I was told, when I was accepted to Landmark, that I would be getting intensive OT/PT.
That turned out to be a lie.
The other lie came from Barnes-Jewish: that I was medically stable, and that I could go home.
I tried so HARD to tolerate J tube feeds. There was an unbelievable amount of bile and air coming from my G tube, and horrid burning twisting pain from my lower abdomen.
Sometimes, those with chronic illnesses have to retrace our steps. We search and search for other treatment options with our goals aimed toward to future. But sometimes what we need to pull forth into the future is hidden in the rubble of the past.
I came here to Landmark starving (according to blood work) dehydrated, and in a huge amount of pain and really, unable to move much myself. I came here with the goal of trying to stand, perhaps work on walking a few steps. I came to try to get my seizures under some semblance of control. Maybe even give my body the rest it has been begging for.
The second day here, a lunch tray was put in front of me. And a loud, frenzied panic escaped my mouth. I didn't know what to do with it. So badly, I wanted to test the mashed sweet potato. It's gastroparesis friendly, especially without butter, but have been warned over and over...my GI TRACT IS PARALYZED. There is a chance I could die from obstruction. They took it all away. It was not their goal to upset me so.
My wheelchair sat before me that night. I stared it down. All night, I felt that it was taunting me. If I could have gotten off the bed I would have, just to slam it again the cabinets and walls.
I felt powerless and angry.
When the doc rounded the next morning, and I asked the NPO order lifted. I wanted to try to eat. If walking g would not be achievable, perhaps limited PO intake could be the goal to focus on?
I picked a goal based on what I felt I could control. Walking or even standing could not be attained. Medicaid can kick me out any day or the middle of the night. Standing/Walking takes months and I have a few weeks at best.
But PO intake? Challenge Accepted.
I embarked on a mission, not sure if I would fail or not. I've been working a few days now. I can finish 7 tiny meals, with supplemental Vivonex tube feeds. Slowly, I may even be able to be 100% oral intake (8 small meals with smoothies and soups at the end of the day).
Wanna hear something funny? I have next to zero peristalsis. I can't eat a lot, and we are still working for enough by mouth to thrive.
But that is the difference. No matter how many times a scream and cry at my atrophied legs, they will not stand.
No matter how desperately I beg mito to leave my body, it won't.
I am achieving another thing that I thought would never, or could ever happen.
It doesn't matter that I cam here for one type of weakness and will probably conquer something unrelated...my body is all one system, and to me, even though my legs and midsection haven't improved and may not for a long, long time, I am achieving something equally as wonderful.
Despite certain attitudes that when shared get negative responses, and jokes that ask "and how long is this one gonna last...?"
I just this one area that does not pertain to my legs, but rather a cautious victory over an inability to eat and the scoff of others in the medical field...this is all by my choice
I am Standing Anyway