It’s weird. Usually when I leave the hospital, I feel weak but I feel… better than I did?
I’m not feeling as bad as I did when I went in, but I’m not feeling as much better as I usually do. I’m wishing they left me on the IV steroids longer than they had, instead of switching me straight to oral so quick.
A lot of the “feeling better” in hospitals is artificial. It’s not hard to feel better when they make an immediate medical response to every symptom. Feel nauseated – BAM – IV anti-emetics, feel pain _BAM- sub Q dilaudid.
They bring you food at regular intervals, they keep you to a regular pill schedule, hell, you don’t have to get out of bed to get the medicine you need. There is no effort greater than pushing a button to get from feeling bad to feeling better. The nurses even bring you blankets from a heater if you are feeling cold.
At home, even if you have the means to make yourself feel better, it’s more effort. There’s a longer delay between feeling bad to better, which means you spend more of your time feeling bad then you otherwise would. This includes the fact that unless your putting the meds straight in the vein like they do at hospitals, there is a longer processing time for everything else. Yes, there is still prep work involved in getting the medication ready, but it’s not your work.
I’m expected to make the judgement of whether my home meds are enough to keep me through, without any ability to test it, except by going home. I can’t exactly pull out a bong to see if I’m ok replacing the quick help of IV Zofran and dilaudid with the quick but not quite as effective help of mmj. Doctors don’t really understand. They talk about “well we have to get you something that helps at home” which is all well and good, but I can’t know if something is going to be enough until I try it and you’ve taken away my ability to do so. And pushing stuff I know isn’t going to work on me so that I make that decision faster, isn’t going to help anyone. If oral dilaudid doesn’t work for me, it isn’t going to suddenly start working just because you want it to.
What do I wish?
I wish that they could send me home with IV solumedrol. I can deal even with extreme pain and nausea for a while if I know I am getting better. As much as I hate being on steroids, they work. They make me feel less like death, for the time that I’m on them.
If I start getting a little worse when outside the hospital, if I’m not absorbing as much of the steroid as I should once at home, then I don’t know that I’m actually getting better.
Getting the IV solumedrol at home could mean more effective treatment for longer, which could mean that I get better more. Taking oral prednisone, I’m always wondering how effective it really is? If I’m not reduced from inflammation enough, how do I know that I’m getting the full dose I’m supposed to be? How do I know I’m not tapering too fast because I need to take 40 mg just to get 25?
When I talked to them about the possibility at the hospital, they made some remark about it being dangerous to keep people on IV solumedrol for longer than 3 days or some such thing. Interesting that that has never been a concern before. Interesting that I know more than one person who has taken solumedrol for long periods of time anyway.
I left the hospital because a. Doctors weren’t listening to me or engaging with me. They weren’t trying to make me feel better, they were trying to get me home as fast as they could. They actually admitted that.
b. No way I was going to let Alyssa face this weekend by herself.
c. I have an appointment with my actual GI in two weeks. I’m going to track exactly how I feel over the next two weeks and start seriously bringing up the ideas of additional treatment.
d. Being in the hospital is bad enough when you think they are actually doing something to help. Once you realize they’re just trying to get rid of you, it’s hard not to feel like even more of a burden then you usually do.
If they’re not motivated enough to figure out exactly what is going on, at least they know enough to figure out how to shut it down. It’s time to stop being gentle about it and start going at this thing with a battle axe. Once it surrenders then we can show mercy, but I can’t handle having to be admitted every 2 months just to get a band-aid.
If you have to admit me for longer to get aggressive. Do it.
If it means starving me for a couple of weeks while you run endless tests, keeping me in isolation so you can nuke my immune system. Do it.
Just do something, because I’m sick of this pussyfooting around that has been leaving me with a half-life. I’m sick of sitting around watching my ankles swell trying to decide whether or not I am bad enough yet to go back in.
No more unicorns blood.