Who is Sjogren’s Strong

The reason why we’re doing this is because we want to build a community of likeminded, positive individuals Living Sjogren’s Strong. I’m sharing my journey.

Who is Sjogren's Strong

Lupe:     We aren't either nutritionist or medical providers. The topics discussed on this show are from our own research and experiences. Please consult your medical provider before attempting anything discussed on this show.

Brian:    My name is Brian and I and my wife Lupe will be hosting this show. I first want to welcome everybody to this podcast and what it is we are trying to accomplish. This episode, we basically want to cover who we are, introduce ourselves to you, what we're doing and why we're doing it, so to get this episode kicked off Lupe.

Lupe:     Hi everybody. My name is. I am 45. I was diagnosed with Sjogren's - 2008. Although I had symptoms way before that maybe 10, 15 years.

Lupe:     The reason why we're doing this is because we want to build a community of likeminded, positive individuals Living Sjogren's Strong. I'm sharing my journey, my difficulties, and struggles in the hopes of helping inspire others and letting everybody know that with self-awareness, proper diet and preparation, it is possible to maintain an active lifestyle. There is life after a Sjogren's diagnosis,

Brian:    So, we discussed not only this podcast but creating an online community around the concept of Sjogren's Strong and one of the biggest things we had to come over was do we want to put ourselves out there online with such a sensitive topic. So Lupe, why now?

Lupe:     Why now? I'm active in a lot of online forums about Sjogren's and I'm not on them all the time, but once in a while I just dive in and I just, I want to be part of it. And what I noticed was that a lot of those forums, there's a lot of negativity. You know, around Sjogren's... the limitations. What you cannot do. What Sjogren's has taken from you, stuff like that.


Lupe:     I wanted to let people know that there are bad days. But there's also good days and when you have good days, try to do something with the good days. You know, get yourself out there. If you enjoy the outdoors or you used to enjoy the outdoors, you can still continue to do that. All you have to do is prepare your body, prepare yourself mentally, you know, stuff like that, and you can do it. You can be who you used to be.

Lupe:     So there are going to be limitations. For example, if you had a hike planned for the weekend and all of a sudden it got hot and it's over 90 degrees out there. I can't - I know my limitations and I know that I can't go on at 10 mile hike. So, maybe I'll decide to go to the gym because I know I can't take the heat.

Lupe:     And so basically that's why, because I want people to know that they're not alone. The feeling... everybody... we all have the same feelings. Uh, you know, sometimes we all get down. But I want everybody to know that you can't still get out there. You can still have the life you used to have.

Brian:    And when we say get out there, we've ridden half centuries...

Lupe:     Full centuries

Brian:    Full centuries, which is 100 mile bike ride. We've climbed to the peak of Mt. Baldy. We've done several other local peaks. It's just the preparation and the mindset and how you feel when you wake up the day off. Those are the important things.

Brian:    We will start a hydration cycle on Wednesday, getting ready for Saturday hike. We will ensure we are eating as clean as possible days before the actual event. And not only does that help her feel better the day of the event, but it allows us to push the body a little harder than we normally do because we are on a hike or we are on a bike ride. Um, we're going to discuss things like that.

Brian:    In addition, we're going to discuss medications. Medication trials that we're aware of. Proper clothing when you're outside in the sun, um being active.

Brian:    What else are we going to talk about? We have about 40, 50 episodes outlined already for this show. And in addition to just the Lupe and I, talking, we do plan on bringing guests onto the show. Not only those in the medical profession, but people that deal with a holistic medicine and, um, alternative treatments and things like that.

Brian:    Lupe is probably going to be brave enough to try some of those.

Lupe:     Absolutely.

Brian:    We're going to share what we felt. For example, we just tried to go off Plaquenil and how did that go?

Lupe:     Not well. So I went off of it on my own about a month and a half ago because I read in one of the forums, it wasn't necessary to take Plaquenil. And I thought to myself, well then why am I taking Plaquenil? That would be one less med that I take.

Lupe:     So, this was about a month and a half ago and yesterday I just felt like I hit rock bottom and I was back to square one from before I got diagnosed. So, Plaquenil really helps me because when I got off of it, um, I just.... brain fog... all the symptoms that I used to have prior to being on Plaquenil, they all came back. Yesterday I was really emotional. Good thing we decided not to record yesterday because I would have been a mess.

Brian:    She would have exuded that negativity we're trying to avoid.

Lupe:     I was reading all these forums and I just felt like they were affected me psychologically in a negative way, you know. And again, I wanted to let people know that there's positives as well.

Brian:    So, we're back on our meds, the way we're supposed to. The way they've been prescribed. Let me put it that way because I'm not a big believer in pills. I appreciate holistic approaches. But I'm also a firm believer in experimenting with maybe reducing dosage, reducing a med. Adding this, playing with this and finding a balance. Because, you know, one med might affect, you know, 10 different people in 10 different ways.

Lupe:     Because I stopped taking my Plaquenil but I didn't replace it with anything else. I just boom, cut it out.

Brian:    Right?

Lupe:     So, I paid for it. I'm paying for it today still. I'm not 100 percent yet.

Brian:    So, we're gonna get into those types of topics and discussions. And again, we're really looking forward to bringing the guests on so we can learn and we can share that education with you, the listener. And you, the listener, if you have suggestions, let us know. You can find us on Facebook, Instagram, Twitter. We are Sjogren's Strong. We're also going to be starting up a Living Sjogren's Strong group on Facebook.

Brian:    But, um, let us know what you want to hear. Um, let us know what you're finding difficult to research about. You know, many hands make light work. We can jump in and see what we can't come up with collectively instead of individually.

Brian:    We hope you'll come along with us for this journey. Hit that subscribe button in whatever podcast player you utilize, You will find this on iTunes, Stitcher, Soundcloud, eventually iHeartRadio, once we get five episodes published. But we really and truly are doing this for all of those, not only with Sjogren's, but those who love and support those with Sjogren's

Lupe:     Or any other auto immune,

Brian:    Um, obviously we're going to be Sjogren's focused. However, you know, a lot of the signs and symptoms and treatments are... can even be the same. So again, we hope you'll follow us along with this journey. And Lupe you got anything else?

Lupe:     I'm looking forward to sharing my journey with everybody. Um, I hope it helps you. I hope it helps people. I hope, you know, it helps people with the diagnosis. Um, I hope it helps the significant others to spouses because without my husband, Brian, life would be more difficult for me. I do appreciate him very much and I'm thankful for him. So I'm hoping that not only help the patient but also the loved ones.

Brian:    Again, thanks for listening and we hope you enjoy and we hope to interact with you on the Book of Faces and Instagram and Twitter. Until next time.

Lupe:     Talk soon.





Episode #1, Who is Sjogren's Strong