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How different generations living with SMA can teach one another

Meet Regina and Al. Their friendship and respect for one another all started at a fundraiser before a Phillies baseball game in 2019. “I watched Regina give a beautiful speech at the event about her recently diagnosed son, Shane,” recalled Al. “I thought to myself, ‘My friends at Cure SMA need to meet this amazing mom and get her involved.’”


This topic has 2 replies, 3 voices, and was last updated 11 months, 3 weeks ago by DeAnn R.

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    • #20294
      Brianna Albers
      Keymaster

      Hi everyone!

      My column for the month of August went up yesterday. If you follow me on Instagram, you’ll know that I’ve been having trouble with lab technicians lately. As part of my Accutane regimen, I have to get monthly pregnancy tests. I opted to do these via bloodwork as opposed to urine samples.

      No one listens to me when I request finger pokes. Every time I do bloodwork, I have to sit through tourniquets and hot packs and disgruntled remarks about my terrible veins. I’ve decided that, going forward, when lab techs ask if they can just “take a peek,” I won’t give them permission. I know my body best. Finger pokes are the best way to get the blood that’s needed.

      I messaged my PCP yesterday and asked if she can put a note in my chart. Maybe she could say something along the lines of: “Listen to Brianna, she knows what she’s talking about.” We’ll see. I keep y’all updated.

      How do you advocate for yourself when it comes to healthcare?

    • #20318
      Halsey Blocher
      Participant

      I think it is great that you’re standing up for yourself and reminding people that there is no one who knows you and your body better than you do! They might not like it, but at least they might understand better when they realize you were right.

      Most of the times I need to advocate for myself are related to nursing care. Currently, I use a really great home care company that we have built a good relationship with but that has not always been the case. With some off  the companies I’ve tried in the past, I didn’t have as much freedom to choose my own staff and they didn’t understand why I would refuse to let people that weren’t a good fit/shouldn’t be nurses work in my home. They would get really mad and just try to send another random warm body without thinking about whether they do well or giving me a chance to properly meet and train them. We ended up having to really put our feet down, but eventually we ended up with a really awesome staff and a much better company!

    • #20340
      DeAnn R
      Keymaster

      Getting blood drawn is a nightmare! I never know if I should warn them I’m a difficult poke or not. Usually I can’t get away with a finger poke unless I’m in the hospital and they’re tired of vein searching. The finger poke thing worked against me during a hospital stay though. My potassium levels would fluctuate too much. Finally I figured out my levels came back low (or high I don’t remember) when they did a finger poke. When they wanted to do something about it I told them to recheck with blood from a vein first. They did and low and behold it was good.

      Hate when people think they know better though. Sometimes I just let them try so I can prove them wrong and I can have the “told ya so” moment. Especially with PCA’s.

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