#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…

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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.

No, I’m Really Not All Right, But Thank You For Asking

Lately, I have been finding myself in somewhat of a predicament of a social nature. A common question in our society is to ask “how are you doing?” Of course, whenever someone asks me that, I respond with “I’m fine,” or the more cheeky “well, I’m upright…” On the one hand, it has made it so that people don’t worry about me. However, it has also made it so that people don’t really realise that I am not well at all. On Facebook, you frequently see something like this talking about invisible diseases:

From sodahead.com

I do think that this explains it all right, but it fails to mention that it’s not just difficult to explain to someone what living with an invisible illness is, it’s downright impossible. My boss, unfortunately, didn’t quite get the memo when I called in the day after my first IVIG because I felt like I had been hit by a Mack truck. “I really need you to come in, do you think it might be at all possible?” Buddy, you try getting 25 grams of pure protein in the form of blood products pumped into your veins and let me know how you feel afterwards. It doesn’t help that I had knee problems going into it. I couldn’t even drive myself home, and I went home and slept. As a matter of fact, I slept all through the day I was supposed to work. I really didn’t feel too hot afterwards.

As a matter of fact, it didn’t occur to him that this is a real serious issue until I told him that I can’t work Tuesday evening because I have a pulmonary function test and CT scan starting at 3 in the afternoon. He made a joke about double-checking that my brain was still there, then got bug-eyed when I mentioned that it wasn’t for my head but for my lungs.

“Is it really that bad?”

Why yes, as a matter of fact, it is. Having pneumonia 5 times and bronchitis at least a dozen times throughout your life will do some damage. 

I’ll admit, I’m scared of the CT scan. The x-rays to make sure the pneumonia I had in April was gone were “clear as mud” to quote my primary care doctor. She wasn’t sure if it was yet another round of pneumonia or scarring from the previous two rounds. So, I got put on antibiotics. Again.

Funny how she’s prescribed them to me 7 times since the beginning of the year and never thought to check the status of my immune system.

But I digress. 

The other thing that I’m scared of is sounding like a whining little wimp when someone asks me how I’m doing and I give them an honest answer. Which today would have been “well, my right ear is clogging up again and I’m worried about it getting infected again because it might mean a hospitalisation for IV antibiotics since I just got off a round of super antibiotics for that same ear. I have a raging headache. I’m exhausted. My throat hurts. And I impaled where my upper lip meets my gums with my toothbrush last night and I’m in a disproportionate and increasing amount of pain. I’m also concerned about that getting infected too. But other than that, I’m fine, thanks for asking.”

But here’s the thing: I’m not wasting away to nothing, I’m still standing, still working, still able to form coherent sentences. I don’t look sick. And people really don’t believe me when I say I’m not feeling well. Except for Lord Imp, he believes me.

Sorry folks, but I have not only one but two major life processes that straight-up don’t work. Just because I’m not looking like I’m wasting away doesn’t mean that I’m fine. As a matter of fact, I’m far from it. But I keep on pushing. And why? Because I’m strong, and I take pride in that strength. I’m proving to myself that I have no limitations. Trust me, when I tell you that I can’t do something, there’s a reason for it. It upsets me greatly to have to turn things down because I’m not feeling well. But you wouldn’t know that, because all you see is someone who looks healthy and is turning you down.

Suck my tiny little lady balls

I really wish people would do some research. Yup, they still think I have something with an extra-long polysyllabic name. Fucking use Google. Ignore the several sites that say that I have a good chance of not making it to my 40s, they’re ominous and I don’t like thinking about it. I’m not looking for your pity, I’m just looking for you to understand what I’m going through, even if it’s just a little bit.

Sorry folks, but I’m really not all right.

 

Something Close to Normal

So here I am, snuggled up in my bedroom at my mother-in-law’s house. Baby Imp is sleeping in her Pack-N-Play at the foot of the bed, and I am glancing over to my right to my copy of 1491: New Revelations of the Americas Before Columbus thinking that maybe I should get to reading since I have two quizzes and a writing assignment on the first five chapters due a week from Friday.

In reality, I’m hiding out from the daycare kids.

I’m really trying to continue living life as close to normal as I possibly can, but I can’t help but be just a little more worried about getting sick when I’m around kids. I’ve been around these kids quite frequently for years and I haven’t died yet (obviously), but there’s a part of me that wonders if the next time will be what does me in, if the next illness will land me in the hospital, hooked up to a dozen machines and clinging to life.

I’ve been told on several occasions that I shouldn’t even be alive, and that I’m incredibly lucky. How much longer before my luck runs out?

Despite this fear in the back of my mind over coming down with something that as of late has bordered somewhat on paranoia, I am bound and determined to live life as normally as possible. Which, for the most part, involves being around people, and involves being around kids. Now, I will readily admit that I’m not a huge fan of children who are not my own, and to be honest the PIDD makes for a convenient excuse to excuse myself to my bedroom to avoid the chaos.

Granted, so does the homework that I should be doing instead of blogging.

But despite my determination to continue with life as though nothing has happened, there is still this little voice in the back of my mind that occasionally whispers “this isn’t a good idea” like a seductive temptress looking to get me to agree to something that I shouldn’t be doing. She has Laura Bailey’s voice (Fullmetal Alchemist Laura Bailey, not Skyrim Laura Bailey) and finishes off with a gentle kiss to my earlobe. I know that I should proceed with caution, and yet I press on, barreling forward without a care for what may come, bound and determined to not find myself living in a bubble of fear. Laura Bailey’s sultry voice leads me on because that ethereal temptress knows that this is what I want, what I yearn for, what I fight for, this normalcy that evades those of us who are immunodeficient, the ability to simply go out and to live. And I let her lead me, not because she has presented me with an offer that is just too good to refuse, but because I know that by not living, I am giving in. Giving in to the stigma that surrounds these disorders, that we live in a bubble, that our lives are lived in nothing but fear.

I refuse to allow the fear to envelop me, but I will admit that there are times when I wonder if what I’m doing is the right idea, if walking around the grocery store has the potential to be lethal. In the end, I know that the benefits outweigh the potential risks, that almond milk and cheese just aren’t going to buy themselves. But as I am wiping down the handle of the shopping cart with those Purell wipes grocery stores are now offering with some level of ubiquity bordering on fanaticism, I wonder if it is all for naught. Why wipe down the cart handle when someone in the baking aisle could possibly cough in my general direction while I’m fuming over the fact that once again they’re out of coconut flour, possibly transmitting whatever microbe is residing in their air passages and making me sick as a result?

In the end though, I have to go out to the store and buy that coconut flour, partly because I need it, partly because Lord Imp looks at me funny when I bring it home, and partly because I just need to be normal. And as far as I’m concerned, wiping down grocery cart handles and running the risk of another case of pneumonia are perfectly normal.

Sidenote: I still haven’t downloaded Dawnguard to the computer ever since Lord Imp noticed that Serana was voiced by the same person who did Lust. I just can’t look at that character the same anymore, and I now avoid the quests on the Xbox as well *shudder*.

 

 

 

Allow Me to Rage For a Minute

Who the HELL thinks it’s a good idea to bring a kid to daycare with a fever? Much less a kid who has been running a fever of 102 degrees and has a RASH?

Yes folks, someone brought in their kid with a likely case of MEASLES to my mother-in-law’s daycare.

Lord Imp has been exposed. He’s not allowed home until I get the green light from the immunologist. Fortunately, he’s had both rounds of MMR so he should be good to go, but I want a doctor’s OK first.

It’s not only me I have to worry about in this case, but Baby Imp as well. At 4 months, she’s far too young to receive her MMR vaccine. Thankfully, all the other kids in the daycare are all over the age of 2 and are all up-to-date on their shots, and should be immune to it.

But my mother-in-law has two grandchildren in the 4-month range. And unfortunately, she won’t be seeing Baby Imp for a couple of weeks while I ensure that there will be no outbreak as a result of this.

I don’t fault the mother for the child not being vaccinated, he only just turned one, had his first round of MMR done but not the second. Since there has to be at least 28 days between shots, it’s perfectly logical that he hasn’t seen round 2 yet. But I do fault her for thinking it was a good idea to bring a child with a FEVER to daycare. Regardless of what’s causing the fever, that’s not something to mess with.

Part of me feels bad for being as angry about this as I am. She had no idea what was going on until she brought the baby to the doctor. But given recent events, I am LIVID that I may not be able to see my husband this weekend, LIVID that he may not be able to see his daughter and LIVID that I may have to miss work this weekend because he’s in quarantine because I CANNOT be around someone who has been exposed to measles if they have no immunity. I am LIVID that someone thought that a fever high enough to be classified as measles was no big deal (according to the American Academy of Pediatric Dentistry, any fever over 102 – which is the low threshold for a measles diagnosis – should not be attributed to teething) and that it was okay to put them in daycare.

I was really hoping to avoid shouting that I have primary immune deficiency from a rooftop. Looks like I’m going to have to in order to keep stupid mistakes like this from happening. I feel like I need to put a big ol sign screaming “ANYTHING YOU CAN TRANSMIT TO LORD IMP YOU CAN TRANSMIT TO ME!! STAY AWAY IF UNWELL!!”

I really don’t want to live in a bubble. But it’s people like these making idiotic mistakes that make it so that I have to severely limit my life. And I don’t like that. Not one bit.

Sick and Tired of Being Sick and Tired.

I have always been exhausted. But I always had an excuse for it. 5 hours of homework. Partying. Working. Being a mother. Being sick. Always being sick. Now that I am one step closer to a medical reason that might explain my being tired, I am even more exhausted. It is just after 7, and I am ready to go back to bed.

Although, to be honest, I was never ready to get out of bed in the first place.

I woke up feeling the usual – meaning, not particularly well. My chest burned a little bit, I was coughing, and exhausted. But instead of just brushing it off and going about my morning like I have for so many years, I contemplated calling up the immunologist freaking out over chest pain and congestion that I have had in some level of perpetuity since I was 17 and went through my first bout of pneumonia.

I took my temperature twice before even walking out the door this morning – and one more time while I was at work.

I think I’m turning into one of those crazy bitches who call up doctors for every little itty bitty thing.

I don’t want to be that bitch.

I will say though that this new worry about being the crazy hypochondriac has replaced the worry that all the illnesses were in my head and I have just been imagining being ill. I had honestly gotten to the point where I was paranoid that all my symptoms were only in my head and manifesting themselves as physical symptoms. I had to keep telling myself that thermometers don’t lie, and neither do oxygen sensors – you are running a fever of 102 degrees and your oxygen levels are in the mid 80s. You can’t imagine that, nor can you make it up.

While it’s a relief that I’m not going crazy and developing a somatoform disorder, I now battle with the “do I call the doctor or don’t I?” debate. Thankfully, the chest pain cleared up, but I know that when I wake up in the morning, I will go through this all over again. I can’t wait to receive a final diagnosis so that I can start getting treatment. I want to feel well. I want to wake up feeling refreshed.

I am just so sick and tired of being sick and tired.