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Of Ulcers and Life

Hello my friends! I know I’ve been neglecting you and for that I’m sorry. The funny thing is, during the summer I mostly felt crappy, and therefore didn’t feel like blogging. And then so far this fall semester I’ve been feeling pretty great, and so haven’t really felt like blogging…

But here I am. Back again. Like I said, so far this semester I’ve been feeling so good! I’ve only had one sinus infection and one cold; cold bugs have been flying around school like crazy, but miraculously, I’ve escaped them for the most part. In addition to regular school stuff, I’ve been able to walk and/or do yoga consistently for the last 2.5 months, and I’m working towards starting a run/walk program here in a couple months. My goal is to be able to jog a mile straight by my birthday–a very modest goal, but its something I haven’t been able to do since I was a brand-new 19-year-old–just before I got sick.

This semester I also (reluctantly) agreed to be the French tutor. I didn’t know how I’d be able to do it–I was afraid I’d have to cancel all the time and it’d be too much for me, etc. That’s another little miracle I’ve seen this semester: I’ve only had to cancel tutoring once. Once! And I’ve even moved from once a week to twice a week. Still, very, very modest hours (3 per week), but sometimes it feels like a lot all the same. But I’ve been blessed to be able to do it.

Now I don’t think I’ll be getting any awards for “greatest tutor” or anything–tutoring, like almost anything that includes human interaction, doesn’t exactly come naturally to me. Like the other night I had three students from French 1 and one from French 3 come in all at the same time, and I felt totally overwhelmed. But, in a way, I do feel that living with my nieces has prepared me somewhat for those kinds of situations–four students all wanting their own questions answered, etc. at the same time is kind of like having two to three toddlers talking to you and pulling on your finger, your pants, your arm. Someone wants a sippy cup refill, someone wants to show you something; someone wants to go over the homework, someone wants practice questions for the quiz…. You get the idea. The students are generally quieter and more patient though.

That’s part of what I wanted to write about today. The beauty, the blessings, the little miracles that have filled me to the bursting the last couple months. But strange as it may seem, I also wanted to write about ulcers–peptic ulcers, to be specific.

Ulcers are mainly what made me miserable this past summer–the ulcers themselves first, then the medicines to treat them and of course the avoidance of all NSAIDs–which enraged my migraines. Basically, my stomach stopped trying to kill me, but then my head took up the cause. But then my body adjusted, my ulcers seemed to heal, I was able to go off PPIs for a while–everything was awesome! Until about eh, a week or so ago. I started waking up in the night again with that feeling of a hole being burned in my stomach, and then it evolved from simple burning to straight-up knife-in-the-gut stabbing. And then my stomach started bothering me during the day as well as during the night. A couple days ago I finally admitted defeat and started back on the PPIs–but unlike in the summer, when they gave me almost instant relief, they don’t seem to be helping as much.

Basically my digestive system is very angry with me. And I’m not looking forward to going back to the doctor’s and starting the cycle again–the appointments, the tests, the “let’s try this” and “lets try that.” But I know I need to go, and so I will.

I get so tired of doctor’s appointments.

But let’s not end on that note… Let’s see…. A happy note to end on. Falls out here in the Blue Ridge Mountains are GORGEOUS. Seriously, it’s like living in a painting–the thousands of trees and their millions of leaves each a unique hue of yellow, orange or red. And then they fall off and dry out and make that amazing CRUNCH when you step on them. And the air gets crisp, but not to the point where it stings yet.

Yes. I think that’s a good spot to end.

5 Years of Ig Infusions

Last week I celebrated my 23rd birthday, which is hard to believe I know. The day before my birthday marked five years exactly since I had my first Ig infusion.

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I was diagnosed with a primary immunodeficiency towards the end of my senior year of high school, after many years of sickness, infections, tests and endless doctor’s appointments. As I think is typical, it took a while to get insurance approval for infusions and get set up with the specialty pharmacy.

Finally on June 17th 2013 an infusion nurse came to my home and gave me my first dose of IVIG. The next day I turned 18, and the day after that I graduated from high school. Before heading out to school that fall I started self-administered sub-q infusions. And now five years later here I am.

When I was diagnosed and told about Ig infusions I was excited, I was hopeful, but I didn’t know what to expect and honestly did not expect them to be as life changing as they have been. That first year I was on infusions I went almost an entire year without an infection; before I started them infections were almost constant. Since then other bodily incompetencies have brought me down a bit, but the infusions still help tremendously. ms-95DmfR

At some points over the last five years the realization that these infusions are life long
has been daunting. Sometimes on infusion night I’ll drag my feet. I’ll think, I just really don’t feel like doing this today. Then the thought that when I’m 30, 50, 70, 90–I’ll still be
doing these infusions, well that’s a bit of an exhausting thought.

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But the truth is, it’s just part of my life now. And man I am so grateful for that. It’s hard to believe I’ve been doing them for five years already. It’s gone by fast. Week by week, month by month, and suddenly five years have gone by. And though they’ve certainly had their rough spots, it’s been a great five years.

I look forward to the next 60-70ish years with my infusions–til death do us part.

Subcutaneous Ig Infusions Part Two: Infusing

Ok so here’s a video (well three technically) of me doing my subq Ig infusion. Below the videos I’ve outlined the steps to doing an at-home infusion. Happy infusing!

-I’m not sure why I’m upside down in the freeze frame but once you play the video I stop hanging from the ceiling-

In case you don’t have the patience to watch my awkwardness for the whole time (like me), or you missed something because of my mumbling and/or poor camera skills, here are the basic steps to doing an Ig infusion:

  1. Set out your supplies (needle set, tubing, syringes, mini spike, alcohol prep pads, gauze pads, Ig meds, etc.) on your sterile drape and/or mat. (Having taken your meds out of the fridge at least a couple hours earlier so it can get to room temp)
  2. Take any premeds.
  3. Choose your sites and apply numbing cream, with a tegaderm over it to keep it in place.
  4. Pull the cap off your Ig bottles and sterilize each with an alcohol prep pad.
  5. Attach your mini spike to the syringe and take off its cap.
  6. Stab through the rubber cap of your Ig bottle with the mini spike and draw the medicine into the syringe by pulling down on the plunger.
  7. Attach one end of the rate tubing to the needle set.
  8. Remove the mini spike from the syringe and attach the other end of the rate tubing to the top of the syringe.
  9. Prep the tubing by pushing down on the syringe until the medicine reaches your needles.
  10. Remove the tegaderm covering your numbing cream.
  11. Mark area where numbing cream is BEFORE wiping it off with an alcohol pad.
  12. Sterilize site (with alcohol wipe or other sterilizing technique provided by your pharmacy)
  13. Pull needle flaps back and pinch together then remove needle cap.
  14. Pinch skin and fat where you’re going to stick- pulling it up.
  15. Stick the needle in smoothly and quickly, keeping it straight- don’t insert at an angle, just straight in. If you have a hard time sticking take three breaths and then stick on the third exhale.
  16. Secure needle with tegaderm.
  17. Repeat for all sites.
  18. Once all needles are placed pull back on the syringe to check for blood drawback.
  19. If no blood comes into tubes you’re ready to go- place syringe in pump and turn it on!
  20. If you get blood coming back into one of your tubes- clamp off that site, remove the needle and infuse in your remaining sites.
  21. Once your infusion is done turn off the pump and take the syringe out of it, then remove your needles- put a bandaid on the site if it bleeds or leaks.
  22. Cut your needles off the rest of the tubing and place them in your sharps container.
  23. You’re done!

Subcutaneous Ig Infusions Part 1: Supplies

This past week I did my monthly order of my Ig meds (Gamunex-c right now) and supplies. Since I’ve been doing this once a month for nearly five years now, it is totally automatic. I know all the names of the supplies, the amounts I need, the sizes I need, etc. But as I was ordering this week I had a flashback moment as I was mechanically naming off the supplies I need in this month’s shipment to when I first started out–it was the weirdest thing learning all the special names for squares of plastic tape and the numbering of tube sizes and needle sizes. And I also remember it was a little overwhelming at first. So for today’s post I’m going to go over the basic supplies for a Subq Ig infusion.

Typical Subq Supplies List:

  • Premeds – Most people take premeds to help limit side effects from the infusion. The most common premeds are Benadryl and Tylenol. I use 25mg of Benadryl and 650mg of Tylenol.
    • Tylenol
    • Benadryl
  • Epipen – If you’re doing an infusion at home, whether it is IV or Subq, you have to have an epipen on hand in case of a severe reaction. When you’re being taught to do your home infusions, you will also be taught how to use the epipen.

  • Tegaderm – These clear, stretchy tape-like things are used to keep needles in place during the infusion.

  • Medical tape – You may have a variety of uses for the tape. I use some at the bottom of the tegaderm as extra help to keep the needle in place, even if the tubing gets caught on something.

  • Numbing cream – You put numbing cream on 20-60 minutes before your infusion in the places you are going to stick the needles. It helps it not to sting so much when the needle goes in.

  • Bandaids – I figured you wouldn’t need a picture. Often you’ll need to put a bandaid on each of your sites for a while after you’ve pulled the needles out at the end of the infusion.
  • Tubing – tubing, or rate tubing, controls the speed at which the medicine is pushed into your sites. Different numbers on the tubing correspond to either faster or slower rates. Right now I use F120 tubing, which is a pretty slow rate. When I was on Gammagard I used F900 tubing, which is much faster. It’s all a bit confusing at first but your nurse and specialty pharmacy will help you figure out which rate tubing is best for you.

  • Subcutaneous needle set – For a Subq infusion you can have anywhere from 1-6 or more needles. How many needles you need will depend on the medicine you’re on, the dosage, etc. I think it is pretty typical to start with a 4 needle set and increase or decrease depending on how your body handles it. In addition to the number of needles, there are also different size needles in length and gage (width). The typical length is 9mm. 6mm is for kids or people with very little body fat. 12mm can be used if you are having troubles with leaking. The typical gage of a Subq needle for Ig infusions is 27. Your doctor will typically order the size and gage they think best originally and then you can work with your specialty pharmacy to adjust as needed.

  • Syringes – These are what hold your medicine during the infusion. In setting up the infusion you draw your med from the bottle into one or more syringes, then you hook up the tubing to the syringe and put the syringe in the pump!
  • Mini spikes – These are what you use to draw your med from the bottle to the syringe(s).

  • Gauze pads – These have many uses, but they’re kinda like the tape or bandaids–pretty self explanatory.

  • Alcohol wipes – Also called alcohol prep pads, you use these to sanitize your skin before you stick the needle. You can also use them on surfaces to sanitize– like if you have a plastic mat instead of a sterile drape to set your stuff up on, you’d need to sanitize it with the alcohol wipes before each infusion.

  • Sterile drapes – These provide a sanitary surface for you to set up all your infusion stuff on.

  • Infusion pump – Your pump pushes the medicine into your tubing and through your needles into you! Seriously be grateful for your pump because pushing the syringe yourself for hours at a time would be super tiring.

  • Sharps container — At the end of your infusion you put your used needles in the sharps container. When your sharps container is full your specialty pharmacy usually has a prepaid box you ship it to their disposal facilities in.

Ok so I think I covered all the basic supplies you’ll be handling with your Subq infusions, but if you’re still confused no worries! This is just part 1 remember? I’ll have further posts about Subq infusions in the future as well as a video showing you how I do my infusion 😉 In the meantime, if you have ANY questions about Ig infusions please feel free to ask me! Comment, shoot me an email- whatever. I’d love to help you out if I can. You’re not alone!

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.

***

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.