some days are better than others

there’s been some silence over the last few weeks on my part. it’s not that i dont have anything particularly special to say.. the truth is, it’s hard to post something positive when it’s not truly how im feeling and it’s not the state i’ve been living in.

i dont want to broadcast only and bring others down, when all small victories should be celebrated. but that’s just not the case and lately it’s very hard to be transparent. i desperately try to balance out my posts to encourage and help others, but sometimes i need to back away and just decompress, because going quiet is the only way i know how to cope. i know that’s not the greatest way to handle things, but we’re working on getting me more stable in that way.

a few weeks ago, after my endoscopy, when i had my esophagus stretched in quite a few places to help me swallow. it helped for about 2-3 days, but again i started having awful choking and vomiting episodes. when i would try to eat solid food, i would chew, chew, chew and still choke. and when things would go down, they would come up about an hour later – liquids included.

so i had a follow up with my GI team and they said that in my biopsies, things looked okay but my muscles were having a very hard time doing their job from my esophagus to my stomach, thus the nausea and vomiting. what i wasn’t expecting to hear was that i would be spending more months with my picc line in than we had originally planned. and now, i am on a strict blended and juiced diet until my tract sees massive improvements.

here is where my guilt steps in.. another summer spent not eating food. sticking to the same frozen foods, blended and or steamed and drinking all of my calories in order to try to get my muscles functioning enough to eat more of a solid food diet vs. soft mechanical or pureed diet.

immediately, you think of all the things you can’t do, right? mainly because of my central line. ive recently fought many infections, one in my face. because im constantly massively dehydrated, im still on 3-4 IV infusions per week because my body just cant keep up with fluid intake. with and increase in temperature here in WI lately, and more combos of antibiotics, i can’t go out in the sun for lengths of time. i dehydrate so much quicker in this weather and im truly exhausted but 12pm. i sleep from 12-15 hours a night right now because my body is so exhausted. this is quite the opposite of my norm of 3-4 hours of sleep a night.

because of my picc line, i cant get it wet, which is no easy task. by the time im ready for a shower, im exhausted and spent most of my time sitting in the shower on a chair. picc lines also mean no pool and lake time. im desperately wishing my current therapies will get me back on track in order to have my line gone by mid july to celebrate my birthday, but that doesn’t seem to be the case. for the time being, ill continue therapies via IV for the next 2 months and see where things have improved with my esophagus & gut.

right now, im traveling to the hospital for treatments and various appointments 3-5x a week. the weeks ive been there 5 days.. they get long. im thankful that i have support that sends notes of support. i have been blessed the past year, as i approach my next birthday i really have faith things will be better than they’ve ever been.

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One thought on “some days are better than others

  1. Many prayers sent. I hope things start to get better soon. Don’t worry about being negative on your blog.

    There is power in our stories…if we share them.

    I find that it helps me if I know that 1 person might read it and it lets them see that they are not the only 1 struggling.

    That is what this post did for me!

    Like

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