The Stress of Exhaustion

I don’t remember moving ever being this stressful.

We moved a lot growing up, by the time I had graduated high school I had lived in 6 different cities in 3 different countries. I had lived on the east coast, the west coast, and by the time I was in my mid-20s I had even lived places in between. 

My mother always coordinated the moves, and always managed to pack up an entire house, bribe three children into packing, start getting angry at three children who still hadn’t packed yet and the movers were coming in two days. She found houses, got utilities set up, and in one case even drove from one end of the Trans Canada highway to the other with three kids in tow and nothing but an early-90s bag phone and three Weird Al Yankovic cassette tapes between her and insanity.

Now that I’m trying to get a move together I fully understand what she went through and I now truly appreciate her efforts. Because I have done everything for this move.

I’m the one who set up house viewings and drove 9 hours with an infant in tow to look at them.

I’m the one who set up the utilities.

I’m the one packing the boxes.

I’m the one coordinating getting stuff up there.

I’m the one concerned with transferring health and car insurance and setting up renters insurance.

I’m the one looking at changing banks.

I’m the one looking for a job.

It’s starting to get to me. I walked into my mother’s house after a few days spent at the in-law’s and I started to freak out.

A complete, total, trembling, unable to breathe freak out.

I have until a week from Friday to get all the stuff together. Get everything packed. Make sure I have all the stuff from this house that I want to take north with me and will need in the new house. And before next Friday, I still have to wrangle a baby, read a chapter of anthropology, complete two modules in the course, take a final, go to a doctor’s appointment about a suspected UTI or kidney stone, hydrate like a champ and receive an IVIG infusion.

My to-do list is on my full-length mirror and takes up the entire thing, with extras added on in the margins. One of those little extras:

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Easier said than done.

I know that freaking out does me no good. I know that it raises my blood sugars and lowers my immune defenses. But I can’t help but worry. I can’t help but be concerned over getting everything done that I need to get done.

It doesn’t help that I’m not getting much in the way of support from Lord Imp, save him taking the baby from me up to his parents so that I can focus on getting things done, but while taking the baby out of town does free me up to get things accomplished, it in and of itself doesn’t lessen the burdens any. Part of the issue is that I really don’t think he understands what we’re doing here. I don’t think he understands that we’re not going to school, we are moving. As in, picking up our lives and transplanting them to the Keweenaw. Which I just had to Google to  make sure I’m spelling it correctly.

I wish he understood that the reason why I do everything so far in advance is because I don’t have the energy to leave things to the last minute like he does. He’s an engineer, engineers by definition leave everything until the night before it’s due. I can’t do that, my body just doesn’t let me. I have to spread everything out so that I don’t use up all my spoons for the next month before everything is done. Shit, I start writing papers a month before they’re due.

I’m exhausted and in desperate need of some R&R. But I don’t have the time to take it. I don’t have the time to sit on my butt and relax and get everything done that I need to get done. I really need it though, I’m tired and in pain and running out of immunoglobulin (although that bit is really just me being overly dramatic). My blood sugars are all over the damn map, after my pseudo panic attack I spent several hours over 200 mg/dL before I crashed back down in a dramatic fashion despite canceling my temp basal hours ago.

To make matters worse, I made the mistake of leaving Baby Imp on the bed a couple of times and she fell while I had my back turned. All it took was looking for a Sharpie or trying to fix myself a plate to eat and BOOM! Baby on the floor, likely having conked her head. I gave her some Tylenol for the pain and an enormous bottle after letting her scream on grandma’s lap while I wolfed down a supper of a chili cheddar brat and a small salad consisting of frozen greens, and she is now conked out to the point where I had to shake her and call her name to get her to stir. I’m honestly freaked out over that as well, although she is breathing and both times she fell she immediately calmed down when I held her. The total height of my bed is only 16 inches from the floor, since I am heavily anti-bed frames because I will just only shove shit under the bed. My carpet is rather soft and if not for all the crap I have strewn all over the floor due to my weird packing routine, worst-case scenario she would just have a bit of a rug burn on her face.

But I’m convinced she nailed her head not once, but twice today. And I’m scared.

And I’m tired.

And I’m stressed out.

And I really need someone to help me with the slack.

Instead, I’m going to blog. And make no sugar added blueberry jam. With wild blueberries.

But first, I’m gonna pack a few boxes.

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And the Verdict Is…

Got a phone call from the immunologist today. The results of the genetic test are back in, and the Bruton’s (or X-linked) agammaglobulinemia has been switched to common variable immune deficiency. I lack the mutations in the gene that causes the XLA, and although that I am presenting like XLA there are mutations in the genome that are indicative of the CVID. 

I will admit, this is somewhat of a relief. While the genetic inheritance of CVID isn’t known for 100% fact, what is known is that it’s autosomal and not sex-linked. Making the chances of passing it on to my son slim to none.

That is an enormous relief. I’m still having Baby Imp do an immunoglobulin assay at her 6-month check up just in case, and I notified her brother’s father. We’ll see what he does about it, but whatevs I’ve done what I need to do, it’s completely out of my hands now on that front.

I’m also relieved that I now have a definite name for it. I’ve been calling it XLA since that was how my labs were presenting – deficient in all immunoglobulin classes, no mature B cells and it was unknown if I was making Bruton’s tyrosine kinase. I don’t know if they’re going to do another BTK test and quite frankly, I think it would be a lost cause since the genes that code for BTK are just fine.

I guess though that it begs the question: what else contributes to the maturation process of B cells? I’m sure there are more enzymes that do, I just don’t know what they’re called or even if we know about them. What else is causing this?

I’m having the results emailed to me, and I will be requesting the results from all other labs when I’m in the immunologist’s office here in a few weeks. I want to look over them to see for myself what’s up.

Now’s the time I’m glad I’m a molecular biology/biochemistry major. 🙂

#dblogcheck 2014 – Or, I Don’t Miss Egg McMuffins

I’m new to this whole blogging thing, so when I was cruising on Twitter thinking that I should probably take a nap since Baby Imp is sleeping and came across #dblogcheck, I thought that it sounded like a good idea and was something I should check out.

I then thought that maybe I should probably write a new post for it. Yaknow, because reading the same crap over and over again gets old.

I mentioned in my post last night that I was going to talk about my diet-killing this past weekend. Many of you know that I eat low carb, high fat. I’m quite vocal about it, as a matter of fact. Ever since going low carb, my blood sugar levels have been far more consistent, my A1c levels have dropped to the high 5-low 6 range, I’ve had more energy and I also don’t find myself eating constantly like I used to. What I’m not quite vocal about, however, is the fact that there are times when I do cheat on the diet.

This past weekend was tough, with the baby being very sick and running for a 24-hour stretch that included only an hour or so of sleep. Between all that, I was working all weekend, and worrying about the baby even though she was safely home snuggled up with her daddy.

In addition to being straight-up exhausted, after leaving the ER at just after 5 in the morning, I was starving and had exactly no energy to make myself anything. I just wanted to get home and sleep so that I could be rested up when I showed up at work at 10. So, I did what any normal person would do: I swung through a McDonald’s drive-thru and got myself an Egg McMuffin meal, complete with the hashbrown and a big ‘ol unsweetened iced tea.

In a former life, that meal would have made me incredibly happy. Egg McMuffins used to be my favourite thing to eat in the morning. The delicious saltiness of the Canadian bacon and their special English muffins that I swear must have crack in them because they’re just so damn addicting. I ate that sandwich in the car on the drive back to the house, smiling because it brought back happy memories of deliciousness and road trips.

In 10 minutes though the smile had faded as the nausea set in. In a past life, my response would have been “OMG, so much fat!” and to some extent there may be a grain in truth of that since fast food joints aren’t exactly known for using the healthy kinds of fats. But after nine months of gradually getting myself down to under 60g of carbohydrates a day using a sugar free/grain free approach, I knew that it wasn’t the corn oil that was the cause of my gastrointestinal distress – it was the carbs.

My blood sugar promptly climbed up to the upper 200s after that meal, not surprising considering my pump just isn’t calibrated to handle that kind of diet anymore. I started to feel awful, dry mouth along with the upset stomach. But my pump wasn’t giving me any more insulin since it doesn’t let me stack doses, so all I could do at that point was wait for my blood sugar to come down.

And let me tell you, it did. To the tune of upper 50s three hours later coming down.

In a past life, I would have adjusted the bolus rate to give me a little less insulin, resulting in my peaking higher but at least not having a hypoglycemic episode when all was said and done. But I am now more educated, I know how carbohydrates work and I know that not all carbs are created equal. I know that my pump is set to handle more of my low carb/high fiber/high fat lifestyle, and it works very well for that. When I’m eating normal, it’s rare that I see a blood sugar above 140 even an hour after eating, and I always come back down to my usual 90 mg/dL and stay there.

But Sunday was cheat day. So Sunday was also see-saw day.

I spent the rest of the day repeating the process – eating bad and suffering the consequences. My blood sugar got down to 47 mg/dL while I was in the ER for the second time with Baby Imp. So I was given some juice, graham crackers and peanut butter. I was so out of it, I didn’t care what I was eating, I just ate it. And got sick. Again. I also sent Lord Imp out for cheeseburgers, fries and a cherry Coke. I couldn’t finish it, not even the Coke, it just didn’t taste good even with the low blood sugar. I took insulin for it, and once again went through the huge spike and crash scenario that I went through earlier.

We got Baby Imp home around 11 that night, and I found that my mama had ordered pizza from the only place that doesn’t destroy my blood sugars provided I don’t eat the crust. It’s greasy, loaded with cheese and the crust is thin enough to remind me of the pizza I used to get when living in New Jersey as a kid. It’s good stuff.

I ate that slice without bolusing and woke up at 195 mg/dL the next morning. Which is actually surprisingly low given the grains in the crust.

I will be honest though, despite thinking that I was being bad throughout the day, I am actually quite glad for the diet-destroying experience. Blood sugar swings that I once thought were normal I now know aren’t, and seeing them after the new knowledge I acquired made me very aware that my diet is an enormous part of my control regimen. And the nausea I experienced after eating every meal on Sunday only reinforced the fact that my body just doesn’t like carbohydrates. It is much easier to eat low carb when you have something physical to remind you that your body just doesn’t like eating any other way, and for me the tummy ache is a good “this is a really bad idea” notification.

Yesterday the diet was much better. Lunch was a little carby due to a low blood sugar, and once again I felt sick after eating it. Supper I got back on track, and ate an Atkins TV dinner over a small pile of cauliflower rice (let’s face it, I was exhausted and incredibly lazy). That TV dinner, even with its additives and lord only knows what else was the most amazing and welcome meal after my 36-hour carbohydrate binge. I felt amazing after eating it, I had more energy and I continued to have a full feeling well into the night. At around midnight I had a small handful of almonds before going to bed since I was a touch on the hungry side. Woke up with a blood sugar in the 170 range that hasn’t gone down, and I’m thinking I’m having dawn phenomenon problems (AGAIN). I really wish I could get that under control, but that’s another battle for another time.

In the end, I have learned my lesson. Grains do not like me. And I’m finding that I really don’t like grains anymore. This is what makes low carb dieting so easy, after a while you just lose your taste for all that carby stuff. Sure, it’s a little more work, but the blood sugar numbers make it worth it for me. That and I love to cook, that helps as well. I think though that my experience this weekend will serve as a lesson of how important it is for me to maintain my low carb focus, not only for the sake of the diabetes, but also the sake of my poor tummy.

Now all I need to do is find a way to make a low carb strawberry Charlotte…


 

This is my post in the 2014 #dblogcheck event, where people read diabetes blogs and comment on every blog they read, even if it’s just to say “check!”. Read about it here.

My Poor Little Baby

There is nothing that breaks your heart more than when your child is sick and there’s nothing that you can do.

Saturday night, Baby Imp woke up screaming. As in, inconsolable screaming. So I got out of bed, gave her a bottle, she fell asleep and I put her back down. And she woke right back up, screaming. Between Lord Imp and I, we rinsed and repeated about 3 times until I noticed she was feeling awfully warm.

So out came the rectal thermometer. And it came back at 102.4 degrees.

Cue the urge to freak out. A fever in an infant is any temperature higher than 100.4 degrees. And since this is a first-time event, I had no idea what to do. 

So we brought Baby Imp to the ER. Where we were told that it’s probably something viral, put her on Tylenol and Motrin, give her plenty of fluids, follow up with the pediatrician and come back if she gets worse.

For any normal parent, this is a completely legit way to diagnose what was going on – we don’t know, just keep her comfortable. To a parent with a primary immune deficiency, that’s just not good enough. To a parent completely lacking in any sort of antibodies, being told “I don’t know” is downright scary. I like to know what I’m up against. And I have a child running a high fever. If it’s a cold, I need to know if it’s a cold. If it’s the flu, I need to know it’s the flu. If it’s measles, I sure as hell need to know that it’s measles. That way if and when I come down with whatever the baby has, I am able to tell my immunologist what’s up and I can be given the correct antibodies if necessary without delay.

But, we were just told the baby is sick, keep her comfortable. Incredibly frustrating. Especially since I gave up on sleep that night to bring her in. I went to work Sunday morning only having gotten an hour’s worth of sleep since 11:30 the night before.

Even more frustrating, her condition deteriorated on Sunday. She wasn’t eating much, was lethargic, incredibly fussy, and her temperature had climbed to 104.1 despite alternating between Tylenol and Motrin every four hours. Lord Imp called me at work freaking out, and I told him to bring the baby back to the ER.

This time around, we fortunately had a more thorough examination. Everything came back negative and I did feel bad for putting the baby through all the tests she went through. Some may even think that I’m selfish for putting her through that. But given that sickness for someone with a primary immune deficiency can sometimes equal a hospitalisation, it was necessary not only for the baby but for me as well.

And I can’t be a good mother if I’m in the hospital.

My mother yesterday had brought up the possibility of the baby having roseola. Roseola is an incredibly common illness in children under 2 – from what I’ve read, estimates are as high as just a hair under 100% of adults having antibodies against it, indicating prior exposure to the disease. It presents itself first as a sudden high fever, then after a few days the fever breaks and a rash starts. It’s highly communicable and the fever is uncomfortable, but it is by no means fatal nor anything to worry about. It’s really more of an inconvenient pain in the ass. So at the baby’s follow-up appointment, I asked her pediatrician about it. He agreed that this was very likely the cause of the baby’s illness, and told me to keep up with the fever medication, to not be surprised if the fever suddenly dissipates and she starts having a rash on her trunk, and to call if there were any concerns.

The good news is, Baby Imp has been a little more engaging in a positive manner today – she was even smiling towards the end of the night, something she hadn’t done since Saturday afternoon. She finally started letting me put her down (she was not happy with not being in someone’s arms at all, neither Lord Imp nor I got any sleep until about midnight last night), she got a good 5 hours worth of sleep last night and she even took a few naps today. She was in a much better mood tonight than she had been, probably due to the fact that she finally got herself a little rest. She’s in her crib right now, conked out. 

A huge part of me is relieved that she is finally looking like she is working her way through this. The other part of me is paranoid. Like, super paranoid. I hate having fevers, I hate being sick, and I don’t know how I’m going to be able to take care of the baby on my own if I do get sick since Lord Imp is out of town for work. I’ve been taking my temperature about every 6 hours during waking time for the past two days, just to keep an eye on it. 

We’ll see what happens. I may lack the antibodies that keep germs out, but I have a supply of those that fight the infections. If all goes well, all I’ll end up with is feeling kinda meh. I can handle feeling kinda meh, I didn’t get any sort of sleep until after midnight last night, I’ve been rocking the feeling kinda meh thing for the last 72 hours like a boss. Although I was able to get a good 3 or so hour long nap in while the baby slept, and I was feeling better. Add on to that the fact that I stopped cheating on the low-carb diet and I feel even better (I’m saving my burger/fries/pizza/Egg McMuffin experience for another post).

But I’m still tired. And now it’s bedtime.

The Nightmare Called Fear

I am scared to go to sleep.

My thoughts chase me, take me down, consume me. I run, but they catch up. They tear me down, rip me to shreds, leave me on a dark alleyway, lit only by a single streetlamp. Enveloped in fog, I lay on the pavement, in a puddle of blood, as I take labourious breaths.

My thoughts kill me.

I can only run so far, so fast before they catch up to me. And they jump on me, digging their claws into my flesh.

Tearing.

Is it the thoughts that I fear, or is it the fear that I am thinking? Am I really scared of my thoughts, or is my fear of something else what causes the thoughts in the first place? What came first, the fear or the thoughts?

Either way, I’m tired. I’m exhausted. But I’m scared to go to sleep. I’m scared that when I close my eyes, I will be chased again. I’m scared my thoughts will send me down the rabbit hole, spinning, falling, down and down.

My genes surround me in this hole.

The strands of DNA wrap themselves around me, tighter, tighter, until my fingertips turn blue. Breathing is difficult. The strand of genetic code surrounds me, tightly wrapped up by an enormous black widow spider. The DNA is her web, her silk, and I am now rendered immobile by the smooth strand of nucleotides.

My genes kill me.

The death is inevitable, for what else can follow life? But it’s caused by the mistakes in the blueprint, the accidental substitutions, deletions and additions that have added up to a broken building. There is no concrete that can fix it, no spackle can repair these walls. It is the house that I’m forced to live in, this broken building, with its crumbling foundation and shattered windows.

One day, this house will fall down.

Because exhaustion has taken over. I pray that my thoughts don’t chase me tonite.

Coffee and Coconuts

I am obsessed with putting coconut oil in my coffee.

I was introduced to the wonders of coconut oil on a diabetes message board. It’s full of good fats that keep your tummy full, among a myriad of other benefits. As inspired by those on the board, I’ve lately taken to putting it in my morning coffee. My local grocery store carries a free-trade decaf vanilla hazelnut blend that is deeee-lish, which I brew up in my single-cup coffee maker (since I’m the only person in the house who drinks decaf, and when Lord Imp and I move north I will be the only person who drinks coffee, period). My mother has a single-cup blender that I have commandeered for the time being, and to that I put in a bit of almond milk or heavy whipping cream (depending on what’s in the fridge, it was HWC today since I appear to be out of almond milk), about a tablespoon and a half of coconut oil, and a good size helping of coconut palm sugar since it doesn’t spike my blood sugars so it’s safe for me to use (not exactly ketogenic though, but whatevs I’m more interested in keeping my blood sugars level than losing weight at this point). After the coffee is done brewing, I add it to the blender, put the lid on, and let ‘er rip. And it blends everything together, gets the coconut oil actually mixed in so that I don’t end up with this thick film of oil on the top of my coffee, and gives it a creamy consistency almost similar to something that you get at the coffee shop. For much less per cup than I would be spending at the coffee shop. Cause I’m cheap like you would not believe.

I really enjoy this morning cup of coffee. The fats keep me going, and coconut oil has been known to keep my blood sugars level for much of the day. Sometimes I’ll even add cinnamon if the mood strikes (and I remember), because in addition to cinnamon being tasty, word on the street has it that it will keep blood sugars level as well. I think the best thing about it is that I am able to make a cup of coffee-house quality coffee that won’t spike my blood sugar and using the stuff I already have in my kitchen.

I should have taken pictures….but it didn’t last long.

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Sucks to be you

But then again, we all know that I’m not a food blogger, and I’m awful with a camera when it comes to food. It also takes a considerable amount of self-control to keep me from eating what I made straight away. Especially when it’s the morning, and I need my damn coffee.

The funny thing is, I’m really not a big fan of coconut. The taste of it had to grow on me. I use only cold-pressed, unrefined oil which has a pretty distinct coconut flavour to it, and it was definitely something that I had to acclimate my tastebuds to. While I won’t be going off and eating coconut shreds anytime soon, I will say that I am now all right with using it in my cooking.

Which reminds me, I need to buy more coconut oil. Between the microwave cakes and the coffee, I’m almost out.

Crossing the Finish Line

Today was it. The day of the Meijer Festival of Races at the 2014 National Cherry Festival. I have crossed the start line. I have crossed the finish line. Yay!

Like everything else I do, I got there early. Way early. As in, an hour before my race was supposed to start. Admittedly, this was mostly due to the fact that I thought it would take me way longer than it did to get my packet. And find parking. Hell, I even had time to swing by Burger King to carb up a bit. And still got into the parking lot an hour before I needed to be anywhere.

Oh well.

So I sat there, ate my sausage and hash browns, put on my knee brace, popped a couple ibuprofen and then decided to wander my way over to the start line to stand there by myself, looking like an idiot

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Thankfully, we didn’t end up having to maneuver ourselves around that Tundra.

And there I stood. I wandered around some, found the hydration station, noted where the port-a-potties were and was thankful that I knew what buildings on campus were open so that I didn’t have to use them. And then they told us all to line up, and since I had nothing better to do I headed over.

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I really don’t do this selfie thing.

I lined myself up under what they called the “Fun” section, with the people planning on doing 12:30+ per mile. I figured that was a really good place for me. I haven’t done a 12-minute mile since I was 14, prior to the knee blowing out and subsequent surgery. Besides, the Fun section was where all the fun was anyway, and I wasn’t there to win, I was just there to do it as a symbol of all that I’ve been through and all that I’ve accomplished.

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The fun is always where I’m at.

We sang the Star-Spangled Banner, and then we were off. And I ran. I ran a good half-mile, as a matter of fact. A slow jogging pace, but it’s still the longest I have been able to run in one shot. Ever. Until my thighs started protesting, and I had to slow it down. I jogged a little here and a little there, but in the end it was a lot of walking. The miles seemed to drag on, probably because when I go for my runs, I know exactly where the mile markers are and I can anticipate them. As a matter of fact, I use the known man-made mile markers (AKA where roads intersect) as a point to focus on when I’m going. I will say though that it really did feel like there was more than a mile between the signs, but I’m sure that’s just my inexperience talking.

So there I was, walking along, and then I got into downtown. Which was hands-down the most awesome feeling, ever. All those people, lining the roads, cheering and making noise. Now, there had been people all along the route, chilling in their camp chairs in their front yards cheering us on, but getting into downtown was something else. All the noise, all the excitement, that was something that I had never experienced before. And it felt good. It was a straight shot for about half a mile and I could see the finish line, and despite the fact that my busted left knee was vehemently protesting, I started jogging again. I had to stop for a bit, my knee couldn’t take it, but once I hit Mile 3, knowing I only had 0.10 miles to go, I ran. No sprint, just a light job, but I ran.

And I crossed the finish line. Running.

I will admit that it took a bit of work to keep from sobbing as I crossed. I had done it! Despite the diabetes, despite the primary immune deficiency, despite a lifetime of chest pain and knee pain, I did it. I crossed the finish line. It was hands-down the best feeling ever. Hearing my name announced as I crossed was something else. It gave a new level of accomplishment that I have never before felt. And it felt good.

My brother was running the 10K so I waited for him at the finish line because I wanted to be there cheering him on. Lord Imp wasn’t keen on getting up out of bed to meet me at the finish line which made me sad a little, and I got over it. But I wanted to be the person cheering my brother. I wanted to take photos of him crossing the finish line, but knowing that my shutter speed on my phone is awful and I’m really bad at taking action shots, I put the phone away. But not after accidentally taking some photos that can only be filed under “weird shit I find on my Lumia.”

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Because everyone needs a photo of a crosswalk on their phone.

My brother finally crossed and I met up with him, and I continued my diet-destroying for the day by snagging myself an M&M cookie that it turns out I really needed because after that cookie, a slice of cherry walnut bread, a diabetic-friendly-ish cup of cherries and 45 minutes and a couple units of insulin, my blood sugar was only 115. And that was even after keeping a 25% temp basal running since about halfway through the race.

I destroyed that awesome blood sugar and my diet even further with a stack of pancakes at our favourite breakfast stop after the race with my family. And to be honest, I really don’t care right now. Those pancakes were good.

All-in-all, it was definitely an experience that I plan on doing again. Sure, my knee still hurts and my calves are a little sore (even with Lord Imp massaging them), but it was a lot of fun. It made me feel like I was in control of me, myself, my body and my destiny. And right now, that mental strength is what I need more than anything.