Kristine Hoestermann's guest appearances

Kristine Hoestermann

Invisible Not Broken - Chronic Illness Podcast Network

Causepods

Once Upon A Gene

Back To Basic

Spooning with Spoonies

David Solomon

Emily Ann Peterson

Stasia Black

Jackson Pollock

Megan Devine

Lee Phillips

Emily Guy Birken

Bernardo Puccio

Kate Miller

Kyle Bryant

Liz Morris

Blyth Lord

David Ross

Patrick James

David Fajgenbaum

OwlTail

People are not mind readers... today’s episode explores communication between partners throughout the chronic illness journey and is full of tips on ways to reconnect when your normal shifts.Kristine Hoestermann is a Licensed Clinical Social Worker, and the CEO of RARE, a clothing brand raising awareness for rare diseases. Kristine, who lives with EDS , POTS, and Autoimmune Small Fiber Neuropathy Secondary to Unknown Connective Tissue Disease, first became ill towards the beginning of her relationship.Kristine shares what it was like to come out at the same time as becoming ill, the communication workbook that brought her and her wife back together, the importance of making space for reflection before response, and her and her wife’s “bachelor style” intentional date nights!Quote: “Both of our lives are now different. We're both different people. And it's not a matter of love or anything like that. It was a matter of us finding a way to communicate what we were trying to say” - Kristine.                      Episode Transcript: https://otter.ai/u/Jy-FKS10mCwlwLX9NGDmxkNBriALinks:Spooning with Spoonies IG: https://www.instagram.com/spooningwithspooniespod/Rare IG: https://www.instagram.com/findyourrare/Shop Rare: www.findyourrare.comBecause We Are Strong Podcast: www.bwspod.com

People are not mind readers... today’s episode explores communication between partners throughout the chronic illness journey and is full of tips on ways to reconnect when your normal shifts. Kristine Hoestermann is a Licensed Clinical Social Worker, and the CEO of RARE, a clothing brand raising awareness for rare diseases. Kristine, who lives with EDS , POTS, and Autoimmune Small Fiber Neuropathy Secondary to Unknown Connective Tissue Disease, first became ill towards the beginning of her relationship. Kristine shares what it was like to come out at the same time as becoming ill, the communication workbook that brought her and her wife back together, the importance of making space for reflection before response, and her and her wife’s “bachelor style” intentional date nights! Quote: “Both of our lives are now different. We're both different people. And it's not a matter of love or anything like that. It was a matter of us finding a way to communicate what we were trying to say” - Kristine. Episode Transcript: <a href="https://otter.ai/u/Jy-FKS10mCwlwLX9NGDmxkNBriA" rel="nofollow" target="_blank">https://otter.ai/u/Jy-FKS10mCwlwLX9NGDmxkNBriA</a> Links: Spooning with Spoonies IG: <a href="https://www.instagram.com/spooningwithspooniespod/" rel="nofollow" target="_blank">https://www.instagram.com/spooningwithspooniespod/</a> Rare IG: <a href="https://www.instagram.com/findyourrare/" rel="nofollow" target="_blank">https://www.instagram.com/findyourrare/</a> Shop Rare: <a href="http://www.findyourrare.com" rel="nofollow" target="_blank">www.findyourrare.com</a> Because We Are Strong Podcast: <a href="http://www.bwspod.com" rel="nofollow" target="_blank">www.bwspod.com</a>

13. Closing the Communication Gap with LCSW Kristine Hoestermann

Theresa Thomas

ONCE UPON A GENE - EPISODE 054 RARE. — A Brand with a Purpose: Theresa Thomas and Kristine Hoestermann Theresa Thomas and Kristine Hoestermann nurtured their own outlets of blogging and art and found each other online through the power of a hashtag. They fueled the spark of when they met into a glowing fire as they continue to pour their energy into RARE.— a brand with a purpose and also their podcast, Because We Are Strong. EPISODE HIGHLIGHTS How did you come to be part of the rare community? Theresa: I became a part of the rare disease community when my son was born with Beckwith-Wiedemann syndrome, an overgrowth disorder with an increased risk of developing cancer. One side of his body is bigger, he has a large tongue, his organs are bigger and he was almost 12 pounds when he was born. My son Owen is screened for cancer every three months along with abdominal ultrasounds and blood work. He's had one surgery on his tongue and has been hospitalized many times for respiratory issues. Otherwise, he's a fierce two year old in a five year old's body.  Kristine: I was 27 when the onset of my symptoms started. I knew something was wrong, some people didn't believe me, it was hard to get a clear diagnosis and it took a toll on my mental health. Currently, I have 42 running diagnoses. I got sicker and sicker and felt more and more isolated. It never occurred to me that I could wake up sick and never get better.  How did the two of you find one another and connect? Theresa: I started my blog March 2019 and I started searching for Beckwith Wiedemann families and other rare disease resources. I was searching using hashtags and came across Christine's Instagram, RARE. I reached out to her to ask if I could share her website and merchandise and we started talking everyday talking about awareness merchandise and soon realized we had the same mission.  Tell us about how RARE. was started and what it is. Kristine: Because I didn't yet have a name for my condition, I never felt like I could go into a support group because I didn't have a diagnosis and didn't know where I belonged. I felt alone and started creating things to help me express myself so that I felt seen.  Theresa: RARE. is an apparel brand geared towards raising awareness for rare disease, chronic illness and invisible struggles. It's a way of acknowledging that everyone is struggling with something. It's not always a rare disease or chronic illness that's invisible. It's more than clothes, it's about starting a conversation.  What changed for you personally after you connected? Theresa: I'm a woman of faith and I felt God gave me this gift to unwrap and run with. At the time, I wasn't sure what was going to happen with my career. I felt there was no way this was a fluke and I found comfort in knowing I could relate to someone else and I felt renewed. Kristine: I had a drive, but felt I wasn't going to do it alone. There were people helping out, but nothing felt right. When Theresa and I collided, I knew it was what we were suppose to do and we've been through so much in such a short period of time and we just figure it out each time. We balance each other well in business.  Tell us about your podcast, Because We Are Strong. Theresa: Because We Are Strong was initially a Facebook live session I did with Beckwith-Wiedemann families who I was connected with. I recently decided with Kristine to make these sessions into a podcast and make it a platform for everyone under RARE.  LINKS AND RESOURCES MENTIONED Because We Are Strong Podcast https://findyourrare.com/pages/downloadables RARE. Website  https://findyourrare.com/ Living Larger Blog https://largerthanbws.com/ TUNE INTO THE ONCE UPON A GENE PODCAST Spotify https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7  Apple Podcasts  https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347 Stitcher https://www.stitcher.com/podcast/once-upon-a-gene Overcast  https://overcast.fm/itunes1485249347/once-upon-a-gene CONNECT WITH EFFIE PARKS Website https://effieparks.com/ Twitter https://twitter.com/OnceUponAGene Instagram  https://www.instagram.com/onceuponagene.podcast/?hl=en Built Ford Tough Facebook Group https://www.facebook.com/groups/1877643259173346/

ONCE UPON A GENE - EPISODE 054 RARE. — A Brand with a Purpose: Theresa Thomas and Kristine Hoestermann Theresa Thomas and Kristine Hoestermann nurtured their own outlets of blogging and art and found each other online through the power of a hashtag. They fueled the spark of when they met into a glowing fire as they continue to pour their energy into <a href="https://findyourrare.com/" rel="nofollow" target="_blank">RARE.</a>— a brand with a purpose and also their podcast, <a href="https://findyourrare.com/pages/downloadables" rel="nofollow" target="_blank">Because We Are Strong</a>. EPISODE HIGHLIGHTS How did you come to be part of the rare community? Theresa: I became a part of the rare disease community when my son was born with Beckwith-Wiedemann syndrome, an overgrowth disorder with an increased risk of developing cancer. One side of his body is bigger, he has a large tongue, his organs are bigger and he was almost 12 pounds when he was born. My son Owen is screened for cancer every three months along with abdominal ultrasounds and blood work. He's had one surgery on his tongue and has been hospitalized many times for respiratory issues. Otherwise, he's a fierce two year old in a five year old's body.  Kristine: I was 27 when the onset of my symptoms started. I knew something was wrong, some people didn't believe me, it was hard to get a clear diagnosis and it took a toll on my mental health. Currently, I have 42 running diagnoses. I got sicker and sicker and felt more and more isolated. It never occurred to me that I could wake up sick and never get better.  How did the two of you find one another and connect? Theresa: I started my blog March 2019 and I started searching for Beckwith Wiedemann families and other rare disease resources. I was searching using hashtags and came across Christine's Instagram, RARE. I reached out to her to ask if I could share her website and merchandise and we started talking everyday talking about awareness merchandise and soon realized we had the same mission.  Tell us about how RARE. was started and what it is. Kristine: Because I didn't yet have a name for my condition, I never felt like I could go into a support group because I didn't have a diagnosis and didn't know where I belonged. I felt alone and started creating things to help me express myself so that I felt seen.  Theresa: RARE. is an apparel brand geared towards raising awareness for rare disease, chronic illness and invisible struggles. It's a way of acknowledging that everyone is struggling with something. It's not always a rare disease or chronic illness that's invisible. It's more than clothes, it's about starting a conversation.  What changed for you personally after you connected? Theresa: I'm a woman of faith and I felt God gave me this gift to unwrap and run with. At the time, I wasn't sure what was going to happen with my career. I felt there was no way this was a fluke and I found comfort in knowing I could relate to someone else and I felt renewed. Kristine: I had a drive, but felt I wasn't going to do it alone. There were people helping out, but nothing felt right. When Theresa and I collided, I knew it was what we were suppose to do and we've been through so much in such a short period of time and we just figure it out each time. We balance each other well in business.  Tell us about your podcast, Because We Are Strong. Theresa: Because We Are Strong was initially a Facebook live session I did with Beckwith-Wiedemann families who I was connected with. I recently decided with Kristine to make these sessions into a podcast and make it a platform for everyone under RARE.  LINKS AND RESOURCES MENTIONED <a href="https://findyourrare.com/pages/downloadables" rel="nofollow" target="_blank">Because We Are Strong Podcast</a> <a href="https://findyourrare.com/pages/downloadables" rel="nofollow" target="_blank">https://findyourrare.com/pages/downloadables</a> <a href="https://findyourrare.com/" rel="nofollow" target="_blank">RARE. Website </a> <a href="https://findyourrare.com/" rel="nofollow" target="_blank">https://findyourrare.com/</a> <a href="https://largerthanbws.com/" rel="nofollow" target="_blank">Living Larger Blog</a> <a href="https://largerthanbws.com/" rel="nofollow" target="_blank">https://largerthanbws.com/</a> TUNE INTO THE ONCE UPON A GENE PODCAST <a href="https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7" rel="nofollow" target="_blank">Spotify</a> <a href="https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7" rel="nofollow" target="_blank">https://open.spotify.com/show/5Htr9lt5vXGG3ac6enxLQ7</a> <a href="https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347" rel="nofollow" target="_blank"> Apple Podcasts</a> <a href="https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347" rel="nofollow" target="_blank"> https://podcasts.apple.com/us/podcast/once-upon-a-gene/id1485249347</a> <a href="https://www.stitcher.com/podcast/once-upon-a-gene" rel="nofollow" target="_blank">Stitcher</a> <a href="https://www.stitcher.com/podcast/once-upon-a-gene" rel="nofollow" target="_blank">https://www.stitcher.com/podcast/once-upon-a-gene</a> <a href="https://overcast.fm/itunes1485249347/once-upon-a-gene" rel="nofollow" target="_blank">Overcast</a> <a href="https://overcast.fm/itunes1485249347/once-upon-a-gene" rel="nofollow" target="_blank"> https://overcast.fm/itunes1485249347/once-upon-a-gene</a> CONNECT WITH EFFIE PARKS <a href="https://effieparks.com/" rel="nofollow" target="_blank">Website</a> <a href="https://effieparks.com/" rel="nofollow" target="_blank">https://effieparks.com/</a> <a href="https://twitter.com/OnceUponAGene" rel="nofollow" target="_blank">Twitter</a> <a href="https://twitter.com/OnceUponAGene" rel="nofollow" target="_blank">https://twitter.com/OnceUponAGene</a> <a href="https://www.instagram.com/onceuponagene.podcast/?hl=en" rel="nofollow" target="_blank">Instagram</a> <a href="https://www.instagram.com/onceuponagene.podcast/?hl=en" rel="nofollow" target="_blank"> https://www.instagram.com/onceuponagene.podcast/?hl=en</a> <a href="https://www.facebook.com/groups/1877643259173346/" rel="nofollow" target="_blank">Built Ford Tough Facebook Group</a> <a href="https://www.facebook.com/groups/1877643259173346/" rel="nofollow" target="_blank">https://www.facebook.com/groups/1877643259173346/</a>

RARE - A Brand With A Purpose With Theresa Thomas and Kristine Hoestermann

Website/Blog, Twitter, &amp; Instagram Handlewww.findyourrare.com @findyourrareName *Kristine HoestermannWhat is your disorder? *Autoimmune mediate small fiber neuropathy secondary toundifferentiated connective tissue diseaseendometriosis At what age did your disorder become a daily issue? *28Who were you before your illness became debilitating? *Oh gosh this question always get me upset I was extroverted, lively, vibrant, the go to person to have an adventure or a good time.What would you do if you were not dealing with your invisible illness? *starting a familyWhat would you like people to know about your daily life? *how difficult every part is despite what you seeWhat would make living and moving in the world easier for you? *people being kinder and more understandingDo you have any life hacks? *I always have a note book cause i forget everything (something that was never a problem, I had the best memory pre illness)What kind of support do you get from family or friends? *varies I think everyone in my circle does their best to support me in the ways they know how many of them not realizing how harmful they can be at timesHave you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *oh yes! my boss at work for almost a year and that made it so my colleagues didn’t believe me and made working still to this day very difficultHow has your chronic illness affected your relationships? *i have lost a lot of people in my life because of my illnessIs there anything you are afraid to tell people in your life? *oh yeah most of the time afriad to tell them how bad it really is or how much they effect me in a negative wayDoes the fact that your disease is invisible change how healthcare professionals treat you? *yes it took several doctors to believe something was physically wrong with me ase my tests would come up negative but my symptoms were so strong. they only cared about the testsWhat is your best coping mechanism? *creating RARE. my brandWhat are you the most concerned about and the most hopeful for in the future? *That this will be the quality of my life from this point on, that i will never love my job the way i once did, I am a therapist and now its so hard to have al i have going on and be present for peopleIs there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.my brand RARE. which has been my coping skills through out this and it really has given me my voice and something that I hope to give to othersWhat is the hardest and/or best lesson your condition has taught you?everyones fighting a battle you know nothing about, so be kind, be . patient be that RARE. human who asks if everything is okay rather then pass judgementWhat is the best purchase under $100 that helped your lifemy weight zebra that can be heated or cooled!Any questions you think we should add to this list?how anxiety/depression etc tie into chronic illness Hosted on Acast. See acast.com/privacy for more information.

Website/Blog, Twitter, &amp; Instagram Handle<a href="http://www.findyourrare.com" rel="nofollow" target="_blank">www.findyourrare.com</a> @findyourrareName *Kristine HoestermannWhat is your disorder? *<ul><li><a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5912271/" rel="nofollow" target="_blank">Autoimmune mediate small fiber neuropathy</a> secondary to</li><li>undifferentiated connective tissue disease</li><li><a href="https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656" rel="nofollow" target="_blank">endometriosis </a></li></ul>At what age did your disorder become a daily issue? *28Who were you before your illness became debilitating? *Oh gosh this question always get me upset I was extroverted, lively, vibrant, the go to person to have an adventure or a good time.What would you do if you were not dealing with your invisible illness? *starting a familyWhat would you like people to know about your daily life? *how difficult every part is despite what you seeWhat would make living and moving in the world easier for you? *people being kinder and more understandingDo you have any life hacks? *I always have a note book cause i forget everything (something that was never a problem, I had the best memory pre illness)What kind of support do you get from family or friends? *varies I think everyone in my circle does their best to support me in the ways they know how many of them not realizing how harmful they can be at timesHave you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *oh yes! my boss at work for almost a year and that made it so my colleagues didn’t believe me and made working still to this day very difficultHow has your chronic illness affected your relationships? *i have lost a lot of people in my life because of my illnessIs there anything you are afraid to tell people in your life? *oh yeah most of the time afriad to tell them how bad it really is or how much they effect me in a negative wayDoes the fact that your disease is invisible change how healthcare professionals treat you? *yes it took several doctors to believe something was physically wrong with me ase my tests would come up negative but my symptoms were so strong. they only cared about the testsWhat is your best coping mechanism? *creating<a href="https://findyourrare.com/" rel="nofollow" target="_blank"> RARE</a>. my brandWhat are you the most concerned about and the most hopeful for in the future? *That this will be the quality of my life from this point on, that i will never love my job the way i once did, I am a therapist and now its so hard to have al i have going on and be present for peopleIs there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.my brand<a href="https://findyourrare.com/" rel="nofollow" target="_blank"> RARE</a>. which has been my coping skills through out this and it really has given me my voice and something that I hope to give to othersWhat is the hardest and/or best lesson your condition has taught you?everyones fighting a battle you know nothing about, so be kind, be . patient be that <a href="https://findyourrare.com/" rel="nofollow" target="_blank">RARE</a>. human who asks if everything is okay rather then pass judgementWhat is the best purchase under $100 that helped your lifemy weight zebra that can be heated or cooled!Any questions you think we should add to this list?how anxiety/depression etc tie into chronic illness Hosted on Acast. See <a href="https://acast.com/privacy" rel="noopener noreferrer nofollow" target="_blank">acast.com/privacy</a> for more information.

Interview With Kristine Hoestermann Creator of RARE About Endometriosis, Chronic Illness, Creating a Brand, and Compassion