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Mathies Gorm Jensen

@mathiesdane

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He took me to Copenhagen. I’ve been to Parken stadium (his aunt telling me I was a brave woman to go should have been a sign that I was stepping into crazy), met his entire family, his mom has hemmed my clothes and made me sweaters and I am an aunt to the kids his brothers have (not pictured for their privacy). Fifteen years of marriage. I think he likes me. #Hetookmetocopenhagen #vacterlstrong #fyp

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Had a date night last night that included a ride in a cybercab, TWO F1 merchandise stores, a fabulous dinner at @magnoliacafeaustin and a lot of laughter that was desperately needed. #chronicillnessawareness #datenight #vacterlstrong #marriedtoadane

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I had a wonderful party for my 40th birthday! My sister, Madison, put together a hell of a shindig. @annieschlegel did a beautiful balloon arch background, which was perfect. My friends, family and family friends showed up to celebrate that I’ve made it to 40, which was so sweet. I wish I could show all the photos I have, but I had to be selective due to carousel limitations.

The theme was Steel Magnolias, specifically Ouiser - her classic line, “I’m not crazy … I’ve just been in a bad mood for 40 years.”

That meant I got an armadillo cake that I got to cut and I was so delighted about.

Thank you for everyone’s effort, everyone’s love and everyone’s presence.

#40yearsyoung #ouiserlife #birthdayparty

My cousin Steven. Older by six months, he’s one of my favorites cousins … and I have A LOT of them.

My sister, @madi_hendricks7, who put this whole thing together.

My siblings. The three older ones on the left, then Madison on the right, wondering how in the hell she’s related to us. I don’t blame her. 😂

The Rogers Crew. Love how many of them were able to come.

I loved hacking the tail off my cake so much.

Original parents photo 2026.

My mom, grandmother and I. Might frame this one.

Me in front of @annieschlegel ‘s gorgeous arch.

The best husband on the planet.

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Fifteen years going strong on that whole marriage thing. #cleveland #vacterl #chronicillnesscouplegoals

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Happy 15th anniversary to the best person I have ever known and the man I am still madly in love with, fifteen years after the day our outdoor wedding got stormed out and got relocated to a fishing shack in under an hour.

We’ve been to hell and back, survived quarantine, bought a house, acquiesced to the cat distribution system, and live a pretty damn good life. Just two people with the same rare medical condition that met at a conference for it and decided, what the hell, let’s spend the rest of our lives together.

Thank you for being my person.

Thank you for choosing me, us, and this weirdly wonderful life.

And most of all, thank you for letting me keep our house an igloo. ❤️❤️❤️

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My husband had surgery on Thursday.

The details are irrelevant, except that it took longer than expected and ended up being a bit more complicated than expected. He’s healing slowly, but he will make a full recovery in time.

Going from patient to caretaker is one hell of a switch. As far as I can tell, I am doing a decent caretaking job… I’m making sure fed, drinking plenty of liquids and taking his meds on the prescribed schedule.

This isn’t the first time we’ve done the caretaker /patient switch - we’ve been married almost fifteen years, after all. We did the switch in February when he had surgery, but that was a recovery that took two days and it was a relatively easy procedure. This one took three primary surgeons and the good news is they’ve all operated on me as well, so we know and trust them.

Hoping for a very smooth recovery from here out.

#vacterlstrong #ChronicIllnessSupport #marriagegoals

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Just got back from the @ptnpullthrunetwork conference in Charlotte and I had so much fun. Made some new friends and got to meet some wonderful new ones.

A friend and I spoke on how to talk about your children’s medical conditions online, something I am extremely passionate about. I also helped facilitate a few conversations with the “affected adults”, which was very helpful and cathartic for all involved. Spending time with people who have the same rare medical thing you have is a very special experience and I am very grateful my husband (another affected adult) and I were able to be there this year.

Missing everyone already!

Next up, @thevacterlnetwork conference in June 2027! Husband and I both sit on the board for it and we are determined to make it a fantastic experience.

#vacterl #pullthrunetwork #speakers #facilitator #contentcreators #contentcreatorsofinstagram #fypage✨

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21 years ago today I sat next to a guy at a The VACTERL Network’s medical conference’s “sports outing” (a game at Denver’s Coor’s Field) because he was tall and I was hoping he would block the sun. I had met him briefly the first day of the event and I knew very little about him. He was Danish, born and living in a suburb of Copenhagen. Like me, he has VACTERL. He was a year younger than me and was there with his mom, who I had met before I had met him. During that game, we talked, and I got to know him well enough to consider him a friend.

We didn’t get together that day, but we stayed in contact and eventually did fall in love and got married six years later.

We’ve been through so much. Extreme health issues, graduate school dramas, job changes, a sudden move to Texas eleven years ago. But we are each other’s rock in ways that seem really weird to a lot of people. The things important to us are small - curling up watching a movie together, loving on our cat, bickering over the thermostat. Things that seem insignificant to most people are huge to us, because we know how lucky we are to have this life.

Oh, and now we are on the board of the VN. He’s the President. You have no idea how proud I am of this man.

I love you, sweetheart. Happy Ballgame Day.

#beforeandafter #vacterl #chronicillness #chronicillnesswarrior #chronicillnesslife #chronicillnesslifestyle

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My husband and I met in 2005 at a @thevacterlnetwork conference, married in 2011 and currently live in Texas with our Feline Overload named Liza. #catsofinstagram #vacterlstrong #chronicillnesswarrior #chronicillnessawareness

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On Friday night, we saw @georgestrait . It was fabulous. During the show, I realized that there was something going on with my actual stomach. Because I had a feeding tube as a temporary measure to give some relief my esophagus due to some inflammation issues, I figured it was that. Long story short, I contacted my GI and on Monday afternoon he admitted me to the hospital so he could take it out on Tuesday.

Then the port that I had placed on April 28 died. So today I had surgery to replace it. When I woke up, I was sore but not miserable. I am in the hospital overnight and I’m expected to go home tomorrow.

Although I was able to spend five weeks in FL earlier in the year to help take care of my grandmother when she suddenly got ill (she’s doing much better!), I had several travel arrangements canceled to stay close to home, which sucked. However, looking forward to travel to speak at the Pull-Thru Network in July.

I have had several procedures and hospitalizations in the past five months. I have an absolutely amazing medical team. They are on top of it and it is led by my G.I., who has gone to bat for me so much in the past few months. He is a badass and I am so thankful for him.

I would also like to acknowledge my amazing husband who has taken care of me - made sure that I rest when I have needed to, take my meds when I forget and makes sure I am hydrated. We all know that I am not always a compliant patient and he has handled that with more patience and grace than I deserve.

Grateful for my local village – Robin, Laura and Victoria. They have each played a role in taking care of me. I am so grateful for all of them. I am also grateful for my non-local friends and family … my grandmother, my parents, my siblings and my in-laws, and the small group of friends who have known what’s been going on. They all rock.

Just because I’ve been sick doesn’t mean I’ve stopped creating, advocating or working. I love what I get to do and I am so thrilled the opportunity to do it. Look for updates on @spoonful_health app in the next couple weeks, as well as some new articles coming out and some cool new stuff.

#chronicillness #vacterlstrong #spoonfulhealthtracker

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They got my back.

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Happy Valentine’s Day, sweetheart. Love you now, forever and always. #vacterlawareness #chronicillnesswarrior #vacterlstrong #fyp #couplegoals

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