Multiple Sclerosis a.k.a. MS and Learning How to Thrive

Edie Sohigian

My name is Edie Sohigian. I grew up in a home where I was fearful every day. Fearful that my mother would find something she did not approve of. As a result, I did not care for myself very much and out of this grew an eating disorder. As an adult my lifestyle has been reckless at times while still being an over achiever. I've accomplished a lot in my career, but I am always a work in progress.

I was diagnosed with Multiple Sclerosis on Easter Sunday in 2015. Four days before that I checked myself into the hospital because I was numb from my neck to my toes. A neurologist told me that was the only way I was going to get diagnosed.

I say that my MS diagnosis saved my life. I was in a spiral of unhealthy behaviors from stress to sleep, diet, and movement. I've changed many aspects of my life since my diagnosis, but the most important is my mindset.

Social media and contact information:

Instagram: @thrivingoversurvivingpodcast and @edie_sohigian

Facebook: Edie Sohigian,

Thriving Over Surviving Website: https://thrivingoversurviving.godaddysites.com

Clubhouse: @edie.sohigian

MyMSTeam: EdieSohigian

Podcast transcript:

[00:00:00] Damaged Parents: Welcome to the Relatively Damaged Podcast by Damaged Parents where rejected, abused, thriving people come to learn. Maybe just, maybe we're all a little bit damaged. Someone once told me it's safe to assume. 50% of the people I meet are struggling and feel wounded in some way. I would venture to say it's closer to 100%.

Every one of us is either currently struggling or has struggled with something that made us feel less than like we aren't good enough. We are capable. We are relatively damaged. And that's what we're here to talk about. In my ongoing investigation of the damage self, I want to better understand how others view their own challenges.

Maybe it's not so much about the damage. Maybe it's about our perception and how we deal with it. There is a deep commitment to becoming who we are meant to be. How do you do that? How do you find balance after a damaging experience? My hero is the damaged person. The one who faces seemingly insurmountable odds to come out on the other side hole.

Those who stare directly into the face of adversity with unyielding persistence to discover their purpose. These are the people who inspire me to be more fully me. Not in spite of my trials, but because of the. Let's hear from another hero. Today's topic includes sensitive material, which may not be appropriate for children. This podcast is provided for informational purposes only and is not intended as advice.

The opinions expressed here were strictly those of the person who gave them. Today, we're going to talk with Edie Sohigian. She has many roles in her life. Sister, daughter, cousin, niece, and more. We'll talk about her struggle with multiple sclerosis and how she found health and healing let's talk

 Welcome back to Relatively Damaged by Damaged Parents. We've got Edie and let's see if I'm going to get her name right the first time...oh...Sohigian

[00:02:03] Edie Sohigian: Yes, you got it. Thanks Angela.

[00:02:07] Damaged Parents: Well, before the recording recording of the podcast and I was just was determined and I think I did. Okay. So Edie has multiple sclerosis. She's got her podcasts, Thriving Over Surviving. And really when it comes down to it, she says, I was barely surviving.

That is what I heard you say before we even got started. I wasn't even surviving or barely surviving. And now I'm thriving. Tell us the story.

[00:02:34] Edie Sohigian: Oh, geez. Okay.

So. So a big component is that I was just super unhealthy before I got MS I'm not like perfect now by any means, but in when I say that I'm not just talking about like my diet, it was a lot of different components. I was really stressed out. I had no balance, My sleeping habits were very off, just a lot of different components that contributed to my unhealthy lifestyle.

[00:03:03] Damaged Parents: When you say balance, I'm thinking you're not just talking about physical balance down, walking down the street. You're speaking of the greater, definition of like balance in your life. Am I right in that?

[00:03:17] Edie Sohigian: Yes. So I didn't have kids or a husband or any of that. So I just poured my life into my work. And , you know, I was working to live instead of living to work, I guess. I don't know whatever the, what, the, whatever it is, but I, I was all backwards. And so everything that I did revolved around my work.

And I think because of that, my work might've actually suffered a little bit because I was just so intense all the time.

[00:03:45] Damaged Parents: I think that's really interesting work suffered because you were so intense. Can we branch off there real quick? And you could explain how you recognize that. It sounds like later.

[00:03:57] Edie Sohigian: Yes, much, much later. So every day when I went home, I would call my dad on the phone and he'd go, how was your day? And I'd say interesting, because I was so stressed out, I couldn't even process the day and it would take me a while to unpack it all.

And he used to tell me, you need to find 15 minutes to 20 minutes every day.

Sit. I'm not talking about lunch. Just sit and relax and slow down because he recognized it in me. But of course, that self-reflection piece. I'm just thinking, I don't have time for that. I have these kids, I got to take care of and people need me and I have something scheduled every minute of the day. I can't do that.

And I would fight back and fight back. And the reality is because I didn't take that time for myself. I really believe that I might have made decisions that probably weren't the best. I didn't slow down and think about the people I thought about the actual getting the task done, not being on a list and being in trouble and living in perpetuating this fear in my head that I was going to do things wrong.

And once I took that step back and started slowing down, I started feeling more accomplished, but it took a lot to get to that place. And the MS contributed to that, for sure. It kind of forced me into that place.

[00:05:31] Damaged Parents: So it forced you into a place where you needed to slow down and find that balance.

[00:05:39] Edie Sohigian: Yes, so I was diagnosed in 2015. I have relapsing remitting, MS so, best case scenario, everybody. And I'm very blessed.

[00:05:49] Damaged Parents: Now, is that the one where you could be in a wheelchair like one year and maybe not in a wheelchair the next? Just is an example, right? Like that you could be out of it the next year. And then maybe a couple of years later, or a couple of months later, you could be back in it again, like that's what happens or how does that work?

[00:06:09] Edie Sohigian: The wheelchair is very indicative of MS but. It could be a myriad of things. But yes, you bounce back basically.

[00:06:19] Damaged Parents: Yeah. Just to give like the biggest example I could, but so it sounds like that actually might be a bias of mine though. That MS means wheelchair is that

[00:06:31] Edie Sohigian: You know, It's just not you know, living with it. And when you don't live with it, you don't know all those components. So yes, you may lose your ability to walk. Yes, you may lose your vision. And you go blind. You may be very numb all over your body. You may lose your bladder function. Completely.

So there's a lot of different aspects that even I wasn't aware of for a long time after getting MS, because my symptoms initially were numbness. I eventually went numb from my chin to my toes, and currently I have numbness or neuropathy in my hands. I also have pretty decent What does that call?

Not spasm, restless leg syndrome. And I get it in my hands and my feet. So there's, there's tons of things, there's pain and all of these different components that come along with MS but that was my, how I presented. So after the bout of steroids, I came back. But for three years, the first three years after my diagnosis, I was having relapses.

So I went on a disease modifying therapy, which is traumatic within itself because of the way it's administered and the side effects that come along with that. And not to be a huge bummer because that is not me. I'm not a huge bummer, but just to inform y'all. So you either do like an injection and that could be every day.

It could be every three days. It could be every other month, just depending on what disease modifying therapy you're on or DMT, we call it in the biz.

[00:08:11] Damaged Parents: that's that's funny, but, okay. So I think I'm stuck on, like you were saying, loss of bladder control or going blind or things like that, bouncing back. So you don't know when that symptom is going to show up and then you don't, you also don't know when or if it's going to go away and then come back again.

Is that, am I picking up on that? Right?

[00:08:31] Edie Sohigian: Correct. So when you have a, what we call a relapse and people call it all sorts of things, you can take steroids and most of the time, a lot of your symptoms subside. Sometimes they do not. So the, the steroids themselves have a lot of side effects that come along with that. They've given me vertigo before.

And that is actually one of my MS symptoms. So that's also a relapse when I get vertigo. I know I'm probably having a relapse,

[00:09:05] Damaged Parents: Even if it's triggered by the steroids.

[00:09:08] Edie Sohigian: no.

[00:09:09] Damaged Parents: Oh, okay. Okay.

[00:09:10] Edie Sohigian: So that's another thing though, really? Because you don't know if it's just something going on in your body or if it's your MS and you really, really have to pay attention to your body in order to figure those things out.

[00:09:24] Damaged Parents: It sounds like you would have had to really learn to listen to your body? I mean, that's the only way I can put it, but how did you do that?

[00:09:36] Edie Sohigian: Two and a half years after my diagnosis, I was not on any disease modifying therapies, just because I had taken a few that didn't work and I didn't know what to do next. So between hanging out with a couple of my friends that

had MS and learning about the new therapies and also doing a lot of research about overall health with MS

including diet. I made some very, very drastic changes. So for three and a half months, I was on basically a paleo auto-immune protocol for what I was eating. So. very specific vegetables, because some of them contain things that aren't great for people with MS like for example, peppers in the skin and seeds of peppers, there are these things called lectins and they can really mess with your gut if they don't agree with you.

And it's not true for everybody.

[00:10:39] Damaged Parents: So is that true for all night, shade, vegetables, then for you?

[00:10:42] Edie Sohigian: Yes. So, eggplant and cucumber and.

[00:10:45] Damaged Parents: cucumbers at night shade I didn't even know that

[00:10:48] Edie Sohigian: Well, it has the seeds in it. You're supposed to take the skin off too. So I make sure I remove that?

I eat the flesh,

but not the other part, , so I did that for three and a half months. It included, so I eat meat, but I was very specific about this. There was no, no antibiotics, no hormones, everything.

Very very healthy . I have a service now that I love, but anyways I did not have any sugar, any processed foods, any alcohol. It was basically the meat and the vegetables and nuts. I did have some nuts and seeds I do that now, but not then. So it was very, very specific and I went all in.

So that was kind of to prepare me for my next disease modifying therapy that I chose. And I just wanted to be healthier. I was very, very overweight. I still am overweight, but this was like very extreme. So I lost 70 pounds, well, 50 pounds in that three months, but that, wasn't why I did it. I really did it to just be healthy.

And I could tell the difference in my body. It was pretty incredible because I believe I have an adversity to gluten and I don't think that I have celiac and I need to go get these tests done, but

I definitely have an aversion to it. And when I eat it and different processed foods, I can feel it in my body and it manifests mostly in my hands.

And then the numbness that I have just gets more numb. So then I went on DMT and it was an infusion. So you basically sit in a seat for five days for eight hours a day and you have tons of stuff pumped into you, you get steroids, you get Benadryl and you get this medication. And , you get the steroids and the Benadryl, because it has so many possible adverse reactions.

[00:12:44] Damaged Parents: Oh, wow. Okay. I've got to ask. We are like part of the way through your journey and I'm thinking this is scary. You're sitting in this chair lots of things are getting pumped in and there's steroids and Benadryl on board for the simple reason that there's so many potential reactions. Emotionally, how are you doing and how were you coping in that time?

[00:13:07] Edie Sohigian: Right. So not amazing, but I didn't want to tell anybody that because that's not me. I'm this independent, amazing person who does everything for herself. And people were offering me rides to pick me up from the treatment. And I Ubered because I don't want to put anybody in a bad place. So I held everything in.

So even though I was dieting, right. I was exercising way more. My mind still wasn't there. I was still in that unbalanced mindset of working, probably too much still and not focusing on my emotions and relationships and things like that

[00:13:53] Damaged Parents: yeah, it sounds like pushing away too, because people were asking and you were still like, no, I got this

[00:13:58] Edie Sohigian: Yes.

[00:13:59] Damaged Parents: such a type A personality is what I'm thinking.

[00:14:03] Edie Sohigian: Yes, I am. I am the oldest child. I am a Capricorn. I am all of those things that lead to that. Yes.

[00:14:10] Damaged Parents: I can't possibly need help. I don't know what you're talking about. I got this. , it's like seeing somebody dragging a broken leg. No, I'm good. I got this.

[00:14:19] Edie Sohigian: Yeah, you got it. That's right. That's right. So I remember one time I was, so I'm an administrator. It was at this.

time I was an assistant principal and I'm walking through the hallway and all of a sudden my keys are in my hand and they just flew back because I dropped them and I didn't know they were gone until I heard the noise and somebody next to me was like, are you okay.

And that kind of stuff happens when you're don't have your mind right in the balance in, even though I was getting healthier with my diet and exercising and just it still wasn't working. After I took the DMT. I continued that job, but in the summertime I had an opportunity to take a different position and I didn't really want it because I thought it was going to be boring.

[00:15:10] Damaged Parents: You whisper it still.

[00:15:13] Edie Sohigian: uh, And I, didn't want to leave the school. And I liked being there and it filled me up in so many different ways, but I didn't realize that it was what it was doing to me stress-wise and all of that. So I reluctantly took the job. And for the first two years, I kept pushing back. I felt unfulfilled.

I wasn't helping enough people. I wasn't working hard enough. I was bored. So I went and got a second job as an adjunct professor. So I'm still

going right. I'm still going. Cause when I first got MS doing way too much. I was doing my dissertation. I had just changed jobs. I had just bought a new house.

It was crazy town. So of course I just keep going.

[00:16:02] Damaged Parents: I've got to go back to the five days in the chair real quick,

because if your mind is like this, how was it? I mean, how in the world did you cope with those five days, eight hours just sitting there. because I know for me It was really hard to get quiet.

So you were forced almost into a five day sabbatical in the chair. I'm sorry. I'm chuckling about it, but I'm picturing if somebody would have basically strapped me to a chair, I don't know that I would have been okay with that. And

[00:16:33] Edie Sohigian: It wasn't easy and it was hard on the way home

[00:16:36] Damaged Parents: On the way

[00:16:37] Edie Sohigian: home.

Yeah. It was an hour long drive home.

after each treatment. And that was when I was, really alone and thinking about what was happening. Yeah, I did. I felt lonely. I think that would be the description, but I wasn't doing anything to alleviate that.

[00:16:55] Damaged Parents: So maybe when you were there in the chair, I know I'm spending really a lot of time on that, that quiet time when you were in the chair, was it that there were like people around, so it was easier to, not find that quietness inside of you maybe, or then maybe there was enough quietness that on the way home that then it was like, oh, this is really quiet.

I don't know. I'm trying to investigate that.

[00:17:20] Edie Sohigian: The steroids make you very tired. The Benadryl, excuse me. The Benadryl makes you very tired. So , I slept a lot of the day

[00:17:28] Damaged Parents: Okay.

[00:17:28] Edie Sohigian: and there was a nurse in the room. It was a very small room, closet size, and there were three chairs so that people could get infusions, but it was also a storage room.

There were people in and out all day long and the lights were on. So you slept because you had to, but it.

wasn't a really comfortable room. So I was on alert all the time. Plus what's going through my mind is what are these people taking who's over here doing this and just thinking about being at the doctor's office.

[00:18:03] Damaged Parents: Okay. So the ride home was really when the quiet started to come in.

And do you start to have that lonely feeling? Okay. Okay.

[00:18:12] Edie Sohigian: For sure. So at night too, when I got home, you know, they kept the IV in my hand. And if you've ever had an IV in your hand, it's not the most comfortable thing. It doesn't hurt, but it's, a reminder that this is happening. And it feels awkward and you can't take a shower properly. So all of those things were very hard to deal with.

But I knew that it was going to end in five days. So at the same time, that was going on. But after you have the treatment that I did your immune system is completely depleted. It is a low grade form of chemo, but in a very short period of time, You know those five days, so it's intense too.

And so all your good blood cells are just out of you. So I had to stay home from work and I started getting sick, like strep throat and ear infections, just as a result of my immune system being so poor. So all this COVID stuff that's going on, I was ready for it. Cause I had to stay home for a long time and I get all my groceries delivered and all those things.

So it ended up being a good six weeks that I wasn't working, which was again tough for me. Because I was a workaholic. So you know that I was doing things on the computer when I was home, which I probably should have just been resting. So

[00:19:32] Damaged Parents: that would not have been you. It sounds like though

[00:19:34] Edie Sohigian: yeah.

yeah, for sure. Fast forward, back to the summer, I took that other job and my mind still wasn't really right.

I was still trying to push for more. I had a second round of infusions for three days a year later,

[00:19:51] Damaged Parents: Okay.

[00:19:52] Edie Sohigian: back all of those things, right. That were going on with me.

[00:19:56] Damaged Parents: And did it trigger also some of the initial stuff the second time? Like, did you find it bringing up some of those same thoughts and concerns and things like that

[00:20:08] Edie Sohigian: The anticipation of the second time was worse than the first time,

[00:20:12] Damaged Parents: Okay.

[00:20:13] Edie Sohigian: because I knew what was coming. I did have, I definitely had side effects, So I had a broken out in hives several times from the first round I had rosacea on my face. Just a couple of different things, but very minor, but I knew those things were going to come back

[00:20:30] Damaged Parents: Yeah. And so how did you keep taking those steps forward with, these challenging experiences and knowing that that could happen again? I mean, anything can happen again, but you know, you're walking into this. Was it hard to stay in a good mindset?

[00:20:48] Edie Sohigian: I don't, I don't think I allowed myself not to be

[00:20:51] Damaged Parents: okay.

[00:20:52] Edie Sohigian: Because I don't let myself off the hook. Right. And I don't allow myself to be in a place where I'm sad. And if I do, I feel bad about it.

[00:21:04] Damaged Parents: Wait, hold on. Let's talk. Can we talk about that real quick?

[00:21:07] Edie Sohigian: Yes.

[00:21:08] Damaged Parents: Only because I think that a lot of people probably do that. Like if I'm sad, it's not okay because I'm supposed to be happy. And yet sadness happens. So , what do you do then?

[00:21:20] Edie Sohigian: Yeah. So I am a big talker and I definitely talk it out with people that I trust. I have like a couple of very close friends in a share those things with them and my family, my family's amazing so they allow me that outlet to share, but I personally don't dwell in that place. I don't live in that place of unhappiness.

It's just me. Now the type a personality comes into that too. Right? So now I feel like I'm completely different, but it was a lot getting there because I had to let myself understand that I didn't need to be busy all the time. I didn't need to, I'm helping plenty of people. I don't need to be a stress case in order to be doing good work.

So all of those things were coming into play and I feel like I'm all over the place,

[00:22:17] Damaged Parents: That's okay. This that's how this organic conversation happens. And anyone who listens to the show knows that we're just going to go down the roads. That seem really interesting. Or from my perspective, if it triggers something, there's a reason it triggered it because I'd meditate beforehand. And I try to just be open to what the universe wants to share with us or the whole, or the spirit or whichever, whatever you choose to call it.

So it's okay to be all over the place. Life, I think sometimes is really messy and. It's okay. That it's messy, at least that's my thought. I'm not sure if everyone else would agree, but that's my perspective.

[00:22:57] Edie Sohigian: The thing is it's Okay.

if it's messy, but I can't handle it. Right. So I did that Myers-Briggs personality thing a few times, and it always came out the same. And I have the most rare personality type because I don't even, I wish I remembered what it was, but there's like a judgment thing in there, but a lot of it is judging yourself. And so because of that, I call it reflection, but really I'm judging myself, Edie you shouldn't do this and you shouldn't do that. And you're a bad person because you do this thing and right.

[00:23:31] Damaged Parents: So you would do that with sadness too. I'm thinking.

[00:23:33] Edie Sohigian: yes,

[00:23:35] Damaged Parents: Got it.

[00:23:36] Edie Sohigian: For sure you shouldn't be crying. You have so many great things in your life. Get over it.

[00:23:40] Damaged Parents: Okay.

[00:23:40] Edie Sohigian: that kind of thing.

[00:23:41] Damaged Parents: did you have to get comfortable with feeling the feeling or how did you process that? I don't even know if that's the right way to ask the question.

[00:23:50] Edie Sohigian: I think I'm still working through that.

[00:23:52] Damaged Parents: Okay.

[00:23:52] Edie Sohigian: But I have tried to bring a lot more joy into my life. So then I don't get that feeling. And. No, when I do, it's very difficult for me to process it. And I ended up very overwhelmed and I feel out of control and I don't like that.

[00:24:13] Damaged Parents: Okay. So like this conversation being that it's kind of been a little bit all over the place probably is triggering that uncomfortable feeling a little bit. Yeah.

[00:24:23] Edie Sohigian: a little did you see me fidgeting and my chair just now.

[00:24:26] Damaged Parents: No, I wiggled a little bit, but I was just thinking, oh, this is very uncomfortable. And you're doing such a great job. And I thank you for being uncomfortable in talking about. How for some of us, it is uncomfortable. And in learning to let go of a, for lack of a better metaphor, the rope is very scary.

I like to pick it up a lot.

[00:24:57] Edie Sohigian: For me, disappointing people is probably the hardest part. I don't want to ever disappoint anybody or allow people to feel like I let them down. Like for example, I am invited to a wedding in September It's a college friend. Three of my friends are going and I'm not going to go because I'm not traveling right now because I feel like my immune system could not handle that.

And I can't bring myself to tell my friend that I'm not coming because I don't want to disappoint her. And I know she's going to understand. But at the same time, like I told all my other friends, so they know. So I'm almost hoping that they tell her because I just can't face her. And there's no reason for that.

This is my decision. , I saw her a couple of years ago before the COVID. We're going to probably see each other again, I just feel bad that I'm missing her life event and not supporting her. And instead of, being like this is because of me and I need to do this for myself. I'm thinking more about her than me.

[00:26:04] Damaged Parents: Well, and it sounds like you really do want to be there for her. And I think that would be really hard because you're making this choice for you and you also really want to be there. And. That is a really hard place to be because it's almost like , my thought is you've got two sides of yourself kind of bickering and, or not bickering, but because you've already made that decision, but maybe going, .

but, but, no, that's not what I really want to do. What I really want to do is be there. And I know that this is that's for me right now. Does that make sense?

[00:26:41] Edie Sohigian: Yeah. Yeah. I just feel like I'm being selfish and I don't like that feeling. And I don't want other people to perceive me that way. And it might be more about their perception of me than actually the way I feel about it. And so that's an issue for me about how other people feel about me. I'm a pleaser.

And I don't, like I said, I don't want to disappoint anybody. When my father or somebody comes and says, I think you should rethink this. I'm like, well, I'm disappointing them and it just floods a whole bunch of emotions. And again, I have a really hard time handling that and it manifests itself in me eating.

So I eat to combat that. So when I did those three months of, just eating. You know what I should really to make myself feel better. I felt like I was changing my entire life. I'm the social person. I'm always the one to order the bottle of wine for the table. that kind of thing.

I'm the hostess. And I just basically didn't hang out with my friends and I felt, you know, food is something that brings my family together. So it was really hard for them not to understand what I was doing. And so that brought up a whole bunch of things too, for me and yeah, so I have major issues around food and that's how I deal with a lot of my emotions instead of sharing them. Yeah, it's good times over here. It's good time. So MS is not the only bananas, but it's probably a result of all of these things because things that bring on MS are stress big time stress is a huge one.

[00:28:20] Damaged Parents: Is there not like some genetic component or something in there too, or maybe it's an expression of a gene. I don't know

[00:28:27] Edie Sohigian: So there's trying to figure that out. And there are a lot of people that have a relative that has MS, in fact, a lot of people that are twins, both twins have it I know some sisters that have it, so it's definitely a probability, but I think it is my personal opinions. It's about the environmental toxins that are handed down to you through your mother and father that they've all experienced and it's just accumulating.

[00:28:59] Damaged Parents: So, are you talking about like generational experiences or the historic, what do they call that? But like three generations will impact. I think they've figured out at least three generations, like the emotional intelligence of, me or you. They could go back three generations and say, yes, it was impacted or something like that.

Is that what you're talking about? Or are you, or maybe, are you also talking about the toxins of whether or not they were alcoholics the different types of foods they ate or is it one or both or all of the above? Maybe. I don't know.

[00:29:33] Edie Sohigian: All of those things. And again, I'm not a medical doctor. I don't really know.

This is just my perception. Right. And Yeah.

I think it's a combination of all of those things. And I know people I've interviewed people that have moved to a different country to get a better air quality and less stress from their current environment that they're in.

And it has helped them. To alleviate a lot of their symptoms or completely annihilate them. So it as one component. But I think that there's a myriad of factors. There's another podcast that I listened to, it was a brilliant doctor and he talks about the oh, now I can't remember my train of thought.

So this is a symptom of MS I lose my train of thought all the time. So I apologize for that, but, there's just a lot of different components that can go into it. And for example, your gut brain health is one big component of that. And so when you have, multiple parents, That are eating fast foods all the time or processed foods all the time.

That's going to stay in them. It gets , in your body, it's in your blood and your DNA, all of that, right. just like they talk about anyways, I'm going off on a tangent again, I'm not a medical doctor, but all of these components add up. Oh, I remember what I was going to say. So he just last week was talking about.

There are things that come into your life. Viruses, for example, that provide triggers. So I probably was destined from birth to have MS if specific things happen to me. So I had mononucleosis, I had a lot of bouts of strep when I was little and all of these viruses in me accumulated plus the stress plus the unhealthy gut plus this and that.

And all of those things for me led up to my getting MS and manifesting in this, numbness in my body. Now there's different forms of MS and there's a lot of different theories about what causes it, but I believe that's what happened to me. So it's really weighing because there's a part of it that says, well, you couldn't have known that getting strapped and mono, we're going to lead up to this right

but there's a little bit of it that says, well, if you had eaten healthy Edie Maybe that wouldn't have happened. So there's some guilt on me for that too. And I truly believe in anyone diagnosed with a chronic illness as I have, has been through trauma. So that trauma also manifest itself. Very interesting on your body as well.

So just lots and lots of different components. And I don't think most people are aware of all of these things to even say that they can. Stay away from them. Stay clear of this eventually happening because we all think that nothing's bad is going to happen to us when we're young, too. Right. So lots of different things contributing.

[00:32:42] Damaged Parents: There's, some new science out there or pers, I don't know if there's been any science on it that there's this, maybe it's just a hypothesis. I'm not sure that trauma is throughout the body. And there's like these imprints in the nervous system of what happens with trauma and that then maybe some of these other things happen, you know, it just gets to be a domino effect.

And I don't know that we can definitively say with anything right now. Yes. This, this is exactly what, unless there's clearly an event

[00:33:14] Edie Sohigian: Absolutely. Yep. With this, you can't, you can't identify what that is. Really. It's very all over the place. So moving forward, know what my triggers are. Like if I eat Doritos, forget about it. My hands are on fire. So I eat Doritos, but you know, moving forward, there's just things like I need to move every day.

I need to move somehow. And if I don't, I start to have lots of aches and pains and it's just my body. That reacts that way because every single person that has MS is completely different, which is crazy too. Cause they don't know how to deal with that.

[00:33:54] Damaged Parents: So you have to really, it would seem like, to me be an advocate for yourself in that this is what is happening and really become a T. How do I want to put that? Just enlist your doctors into you guys are on a team together and it's not just, they know it's you have your experience and they have some knowledge.

Now we need to put this together and come up with a plan type of thing.

[00:34:22] Edie Sohigian: Yes. And it's challenging for them too, because as medical professionals, they have medicine and surgery and that's for the most part, how they deal with some things, Right.

So you really have to seek out those people that understand. The nurse practitioner that I go to her daughter has MS.

So she knows both sides of it and is compassionate to both sides and talks to you about the holistic component. Also, not a lot, like I have to ask. But because of that, I feel more comfortable with her talking about all those things too, but yes, you have to be your biggest advocate and it's something that you don't realize at first when you first get diagnosed, you think, well, I did at least that this doctor knows what they're doing and I should just do whatever he says and if I can get a message out there, that is the last thing you want to do.

[00:35:22] Damaged Parents: Yeah

[00:35:24] Edie Sohigian: Because you need to find out what works for you. And I think that's true for a lot of autoimmune diseases. Now, do I regret taking meds? No, I did. What was right for me, for sure. I know that, especially because I have an eating disorder and it's. Not like it's completely under control. So if I weren't to do the meds, I think that I would be , in a different place right now, maybe more progressed.

So , I'm glad that I did that. And I really, looked for. That thing that was going to work for me. , I didn't just make a split decision that last time I was like, I can't do that. I need to think about this. So growing constantly growing.

[00:36:08] Damaged Parents: right now, at some point, I'm thinking when you had the first five day treatment, and then later you ended up with a three-day treatment when you were going through the first one, did you think, oh my God, this is going to fix me and I won't have to worry about this anymore. And you're nodding your head.

Yes.

[00:36:27] Edie Sohigian: Yeah.

[00:36:28] Damaged Parents: and then it wasn't fixed. So how did you cope with that?

[00:36:32] Edie Sohigian: Well, to my knowledge, I haven't had a relapse since that?

first infusion,

[00:36:37] Damaged Parents: Okay. So was the second one? Just

[00:36:39] Edie Sohigian: so it's a two rounder, right. And some people still have new activity and so they actually get three or four rounds

[00:36:48] Damaged Parents: Oh, wow.

[00:36:49] Edie Sohigian: Because most of the time, the medication that I took helps a lot. So even though you have relapses, you still see less progression or, better your symptoms are lessened.

[00:37:06] Damaged Parents: Okay. So like you were saying, sometimes you, you have the numbness in your hands and sometimes it's worse or better, so you didn't get totally fixed, but you haven't all, you also haven't relapsed. Is that, am I interpreting that correctly? Okay.

[00:37:21] Edie Sohigian: even if you don't have symptoms, even if you don't have relapses, you always have MS. There's no getting rid of it. Some people say they're in remission that I don't believe in that. But you can get as good as you can. But knowing that you always have this, so you have to do certain things to make sure that you don't have a relapse.

Yeah.

[00:37:42] Damaged Parents: So that's where it comes in, where you're saying learning to take care of myself, learning to make sure I have quiet time for myself, learning to cope with some of these feelings or, to keep learning and growing in the best way you can for you.

[00:37:55] Edie Sohigian: yes. So I continuing on with the work journey, right? So I'm in my fourth year in this job and it wasn't really until my third year that I accepted it and I said, Okay.

This is what balance looks like you work and you come home and you do something different for yourself. Ah, Okay.

That's good. That's a good thing.

I get to, go home and not be stressed out. This is wonderful. So I finally am in the acceptance mode, but I was still sitting there going, I'm doing things for myself, but I don't feel fulfilled still. So that's when I started getting into I got into clubhouse and the whole online community, and really started to listen to what other people were going through and hear other people's stories and be inspired by them and share other people's stories and help to inspire others.

And that has really changed my overall outlook on moving forward because I can't live in a state of negativity. I realized that I turned all the news broadcast off. I don't have cable. I don't want to hear the news. And a lot of people wouldn't agree with me because, they want to know and hear.

And if I want to know inherent, I'm going to look for it, when I need to have COVID news, I'm looking for it. I don't want to hear how many cases there were today necessarily. In politics was a big one. I have my views. You have your view. I don't want to hear people arguing it, it doesn't help me in any way to be in that area.

So that was a big thing for me, was shutting off the TV.

[00:39:37] Damaged Parents: Yeah.

[00:39:38] Edie Sohigian: And it allowed me opportunities to do other things also because honestly, and I say this all the time, if there was an Olympic event in coach potato, I would be that person, somebody told me the other day, they need to be a fit potato. You can sit on the couch and be fit in enjoy it, but also do things to make sure you're fit.

So I was like, all Right. I'll try to be the fit potato, but.

[00:40:02] Damaged Parents: And it sounds like too, I'm betting that this is when the, in the podcast, it came around thriving over surviving.

[00:40:10] Edie Sohigian: Yeah. Yeah. I really didn't never want it to do a podcast about MS because again, I didn't want to live in that place of negativity, so it wasn't until I started to find these inspirational people that really, it's not like they're all fitness buffs. It's not like they're all, Eating kale every day.

It's not like that, but

[00:40:34] Damaged Parents: Well only because I saw a meme about kale.

[00:40:38] Edie Sohigian: Oh really?

[00:40:39] Damaged Parents: I can't remember, but it was like, please tell me it's not kale.

[00:40:42] Edie Sohigian: I hate that stuff. It's gross. I interviewed somebody and she was talking about kale she's like you gotta try again. And I did a little bit, but it's not for me

[00:40:50] Damaged Parents: No, no, not for me either.

[00:40:54] Edie Sohigian: It's a realistic conversation. Now, some of them are holy macaroni, like golly, but you know, I've interviewed people that are in wheelchairs but they're not sitting there going, woe is me. They are looking for avenues to help themselves help each other. That's.

why I say thriving is, different for every person, because my version of that is right now, I feel like I'm living that right now and sharing my story and sharing other people's stories. It fills me up and I'm hoping that it fills other people up, but there's a difference for everyone about how they thrive. And we explore that a lot, but it makes everybody's story unique. And because I'm listening to these other people, it says, you can't sit there and feel sorry for yourself because these people have come back from so much. That I can do that too. I might not be the workout queen or like I said, the kale eater, but I'm going to do what's best for me to live my best life

and

[00:42:04] Damaged Parents: I love that you really point out it's about what's best for you because. I don't hear you saying, you know exactly what I need to do for me. I don't hear you saying I know exactly how to help the, guests that come on my show, what I hear you saying is, I don't know. And I learn a lot from them and that's fantastic.

And they have a purpose too, regardless of whether they're in a wheelchair or they're in the midst of it, struggle, it doesn't matter.

[00:42:32] Edie Sohigian: No, and I'm learning so much from each person and it's not necessarily like academic stuff, like sure. I've, learned a couple of things medically, or diet wise and things like that, but it's more about their mindset, honestly. And I know we kind of started off talking about that, but having that, the mindset of this isn't my final destination.

There are so many things that I can still do. I need to make the most of every day. And Someone taught me now, I need to live for today. I don't need to live for tomorrow or next year. That's hard for me because I'm a very futuristic person. I'm a planner that A personality. I like to cross things off a list and say, oh, by 35, you should be married with two children, Edie.

How dare you not be in that situation? You should feel terrible about yourself. I've really left that behind because you can't compare yourself to others and what is going on in their life isn't necessarily what you need. So don't just go and marry that guy because you should be married or do this activity because you're supposed to do it.

Right. You need to do things that, that make you happy and fill you with joy. And don't hurt yourself basically. And when you're doing things that harm yourself, whether it be physically or emotionally, it's important that you recognize when those things are happening and then don't beat yourself up over it.

So I would binge eat on Monday night when I get home, cause I was stressed and then I ruined my whole day. And then I ruined my whole week. I didn't have that reset every day. And I'm working toward that reset because I was really brutalizing myself for not living up to the standard that I thought I needed to be at.

And I don't, I don't need to be there. I need to be where I'm most happy and fulfilled. And I'm trying to live that life. It's exciting.

[00:44:41] Damaged Parents: I love that. Well, you know, the other thing that's coming across is you just really went down a list of things people could do right now, which I usually ask for at the end of the podcast anyway. And I'm thinking, I don't even have to ask this question because you just told us.

[00:44:55] Edie Sohigian: I'm glad I could help.

[00:44:59] Damaged Parents: You're right on track today. That's perfect. Thank you.

[00:45:02] Edie Sohigian: I'm glad I could do that. I really, I don't make excuses for if I have bad behavior, I really own up to it, but I don't beat myself up for it. you. know? I also say, we're all sinners. We all don't do everything right. Every day we make bad decisions, but tomorrow's a new day.

[00:45:20] Damaged Parents: Yeah,

[00:45:21] Edie Sohigian: And uh, take that time to reset. It's important.

[00:45:24] Damaged Parents: It is. Thank you so much, Edie for coming on to the show. I'm so glad I got to have you.

[00:45:30] Edie Sohigian: Me too. Thank you. for inviting me.

[00:45:33] Damaged Parents: Thank you for listening to this week's episode of Relatively Damaged by Damaged Parents. We've really enjoyed talking to Edie about how she learned to thrive with multiple sclerosis. And share her journey. We especially liked when she explained how there are different aspects to everyone who has M S. To unite with other damaged people connect with us on Instagram. Look for Damaged Parents.

We'll be here next week. Still relatively damaged. See you then!