Brandy (00:01.358)
Hi, this is Brandy Schantz, and you're listening to Living Chronic. Today I wanted to just take a moment to discuss where I am on my journey and how I've been feeling about what I've been trying to achieve. I think I've been a little confused as to exactly what I was doing many days, probably because I've just been surviving some days and then other days.
I've been frantically clawing. It's something that's going to make me happy. I think I sent about a thousand different vacation options to my husband last year. We actually went on three of them trying to get me to smile. This year has been no different. I decided to transition out of the business. I've been running for 10 years. And when people ask me why,
all I could say was I'm just not happy I'm trying to be happy again. So I think many of us are the same. I say that over and over again the greatest thing I've learned since starting Living Chronic is that I'm not alone and I'm really not any different than anybody else going through this. I used to think that I was a big failure, I was alone, that
wasn't responding the way I was supposed to the things that were happening in my life. And of course, I've just been so fortunate since starting this podcast to be able to speak with so many people and learn that my life is not that different than other people living chronic. And we all make mistakes and we all falter and we all have moments of desperation and moments of triumph.
and it just depends on the day. For me I was really trying to put a definition behind what I was feeling and where I was going though. And I just couldn't figure it out what is it that I'm striving for here other than please don't be depressed which is a very good goal. But I couldn't quite define the problem if you will and that's what I really needed to do
other than I have been sick for years for the first time in what feels like forever. I'm in you know symptom-free remission. I still don't have my body back. I have many other issues of course you know with the fibromyalgia with you know the drug induced lupus left some permanent damage on my body but all of that aside
you know, to be able to wake up each and every morning and not be doubled over in pain or unable to leave my house because I need to be no more than 10 feet from the bathroom at all times. It's really surreal in many ways. So I really kept thinking to myself, what is it that I'm trying to achieve here? And it took a lot of time. That's what I've learned most.
throughout this journey. It just doesn't happen overnight. You don't just wake up one day and say, okay, I'm better, no issues here. As a matter of fact, it was me trying to do that got me to where I am today. It wasn't just an overnight thing. It wasn't just the drug induced lupus that broke me. It wasn't just the fibromyalgia that broke me. It wasn't just the, to be frank,
day in day out, severe GI issues and constant in and outs of hospitals. It wasn't just one of those things that broke me. It was more of a cumulative effect. And most importantly, what I've been able to realize through a lot of introspection, a lot of talking to other chronic patients, a lot of therapy, I've learned that I just lost control of my life.
And it's not just that I'm type A and I like to have control of things. It's also that I have zero control. And that's what was bothering me. It's because I've responded to my disease every day since 2013. I have never sat down, thought through what I want in life, made a plan and followed through since 2013.
And why is that a problem? Well, one of my biggest goals with this podcast is to help people to learn how to thrive, not just survive. And the reality is I was just surviving for 10 years.
I'll admit it, I hated my job. I hate being a realtor. There's some rewarding moments, don't get me wrong. There really are. But it was never fulfilling. It was never anything that brought me joy. I did it because I could work from home in the mornings when things were really bad. And then I could do all of my appointments in the afternoons and evenings when I could get out of the house. It was a job that I could.
make phone calls from sitting in the hospital. I could do that from the clinic. I could do it from my bed. So it was very flexible for me. I could bring in people to do the stuff that I couldn't because of my health. It just gave me a freedom and I will never discount that because I've tried to go back and look over 2013 and the severity of my disease.
desperation I felt of where do I go now that I have these health issues and there's no real point to it. I'm not sure if things could have been any different. Maybe I could have just gone on a temporary disability and tried to figure things out. You know I did the best I could for me and my family at the time and I won't apologize for that actually but I do think it's too long overdue time.
for me to take control of my own life and make the plans and then just position the Crohn's within those plans rather than revolving the plans around my Crohn's disease. And I know how to do that now, of course. No doubt it's a lot easier being in remission. We all know remission is a happy place, but I'm also being honest with myself knowing that a flare can happen any day.
I've been doing really great for a while now, but a flare can happen and I need to understand that whatever I do next, whatever my next step is in life, I need to take that into consideration. I do not ever wanna be in the same position I was before. I don't wanna have to make the decision to go on short-term disability unless there's something in my life that requires it and that can happen, but there are many, many careers out there.
where I can just work from home, same as I did in real estate, and then come back into the office when my body allows me to.
I also want to position my life around the other things that I want, you know? What are my goals with my husband? What are my goals with my family? What are my goals in terms of where I want to be in 15 years? And I want to think of that in terms of me, not just my Crohn's disease. So really defining the problem, what I learned is I just need to take control of my life. I need to get my life back.
I've allowed the Crohn's disease to own my life for 10 years. And that's what was making me so depressed. That's what was making me, I call it crazy. We probably shouldn't use the C word, no crazy. But it felt that way to me. It felt like I was going crazy. What's wrong with me? I feel depressed, I feel angry, I feel sad, I feel hopeless, I feel lost, I feel like I can't pull myself back up again. And.
Defining the problem was really just me figuring out a way to get control of my life back And that is difficult in and of itself. It's been helpful to define the problem So I'm in a much better place get my life back. What does that entail? and a lot of it is Working hard to figure out the next steps Finding the right spot
figuring out where I want to be in 15 years, I have not thought of myself in terms of a life that's not centered around the Crohn's before. So that's something I'm having to put forward a lot of work to do. Thank goodness I did start this podcast because I feel like there's been so many people who have helped me in such amazing ways and in tremendous ways. You know, when I think about...
Emma who talked about yoga and some of those concepts, ahimsa, do no harm. You know, that's been really important for me in looking at the rest of my life and what are those goals in 15 years and what do I want to be doing? So I'm very thankful for that. And I hope that many of these shows have come together for you as well. Even if it's just been one little thing, something that can help because
I know for me it's the people who've come here have just really done so much to help me get to the next place and I'm thankful for that. I'm thankful if they helped me to figure out what was wrong with me and how I can better help myself as I go through this because it's been difficult. I can never explain just how hard it is to be knocked down over and over and over again and have to figure out a way to pick yourself up.
each and every time. That has been what has been the most difficult for me this most recent health issue. I've just been knocked down so many times and I've worked so hard to get up that it felt and many days still feels almost impossible to get myself up again. It really does feel impossible some days and
I use the tools that I've learned through therapy, my guests, you know, the yoga, I really love that one. Emma did so much for me there. Um, the psychiatry, Potomac psychiatry. I really love them. This total wellness thinking in terms of everything that I'm doing in my life. It's really been helpful. And hopefully things continue to get better. I am very optimistic, honestly.
everything is getting better even when I'm having days where it feels impossible I realize well it has gotten better so I just need to keep focusing and trying hard and looking inward and figuring out what is most important to me. My volunteer work has been instrumental as well. It's very helpful when you're doing something for others. I think it has done a lot to better
helped me help myself as well. There's something about that outreach. So still working with the Crohn's Colitis Foundation, that has been an amazing opportunity for me. We have another advocacy day coming up. I'm really excited to get back in there, keep talking to my congressmen about the importance of many of these bills that come across their desk that help people like us.
I have been very heartened to learn that there's a lot of work being done at the FDA. I spoke with another member of the junior league who works at Amazon. I'm cheering you on Amazon. They have some machine learning that she wants to see implemented, particularly in the adverse reaction database. Yay. That's exactly what we need. So I've of course volunteered to help in any way possible because it's...
It's so important to me for obvious reasons. I honestly don't want this to ever happen to anyone else. And I know that many of these reactions could be completely, you know, avoided. Maybe you can't avoid a reaction to a drug, but your doctor can identify it quickly if there's the correct strategic communications plan and the right kind of technology being used to record these kinds of reactions in people taking the drugs.
I even read a more recent study that showed that as many as 30% of patients taking some of these biologics do get a drug induced lupus type of reaction. That's a huge number. And if it's accurate, I would like to see better systems in place at the FDA so this can be communicated to doctors. So I'm very heartened to see that happening. And you know, I'm hoping that through my volunteer work, advocacy work,
that maybe we can see something better on that end. The other thing I really want to see is more help for disabled in the workplace. And that's something that I'm really starting to focus in on more because having a chronic illness did change my entire life trajectory. And I think back to some of the tools that we have in place in the VA Veterans Affairs for
service members transitioning out of the military who are now disabled in some way to better understand how they can work with their disability, how they can find accommodations that will allow them to continue working, how they can find new careers that might be a better fit. If you were a special forces soldier who lost a leg in Afghanistan, which is something that happened to a friend of mine and my husband's,
you obviously can't be a Special Forces soldier anymore. So he did get a lot of help through the VA to transition and start a new career. And of course he was able to use the tools that he already had. And I think that's really the big so what when it comes to employment. I have a lot of, you know, just really great experiences. And then of course, great experience in working in and of itself with military and VA. And
Honestly, as bad as things may have been 15, 20 years ago, they're so good now and they've been the right tools implemented to help disabled veterans. So I really wanna see those implemented in the civilian community. And hopefully I can do some good work there too. That's really what taking back on my life is about when I want to get my life back. It's about doing the things that are meaningful.
And for me, a lot of those steps came in through volunteer and advocacy work. And I'm very grateful that I've been able to find that and make those changes in my life and find the positivity even when I didn't think I could find anything positive or optimistic about my life at all. So getting back my life.
Thank you to everybody who has been on this show so far, and I'm looking forward to having people back and new people coming on and sharing. It's been instrumental in getting me through a very dark period of my life. Still working hard, I still have a long ways to go, but today I really wanted to take a moment to say thank you to everybody who has been here on Living Chronic, because
You've truly made a difference in my life. And...
Brandy (16:59.198)
It's about all of us coming together because when we work together that's how we get our lives back. Thank you for listening. This is Living Chronic.