I don't know how time has been flying so fast. I want it to slow down, especially since I am now on limited time. I have tried to keep busy but have gotten to a point that things are just too exhausting and so I am staying home more, which I am ok with if it wasn't so dang hot. My swamp cooler just can't keep up with the heat and I end up just sweating like crazy. No fun.
Medically there are a few new things. I am not on oxygen 24/7 and I can tell a big difference in how I feel. I have portable tanks but they have proved to be hard to lug around so I don't venture out too much with them. I also am retaining/producing a lot of fluid and had it all drained off a week ago. They pulled off 6.6 liters/14lbs of fluid. To say I was uncomfortable going in is an understatement. I looked easily 5 months pregnant. I have built up almost that much again and am schedule to have a permanent drain placed tomorrow. It will be good to be able to drain at home and not get to this uncomfortable point. Not looking forward to the placement of it, but it should be quick. The fluid buildup is just a sign that my organs aren't working how they are supposed to, that things are progressing and not in a good way. This is when I know too much and try and not get my head too wrapped up in it all.
I have had a couple get togethers with friends and family so that is nice, but like I said it is proving to be too troublesome and uncomfortable to do that anymore. So now I welcome visitors on my big red couch and we have good conversations and maybe some food or drink.
Here's the photo recap of the last week or so:
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| Officially on Oxygen |
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| My old school crew visiting at the farmers market |
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| Morgan; one of the many who have made the trip out to see me |
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| 6.6 Liters of fluid/14lbs lighter |
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| My best friend forever |
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| My godbabies and whole heart |
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| Got them "A" bracelets so they can remember me, still a bit big but they will grow into them |
Also my #melafreakinoma shirts are still available for 3 more weeks
booster.com/melafreakinoma3 or I have a new one that's for Reckless Optimism
booster.com/recklessoptimism Both help fund my end of life care as well as my celebration of life. My GoFundMe is still open as well
gofundme.com/neverquitalexis
oxoxoxox
We will never meet, but I think of you, have been inspired by you, and pray for you often. Thank you for sharing your beautiful life.
ReplyDeletePhilippians 4:7 "And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus."