Can I Come Home Yet? Hospital Days of September.

This was the Friday before last at the T-Mobile store, about an hour before I ended up in the emergency room. This, as my mother documented, is what I look like when I’m 100% out of spoons.


Just give me my f*cking memory card, please. So I can go back and sleep in the car.

This is the second weekend in a row that I’ve spent in the hospital. And I have to tell you, it’s been a pretty shitty two weeks. First my heart medicine was off, then my stomach medicine, then my body pretty much just refused to keep working. And I can guarantee you it didn’t care that I haven’t worked in a few weeks, or that I finally had some promising client meetings—it didn’t care that Rush Hashana was starting today, or that R.J’s birthday is on Tuesday. Nope, it was going to happen anyways.

So I’m trying to look on the bright side of things.

Like that my concierge doctor helped me to once again bypass the standard ER chaos.

The ER is the worst place you’ll ever actually want to be. And after forty straight minutes of dry heaving on Friday morning—I really wanted to be there. They were able to give me some medicine right away to help calm down my stomach and the straining muscles that were getting a pretty serious work out trying to eject the single pretzel I had snacked on. After the Ativan shot it all got pretty hazy, but I’m pretty sure we were only down there for about an hour.

Look at that beautiful IV!


Even though I had to share a room, I ended up with an awesome roommate.

I ended up rooming with another girl who I could exchange horror stories with. She was a Crohn’s patient—and a mom, which, as you can read below—always amazes me to meet. It’s hard enough managing your own dysfunctional body, raising children while living in one kind of blows my mind. It shouldn’t, because my mom had fibromyalgia and was taking care of my sister and I when we were screaming 5-year-olds before she had any coping techniques to handle the exhaustion. I think it’s good to have someone understanding who can really hear you when you vent about the stress and disappointment of chronic illness, but it’s also pretty inspiring to see just how much other people can do despite the obstacles their disease sticks them with. (She also wasn’t anything like my last hospital roommate who blared Law and Order on her bedside TV all freaking night so I had to listen to people being murdered while I was trying to temper a migraine.)

I had visitors.

As a matter of reality, most of the time I’m in the hospital I don’t get visitors. It’s not something I usually take personally, but sometimes it can be a downer. It’s not that people don’t visit because they don’t care/don’t like me/ I smell bad, I think it’s mostly that me being in the hospital is such a freaking frequent occurrence that most of the time it’s just not a big deal. And even if another friend was in the hospital for the exact same reason I was last week, it would still be less of a big deal for me than it would be for them. This time however, besides Mom, R.J, and Alan—I also had my grandparents and my friend, Margo visit.

Happy is going to flip out over this singing stuffed puppy when I get home! Thanks grandpa and judy!

And sometimes just get a singing stuffed animal, or gossiping with a friend for 20 minutes can make all the difference in the world when it comes to your attitude towards your disease. When I’m here I get so disconnected from my social life, I get really scared I won’t have any friends to come back to after I get out of the hospital. So knowing they’re still there, still wanting to hang out is a big relief.


Cherry Ices and Painkillers.

Need I say more?

My boys <3

Getting out.

After two weeks in and out of the hospital I only want a few things. I want to take a hot bath. I want to put on my clothes without having to disconnect an IV. I want snuggle up with R.J and Happy and watch Breaking Bad. Being home in your own bed after sleeping in the hospital is the best.


So can I ask? How long are you supposed to try and get used to it before you’re allowed to look up and believe it’s all just a phase?




EDIT: Some of the phrasing/spelling was a little off in this entry. Sorry, but there was a whole, crazy party going on in my IV the day I posted.



  • Gary Peach

    Hi Llana,

    It was really good to read this, especially the bold bit at the end as I’m currently having a hard time accepting that my life is falling about my ears and being told to just “go with your new you”.

    The physicist in me also liked the small infinity lol 🙂

    Keep it up girly… sending you sleep that my body can’t use in the hope of at least a few brighter days here and there.for you – thanks for spending spoons on sharing this x

  • It took me literally years to accept that once my illness had gotten really bad, my life mightn’t ever be quite the same as it was before. Literally YEARS! But maybe I’m a bit slow… 😉

    The first time things got really bad, I spent over six months in bed, had two big scary operations… and still, my biggest priority was battling my way back to being ‘well’. I did get there. After a six-month physical rehab program and ‘gradual return to work’ (aka finishing my Masters, since in the IT industry, there’s not really any such thing as part-time), I was actually working full-time again, and having some semblance of a social life as well! Yay! I got back to being about as fit as I’ve ever been, which is saying something ‘cos I’m a former gymnast… got a great new job… was traveling all over to see clients…

    And then I had another major flareup, only a year after I’d gotten over the last one.

    That was pretty much when I had to deal with the new reality; if fighting as hard as I had to get ‘better’ had only given me a single year of good health, maybe it didn’t make sense to fight it quite so hard. It was then that I started to accept some of my physical limitations instead of railing against them all the time.

    I haven’t had a regular job since then, mostly because I haven’t found an employer flexible enough to let me drag a laptop into bed and keep working on the bad days. There are times when that makes me want to scream, still, because I worked so hard to have the career I did, and just when I got to the point of being qualified to do the things I really wanted to, my health crapped out on me and I couldn’t do it after all. Very frustrating. But I’ve done a bunch of other things: been a semi-successful blogger, had my own startup, done some really interesting freelance and volunteer projects… I’m in Peru now, house-sitting and doing some work with an NGO, which is good. (In case travel’s one of the life plans your illness might get in the way of, I wrote a long post about traveling with a ‘disability’ recently; link is above.)

    Not sure there’s an easy answer to your question. I hope it is just a phase and your health improves again… but if not, getting used to it is something that does happen eventually. You don’t really have to do anything; after living it long enough, the ‘new normal’ does actually feel normal.

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