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100 Days!

So this week I have reached approximately 100 days since I contracted Whooping Cough! I was sort of hoping that when I reached the 100th day all symptoms would magically disappear, but unfortunately it’s been a bit more complicated than that. Last week—finals week no less— I caught a bad cold, and as the internet warns, every time you catch a cold for a while after you’ve had Whooping Cough the cold will bring some fun coughing, choking, spitting up, wheezing  remnants of the original Whoop. So it has been 100 days and I’m still choke-coughing. But in between colds it really is getting better. I can’t wait for the day—hopefully not too far off now—that I will be able to stop taking my abuterol everyday, multiple times a day.

Despite the cold I made it through finals alright. I also made it to my parent’s AND to see Star Wars on the same day. I payed for that with a three day migraine though, which is why I didn’t get a post up earlier in the week.

My favorite part of Star Wars was the Porgs and the fact that my fifteen year old brother thought that they were begging for food from Chewbacca… Totally failing to recognize that he was eating one of them. Hahahaha.C316D75E-1D87-43DC-894B-4781729BF23F.gif

In a couple minutes I have to head to a follow-up with my neurologist, because what would Christmas break be without a few doctors appointments? When I get back I will relate the plan that he hopefully has to get my headaches more under control. They are much better than they were (constant), but 3-4 migraines per week is still not really where I’d like to be. And my family still refuses to decapitate me so I must look to more conventional methods of easing head pain.

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Yeah so I didn’t get to this yesterday after the appointment. My doctor was running an hour behind and so by the time I got home it was time for our family evening plans.

Other than the wait the appointment went well. Dr. L is also still not happy with where my migraines are. He decided to keep me on the Prozac at my current dose and add in a new med to the mix—Verapamil. Although the Prozac does help and is amazingly, wonderfully, unbelievably low on side-effects, he is worried that an increase in that would necessitate limiting my use of triptans so as to avoid Serotonin Syndrome. I can’t argue there. So today I will start Verapamil, which is a calcium-channel blocker. I’m definitely anxious, as I am whenever I start a new med (what horrors might it hold for me?!) but I’m also hopeful.

Dr. L has avoided beta and calcium-channel blockers with me so far because they can cause problems in people with asthma. Of the two, I think calcium-channel blockers are lower-risk for asthmatics. Also Dr. L noticed that my heart rate is often high—tis definitely true and I’m not sure why—so Verapamil might help with that too.

Basically Verapamil—like almost every med out there—may hold for me either the key to relief, OR a crap ton of misery.  Thankfully I get the chance to start it while I’m on break, when if things go awry it’s not as big of a hullabaloo.

So on that note… Merry Christmas! And if I don’t write again before 2018- Happy New Year!

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How to Hydrate for Your Ig Infusion

Hydration is key for Ig infusions, whether you’re doing IVIG of SCIG. I’ve learned this the hard way over the years. Once, I didn’t hydrate well enough before IVIG and my blood pressure plummeted so badly in response to the medicine that I almost ended up going for a ride in an ambulance. Now I do Subq infusions and while I don’t have the same problems with blood pressure taking a vacation, if I don’t hydrate extremely well before and during the infusion I get a serious migraine. So let’s compare some of the top hydration drinks with infusion prep in mind.

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After a couple years of experimentation my favorite is Low Calorie Gatorade. I like Sugar Free Powerade, but it doesn’t taste as good and the artificial sweetener tends to give me a headache. Pedialyte is my second go-to, but it definitely doesn’t taste as good as Gatorade. Each person is different so you’ll have to do some of your own experimenting. Happy hydrating!

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.