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!

4 Ways to Exercise Again After a Health Setback

Exercise again after a health setback

I was never a fast runner, but I have always been competitive with myself. I approached every finish line at a sprint, hoping to shave a few seconds off my time.

That was true until October 2, 2016. That day, I rolled into the finish area of a 5K as the passenger in a golf cart, because I was experiencing worrisome enough heart rate issues to compel me to ask the organizers to take me off the course a  little over a mile in. Of a race I was simply walking.

Although I did some half-hearted workouts after that, went to a few yoga classes, and took some walks, that day is when I gave up and stopped working out.

The Sweat Thearapy workout at Happy Motoring on June 2 will turn out to be the day that jump started everything again. Here are four game-changers that are going to be part of this new transition back to the old fit ways.

Exercise again after a health setback

Overcoming the Fear

When I had a follow-up with my electrophysiologist’s PA recently for a routine check related to my exercise-induced tachycardia, this is how the conversation went (also, it’s how the routine check four months earlier with the doctor went):

Her: Any problems?

Me: No

Her: Have you been exercising, which would have to happen for you to know if there are problems?

Me: Well, no.

Her: You won’t know if you don’t exercise.

BUSTED

It may be the electrical activity in my heart that is the “problem,” but it turns out my head is where the biggest irregularities are.

I hated having to get picked up at that 5K. I’ve hated working out at my usual place that does so many partner drills because I push myself too hard, afraid I’m going to let my partner down. It is difficult to trust that the medication will keep everything in check.

I became afraid to work out and got stuck.

Making Adjustments

If you are returning to a workout habit after a setback and/or extended break, get comfortable with doing things differently.

I wasn’t sure how the June 2 workout would be structured, but I went into it prepared to do what worked for me even if it didn’t fit with what the majority was doing. (The workout was advertised as “all levels” and it lived up to that billing, but you never know. Some “all levels” workouts end up being intimidating and too strenuous for a beginner or returning participant.)

Here are some ways to adjust a workout. (And a good instructor will offer proposed modifications to accommodate various levels.)

  • Reduce intensity (turn a jumping jack into a step jack or one of these variations, for example)
  • Keep moving, but slow down. If an activity is too difficult and there’s not a variation that feels right, don’t do it. March in place if possible. Walk for a few minutes. Listen to your body’s warning signs
  • Be clear about what you need. I mentioned that partner drills are one of my bugaboos. Imagine my emotions when the instructor announced — you guessed it! — partner drills. Turns out she had incorporated them in a way that wasn’t threatening. Each partner was taking a turn at a station, but the activity didn’t depend on partner A finishing something before partner B could start. It worked for me but I was prepared to say “I am not going to be able to keep up with a partner; I’ll take a walk and meet you all after this section is done”
  • Cut it short. If the planned workout is too long for you, it’s okay to stop early (make sure to cool down, though, and hydrate well)

Creating a Plan

One of the awards given at the weekly Weight Watchers meetings I attend is the 4-week award.

Each week, our leader asks this question of the group before presenting the 4-week awards: “Why is the 4-week period important?”

Answer: Because that’s what it takes to establish a habit. (Note: that is the Weight Watchers theory …. opinions vary. I agree with Charles DuHigg that the habit of eating chocolate can be ingrained much faster than other habits, let’s say regular exercise, making progress on a book or saving money.)

I’m saying a workout eight days ago was the start of a habit, yet I haven’t lifted a weight or walked a mile since then. There’s a small caveat because I had my implantable loop recorder replaced a few days ago and have activity restrictions for the next week.

But I’m here to tell you, readers, regular fitness is going to become a thing for me again as soon as these activity restrictions are lifted.

Remembering How Good it Feels

Working out has physical benefits, of course, but it just feels fantastic!

The sun (if you’re outside), the sweat, the collective energy of being with other positive people, being in touch with your body, being away from a screen. All of it.

Everything about working out (despite its difficulty) adds up to walking away feeling good.

Bonuses

One of the best parts of my workout that day was meeting a fellow Twitter friend for the first time. Thanks, Harry/@hdoug11 for recognizing me and saying hello. Ironically, I had just been involved in a thread that morning about how so many of us in the Tallahassee Twitter community have never met in person. This was a great start to making in-person connections with Twitter friends who make social media fun and as wonderful as the workout.

Exercise again after a health setback

Okay, great hair (me – not him) is NOT a workout benefit!

And heck, the $4 mimosas provided tasty hydration and *may* be one of the features of this workout situation that got me out the door!

Exercise again after a health setback

Details About Sweat Therapy’s Workouts at Happy Motoring

My kick in the pants to get out of my funk happened because Sweat Therapy is offering free summer workouts each Saturday in June at a venue I had been curious about anyway, Happy Motoring. Visit this Facebook page for more information on the workouts.

Are you struggling with being “stuck” in a workout funk or standstill? Let me know in the comments (or message me) and let’s talk about how you, too, can have a ball working out after a health setback.

*Note: Please check with your physician to clear your exercise plan before starting.

Grateful Challenge 2016

Note: This post contains affiliate links. I will receive compensation for books you purchase through these links. 

Personal Gratitude

For the fourth consecutive year, Gini Dietrich and Spin Sucks have hosted the Grateful Challenge. While the base model is “try to write down everything you’re grateful for and get to 99 items in ten minutes” (as I did in 2014 and 2015), Gini’s 2016 version deviated a bit from that plan and so will mine (I mean, come ON, has 2016 complied with “predictable” in any way whatsoever?). While it will be utterly impossible for me to top Gini’s #10, gratitude is not a competition and I am grateful for the opportunity to reflect on (and share) the places, people, values, and experiences that made the year unique.

Note, the only way this list resembles the “write down as many things as you can in 10 minutes” model in any way is the fact that they are not in any particular order. These are the fifteen items that came to mind, in the order they popped into my head.

My Impromptu Trip to NYC in June

I knew that my friend Mary Jane, with whom I did the 2015 New York City Half Marathon for Team in Training, planned to do the NYC 10K Mini in June 2016, but never planned to join. I had my sights set on doing a Disney race with her in early January 2017.

Less than a week before the 10K Mini, I learned that she would not be doing the Disney race in 2017 because she would be undergoing a stem cell transplant related to her Multiple Myeloma iin Fall 2016. Five days before the 10K race, when we were messaging each other, she said, “come do the 10K. You have a place to stay.” Long story short, I bought a plane ticket, finished up all my work for Weaving Influence, registered for the race,and …….. became an unofficial part of Mary Jane’s team at the New York Mini on June 11.

Any day in NYC is a happy day for me. So grateful that my family made the sacrifice financially for me to fly to NYC on virtually zero notice, that Mary Jane and her family welcomed me with open arms, and that I had an unexpected four days in my happy place. It truly did make me happy. So happy.

Personal Gratitude

Mary Jane, Me, Mary Miner (we all worked together at Fordham University)

Our Michigan Trip in July

My husband, Wayne, had a class reunion in Grand Rapids, Michigan, in July. He and my son drove to Michigan, with stops along the way at places like the Corvette Factory in Bowling Green, Kentucky, Chicago, and Upstate Michigan. I got my father-in-law settled in respite care at an assisted living facility for eight days and flew up to meet them for part of the trip.

I *love* traveling and enjoyed this opportunity to reconnect with family and friends in Michigan, to be part of the class reunion, to take in a Tigers game, and to visit Greenfield Village in Detroit.

As grateful as I am for the travel, having my father-in-law completely dealt with by someone else for eight days was also BIG. I swear as much as I loved the travel, I loved having 24 hours in the house to myself and being able to get all the carpets cleaned before I picked him up. 

Personal Gratitude

At a Tigers Game on 7/17/16.

Journey to Mars NASA Social

On August 17 and 18, I participated in a NASA Social in New Orleans and Mississippi. The social was all about the Journey to Mars. This was my third NASA Social and my first to take place at a space center besides Kennedy Space Center. I loved learning about a new (to me) space center and who doesn’t love an opportunity to go to New Orleans?

So many things about this trip were highlights. The learning about NASA was excellent (including seeing a test firing of one of the engines that will be part of powering the journey to Mars), the food was fantastic, and the opportunity to reunite with my best friend from childhood was such a treat for my heart!

Personal Gratitude

Soooo grateful to spend time with Paula!

Personal Gratitude

At the Aerojet Rocketdyne Facility with one of the engines to be used to propel the Journey to Mars.

Personal Gratitude

Jonathan had never had beignets before (!) so we had to remedy that.

I’m grateful for New Orleans, a city that has overcome so much, for the friends and food there, and for the fact that NASA and its contractors put really big components together there so I had an opportunity to go!!

Harry Was Wrong

Maybe if I was a guy writing this …. I wouldn’t write this. But I believe Harry was wrong when he told Sally men can’t be friends with women because they only have one thing on their mind. It takes respect and discipline to be friends when life could have taken two people other places, but who better to have as a friend than someone who had chosen to respect your choices and still share generously in the journey of life?

Personal Gratitude

My friend and I shared a day visiting my childhood home and elementary school in January.

I’m grateful for another year of a friendship that proves Harry wrong. 

Family, Together

It seemed like time flew between my niece Jessica’s announcement that she and Eric were engaged and the day we were scurrying around, with two men in the house trying to figure out tuxedo pieces, and Tenley and me doing hair and makeup as we prepared to step into long dresses (while getting my father-in-law into a suit). But November 12, 2016 dawned sunny and perfect, and although I can’t say “perfect” often describes the ins and outs that are part of being a family, for a few moments in that day, we were reminded that more often than not we continue to make an effort to be perfectly united.

Personal Gratitude

I am grateful for Wayne (husband), Tenley, and Wayne (son) (and Wayne (father-in-law)).

Flexible Work

Because someone has to be home with my father-in-law, I am grateful that I have flexible work which contributes to the family bottom line. It’s not just the fact that it’s flexible work, though, it’s the fact that Weaving Influence has core values (of which flexibility is one) and strives to live those values daily.

Personal Gratitude

With Whitney Heins, Becky Robinson, Jennifer Kahnweiler, Christy Kirk, and Kylah Frazier, Weaving Influence Team Members and Supporter. July 2016

I am grateful to be able to work and provide care for my father-in-law simultaneously.

Girl Scout Cookies, Friendship, and Advocacy (Not in that Order)

I have been involved with Shot at Life since 2013, and in addition to the rewarding work of advocacy on behalf of children around the world who are vulnerable to vaccine-preventable diseases, I have made the most wonderful friends.

I also may or may not have been part of a scheme to hide girl scout cookies behind a dumpster at the US Capitol when security would not allow us to bring them in. I won’t say more, but just know there are girl scout cookies being consumed in the picture below and this picture was taken AFTER the Capitol Contraband Cookie Caper.

Personal Gratitude

I am grateful to know smart, caring women (and men) who are doing their part to make the world a better place. I am, of course, grateful for Thin Mints but I figure that goes without saying!

Stumbling Blocks on Fitness Road

Wow, was I ever optimistic way back in 2015 when I thought I could keep running, albeit more slowly, as long as I took my beta blockers before I ran. Without looking it up, I can’t tell you what day I stopped running (for now) but having to be taken back to the finish line of a recent 5K by a golf cart instead of my own two feet was a decision point for me.

Personal Gratitude

At the Stop the Violence 5K, BEFORE the race. Turns out Harper (the dog) and I each had our own struggles that day.

Still, I am grateful for the running community, that medical science (hopefully) will continue to find new answers to challenges like mine, and for the young man I run (walk) for, Gareth, who motivates me to keep moving.  

Reading

I love reading and have enjoyed some fantastic books this year. It would take an entire blog post to discuss favorites but I’ll chose two. A book I enjoyed on paper was The Wright Brothers by David McCullough. I was motivated to pick it up because I was at the Detroit Airport, needed something to read, and had just seen the Wright Brothers home and shop when I had visited Deerfield Village.

On audio, it’s so difficult to choose. I need to give a shout out to Year of Yes by Shonda Rhimes. Of all the books I have read this year, it’s among the top five at motivating and encouraging me.

Personal Gratitude

I am grateful for reading, for its power to unlock my imagination and ignite my spirit. 

My Parents

My parents have gotten the short end of the gratitude stick from me many times over the decades, but they have responded with grace and generosity. I am beyond appreciative.

I don’t have a picture of the three of us together from this year to share, but I am grateful.

Blogging

Oh blogging, how has it been seven years already? I pulled up a post from 2009 today and flinched a little bit seeing the long unbroken paragraphs, the image I may have pulled off of Google images (that I replaced!), the lack of a meta description, and other signs that I really didn’t know what I was doing back then (not that I know now!). But blogging has given me such a fertile outlet, has connected me to so many incredible people, and has provided opportunities to earn additional income. Thanks, blogging.

I am grateful for blogging, and especially grateful to everyone who reads my blog, comments on it, and shares.

Toastmasters

It has been a fun year at Toastmasters, and I am happy to have closed it out with an opportunity to compete in the District Evaluation Contest and the District Humorous Speech Contest. Coming in 2nd in the evaluation contest was a welcome surprise. Not placing in the humorous speech contest was a humbling experience that inspired me to keep on trying. Now life needs to hand me something hilarious to discuss! (I should probably be careful what I ask for).

Personal Gratitude

I am grateful for the opportunity to learn about speaking, evaluating, and running meetings from Toastmasters.

Eldercare

Eldercare is not easy. I imagine when the perspective is reversed, being the elder isn’t a walk in the park either. I have no rosy “this situation is teaching me lessons I need” kind of takeaway here (although I do believe that is true). But dad is our patriarch on the Kiger side and I am glad to be able to do my part.

I am grateful that despite the many challenges, we have so far figured out a way to care for dad at home and (hopefully) provide him a place where he knows he is cared for.

Interacting With the Most Incredible People

So many people come to mind who are on my “grateful list” for this year. Many of them ended up in my life through blogging, advocacy, or both. I have to conduct phone calls wherever I can since the main tv in our house is usually on VERY LOUD TENNIS, and I will not soon forget sitting on the floor of my bedroom. a couple of sheets of paper in my hand, talking to Mark S. King for our collaboration on a CDC-related blog about encouraging people to get tested for HIV.

It’s too long of a story for this blog, but I believe it is possible that Representative Gwen Graham would go to Costco with me, as we discussed when we met about Shot at Life. I may have been in an office in Washington, D.C., but it felt very much like I was on a front porch in North Florida. She has a gift.

Personal Gratitude

Visiting Rep. Gwen Graham in Washington, DC

Be open to meeting new people and hearing their stories; you will be grateful for what you learn.

Silence

I know ….. silence? I think often of the silent retreat I did in March. It was only six hours but those six hours were probably my longest unplugged period in a while. It was a different experience, one which made me question whether or not I really want to do a multi-day silent retreat somewhere (I do…), but it was a reminder that it’s easy to give in to the world’s distractions and lose touch with the places, people, values, and experiences that really matter.

Personal Gratitude

For the highlights of 2016 I’ve mentioned here, and for the ability to gather more moments in the year to come, I am grateful. 

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