Alright – so today we’ve got the honor of introducing you to Marcos y Theodora Pestana @pestanalife . We think you’ll enjoy our conversation, we’ve shared it below.
Hi Marcos y Theodora , thanks for joining us today. We’re complete cheeseballs and so we love asking folks to share the most heartwarming moment from their career – do you have a touching moment you can share with us?
Theodora: There is a special group of women that have come into my life exactly because I’m an ostomate and have IBD. Without our shared diagnosis of IBD and/or having ostomies, we would probably never have met. We all live in different states, time zones and/or countries. And yet, we found each other and can’t imagine life without the others!
Our story begins with each of us volunteering for girls with guts which is an online community for women with ibd and/or Ostomies. When we signed up as volunteers, we got so very much more than just being part of this phenomenal organization! A beautiful gift of new friendships, that have become more like a family. It’s given each of us a newfound sense of gratitude about our respective diagnoses. Why? Because our uniquely formed bond and support network from it, we provide one another stems from our illness.
It’s indescribable how it feels to be seen, heard, and know you will get nothing but support exactly when you need it most. If anyone has a “day”be it in life or health, we know we all have a safe space to express ourselves no questions asked. We all may not be available at the same times, but we rest easy knowing one or more of us will always be there when we need them.
If we have new or concerning physical symptoms arise, in sharing the same diagnosis, a perk is usually one or more of us has “been there” and can help or relate in some way. Regardless, we all provide vital emotional support for the others.
As one of these amazing ladies says it- we can all just “come as we are, exactly how we are!” Which is something my heart hopes others struggling in silence can find what we have found. To not stand alone and find other souls who are walking through the same experience as you is so vital to have! Now that we do, I can’t imagine my life without them! That is to me, a prime example of finding “purpose from the pain” of our illness!
Awesome – so before we get into the rest of our questions, can you briefly introduce yourself to our readers.
What motivated us to begin Pestana Life and to keep doing so for the two years we’ve been doing this, was the hope that in sharing our experiences, paitent knowledge and experience. coping skills of how we survive a life with chronic, incurable illness, and somehow keep dancing through it (literally), we pray can serve as a guide for viewers facing similar circumstances in their own lives or health.
Running Pestana Life has allowed us to connect with so many incredible & inspiring people! It’s so beautiful to see the differing types of followers we reach. Whenever we hear how someone was inspired, comforted, informed or got a laugh or smile from our dancing and lighter hearted moments, it fills our hearts with joy! The goal was and is to simply encourage, educate and advocate and of course throw in some dance!
Whenever we hear that our content gave someone hope when it was lost, inspiration to keep going or offered newfound medical knowledge in whatever way, gives us the motivation to keep going forward in our efforts! We are so exited to see where we go in the years ahead!
Let’s talk about resilience next – do you have a story you can share with us?
Marcos: We have so very many experiences about this very word. To use a recent example we have overcome, was this past April 2022, when @Theodora went septic twice less than two weeks apart. I nearly lost her both times but by the grace of god, she’s here still!
We had planned for a needed big surgery (the one now taking place 9/8/22), to take place in early June. The goal was to see our children to the end of their school year, as well as our eldest child’s prom, graduation and festivities there of with the hope of recovering enough though the summer to both move her into college having both Mom and Dad at her side as it should be.
Pestana Life often doesn’t go according to plan. So this is one of many times God had other plans for us. Our world was shaken on March 28, 2022. That day was when @Theodora had an out patient kidney surgery. Soon after returning home, she went into septic shock. She was vomiting, turning blue and purple and in excruciating pain to the point she couldn’t move. We had to call 911 to transport her by ambulance to the nearest hospital. In a follow up with her team, the Dr worded that day as her body was “actively trying to die.”
Once admitted, she spiked a fever of 103. They discovered she had aspiration pneumonia that occurred when vomiting awaiting treatment in the ER. Her lungs were drowning on the inside and her fever wouldn’t break as her body fought to live. The team quickly decided that the best course of action was for her to be sedated and placed on a ventilator for life support. We had but minutes to decide, prepare and then “go head first into the deep end” to face the unknown. So, that began our first experience with being long term on a ventilator.
She was kept on it for around two weeks and then was awoken, but kept intubated for a transitional time before they removed her from the life support to breathe on her own again. The day before we discharged, she had sudden onset of severe pain. A scan showed she had fluid collected in the front left, lower pelvis and it required surgery to drain. Because she was just newly off the ventilator, the Drs didn’t want her to be under so soon after. So, she had to go to surgery with only a local anesthetic and was awake for the entire procedure.
A day later, we came home. But the war wasn’t over. Theodora had difficulty breathing and even walking on her own. She continued vomiting, struggling to regain lung function post ventilator and fighting fevers. The only antibiotics susceptible to the infection she had was one she was allergic to. So in addition, she had the allergic reactions on top of everything else.
Something new came about too, she had a terrible taste in her mouth and anything but ice chips, she couldn’t tolerate. We later learned at the next admit, that she had a severe case of thrush-adult yeast infection on her tongue. The only treatment was to gargle a liquid medication that to her tasted like sour, expired milk. But she soldiered on and took it like a champ.
We only lasted 6 days at home and then she began to spike Avery high fever that wouldn’t break. She was shaking uncontrollably and when her home nurse came to check her and drew blood, she commented that her blood was a brownish, orange and as thick as molasses. The fever lasted through the night and her vitals were crashing. The home nurse said that she was again presenting with septic shock. So back we went and it was septic shock from a new strain of infection trying again to take her life.
She remained admitted on treatment and being monitored for a week before finally getting to go home. We got home the day of our daughter’s senior prom and my wife, a woman freshly off a ventilator and barely standing, so weak and frail from the double sepsis, put her mom hat on the minute we got to the house and barley standing, still took pictures and saw our daughter off to her senior prom. If that isn’t resilience, I don’t know what is!
But there’s more- three days after returning home, @Theodora lost the ability to use her hands, had aching and soreness at ankles, feet and wrists and couldn’t bend her ankles when she walked. After talking to the doctor, it was determined she was suffering a severe reaction to the IV vancomycin (a very potent antibiotic that comes with many side effects) used to save her life the second time. This condition is called Rhabdomylosis.
For several days, she couldn’t walk properly and her hands were nearly useless. She couldn’t even hold her own phone or grab a drink without help. But, somehow she managed to push through the pain and still handled straight cathing and her own ostomy care. Once the symptoms dissipated, she went right from walking to dancing! We only a few weeks after the double sepsis and rnhabdomylosis, attended a bachata social and sure enough she was out on the dance floor with the biggest smile!
Something I am in awe of about my wife, is no matter how hard the hit, she never gives up. She always soldier’s through, shows up for our family and gets right back to the dance floor as soon as she’s got the strength to do so. Many would throw in the towel and not see the point in starting from zero loosing all progress and skill you so hardly worked to achieve only to have it taken from you over and over to repeat the vicious cycle once again. Honestly, there can’t be just one story of resilience about my wife. Because, resilience is in her soul! She always keeps going, keeps dancing and never loses her joy and love of life. All too often people make the mistake she’s improved or “cured.” That sadly isn’t so. But they assume so exactly because of how resilient she is!
Can you tell us about what’s worked well for you in terms of growing your clientele?
What motivated us to begin Pestana Life and continue it presently, is the hope that in sharing our experience in how we survive a life with chronic, incurable illness, can serve others facing similar circumstances who may be struggling in their own life or health. When we see fellow creators sharing their experiences, especially ones we can relate with who have similar stories to ours, provides the vital sense of inclusion to us as viewers: So, we want to do the same thing for others and pay that forward and thus, Pestana Life! We strive to keep things real but always positive and the goal isn’t how many likes, it’s how many people can be positively impacted from what we are doing!
Pestana life’s growing community of followers we lovingly call the “Pestana Life Crew,” has allowed us to connect with so many diverse, incredible people! Fellow patients and caregivers, dancers, instructors, artists, and event promoters. Also, those who share the same strength in their faith as we do as well. We love it that viewers can identify in whatever aspect resonates for them in their life. Or some, simply enjoy the dancing and the education and that’s perfectly fine too!
Faith, hope love, patient life, and of course dance! Primarily bachata if you know us!
We offer our content in both English and Spanish, which gives Pestana life it’s own twist in how we present to viewers.
Medically, we advocate to be a voice for fellow ostomates, Chronic illness warriors and caregivers. Sharing how we lean on our faith in times of adversity and hardship encourages others to do the same! As dancers, we love sharing our love of dance and often intertwine events, dance classes, socials and congresses we attend in our content whenever we can.
Hearing our work helps others to find hope, confidence or, can help them draw closer in their own faith, by what we share and do, is truly the most gratifying and humbling experience! We create from whatever season of life we’re in and whatever is “on the menu” in our life. Pestana life that is!
Contact Info:
- Website: Tik Tok: @pestanalife
- Instagram: @pestanalife
- Facebook: https://www.facebook.com/pestanalife/
- Youtube: https://youtube.com/channel/UCCK-LQg6w4T87JXwNcACliw
- Other: To learn more about the non-profit online community of “Girls with Guts” where Pestaña life’s Theodora is a blogger and former community connection member, visit: www.girlswithguts.org IG: @ibdgirls Fb: girls with guts You can also see several “inspiring ostomates” features of Theodora at: https://instagram.com/stouq.ostomylife?igshid=YmMyMTA2M2Y=
Image Credits
All photos taken by Theodora Pestaña and owned by Pestaña life