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Hospital stay #11

I knew it was coming.

I've been here for about 25 hours now. My TSH higher than 305, free T4 .07 (so basically, I don't have any), and my heart is working too hard to keep my body going without help. I've severely anemic. Oxygen saturation is puzzling - it drops to a low number but then rebounds, as though saying, "So she stops breathing randomly. Huh. But she is NOT dying like this. Nope. Well, maybe... well, nope, never mind." So it will go from nothing much to 96 (within normal limits) within a minute. No one can explain it. All they know is that I'm fighting. My body is fighting harder than I can comprehend. I'm hooked to every monitor there is, watching the outside world, sleeping randomly and without warning (never well at night, but always throughout the day), and counseling the nurses who are awake with me as they fight through their rough marriages, their exhaustion, their sadness about missing their kids. I'd rather be kind and helpful than isolate in this isolating place. There isn't time to push the world away, not now. And it's not just some full-of-it sense of "you're strong!" or "you're doing the right thing by helping others." It's not like that. It's more that while I'm still here, and when my brain has those waking moments to be kind - it wants to be kind. Why should my death be more important than someone else's suffering? We all suffer. Why not choose to be kind if we still can be?

So I'll be here, smiling with nurses, asking questions to every doctor, trying to breathe and type, and pretending like it's all going to be okay, 1500 mcg of IV Synthroid and a lot of other meds later. It won't be, not ultimately, but if I can tell my brain that it will be, maybe I can buy more time.

Comments

( 18 comments — Leave a comment )
howlin_wolf_66
Sep. 26th, 2014 01:42 pm (UTC)
*hugs* <3 xxx

Wishing you as much time as possible!
oneonthefence
Sep. 26th, 2014 05:59 pm (UTC)
*hugs* xoxo <3

Thanks. I'm wishing for it, too. Still in the hospital, and will be for - I don't know how long. No one knows yet. :/
faerie_spark
Sep. 26th, 2014 02:18 pm (UTC)
It's weird how it's so much easier to sleep during the day than at night when one's body or mind (or both) are in any sort of crisis.

Makes total sense that you'd seek that connectedness with the nurses.


Sending gentle thoughts.
oneonthefence
Sep. 26th, 2014 06:00 pm (UTC)
Oh, yeah. I slept better this morning (9 am to 1 pm) than all night. I guess exhaustion just hit and my mind shut back off for a bit. And this definitely counts as a crisis...

Thanks. And thanks for the good thoughts, too.
faerie_spark
Sep. 28th, 2014 07:00 pm (UTC)
You're welcome. Haven't seen a post from you in a few days. Still thinking about you.
oneonthefence
Sep. 28th, 2014 08:10 pm (UTC)
Thanks. I'm back home and okay. I realize I don't post on here much, but probably should if something medical is occurring - especially if it's good (such as coming home). So all is as well as it's going to be for the time being. Thanks again for thinking about me.
faerie_spark
Sep. 28th, 2014 08:47 pm (UTC)
Being home generally feels so much better than the hospital, even if nothing else has noticeably changed. Glad you're back home.
oneonthefence
Sep. 28th, 2014 08:57 pm (UTC)
Very true! And thank you. I'm glad to be back, too.
sammason
Sep. 26th, 2014 06:08 pm (UTC)
This is to reiterate what I said on your GoFundMe page. You're fighting for your life and you're doing it so kindly. Good for you, Mandi. I bet those nurses love it when they get chance to spend time with you.
oneonthefence
Sep. 26th, 2014 07:17 pm (UTC)
Thank you so much, friend. I'm really trying. And oftentimes, the nurses are so much kinder - and spend more time with me - than the doctors, who run in and out, not knowing what to do, and making me feel more like a ticking time bomb. It's such a mess. So I'm trying to be kind, keep breathing, and figure out the best way to live with what I have. *hugs*
sammason
Sep. 27th, 2014 02:45 am (UTC)
These sound like the old-fashioned kind of nurse. The kind who believe their role is about caring for the patient.
oneonthefence
Sep. 28th, 2014 02:11 am (UTC)
I did have a few of those, which was wonderful. Luckily, I'm back home now, and even though I don't have 24 hour care, I'd much rather be here, on my own couch, with Toby by my side. :)
sammason
Sep. 28th, 2014 08:48 am (UTC)
When will you see James? Soon I hope, without risk to him.
oneonthefence
Sep. 28th, 2014 09:47 am (UTC)
He's been with my parents at the beach since Wednesday - a trip Toby and I wanted to go on, of course, but it wouldn't have been practical with my health - and will be home tomorrow night. I'm not feeling great, but I doubt I'm contagious in any way, and since I'm mobile and breathing most of the time, I look forward to seeing him around 6 or 7 pm. I'm glad that's only 13 hours away!
alumiere
Sep. 26th, 2014 10:38 pm (UTC)
I suspect you've already asked this, but in case you haven't, why not cytomel (synthetic T4)? My body makes but doesn't properly process T3 and after years of increasing doses of synthroid, I finally got switched to cytomel twice a day and started to even out.

Hugs and my fingers are crossed for you!
oneonthefence
Sep. 28th, 2014 02:14 am (UTC)
A fair question. :) I have tried Cytomel - I've tried all of them, actually - but I had a horrible reaction to it. It made me sleep even more (than the 15 hours I usually conk out...) and caused suicidal thoughts and visions, so I had to stop. Unfortunately, nothing else is seeming to work. So now, we're trying the 900 mcg oral, because if I can even get 90 mcg through, it's better than 0. My T4 and T3 don't reflect any changes yet, but I'll find out next week. Everything is definitely week by week - or day by day - right now. But I've been on Synthroid, Tirosint, Cytomel, Levoxyl, etc since 2009, and my TSH has always been 80 or above. It's frustrating. :/

*hugs* to you, too. And thanks. :)
rayofblacklight
Sep. 26th, 2014 11:55 pm (UTC)
<3 you and thinking of you
--Sarah
oneonthefence
Sep. 28th, 2014 02:15 am (UTC)
<3 to you, too. We just came home today. :)
( 18 comments — Leave a comment )