I got out of the hospital a week ago now and I’ve managed to stay out for the week – woo hooo – Me 1 Gastroparesis 0, for this week at least. Well that’s not entirely true the week has been a very difficult one, the first 3 days home I was so sick still, and so weak that I barely lifted myself out of bed. I’ve lost 43 pounds in the last 60 days and my body is using my muscle as fuel, and that is exhausting. Then couple that with the mental angst of knowing there are 20-million things that I “need to do” and/or “want to do” and laying in the bed fully aware of all of them and unable to barely be able to take a shower without needing a nap, it’s been a hard week.
I was still feeding via the tube when I came home, but that’s not been working out so well either. In order to get a sufficient number of calories and enough nutrition to claim “health” I need to feed at a rate of 60 for 22-24 hours/day. I’ve been able to tolerate a rate of 20 for about 5 hours at a time, nothing more; and not nearly enough to stay healthy. Once I felt that I was getting a little more motility I started trying to add some protein by mouth and that’s been helpful. I’ve still gotten sick, but only sometimes not 100% of the time; and as I write this note I’ve only gotten sick once in the last 48 hours which is a huge accomplishment for me right now.
The last two months have been hell, and a STARK reminder of why I AM on disability and what having this condition really means. The reality is that I might have six months of “pretty good days”, but when the bad times come I literally cannot function and who’s hiring THAT kind of reliability. I often find myself fantasizing about just getting a job and forgetting all about this disability junk when I’m having strings of “good days” but then alas – here we are again. The reality of this last month that I spent in the hospital is that there is “nothing more they can do for me”. The only POSSIBLE option for me is the pacemaker, and at the moment my insurance and financial situations preclude that from even being a consideration for me. That’s all that’s left though, the rest of the time in the hospital they are doing nothing to “fix me” or to “help me”, they are literally giving me I.V. medications and nutrition to get me through the “rough times” and sending me home to try my best.
To say that I am frustrated would be a huge understatement, I’m BEYOND frustrated at the current moment. I’m also scared, I’d be “okay” with losing about 10 more pounds (and I’m grateful that I gained this weight when I was doing better so that I could lose it without starving), but after these next ten pounds is when I get to the point that I start to look like I’m starving to death. Now in reality I’m just now in the “met life table” of “okay weight” for my height, but I weighed 550 pounds at one point, I’m here to tell you that 145 pounds makes me LITERALLY look like I’m on my death bed. Ironic isn’t it? The whole time I was obese – truly OBESE I wanted nothing more than to be THIN. Now I only want HEALTH, I DON’T want to lose anymore weight; I would not even mind gaining back 10-15 pounds if it was muscle. If I was strong enough to go out for a walk, and “function” I’d be happy to go back up a pant size. I guess I’m the classic example of be careful what you wish for, it’s sad really. I’m here to tell you that “Thin” is not pretty when you are sick and malnourished, and it still blows my mind when I see people and they say “omg you look so GOOD”. Is that really how we function as a society, that it’s SO important to be THIN instead of FAT that even though I’m starving to death, sick malnourished and unable to function physically i still look so much better just because I’m “thin”…interesting thought for the day right!? Well as always thanks for reading, here’s to hoping that my physical improves and I’m able to get back on track with some things like this blog. Thank you for stopping by and I’ll be back soon, much love.