Guest Post: Being Your Own Medical Advocate

I am thrilled to welcome my friend Hannah Vaughn Setzer as a guest blogger today. We haven’t known each other long, but almost as soon as we met, we knew we had many things in common: love of social media, interest in fitness, and a desire to help people understand challenges people face in navigating the world of health care. Thank you, Hannah, I hope you’ll share more with us in the future.

Being Your Own Medical Advocate

This is a tough one. I’m not a parent. I believe with my whole heart that my parents and doctors made the best decisions they could at the time with the information they knew when I was growing up. Were some of those decisions not successful? Yes. Did some inflict more pain and hardship upon me? Yes. Am I resentful or angered by that? No.

I imagine it is the hardest thing on earth to see your child, or parent if you’re an adult caregiver, in pain and suffering and have to make decisions that medical professionals are presenting you. I’m in the in-between stage. I’m a fully functioning adult who gets to be my own medical advocate (while still calling my mama to help me remember facts or process things) for the first real time in my life. This is liberating and also can be scary. 

Several years ago I took my health into my own hands in the biggest way I probably ever will. Up until age 23 I was on canned, genetically made, pre-packaged formula for people with feeding tubes or other medical needs. Doctors advised my parents to put me on this from a very young age and admittedly it kept me alive. I was able to function and go to public school and participate in activities and camps and be social. It also made me incredibly sick often. We didn’t know it was the cause but it was certainly a catalyst for many infections and illnesses I had for my first 23 years. 

With the encouragement of some friends, when I was 23 I went off the formula. I started blending my own foods and trying to eat healthier real foods. It was a steep learning curve. My parents were not happy. I lost a lot of weight at a very rapid pace until we figured out a blended diet that worked for me to sustain my body. Five years later I am healthier than I’ve ever been, I eat real food, and instead of getting sick monthly I’ve been sick four times in those five years. 

While I don’t get sick often anymore, it is still very difficult when I do get sick. Medical students don’t study people like me in medical school. Your run-of-the-mill family doctor doesn’t know what to do with me when I am sick. I have to be my own advocate and tell them what is wrong, and tell them the treatment solution. I know my body well enough after 28 years to know what works and doesn’t work. I know exactly how it feels when I get an infection. I know what antibiotics are successful and which aren’t. I’m no longer a child. It’s no longer a guessing game. The scary part is over. My parents and doctors did all the hard work of diagnosing and figuring out what works best and now that I’m the advocate I just have to relay the message. 

Being a self-advocate doesn’t only apply to medical situations. I have to advocate for myself in new work environments. All throughout school my parents and I had to advocate for me. This world wasn’t built for people with disabilities or medical conditions, therefore the advocating never stops. I’m a Disability Rights Advocate and I teach people every day how to advocate for themselves. This ranges from parking lot access, asserting their rights to an interpreter, getting a driver’s license, and accessing their own middle school building.

It can be exhausting to have to fight every day for basic access and rights that the rest of the world is afforded, but the alternative is a life that may be sorely lacking in basic human necessities. Every time we advocate and educate new people and providers we aren’t just helping ourselves we are helping everyone, those behind and ahead of us to change the world. It can seem overwhelming and exhausting and pointless, but I’m here to promise you that it is not.

Keep fighting the good fight! 

Being Your Own Medical Advocate

A Note from Paula

I love the fact that the picture Hannah sent includes a print that says, “We can do hard things.” I first learned about Hannah and Feeding Tube Fitness when she went to visit my November 28 birthday-mate Lydia in the hospital. Lydia currently has a feeding tube (learn more about her/share support at her Facebook page or her GoFundMe), and Hannah wrote this in the Instagram caption:

I want her to grow up in a world where she sees and knows people like her who are pursuing all their dreams, kicking butt and taking names. I want her to know that she can do anything she wants in life, I want her to see athletes, models, and girls like her running the dang world.

Hannah and I ended up at the topic of medical advocacy for a variety of reasons. She has had her own road to take regarding learning to advocate for herself. Lydia’s parents have had a crash course in communicating Lydia’s needs to her medical professionals. I struggled to figure out what would help my mom (when quite a few things seemed to be geared toward the hospital’s expediency) during her final illness and to be assertive enough to make sure my father-in-law’s well-being was taken care of during his final years, not to mention my own adventures in electrophysiology.

If there’s one thing I know, it’s that medical advocacy (for ourselves and for those we love) is a “hard thing.” Thank you, Hannah, for sharing your story. It gives us all emotional ammunition for that “good fight.”

Find Hannah on Instagram at Feeding Tube Fitness and on Facebook, also at Feeding Tube Fitness!

Currently Happening In My Facebook World

I often laughingly tell people that Facebook highlights have become a steady stream of “isn’t my new grandchild beautiful?” (they always are) and “so sorry to announce that Fluffly has crossed the rainbow bridge” (always sad). We Facebook users are older and grayer than many other social media channels, and it frequently shows.

Prompted by Mama Kat, though, a look at six hot topics in my Facebook world proves there’s more to my Facebook family than birth announcements and goodbyes to beloved pets.

Our Embattled Health Care

While I recognize that the Affordable Care Act is flawed, I also firmly believe The American Health Care Act was in no way a suitable replacement.

Having worked for Florida Healthy Kids for almost 20 years, I became a diehard believer in the power of preventive care, in the potential that can be unlocked if someone thinks out of the box and people with the patience to slog through the mind-numbing details of crafting federal policy and budgets follow up.

This is one of the graphics I received via my fellow advocates at I Stand with Planned Parenthood yesterday and posted to my wall prior to the failure to repeal the Affordable Care Act:

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#StandWithPP is (quoting from them): “A group of social media influencers across platforms – from Twitter to YouTube to blogs – saying together #StandWithPP to ensure that women have access to health care services that range from cancer screenings to birth control.” To join, complete this form.

The Emergence of Female Political Candidates, Especially at the Local Level

When I pulled up the Emerge America site while looking for a stat to use about the number of women entering the political arena (especially local) in the wake of the presidential election, I wanted to act on every single action point of the #WhySheRuns effort to increase the number of women running for office (with the exception of running myself), such as sharing the graphic below immediately.

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My belief in the power of women to make a difference locally, at the state level, and nationally (as well as internationally) drove me to donate to my friend Nicolette’s campaign for a seat on the Orange County Commission.

While there are traditional still photos of Nicolette and her awesome family on her campaign Facebook page, this picture, to me, best represents what women can do these days to make a difference: talk to people. Explain how to be a part of government. Overcome fears, objections, inertia. Talk. To people.

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Nicolette hosts an advocacy training for the Lake Nona Democrats.

If Our Kids Become Our Parents

Alexandra Samuel posted this to Facebook the other day.

If you knew your kids were actually time travelers who will eventually go back in time and become your parents, how would that change your parenting?

Aaaaaaaaaand I freaked out. I have always said that I imagine I overcompensated in my parenting for the issues that I took to the therapist’s couch, and I imagine that overcompensation in itself will give my kids plenty of material for their own therapeutic relationships.

It’s probably unfair to my kids to delve too deeply into this. For starters, I suspect Tenley would create a much more orderly, clean, environment in which I as a daughter would wear  more monograms and less “wow! doesn’t this quirky piece from Goodwill make you feel unique?” items. With Wayne Kevin as a parent, no one would get all worked up about the thousand and one administrative details of life; we would be too glued to YouTube.

Why Neal’s Mom Should Pay $120 For Great Tennis Shoes

My Facebook friend Neil Kramer asked Facebook Nation for help convincing his mom to indulge in proper footwear:

Please tell my mother that she deserves $120 New Balance sneakers if they are good for her feet.

Sounds like Neil’s mom is has a vein of the same self-sacrificing, frugal constitution that my parents have. $120 is, sadly, run of the mill for proper walking shoes these days. Honestly, if I had $120 I would have shipped them to her the minute I saw the post. I suspect the issue isn’t having the $120 to spend but her aversion to spending it “gasp!” ON SHOES.

Just do it, Neil’s Mom. I am sure you deserve it. As I told Neil, go to RoadrunnerSports.Com, and get a special deal on day one of visiting the website ($25 off a $75 or more order) as well as the option of their 90-day return policy, where you can return shoes no matter how worn within 90 days if they don’t work out (for credit toward another pair of shoes). We have tested this feature out and they mean it!

Editor’s Note: Neil’s mom got shoes! She got Nikes instead of New Balance but all reports say she is pleased with her purchase. In other news, Neil has now gone down the podiatry rabbit hole and “plantar fasciitis” is in his vocabulary (as well as words like “pronation“). He may never be the same! 

Why Everything About Everything Bagels is Awesome

In addition to his plea for help convincing his mom to take care of her feet, Neil posted this (titled “remains of everything bagel”):

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Which brought out ALL the “everything bagel” lovers on Facebook (me included). In addition to the wonders of the everything bagel (they’re best eaten in one of the five boroughs, to be specific, but those of us not currently in NYC have to do the best we can), we discussed:

And guess what I had for breakfast today?

Disney

Since I wrote about Disney last Sunday, am still coming down from the high of spending a few days there last week, have lots of young friends doing the Disney College Program, and in general have many friends going to Disney right now (maybe spring break has something to do with it), there’s a lot of Disney on my Facebook feed and I’m okay with that!

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How about you? How is Facebook edifying (or annoying) you lately?

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