Day 16: Back to reality, or some form of it.

Well, I’ve been at home for a full day now and let me say, it is such a bittersweet thing. Let me break it down for you.


  • I get to sleep in my own bed. 🙂
  • I get to sleep through the night without being woken up for mid-night vitals.
  • I get to be back in my own space, adorned with my things.
  • I get to breathe outside air and feel the sun on my face. 😀
  • I don’t have unexpected people constantly popping in and out of my room unannounced (e.g. nurses, cleaning staff, etc.).
  • I get to enjoy the gorgeous view of SF from my porch.
  • I get to bake in my own home!
  • I don’t have to pee in a jug and record the volume anymore.


  • I can’t go out into public spaces.
  • I can’t eat restaurant food until my doctor gives me the okay.
  • I still have little to no energy to do anything.
  • I don’t have HEPA-filtered, UV treated air flowing in my room constantly.
  • I have dietary restrictions.
  • I can’t bake any breads with yeast. 😦
  • I’m on a complicated medication schedule that has me taking meds 5 different times a day, which all have to be timed carefully with what I eat and how recently the last medications were taken.
  • I have to flush my Hickman lines daily. It’s a big ordeal.
  • I have to self-administer magnesium sulfate, IV. It takes two hours. No fun.
  • Trying to make my house more sterile, clean, and infection-proof with my dad.
  • Having my dad wait on me hand and foot.

I could go on. Needless to say, the cons list totally outweighs the pros. So while I’m glad to be home, there are so many more things to worry about and consider that almost make it not worth it. Regardless, I shouldn’t be complaining because I’m recovering faster than expected and I’m making great strides. I guess this is just another exercise in patience and perseverance.

Life at home has been pretty busy. Like I said, I’m on a pretty complicated medication schedule. I’m taking 7 different meds, each with different restrictions and timing requirements, and 1 IV drip of magnesium. Two of the drugs have to taken on an empty stomach (e.g. 1 hour before a meal or 2 hours after a meal) and they can’t be taken within 2 hours of any magnesium oral or IV, one drug has to be eaten with food, the magnesium IV drip takes two hours, one drug has to be taken once every 6-8 hours, other drugs have to be taken once every 12 hours, and one drug is only to be taken on the weekend once every 12 hours. Thank God I’m a planning guru and I’m able to figure out a consistent, working schedule. Otherwise I know I’d feel like I was drowning. My poor dad sure felt that way when he first got the drug list, but I reassured him that I would take care of it all.


So I’ve been busy. Busier than I want to be. Once I settle into a routine and start regaining energy I know I’ll be able to sprinkle in a fair amount of baking and other fun activities. It’s just a waiting game for now.

P.S. The alopecia is still happening. Despite all of my attempts to avoid the “patchy head” look, it’s inevitable. Oh well. I spend a solid 5-10 minutes in the shower everyday rubbing off all the hair I can. I just can’t wait for all of it to fall out.


Bye 1159. It’s been real.


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