabetes stuff. I won't get into my car and put the key in the ignition if my meter shows a result that's too low, and I am reluctant to eat more than a salad at dinner if my glucose result is way too high.
So when the numbers being provided by my meter aren't as accurate as my dedication and determination deserve? I get a little fired up.
Over the course of my diabetes life, I know my meter has thrown some wonky results. I'd have to ask my mom if she ever saw any crazy results, but I know since monitoring my own disease, I've seen plenty. Over the last fifteen years or so, I've used meters from Accu-Chek, Agamatrix, and Lifescan, and in the last few years, exclusively from Lifescan, due to what my insurance covered. And for the most part, I never second-checked any of my results, unless I really felt that they were "off" in accordance with my physical symptoms.
But since using the Dexcom, I've been double, and sometimes triple, checking results. Take, for example, the other day when I received the following results:
Incident One:
3:56 pm 86 mg/dl
3:57 pm 159 mg/dl
3:58 pm 164 mg/dl
The only reason I double-checked that first result was because the Dexcom had me at 170 mg/dl, not 80-ish. I know the CGM isn't for dosing or treating, but it's pretty friendly for trending and "gisting," so the discrepancy caused me to double-check the result. And, for the record, my hands were freshly washed with soap, dried, and clean. The lancet was new (I know - dumb luck on that one). And I wasn't eating or exercising at the time. So what gives? 86 and 164 are very different numbers. That's waaaaay more than 20%. Even I can do that math.
Twice.
Incident Two:
5:51 pm 110 mg/dl
5:51 pm 203 mg/dl
5:51 pm 229 mg/dl
This is not the first time this sort of thing has happened - I've blogged about it before and have linked to several of those posts throughout this post. But now, things are different. I'm in a constant state of blood sugar panic these days, worrying that not only are these results (accurate or otherwise) affecting my health, but how are they impacting my currently-being-built baby? Would I be double-checking these results if I wasn't pregnant? If I wasn't worried about BSparl, would I be willing to use three test strips (aka almost $3.00) per glucose check per sitting?
The FDA recently had meetings about this very topic: glucose meter accuracy. (CWD mom Ellen Ullman actually spoke at this meeting, representing the diabetes community. Go Ellen!!) And Scott had an excellent synopsis of one of the most disturbing statements made at this meeting:
Not good enough for me. I'm expected to maintain an A1C of 6.5% (or less) throughout my pregnancy. Diabetes complications, no matter how hard we work to advocate against the guilt, are still ascribed to the patient, not the disease.
I'm working very hard to take care of my diabetes, and to have my efforts impacted by industry apathy isn't right.
To echo Scott's call to action, I'm urging us all, as members of this influential diabetes community, to visit www.regulations.gov and search for Docket No. FDA-2009-N-0604 to leave your comments. Tell the FDA that 20% isn't good enough, and we deserve every chance to take the best care of ourselves.
I don't care if my meter comes in 15 different colors and can juggle knives - it needs to be ACCURATE.
Raise your voice.
If I'm looking for a laugh, I can head over to my Statcounter page and learn just how people are stumbling upon this here diabetes blog. The top referrers are usually diabetes-related terms, and sometimes something involving my name, but other times - well, it just gets plain goofy.
Here are some of the latest results from the SEO leaderboard.
quippy phrase to sell adirondack chair - Honestly, this one is new. I don't think I've ever even used the word "adirondack" on my blog before. "Quippy?" Yessir, I've used that word. In my opinion, a quippy phrase to sell an adirondack chair would be "Ah, the wrong deck? Get an adirondack!" (It's good that I'm not in marketing.)
what is type 1 diabetes? tell me the truth - Okay, my child. Type 1 diabetes is a small, furry bird that lives solely on a diet of Cocoa Puffs and reality television. It's most often found in temperate climates, and is actually the only mammal that is born knowing how to ride a unicycle. ... Oh, tell you the truth? Fine. Type 1 diabetes is a disease that causes the body to no longer produce the hormone, insulin.
soxuntilme - Sounds like a Dr. Suess spoof.
Diabetes 365 project - YAY! I love seeing the visibility of the Diabetes 365 project grow and grow.diabetes type 1 - when to go back to normal life again? - Define "normal." Diabetes is a new normal, my lovely search term searchers. If you've found SUM in hopes of finding "normal," you are out of luck. But happy? Score!!
oh no - Oh, YES!
six until me AND bret michaels - Were you looking for this post? Or, perhaps, this?
Working from my home office definitely is making for a more comfortable last trimester. I'm able to put my feet up constantly (to ward off Le Puff), I can test my blood sugar and eat randomly at whatever schedule BSparl dictates that day, and I can (thank GOD) wear sweatpants more often than maternity clothes, saving me a ton of money on trying to find outfits that are appropriate for my basketball belly.
Only problem is ... well, my coworkers.
They're freaking animals.
Prussia takes meetings constantly, and is always on conference calls. (Oh, it must be Wednesday. She's wearing her Wednesday tie.)
(I apologize for the above post. This is what happens when Chris and I end up at Target, find ourselves staring aimlessly down the aisle with 50,000 choices in baby diapers, and end up buying what is tagged on our receipt as "cat apparel.")
On Saturday night, I was stuck. Completely stuck at 260 mg/dl and not budging, despite stacking boluses and not even thinking about carbs. (Because if I even thought about carbs, my blood sugar would magically rise. It's an unproven fact.) And I was very, very frustrated. From about 9 pm - 1 am, I battled with boluses, wondering why they weren't working. Like a moron (Morrone?), I didn't just pull out the infusion set, but instead tried every other trick in the book.
Until I realized it just wasn't working.
So I pulled the set at about 2 in the morning, restarted a new site, and tried to get some sleep. But by this time, a roaring headache had set in. I'm not sure if it was caused by the high, the frustration, or dumb luck, but my dome was throbbing all night long.
I woke up with the headache. I don't get headaches often at all, so having one was a big deal. And "headache" was one of the main symptoms my doctors at Joslin told me to keep an eye out for, as far as signs of preeclampsia go. Fantastic.
So, being the genius that I am, I decided to sleep in on Sunday, stay very hydrated, and then go to a hockey game in Providence with my sister-in-law and her husband STEVE. (Hocky game when trying to ward off a headache? WTF was I thinking?) The game was great, I had a chance to hang out with my always-entertaining and adorable niece M, but being surrounded by a bunch of happy, screaming kids and adults cheering on the P-Bruins made for an epic crescendo of said headache.
Chris and I ducked out a little bit early, and on the way back to our place, I called the doctor on-call at Joslin to give them the run-down.
"I have had this headache for about 12 hours. But it came on after a bad night with a stubborn high blood sugar, so it's hard for me to say what's caused what."
The medical team recommended that I go home, take my blood pressure, drink water, take Tylenol, and have a cup of coffee to help make a dent in this headache. They said they would call me back in an hour and a half to check on my progress.
"Seriously, I'm not concerned. Dude, go to the movies with your friends. I'll call you if, for some reason, they decide they want me to go to the emergency room or something. But I seriously doubt they'll want me to," I said to Chris. He took some convincing, but I felt okay - just a headache. I had the very same discussion with NBF over the phone as I waited for Joslin to call back. "No, they are just going to tell me to go to bed or something. No worries, my friend."
Ha, ha. And ha. Joslin called back, I confirmed that the headache wasn't gone yet, and the doctor recommended that I head to the emergency room so that the baby could be monitored and I could have labwork run. "Preeclampsia can come on quickly, and we aren't taking any chances," they said.
"Chris - just kidding. Joslin wants me to to go to the ER." I texted him.
"I'm leaving right now." He responded.
So we spent four hours in the emergency room on Sunday night, checking on our little biscuit of a BSparl. They drew labwork on me to screen for preeclampsia (no indicators, thankfully), checked my urine (no protein, - also a good sign), monitored my blood pressure (which was fine), and hooked my abdomen up to a few sensors to keep track of baby girl.
"Every time she moves, press this button so we can track how active she is in there. When you press the button, a green line will show up on the graph up there, see?" The nurse pointed at the computer screen, where the baby's heartbeat was being graphed.
"No problem." (BSparl must have loved all the attention, and maybe she liked listening to the episode of House that was on in the hospital room, because she filled that graph with green lines for 45 minutes as a result of her dancing. Busy little baby bee.)
After a few hours, the ER doctors talked with my team at Joslin and everyone determined that I was okay to go home. The baby wasn't at risk, I seemed to be okay, and the only issue was this lingering, nagging headache. They prescribed extra strength Tylenol (bye bye, Dexcom for a few days) and this other medication that is intended to treat nausea in pregnancy but has been used to manage headaches, as well. Hydration, sleep, relaxing, and medication were my recommended course of treatment.
What's the point of this post? I have no idea. I'm just rambling these days. :) It seems like everything is a pushed panic button when it comes to high-risk pregnancies (any pregnancy, I'd guess, but I only know my own so intimately), but I do have a kick-ass team when it comes to managing potential emergencies on a Sunday evening. The headache still hangs on, but the medication is making it manageable, and I'm hoping it's totally gone by the time I head to Rhode Island for my baby shower on Sunday.
Counting down the weeks until BSparl arrives and makes her little mark in this world. She comes with a how-to manual, right? ... Where's that headache medication ... ?
Part One:
The people at Joslin are eventually going to lock the doors when they see me coming. Because last Friday, at my latest round of BSparl appointments, I burst into tears a few dozen times.
I am not a crier. I'm very emotional, but can usually keep my emotions well-contained until I'm back in the safety of my friends or family, and then I let loose. But with just over six weeks until the baby arrives, I'm the definition of a basketcase.
Arriving at Joslin, I was on time. For once. And sporting hands clad in wrist braces and ankles sheathed in compression stockings. Again, hot momma. ;) This puffiness was my top concern that I wanted to talk with my obstetrician about, so it was good that I was at least exhibiting the signs, so she could see Le Puff first hand.
During the first appointment, Dr. T lubed up my belly and we took a peek at Ms. BSparl.
"Wow, she's got a good head on her!"
"Yeah, the Morrone kids, all of 'em, were born with these tremendously round, sunshine heads. We're like little moons orbiting around. My niece and nephew were absolutely adorable, and they had the same beautiful, round heads."
"Well your daughter appears to have that head. She's perfectly round!" Dr. T took some measurements and determined that BSparl was about 4 lbs, 11 oz at this stage. "She's on track to be about 8 lbs, 5 oz, it seems. She's in the 58th percentile, and I'm very happy with that."
"Is she a little bigger because of my diabetes?" (This question prompted the first set of tears - damn, I'm an emotional mess these days.)
"No. If that was the case, her abdomen would be out of proportion, and her body is in perfect proportion. She's just a little tiny bit bigger than average, but her size is not diabetes-related. Your blood sugar control has been great. How big was your husband when he was born?"
"He was 8 lbs, 8 oz. And I was 7 lbs, 8 oz, I think."
"Right. So your daughter is on track to land between the two of you. It's completely normal."
And finally, finally, I saw my daughter's face on the ultrasound machine. In previous checkups, BSparl had been spine up, face in, so her face was obscured by the placenta and I never had a good look at her. A few other times, she had her hands up in front of her face, only letting us see a little bit of her. But this time, she was pretty visible, and I could see her chubby cheeks, her button nose, and her father's lips.
She has a face I can't wait to smooch.
After the ultrasound, Dr. T and I talked about her main concern: my weight gain. In the last month, I've put on 10 lbs, without reason. My pants and shirts still fit the same, I haven't been eating more or less, and my numbers have been creepily stable, but the scale tipped out at 10 lbs heavier this visit.
"What the HELL is that about?" I asked, ashamed that up until the beginning of March, I'd only gained 27 lbs with this pregnancy, but now I was already pushing the 35 lb mark ... with six weeks to go.
"Your feet. Your legs. And your hands. I'm very concerned about this weight jump, not because of the weight itself, but because it's obviously water weight. And I don't want any issues with pre-eclampsia cropping up."
(Enter the second set of tears from me.) "I've been checking my blood pressure at home, and haven't seen any spikes. But I'm puffy as all get out, and it's very, very uncomfortable. No headaches, no trouble urinating, but puffy? Yeah."
"I think we should run some blood work today to see if you have the blood indicators of pre-eclampsia. It's not just the blood pressure and the headaches that are indicative of this issue. By running the blood panel, we can see if your body is already gearing up to develop this problem, and we'll be prepared either way."
"Okay." Blotting tears. Such a mess. "So we'll do that and an A1C and go from there?"
"That's the plan."
After a few other appointments, I headed home and focused on the weekend. Dr. T called me on the ride home and said that my blood work came back perfectly, without a single blood panel indicator of pre-eclampsia and my urine also didn't show any protein spilling. I felt reasonably at ease and comfortable with the fact that Le Puff was simply due to Le Pregnancy, and nothing more.
But there were some aggravating moments at Joslin, which deserve a whole separate post. And the weekend? Had plans on tap other than "relaxing." All is well, but it was a long and tangled experience. More on that tomorrow.
I was diagnosed with type 1 diabetes just before I started second grade, back in 1986. I played with Barbie dolls, colored countless coloring books with my box of Crayola 96 (sharpener in the back), and sported a messy ponytail as often as my mom would allow.
But my life also included dozens of plastic bags filled with orange-capped syringes. And black meter cases that zipped up the side and held my glucose meter. And small vials of bandaid-scented insulin. My childhood was colorful and fun and just like every other kids', but there were some dreary bits of diabetes management as a running thread.
I wish there had been things like this to hold my meter in when I was growing up with type 1 - because these meter cases are awesome:
This meter case was created by Kyrra Richards, who was diagnosed with type 1 diabetes in 2007. I think it is GORGEOUS. After her diagnosis, Kyrra created Myabetic - a specialty store stocked with playful and cool glucose meter cases. She sent me a few of her meter cases to review here on SUM, and she also offered to share a little bit of her story.
* * *
Kerri: Hey Kyrra! What’s your diabetes story?
Kyrra from Myabetic: I grew up as a dancer and was diagnosed with type 1 diabetes after returning home from a dance tour in Afghanistan. I had been performing for the troops at military bases and realized that I was out-eating soldiers in the dining facilities. After guzzling down 24 water bottles in a day and a half, I finally went to the doctor and received my diagnosis just before my 25th birthday. I began the endless cycle of doctor appointments, lab tests, educator meetings, and waiting rooms. The physical changes were frustrating, but the emotional obstacles proved to be even more challenging. I created Myabetic as a way to cope constructively with my diabetes.
Kerri: How do you think that Myabetic can help make a difference for people with diabetes? What gap are you guys filling?
Kyrra from Myabetic: Myabetic was founded because I felt a need to personalize health management. Although diabetes is a constant struggle, we have the opportunity to take control of our treatment. Upon my diagnosis, I lacked the motivation and self-worth to properly care for my condition. Using the standard-issue nylon case only made me feel more ‘sick.’ I personalize so much of my life – my cell phone, computer, license plate – why not do it with healthcare? We are all strong, unique individuals, and I wanted our daily testing accessories to reflect our personalities.
Kerri: What made you want to become more involved in the diabetes community?
Kyrra from Myabetic: The most rewarding aspect of Myabetic has been the oppor
tunity to contribute to our supportive, accepting community. People with diabetes are passionate and strong! It’s time that our accessories and equipment make us feel the same way. I love carrying around our cases and am excited to share our products with everyone. I know they can make a difference and bring smiles to healthy faces. (Especially since I jumped for joy when my diabetes educator gave me a bunch of purple lancets – it’s the little things…)
Kerri: If people want to find out more about your products, or want to order a meter case for themselves, how can they get in touch with you?
Kyrra from Myabetic: We currently have cases for men, women, and children available on our website, Myabetic. We would love to have everyone become a fan of Myabetic on Facebook and/or follow us on Twitter. Check out the Community section of our website to find the links. Also, if anyone would like to contact me directly, my email address is krichards (at) myabetic.com.
* * *
Thank you so much for sharing your talents with us, Kyrra! And in the interests of full disclosure (also known as TMI), I'm sending the free samples I've received from Kyrra onward to some very kind readers who have reached out over the years. One good turn, right?
(I'm off to Joslin for the day - have a great weekend!!)
This is an old graphic from a wicked old post (2007? Whoa, the internet has had a hold on me for quite some time now.), but it still makes me laugh.
That's it. And now I have the giggles.
Ah, the cruel truth to pregnancy. I'm currently 32 weeks pregnant, which means I'm eight months along. "Oh great, Kerri! That means you only have one month to go!"
WRONG!
Those perpetuating the rumor that pregnancy is only nine months long, I beg you to stop. Because when we, the pregnant messes, crest up to the eight month mark, only to realize that there are eight weeks left to go? We cry. Sometimes we just bust out crying. Because pregnancy is 40 weeks long, and when you divide 40 (weeks in total) by 4 (weeks in a month) ... well, even I can do that math. It equals 10. Ten months.
So I'm eight months along, but I've got seven weeks left to go.
Expansion is rapid these days, and my pregnant body has gone from "comfortable" to "OMG, TEN MONTHS LONG?" On the regular ol' pregnancy front, I'm experiencing some wicked swelling in my hands and feet, but thankfully my blood pressure is still holding steady. Also thankfully, it's been warming up for the last few days, so sporting flip flops doesn't look too dorky.
Sleeping is an issue, though. I'm having a miserable time getting a good night's sleep, because this swelling in my hands is waking me up with shooting pains in the middle of the night. Actually, every hour or so I'm waking up with pain, despite the fact that I'm wearing wrist braces to bed. I may have to bite the bullet and take some Tylenol, even though it will render my Dexcom pointless. (Tylenol makes the Dexcom throw inaccurate results, and I can't take Advil while pregnant, so it's about choosing pain or accurate CGM results.) I'm trying to relax and remember that it's only a few more weeks of this.
On the diabetes front (and I'm afraid to say this out loud), I seem to have hit some kind of stride. The 300's are gone. The 240's are gone. I'm seeing a few spikey 200's, but they are sometimes explainable (like after I was 50 mg/dl and I over treated a low) and some I just need to forgive myself for. Overall, my numbers are steadier and I'm seeing more flat lines on the Dex than I saw a few weeks ago. I'm so, so hopeful that the next seven weeks roll out in the same fashion. My total daily insulin dosage is up to between 68 - 75 units of Humalog a day (far cry from the 24 - 28u I was taking pre-BSparl), and I'm wondering if this will remain the case until the delivery. I'm holding my breath, praying that things just hold freaking steady for a little longer.
This week, I'll see my OB/GYN and the rest of my prenatal team, and I have a lot of questions to ask. Like what happens if I go into labor before my scheduled delivery date? What exactly is supposed to be that "bag that stays packed just in case?" What can I do to alleviate this swelling, in efforts to stay comfortable for the next seven weeks? How about those four days we'll be spending in the hospital - will I be able to wear my pump once the c-section is over? Can I put the Dexcom back on at that point, too? Does the baby sleep in the room with us or does she have to go to a different part of the hospital while I recover? Will I be on painkillers after the surgery? Does someone show me how to breastfeed or is that something I'm supposed to take a class for beforehand?
Are they really going to trust me with a BABY??
(The question mark has become the most-used key on my laptop these days.)
A guest vlog, by Ms. Siah Sausage, expressing her views on BSparl, sandwiches, and her desire for world domination.
When I started blogging back in May of 2005, I used my real name. Which didn't strike me as odd because I figured that the only people who would ever see my written ramblings would be people I knew and sent the links to ... so blogging as "Kerri Morrone" seemed like a fine thing to do.
But things took a different sort of path, and suddenly Google had a solid grip on my name. Which, again, was okay with me because I'm making these personal disclosure choices on a case-by-case basis. So for anyone willing to give Google a go, it's easy to find my photo, some of my health conditions and treatment choices, and that I've married into a new, more challenging name. There's a lot of information out there that I have chosen to share, for better or for worse.
In some cases, it's "better" for me to use my real name and share my real experiences because blogging has not only helped me achieve better health, emotionally and physically, in regards to life with type 1 diabetes, but it's helped connect me with you guys, and that has been a game changer. Blogging has also given me some very special opportunities to help make a difference when it comes to diabetes advocacy, and that has been tremendous in fueling both my own health and my career. And honestly, having diabetes and talking about it doesn't make me feel shy. I like sharing my stories, and hearing yours, and connecting with people who really and truly "get it." I felt alone for way too long. The impact of blogging on my overall health is something I can't put a value on.
In other cases, it's "worse" for me to not blog anonymously, because now any potential employer can send a query into Google and see that I have type 1 diabetes. Would that make them less likely to hire me? More likely? No change at all? Either way, that information about my personal health is out there, and I can't take it back. And not just health information, but personal information. Real life information.
Disclosure on a blog isn't just about letting people know about free samples, or advertisements, or sponsorship opportunities. That stuff is important, on a level of maintaining integrity and letting people know they can trust you to tell the truth, the whole truth, and only add some crap about cats occasionally.
But I've been thinking about how disclosure will be handled, going forward, when it comes to my daughter. From the moment I found out she was blooming inside of me, I felt instantly protective of this little biscuit. Chris and I have talked extensively about how we want to handle our child's identity in regards to our respective projects, and we both agree that she hasn't decided to become part of the Google matrix yet. So we aren't going to put her there. This is a decision that we, as a family, have made, but it doesn't mean that it's the right choice for everyone. There is no "right choice," in my opinion - just varying perspectives and levels of comfort. (And who know how I'll feel once she's here and her little face is just too chubby-cute not to want to post a photo of.) It's a lot to think about.
If my daughter decides, when she's older, to have a Facebook page or a blog or whatever is the social networking "thing" to do by that time, she can make that decision for herself. But I don't want her to Google her own name and find more than she's comfortable with. (... That is the weirdest thought ever, picturing myself talking about blogging with my daughter over like coffee or something. The thought just made me grin.) Hopefully she won't object to being called BSparl.
How do you guys handle disclosure? Are you comfortable sharing your full name and occupation with people? What kind of information to you like to keep private, and what do you feel comfortable sharing 100% with anyone who asks? Have you ever had any regrets about how you've chosen to present yourself online? For those of you with kids, what helps you decide what to share, and when, and how much of it to share?
Sorry for all the questions, but as the baby grows daily, so does my protective nature. And so does my laundry list of questions.
Nothing says "hot momma" like a pair of puffy pregnancy hands.
BSparl and I almost at the 32 week mark, and I'm rocking what I've heard is a very common, but very uncomfortable symptom of pregnancy - swelling. Water retention. Puffiness. Or, as I call it when I'm frustrated but more like Pepe Le Pew-frustrated when he can't get his mitts on that black cat: "Le Puff."
The first half of my pregnancy was very comfortable. No morning sickness and no real discomfort, just the growing potbelly and lots of blood sugar lows. Second trimester was good enough (just got bigger and bigger) but now, deep into the third trimester, I'm starting to really feel the burn. This puffy hands thing isn't just a mild complaint. "Le Puff" is serious stuff!
It's a combination of puffiness and pregnancy-induced carpal tunnel syndrome, with my hands aching and often seized with that 'pins and needles' feeling. Wearing a wrist brace while I work helps a little, but not enough, and I find myself taking more and more long breaks to ease the pain in my hands from typing. I wear the brace to bed, too, in efforts to keep my hands in a "neutral position" throughout the night. (Neutral, instead of like flipping Chris off at 2 am? Would that be an "offensive position?") And today, I'm off to get a second brace for my left hand, which will make me officially robotic while I sleep, with the two braces, the pump, the Dexcom, and this massive belly.
Like I said ... total hot momma. :p
So one of the treatments for this miserable symptom - oddly enough, is more water. It seems counter-intuitive to down a bottle of water when I'm feeling at the peak of Le Puff, but staying hydrated is the best way for me to keep the puff at bay. And I'm also being monitored closely for pre-eclampsia, seeing as how I have a few of those risk factors in play (first pregnancy, diabetes, pre-existing hypertension ... good times again!). My blood pressure, and the other signs of pre-eclampsia, are being closely watched for, so hopefully no worries.
My next round of doctor appointments (and the beginning of the bi-weekly visit routine) is late next week, so I'm doing what I can to stay off my feet these days and prop them up while working. Exercise is a little bit of a trouble spot, too, because shoving Le Puff feet into non-Le Puff sneakers is proving tricky on some days, but I've been trying to supplement with in-house yoga and stretching exercises (while barefoot). And I'm resting a lot, which makes me feel like a lazy bum, but people keep telling me to get these naps in BEFORE the little biscuit arrives, so I'm taking their advice.
In the meantime, I'll Stay Puft.
"I'm here to pick up two scripts for Sparling. First name is Kerri."
"Spaulding?"
"No, Sparling. Like 'darling,' only with an S-P?"
The woman leaned in. "Speaking?"
"SPAR-ling?"
She stretched so far across the counter that her name badge clanged against the formica top. "Spanking?"
"Excuse me?"
How was I going to get through this without laughing? She wasn't mangling my name on purpose. But "Spanking?" That's another first.
"No, ma'am. Not Spanking. Spar-ling. Es, pee, ay, are, ell, eye, en, gee. Sparling?"
"Oh! Sparling! Why didn't you say so? I'll get those prescriptions for you. Just a minute."
Sparkling. Spaulding. Spanking. Tyson?
Still better than Moron, I say.
A few nights ago, I had the opportunity to co-host a webinar for WEGO Health with Janis Rozsler (who literally wrote the books on handling diabetes and chronic illness). It was a really cool discussion, and even though I have diabetes and Janis's expertise is in the field of diabetes, the talking points were applicable to more than just this one disease.
But since type 1 diabetes is what I'm most familiar with, and I couldn't help but spin every question in relation to my own health condition. This question, in particular, threw me:
I get a lot of questions from blog readers. (I ask a lot, too.) Lots from family members. Some from new friends, some from old buddies. Some from people I've dated in the past. And so many from Chris, as we learned about one another and planned for our future together.
The toughest question I've had to answer about diabetes is very direct, and completely innocent. I've been asked this question over and over again, and have sometimes even asked it of myself.
"Will you be okay?"
It's such a simple question, but I know the words that are missing from the beginning and the end. "You have diabetes ... will you be okay? Or will you have complications?"
There are days when I'm certain of the answer. "I'll be fine. I'm working hard - I'll be just fine." These are the days when I'm having a decent run on the Dexcom graph, and the average on my machine is under 120 mg/dl, and I'm feeling strong. When I feel like diabetes is on the peripheral, and not the focus.
Other days? Seems like the answer should be "Nope." Those are the days when I'm screwing up every carb count, when my numbers are pinging from one end of the spectrum to the other without spending even 15 minutes 'in range,' and when I feel whipped by what this disease requires, physically and mentally.
I can do so much to protect my body from this disease. I can test my blood sugar all day long, and really try hard to immediately correct the highs and quickly treat the lows. I can keep a good attitude about things and realize that while my diabetes isn't completely in my control, my attitude can be, for the most part.
But I'm never sure, and I hate when my brain starts to think too much about my control of the future. I've written before about how diabetes complications are from diabetes, not from my lack of or emphasis on effort. It comes down to us doing our best, our very best, to stay on top of our physical health as we remain tuned in to our mental health. The last few weeks, with such a heavy focus on my diabetes management and with every breath (mine and my baby's) being tracked by my medical team, I'm hitting a level of burnout that I've never felt before. I'm trying to stay focused on the end result - holding the baby!! - and that helps keep me grounded for a few more days. I am pretty damn sure I'll be okay, overall, and even if my body has some physical hiccups as I spend more and more time with type 1 diabetes, I'm hopeful that a good attitude will see me through the tougher times.
"Will you be okay?"
Sometimes I just have to shrug and say what's really in my heart: "I hope so." And then a grin. "I plan on it."
No WAY could I ever claim to "counsel" parents of kids with diabetes. I'm not an expert, I'm not a doctor of any kind, and I don't have the first clue as to what I'm doing 90% of the time.
So. That being said, I will admit that I've emailed with lots of parents of kids with diabetes, and I've gotten so much out of that glimpse into what it's like to be the parent of a CWD. Not counseling, but listening. And learning. Talking with these different parents has given me a whole new level of respect for what my mother and father did for me, growing up, and how I view my diabetes as a result of their care.
Over the weekend, I received a few questions from a parent that I couldn't quite wrap my head around. They were big questions, the kinds that require coffee and one of those old school composition notebooks (and a phone call to my mom) to sort out in my head. Here's my take on this mom's questions about growing up with diabetes:
How well did your parents do in managing your diabetes until you were able and independent?
I can't say my parents did anything short of remarkable work when it came to my diabetes. And that goes for every parents of a CWD that I've met in the last few years. I was diagnosed just before second grade, and my family didn't know anything about type 1 diabetes, let alone that it could ever effect their daughter. They brought me to the hospital and stayed there with me for 12 days, learning how to inject insulin into oranges using syringes that they would eventually plunge into my own skin.My mother, in particular, took her role as "my pancreas" very seriously, and worked tirelessly to control my difficult blood sugars. She tested me every morning when she first woke up, the sound of the ziiiiip on the black meter case stirring me just enough to poke my hand out from underneath the covers so that she could lance my fingertip. She carried measuring cups in her purse and had a food scale in our kitchen. My pancreas wasn't working hard enough, but my mother was.
This isn't to say that we were "perfect" in managing diabetes, or our emotions, or that we had one of those "unicorns and rainbows" types of relationships. My parents and I battled endlessly about all kinds of stuff, from cleaning my bombsite of a room to my propensity to drive too fast to fighting over the boys I wanted to date to the diabetes I didn't want to control all the time. Fights were part of the routine, but it wasn't because of diabetes. It wasn't despite diabetes. Diabetes was just part of the stuff we fought about.
(And on the whole "able and independent" part, I'm still not fully either of those things. I'm able to take care of myself, but I still lean on my parents, and my husband, and my friends for support. And while I'm fiercely independent, I still need, and want, their help.)
Did you resent them?
No. I never resented my parents for any of this diabetes stuff. Not even when I wanted to convince myself that it was hard because they made it hard. Diabetes is hard because it's diabetes. Sure, my mom and I had blow outs about when she would say "We have to test our blood sugar," instead of "You have to test," but I grew to understand how much she was truly involved, even though I wasn't aware enough at the time.I've resented diabetes, though, which I know is hard for my parents to hear (and to read on this blog). I do not like it, I didn't invite it, and I'd sell it to the lowest bidder without thinking twice. I resent it for making me write To Do lists that a child has no right even worrying about, and I resent it now for making me feel for a kick from BSparl every time I have a blood sugar spike during the course of my pregnancy. But my parents - my whole family and friends support team, honestly - have tempered that resentment for me by supporting me. They don't coddle me, or tell me that "Things will be fine" or "Sure, you can go ahead and not care about diabetes." They understand that this disease is serious. And unfair. And only sort of manageable. But also that it doesn't have to own me. It never has. And it never, ever will.
What is one thing you could tell me to do that will make make this easier on [daughter's name]?
Blame the diabetes, not yourself. Or your child. Let her know that it's you and her against this monster, and you'll always fight beside her, not against her. You're in this together, and she'll never be alone.
But Reader, you'll never be alone, either. You've got all of us. For the long haul. :)
I wanted to give my answers to this mom of a little girl with newly diagnosed type 1 diabetes, but I also wanted to offer these questions up to you guys. To get more than just my perspective, because so many of us have grown up with type 1 diabetes and might answer these questions in completely different, completely honest ways. If you have insight to offer, please do!
With only a few weeks left to go before the baby arrives, Chris and I are starting to think past "just the pregnancy." The focus is shifting slightly from "How do we manage this pregnancy" to "Okay - she's here. … now what??"
A few months ago, we started to make some changes for the baby's sake. We opened a savings account for our daughter. We spent that one crazy day at Babies R Us registering for things BSparl might need when she arrives on the scene. We spoke with our insurance company and talked about the process of adding BSparl to our plan. And now - we're starting the pediatrician process.
As in, who is going to answer the questions about our baby's health? Who will work with us to help keep BSparl safe? Admittedly, I wasn't always the healthiest kid, my issues having nothing to do with diabetes. Like there was that time I ended up with a splinter in my eye from a neighborhood "sword fight" using tree branches. Or the time I was watching a movie when I was about 3 years old and stuck bread in my ear, just to see if it fit. (It happened to fit quite nicely, thanks.) Or … um, the time I was also watching a movie and decided to see if I could fit a raisin up my nose. (The raisin also fit. And it had to be extracted by a doctor at the emergency room. And apparently I liked to put food in all the available spots in my head.)
Knowing what kind of bizarre things happened to me as a kid, I am already braced for when BSparl toddles over to me and tells me she fit four Cheerios up her nose. So, like I said, Chris and I are starting to think about our pediatrician options.
I'm not looking for specific recommendations for doctors, but more the questions that you ask your child's doctor. Do you interview a pediatrician like you'd interview a babysitter? My OB/GYN suggested that Chris and I actually go meet a potential pediatrician and ask them a few questions, see how we feel about having this person as part of our child's life. You know, get a feel for what it will be like to engage with this person. So what kinds of questions should I be asking a potential pediatrician? The ones that jump to mind don't seem right to me:
"Do you like children?" (I'd hope so.)
"What made you want to be a pediatrician?"
"We have some chronic illnesses in our family. What's your familiarity with diabetes, etc?"
"Do you like cats?" (Not relevant.)
"Do you take our insurance?"
"How long will we need to call in advance of making an appointment?"
"How many fingers am I holding up?" (Three.)
While I'm not worrying about whether or not my child will end up with type 1 diabetes, I do realize that there is a slightly increased risk. And I want to have a doctor who is able to work with Chris and I through our decisions to pursue TrialNet, and other research studies, as we keep close tabs on BSparl's health. So it's time to start putting together our questions and subjecting some poor soul to our curiosities.
Any suggestions on how to find a pediatrician? And do you know how many fingers I'm holding up?