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It’s Hard Work Being Sick

Last month my normally indomitable dad got real sick with a bad chest infection. In the first case, this man who seems to exercise just as much as he sleeps, rarely gets sick. In the second, when he does get sick he usually gets over it real fast. This time that didn’t happen. He had to go on antibiotics and a bronchodilator (which he didn’t use much because it made him feel weird), miss work, and feel real lousy for a couple weeks. During this time we were having a text conversation- extended in time but limited in word count as is our way- and he said something that gave me a Loki moment: “Being sick is hard work!”

Now I was certainly not happy that my pops was so sick, but it was nice to feel understood by my nearly super-human dad. Being sick IS hard work. But that’s a hard thing to understand unless you’ve experienced it–which is why it’s so hard for healthy individuals to understand what life with chronic illness is really like. They wonder why some people with chronic illness can’t work, or if they can, only part-time; they think it laziness or *shudder* “fun” to spend the day in bed; they don’t understand when we can’t exercise, why we’re always so tired, or why we need so much rest… the list goes on and on. But luckily my dear-old-dad has the answer to them all–being sick is hard work!

Chronic illness is often a full-time job in itself.

A day in bed because of pain/sickness is by far more exhausting than a normal day up and about, and is NOT fun.

Dealing with constant pain/illness is exhausting. Ex. Haust. Ing.

Oh yeah and did I mention? Being sick is hard work!

It drives me crazy (somewhat literally) that I haven’t been able to work out basically at all this semester. You know what I have done though? I’ve had colds, migraines, stomach viruses, the flu, and 1, 2, 3 infections- including a sinus infection I’m dealing with right now. I miss running. I miss basketball. I miss being strong (although I never much cared for the lifting itself–picking things up and putting them down just isn’t that amusing to me). I miss even just being able to walk or bike or do yoga on a regular basis. (Hopefully I’ll soon be able to start the long, long climb into activity again, but it’s hard to build anything with constant interruptions from sickness).

It hurts my pride desperately that I’m not able to work. I want to be independent. I want to work. But right now school takes all I’ve got and more.

The thing is this: chronic illness is all the time. No break. It doesn’t matter if you’re out of juice physically or mentally–there are no time-outs, no subs. There is no choice but to keep going every hour of every day; no choice but to wake up every morning having to face the thing that almost broke you the day before–there is nothing but constant, relentless, hard work.

So for heaven’s sake don’t judge me if I need a nap 😉

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!