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aec8857

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About aec8857

  • Birthday 07/09/1996

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    Alabama/North Carolina

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  1. Hi all!! A bit of background - I first discovered this forum a while back when I was first looking into IV fluids for my POTS. I've since had a series of crazy good luck with super understanding and knowledgeable doctors (but bad luck with my health speeding downhill) and long story short, I now have a port and receive infusions five days a week. My question is in regards to the port - how many of you have one/any other visible medical device and how do you deal with it? I had to attend a family funeral over the weekend while accessed (we tried to avoid it but I've been in a crazy flare), and unfortunately part of my port was visible with the dress I was wearing. I had several comments made by family members essentially telling me to cover it up. My mother even told me it would scare the children, and my grandfather told me I should invest in clothing that keeps it covered. I want to talk to my mom about some of her comments but I don't even know if I have any right to be upset, like am I actually the one in the wrong here? I'm just pretty frustrated and could use some advice! Thanks y'all!!
  2. Hi there! New to the group here, and I have a question for anyone who uses IV fluids at home. I've been THROUGH it when it comes to different meds/treatment plans, but the only thing that honestly gets me to a point where I'm functioning well enough to be independent is after I get IV fluids at the ER. How did y'all end up with this option? Did you have to bring it up yourselves? Does someone come and set you up with the IV every time? I usually end up at the ER/urgent care/somewhere a couple of times a week and if I try and put it off it starts triggering my seizures which kick starts migraines (I won the genetic lottery, obviously). Any and all help would be so much appreciated!! I'm just about at a loss at this point...Thank you!!
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