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A Day in the Life of this Zebra

Something kind of surprising that I’ve had several people tell me since I started this blog is that it has been “eye opening.” I guess that’s strange to me because, well, it’s nothing new for me. I sometimes forget that I’m a zebra living in a world of horses; when I hear other students talking about their Friday night plans I automatically think “Sillys. They’re forgetting that it’s infusion night tonight;” when I spend all of my breaks bouncing between doctors appointments, I forget that, that’s not the purpose of school breaks for everyone. Some people can’t imagine what it is like to have a malfunctioning immune system or a head that is always hurting–I can’t imagine what life would be like without them. So whether you’re a horse wondering how a zebra spends her days, or a zebra wondering if you’re the only one, here’s a day in the life of this zebra. (This is a Monday from a couple of weeks ago, but still overall a pretty good representation of an average day)

Monday 8:30 am

I wake up even though my first class isn’t til 10:00. I don’t like having to rush in the morning.

I start my day with cranberry juice and emergen-c. Mostly to prevent UTIs but also just as an immune booster. Then I get dressed (with thermals underneath my clothes because I’m already that cold), etc. and have breakfast.

9:50 am

I’m off to Fundamentals of Creative Writing. Today we are workshoping our poem #2 for our poetry portfolio. Maybe I’ll let you guys see it once I’ve revised.

11:00 am

Creative Writing is over. Normally I’d be heading home but instead I have to go make up the French test I missed on Friday because I had a bad migraine.

12:00 pm

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Home again home again. If niece number two isn’t already asleep then I’ll probably sitdown to do a nap time with her. Nap time with this aunty means we snuggle on the couch watching simple songs on YouTube until she falls asleep. Then I either do homework or also fall asleep.

1:00 pm

Nap time is over. I’ll grab a quick lunch and then head off to French.

1:30 pm

French. We’re starting a new chapter today. I’ll also find out how I did on the test. I hope I did ok–it was hard studying this weekend with a migraine/migraine hangover. (I missed one question, but all things considered I’ll take that quite happily).

2:30 pm

French is fini and now I’m off to Approaches to Literature. We just finished reading the Tempest. Now I think we will be writing a paper about it. Woot woot.

3:30 pm

Done with classes for the day! I head home and change into sweatpants and a hoodie. I sit down to steam and watch Netflix for a bit. Probably the Great British Baking Show since they just put up a new season. Steaming helps prevent sinus infections and also seems to help ease the aching of my head/face.

4:15 pm

Now that I’ve taken a break it’s time to get down to business, as it were. Let’s see what should I start with? Probably the essay for WWI Lit that’s due tomorrow that I haven’t started…

5:00 pm

Been working for 45 minutes, made decent progress. I deserve a break. So I go out to the living room to see the girlies for a minute.

5:15 pm

Ok back to work. I can do this. I want to finish the rough draft so I don’t have that much to do tomorrow, though it’s not due til midnight.

7:00 pm

Whether or not the rough draft is finished, I can’t think in cohesive sentences anymore. Time for a dinner break.

7:30 pm

For niece number one it’s time for a pre-bedtime breakdown. For me it’s time to choose which is more important– my French hw or finishing my WWI Lit reading for tomorrow. I think I’ll go for the reading. Takes less brain power and by this point my head is hurting at least medium from looking at a screen for so long writing the essay. So I get comfy and dive into All Quiet on the Western Front.

8:15-8:30ish pm

Either I’m finished with the reading or my brain is finished for the day–either way it’s time for some healthy hot cocoa (raw cocoa powder, honey, cinnamon, turmeric, pink salt and a touch of grass fed butter) and an episode of Stranger Things. My sibs have already finished the new season but they’re watching it again with me so I can get caught up. I only have two episodes left!

9:15ish pm

The first episode is over. Now I have to use all my willpower to tear myself away in the 15 seconds before Netflix starts the next one and I’m committed to another 45 minutes. Time to hop in the shower.

9:45ish pm

Shower done. Now time to clean out my sinuses with the neti pot thing and do my nightly stretching. As you can see I spend a decent amount of time each day just trying to prevent sinus infections, which are my bane.

10:15 pm

Take melatonin. Read. Pray. Brush teeth, etc. Fill up humidifier for the night. Set alarm for tomorrow. Take cough medicine. Rub Vicks vapor rub on chest (been doing the last two ever since I got whooping cough in Sept). Lights out by 11:30.

 

Good News Annie, You Can Stay

Annie is a cat, not a person. It didn’t actually occur to me to ask them to test for an allergy to other people. I’ll have to look into that some time. It seems likely, especially an allergy to people who *gasp* don’t like Harry Potter or chocolate or other extremely important things.

Just in case that introductory paragraph didn’t make things crystal clear–I had skin allergy testing done Tuesday. Technically, redone, since I was also tested my senior year of high school. The first time everything was negative. Initially it was a let down, but it turned out to be a good thing because it enabled us to do further immune system testing…which led to my PI diagnosis.

This summer I reluctantly asked Dr. C if we could repeat the skin testing. I was kind of embarrassed to even ask, since I’ve had so much allergy testing done over the years and it’s almost always been negative. But my recurrent sinus infections and everything-resistant nasal congestion this year made me desperate enough to venture once again down that allergy avenue of insanity–doing the same tests over and over again and expecting a different result.

Well I didn’t really expect a different result. I fully expected it all to be negative. I expected this because I secretly hoped that something would be positive; I’ve found it best in the medical world to expect the exact opposite of what you hope for, so that it’s a little less demoralizing when your hopes once again fail to be realized. That may seem rather pessimistic, but it doesn’t really matter–I can never fully manage it anyways. No matter how many times I’ve been disappointed, it’s awful hard not to hope.

So when the nurse exclaimed, “Dang. One of them is trying to start reacting already!” before she walked out of the room I fought it. It probably will go back down before the fifteen minutes are up, I thought. That itching is probably just the histamine control. No, bad hope! Get back where you belong–outside of the Dr.’s office!

Hope must be a cat because it never listens. Even as I sat there freezing in my little paper gown and reading about poor Edmond Dantès and all his hopes being destroyed I couldn’t control it–hope settled in on my chest purring and kneading me repeatedly with its sharp, little claws. What if? it purred to me. What if?

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Well hope you little rebel, you were right this time. I reacted to one thing–the Aspergillus Mold. And really, I might add, I did a pretty thorough job of it.

The bad news is that Aspergillus Mold is a primarily outdoor mold that is just about everywhere all the time in Virginia. The good news is that I get to try allergy shots for it! Naturally, I expect that the allergy shots won’t help that much…because I secretly hope that they will help both my sinus infections and migraines a lot.

To prove to myself how little stock I was putting in the allergy shots, I kept my ENT appointment for yesterday. Unfortunately that kind of backfired because after hearing about the results of the allergy testing the ENT told me I definitely needed to do the allergy shots and then patted himself on the back for a job well done. So it was a bit of a wasted appointment, except perhaps, for the ENT since he got to feel very accomplished over doing absolutely nothing.