Episode 138: Morgan Greene – Is, Was, Will Be with MG

Episode 138: Morgan Greene – Is, Was, Will Be with MG

Overview

Morgan Greene is a chronic illness and holistic wellness blogger and content creator at Is Was Will Be blog. After being diagnosed with rare chronic illness Myasthenia Gravis (MG), Morgan started writing to process her experience — “serving as both therapy and accountability” for her, as she so aptly puts it. As her journey progressed, she found solace in putting into words what many of her fellow Spoonies were experiencing. What started as a hobby has turned into a passion, as Morgan continues to spread awareness about living with chronic illness and inspiring women to live their illest lives. As she details on her blog, “I challenge you not only to share the journey with me, but also to start one of your own. It is my hope that through my words, you will find the fuel to ignite your own personal revolution. That you will finally start living according to your own…happiness. There’s no easy button. It’s not going to happen tomorrow, next week, or even next month. But if you just start, one day you will be able to wake up to a life you made happen.”

Takeaway

Transcript

Morgan Greene IsWasWillBe Is Was Will Be Blog blogger chronic illness self love myasthenia gravis MG Uninvisible Pod Spoonie-ful spoonie Chronically Candid Conversations

Lauren: Okay guys, thank you so much for joining us. I am here today with blogger and content creator, Morgan Green. Morgan focuses on holistic healing with chronic illness and lives with myasthenia gravis, also known as MG, and she just told me sort of a wonderful way to remember it … her initials are MG and so are myasthenia gravis’s initials! So kind of a perfect combo there, Morgan! Thank you so much for joining us today!

Morgan: Thank you so much for having me!

Lauren: Absolutely. It's a pleasure. You're the first person we're talking to on the show about MG … we'll call it MG from here on out … and I'm really interested to learn more, and I'm sure our audience is also really curious as well. So I really appreciate you taking the time and lending your story to us today.

Morgan: Yes, I'm excited. I hope I don't bore you guys.

Lauren: Oh no. Not possible! So let's start at the very beginning of the story … this is always how we do this. I would love for you to tell us when and how you first realized that something was going on for you in terms of your health, and how you've taken control of your health since then.

Morgan: So I've talked about this multiple times on my platform and on YouTube. But basically, before I was diagnosed I was super super into the gym and very healthy and just focused on ‘I'm about to get these abs’! And I noticed that as I was doing certain activities … like, I was trying to run and my run times were getting slower.

And I was in the gym and I just didn't have the stamina that I used to.

I would stare at myself in the mirror … f you've been to any gym, they have the whole long wall of mirrors …

Lauren: I cannot stand the mirrors! Like, that's not what I want to look at right now.

Morgan: Yeah, I was thinking, man, I look super fuzzy in the mirror. But I’m thinking, maybe I'm just tired today. Overdid it, let’s just go home. Probably about April or May I started doing weekly 5ks, because I wanted to train for a half-marathon so I'm just slowly working my way up. And one day after a 5k, I woke up … and I tell people I should keep pictures of this … I woke up basically looking like I had had a stroke. The entire left side of my face wasn't moving. It was very scary. That's basically what started me trying to figure out … what the heck is happening with me. I was having really bad headaches, and again, the blurriness that I was experiencing, not been able to focus. It was coming and going, but it wasn't consistent. And I was getting headaches. So I was, like, okay, well, I’ve always had sinus allergy issues. Maybe this is just really a lot of pressure, and it's causing things to get out of whack. Basically I went to the ENT and to the allergist, I went to all these people. And finally, I was, like, okay, well, I need to go to the eye doctor. I've never worn glasses before, but maybe I'm just getting old. And this is just what needing glasses means!

Lauren: This is what your 30s looks like!

Morgan: At the time, I was 20, 25. So I went to the eye doctor. And while we're doing this test, I was able to close my eyelid and my vision was perfect. Like I said, I've never needed glasses. So each individual eye, vision was crystal clear. But when they were open, it was double vision and droopy lid. The doctor came back in, she did some of the tests like follow my finger and go here and go there. And that's when she was, like, “Your eye isn't moving.” She was very, very concerned. She was, like, “You need to go get an MRI tomorrow. I'm gonna refer you.” She was very, very like … this is something serious. Let's not play. Go get your scans, go to neurology. And that's what kind of sent me into panic. I remember leaving the eye doctor in tears.

Lauren: Well, it's one thing because she's trying to help you be on top of your health. But it sounds like her attitude was a little alarmist. So then of course that would freak you out. I would have been nervous, too.

Morgan: Yes. And then the day of my scan, I remember driving to the test center, and it was far from my house, and it was raining. I'm having double vision issues, the wipers are going, I'm in traffic.

And I ended up having to make a makeshift eye patch out of a paper towel that I wrapped around some sunglasses, just to kind of keep my eye closed so that I could focus on the drive.

It was so scary and so, so frustrating. But I made it! And I did the scans. And of course they say, your MRI is fine. And I’m, like, okay, well what the heck is going on. Which then led me to the neurologist. And then, of course, that led to a whole new set of tests before they finally diagnosed me with MG. But those two to three months were probably the most stressful times of my life. Because up until that point, I had just had sinuses, allergy issues. I'd been “healthy”. Nothing had ever happened to me like this. It was definitely a shock to the system.

Lauren: Yeah, absolutely. It seems like right now I'm talking to you … no one can see this, but you've got function on both sides of your face, you've got equal function. So were you able to regain that function through treatments for MG? What does that look like?

Morgan: So, that first year, six months to a year with MG, were very, very aggressive and very, very intense. After I was diagnosed, I ended up finding a specialist who specialized in MG.

Lauren: Wow. Because this is a rare disease, too. To find a specialist is pretty awesome.

Morgan: The MGFA [Mysathenia Gravis Foundation of America] are one of the resources. They have a list of doctors, and there's not a lot, but there were few in the area. One was at Johns Hopkins, one is at the University of Maryland. But those people had waitlists, and were super expensive. And the neurologist that diagnosed me … and I tell people on my platform all the time … having a neurologist or someone who's familiar with your illness is okay, but having a specialist takes your treatment to another level because this is what they do day in and day out. When you're just a regular doctor, they have to cover it to graduate, but they may not be super duper familiar and in the weeds like a specialist is. So at that time, I remember talking to my mom … because again, it was just very scary for all of us. And she's the one who actually found my specialist. We called, I think, three different doctors and we were just trying to figure out who was going to get me in the fastest. It just so happened to be this specialist, and from day one it was just like we clicked. I was, like, “I love your vibe.” 

Lauren: Wow, that’s awesome. 

Morgan: Yeah. The original neurologist, he just gave me Mestinon.

I don't like to bash doctors because I know they're all doing their best, but he just said, “There's no cure. Here's the medication.” 

I’ll just be on it for the rest of my life and he just sent me on my way.

Lauren: And didn't give you options or anything. Just told you the one thing.

Morgan: When I met my specialist, he was, like, “First of all, we're gonna match you out on that medication. And then he added prednisone. Prednisone kind of helps with flares and things of that nature at kind of getting things under control.

Lauren: And that was like a short course? 

Morgan: No, long, long. I was on prednisone for three years. 

Lauren: That is a long time!

Morgan: 60 milligrams a day and then after about two years we started the weaning process. 

Lauren: But that’s frustrating, too, because does a lot of stuff to your body that makes you not recognize yourself.

Morgan: (sighs) Yes!

Lauren: In the midst of already not recognizing yourself in many ways.

Morgan: Definitely. I think I'm seeing my specialist about twice a month now. So the first meeting, we get introduced and we work out the prednisone. Then at the next meeting, I’m, like, “You know, it's not getting better.” It's now summer. And you know, summer is a really, really crucial time for people with MG.

Lauren: Hmm, interesting. So the the hot weather impacts the symptoms?

Morgan: Yes, it’s a trigger. So my symptoms are still escalating. He then added in IV treatment. So I did a week-long IV treatment, followed by weekly treatment. And I did that through summer. Each time I was getting a treatment, I ended up in the hospital, because my body just really wasn't recognizing or gelling with the IVIGs. So now I'm taking all these different medications. I believe at one point, I was taking about 21 pills a day.

Lauren: Yeah, this is often the story, isn't it, when you have a chronic illness.

Morgan: It is. And one of the symptoms of MG is difficulty swallowing. So you want me to swallow all these pills throughout the day? I have to take some with my meals, and some on an empty stomach, and these pills all mess with you in different ways. So about October, things still weren't getting better, and he just sat me down and he said there was a new research study that came out that said people who have a thymectomy surgery within the first six months to a year of being diagnosed show better chances of going into remission. 

Lauren: What kind of surgery is that? Can you tell us what that means?

Morgan: So you have your thymus gland; your thymus sits behind your chest bone, and in your thymus is the gland that produces your antibodies. 

Lauren: Hmm, interesting. Wow.

Morgan: Yes.

And so with MG, basically what's happening in the body is that your antibodies are attacking your nerve cells.

For some reason, they think it's an agent or a foreign body, and it attacks it.

Lauren: So it's not a neurological condition, it’s an autoimmune condition. 

Morgan: It’s neuro-auto, because it's attacking those neural receptors. So it's both. Traditionally your thymus gland is supposed to shrink after it does its job from childhood through adolescence. It's done its job because you pretty much are immune to whatever you're immune to in your surroundings. But if your thymus gland is either overactive or enlarged, it can trigger some type of autoimmune response. So I was faced with having a thymectomy. Thankfully, technology today … there are so many different ways of having a thymectomy. The easiest way is the robotic thymectomy where they do three little small incisions that kind of pull out the thymus in little chunks.

Lauren: Like the da Vinci thing, right? 

Morgan: Yeah. But sometimes they get in there and they can't fully see and things go bad and they have to do a full sternectomy, which is basically cutting you from right under your trachea through mid-chest.

Lauren: It looks like you didn't have to have that, because I can see some of your chest. You didn't have to get that, so that's good news!

Morgan: Yes. They tell you, okay, well if it gets a little scary, we're gonna have to go this other route. I went ahead and had my surgery December 23, two days before Christmas. I was home by Christmas. It was pretty simple because I was doing well, so they let me go. Christmas Eve, I went home. And yeah, that started my healing process. So I honestly feel like the thymectomy was the thing that started me healing. I don't call myself ‘being in remission’. But I am able to function without taking medication every single day now.

Lauren: Wow! So you were able to go from taking 21 pills a day, you had this surgery, and now you're just focused on holistic health and keeping yourself in your best wellness possible with diet/exercise/lifestyle?

Morgan: Definitely.

Lauren: That is amazing! Now, I want to know also, because this idea of the thymectomy … did they have to break your chest bone to get through to where the thymus is? How do they do that with the robot?

Morgan: If I did the traditional, yeah. And that healing process, they tell you it takes two months. This, it’s like three little incisions, coming from the rib area, and one under the breast. They were able to get it pretty easily.

And it's funny, because I still have phantom pains where my scars are. 

I talked to my doctor about it; he said, yeah, because they had to break through your connective tissue. So when your body's sending nerves, it's nothing there but you kind of feel that little itch, or that little shake or that jolt of electricity there. And I’m, like, oh, the human body is so crazy!

Lauren: It’s fascinating. So talk to us a little bit more about MG. I want people to understand what MG is. I know that you mentioned that it's a neuro-autoimmune condition. But for you, the way it manifested was that you were losing mobility in half your face, having trouble swallowing. What are some of the other symptoms that showed up?

Morgan: Yeah, so MG is neuromuscular, autoimmune. It affects any of your voluntary muscles. So that’s: speaking, swallowing, breathing, arm/leg motion, the ability to hold up your neck, smiling, eyelids — a lot of people with MG will have droopy eyelids, they'll have double vision. The biggest thing is difficulty breathing. Because typically when you have difficulty breathing, you're borderline myasthenia crisis. And that leaves you hospitalized. So if you just have the double vision, or the droopy lids, they classify that as ocular MG. But if it goes beyond like your eyes, you have generalized MG. And then within MG there are rare subsets. On a general MG test, I come up negative. But you have to take this specific test. So within the 100,000, I'm within that 10% that has this gene that you test for MG. So it definitely ranges from person to person. They call MG the snowflake disease because they say no two snowflakes are exactly the same. And that's pretty much the thing.

Lauren: I hope you’re also politically liberal, so you're like extra snowflaky! [laughs]

Morgan: (laughs) My family always makes fun of me, like, “Of course, she would never have nothing easy!”

Lauren: You’re a little extra! So what do we know about the cause of this diagnosis, as well? Is it genetic? Or is it environmental? Is it a combination of both?

Morgan: The research says that it is not genetic. However, there is research that says that if you have a family member that has a different autoimmune disease, it makes you susceptible to having MG, as far as passing it on. So if a mom has MG when her child is born, there's a chance that the baby will have neonatal MG, but it leaves within two to three weeks. 

Lauren: Wow. 

Morgan: Yes, which is weird. But they definitely say it's not a related. I don't have anyone in my family with MG. However, my mom and my grandma both have sarcoidosis. I have a cousin that has lupus, but I'm the only person that has MG. So it's interesting.

Sometimes I wish I was a doctor or researcher, so I could really get into the weeds of it. You don't know the impact until it’s affecting you.

Lauren: In many ways, you're sort of an honorary doctor because you've had to do so much of your own research. And obviously, you've done that; you’ve really looked into what the condition’s all about.

Morgan: Definitely. I think it's super important to be aware. Because it was funny, even before my doctor approached me with the surgery, I had been doing my own research. I had been prepared to come into that appointment with, like “Yo, did you see this?”

Lauren: Time for a thymectomy! Exactly. Wow.

Morgan: And he was on the same page as me. I love that me and my doctor are very much on the same team, because I would hate to have to fight for what I feel like is the best treatment for myself. And so after the themectomy, I let him know early, “I don't want to be on all these medications. So what's the quickest we can wean off? What does that look like?” And he was very accommodating with me, and we worked super hard to get me to where I am today. 

Lauren: So how many years is it now since your original diagnosis?

Morgan: It was four years in May.

Lauren: And it's just so wonderful that you saw your health decline, but you've seen it turned back around in your favor. I’m seeing you as a vibrant person, with your whole face working right now. Do we know about any long-term implications with the thymectomy? Are there things that you have to continually monitor in your own health just to make sure that you don't go into flare again?

Morgan: My specialist, he believes that once you improve, you don't regress. I don't believe that. I just don't think that that's possible. I think that it takes a lot of preventive care. I learned about the different things that are triggers for me … heat is a trigger, stress is a trigger. menstrual cycle is a trigger. So I actually began tracking all of these different things, just to see what was really causing those flare-ups. 

Lauren: I love the way your mind works. The way that you have approached this, you're the perfect patient. I'm sure your doctor was thrilled to meet you. 

Morgan: I’m like a recovering nerd. I’m like, give me a chart, let me write it down! 

Lauren: But this is exactly what doctors want, too. They want data that they can see patterns in.

Morgan: Yeah. So I started tracking that. And I was able to say, okay, well, if I know this is coming … like, if I know my menstrual period is coming on this day, I'm going to pretty much take it easy, so that it's not going to take me into some type of flare-up. If it's hot outside, “Hey, friends, I'm probably not going to be there till after the sun goes down and the temperature drops to a certain point.” I go in once a year for a check-up with the surgeon. Just to see how things are going, but it's pretty much cut and dry. I haven't had any issues other than the fact that I have two scars; of the three incisions, I have two scars. And they do sometimes itch, and are a little painful.

Lauren: But if that’s the trade-off for if you had lost function in your throat completely … I mean, yeah, that's really the way to go.

Morgan: Wow, I definitely feel like that. But that's just me. I know people who have had the thymectomy, and they said it didn't work. Also, the research that I presented to my doctor, it said it can take up to a year-and-a-half before you can see the full benefits of the thymectomy. I don't know why it takes so long. But I can definitely see from the time I had the thymectomy to where I am now, it’s been like, yes. And it also could have just been the combination of … okay, I made sure to eliminate a lot of stressors, I made sure to pay more attention to my body and what I'm putting into it.

So I don't know if it was one particular thing, but in my mind, the thing that flipped it, was the thymectomy.

Lauren: Did you find that you needed a personal advocate throughout this journey? I mean, you were pretty young when you were diagnosed. You've mentioned that you have members of your family who live with their own autoimmune conditions. So, did you lean on anyone among your friends or family as you were going through this experience to sort of humanize the experience for you?

Morgan: I didn’t, and looking back now, I don't feel like I asked for help enough during those very, very crucial and critical times. When I was first diagnosed or when I was trying to figure out the diagnosis, I did turn to my mom. At the time, I was 25, 26 and I had just purchased a house. I was living my best life, vacationing, feeling like I'm grown now, you know? And then boom, I'm humbled and I need my mommy again. And I’m frustrated because all the specialists are booked. But I tell my people, I'm not a very aggressive person or personality; I'm very, very reserved and relaxed and kind of just go with the flow. But my mom, she is on it. I don't even know how, but she found my specialist and she got me that appointment. And she went with me to my first appointment just to make sure that he was fine. But then I was on my own. So I think in terms of advocacy, she helped initially. But since then, I feel like I definitely pulled back a lot from friends, family gatherings. I didn't want to burden other people, because I knew I was in a place of being a Debbie Downer and I don't like to transfer that type of energy. But also just trying to cope and understand everything that's happening. It’s a lot. You do kind of recluse into yourself and go into your own little protective shell. I would go to work and I would come home — and that was it. I would talk to people occasionally, I would text people, “Yeah, I'm alive.” And that's it. My favorite thing is when people ask, “Are you okay?” And a lot of us in the chronic illness community will say, “Yeah, I'm fine. I'm okay.” But that's not true! It's just we don't want to make other people uncomfortable with the realness that we're going through. And it’s, like, no, I mean, do you really want to know? Boy, it’s a lot.

Lauren: Absolutely.

Morgan: So I definitely felt like I did not take advantage of my support system.

Lauren: But you have a support system is the thing. You’ve discovered that you do have that.

Morgan: I do. During those first six months, my mom lived 30 to 45 minutes away from me, and it would be the middle of the night and I was, like, “I'm not feeling well,” and she would drive and take me to the hospital. My grandma would do the same thing. They were always checking on me when I had my surgery. I didn't even have to leave my bed. It was Christmas, so my mom bought Christmas to me in my bedroom, her and my brother. My friends and family, they were bringing me food; that’s the holiday time so everybody has food. And just checking on me. So I did have a support system. I think it was just that feeling of … I'm not my best self, and I don't want other people to see me that way.

Because those symptoms, like droopy lids … I tell people all the time, I felt like a monster. You can't recognize yourself.

So who are you to other people? And then that fear of … okay, what if I'm out and my lid starts to droop? Or what if I fall? I walked to the mailbox one time and I fell, just a short trip to the mailbox. So the fear of uncertainty and just processing it, it was definitely a lot. I feel like I could have laid heavier on my support system, or at least let them know. Maybe it was self-shame and just the stigma of being sick. I was just thinking, oh, this is this is my new life. I’m never gonna be …

Lauren: I’m also thinking, being female in the middle of this, too. When you're already dealing with body image things that are thrust upon us from a very young age, and then your body starts going haywire, and when you look in the mirror it looks different to you. Like you said, you felt like you were a monster. You probably already were dealing with internalized issues about the way you looked, let alone the things that had to do with your diagnosis.

Morgan: Yeah, it was definitely a lot, and it's taken a lot. People say, “Oh, you're so positive. You're so … this.” And I’m, like, “Y’all, it was real.” I often wish that I started sharing more with other members of the Spoonie community when I was going through my darkest period. Not because I wanted people to get on my side, but more so because I want people to see … I'm this way now because of what I did go through. Not because I just had these rose-colored glasses on and don't know how real this thing gets.

Lauren: It sounds like you're really close with your family. Do you think that your mom and your grandma stepping up for you has made you closer with them as well?

Morgan: No. I'm a mommy's girl! 

Lauren: So you were already were super close anyway.

Morgan: Oh, definitely. I was an only child for 21 years. And then my mom had my brother. So it was her and I for so long. I'm her baby girl. I felt like it was more difficult for her to accept that something was going on with me. It was very hard on her. I remember one day her breaking down in tears and crying. I understood her need to cry. But this was happening to me, like … you're crying, but imagine how I feel. Versus my grandma, she's much more compatible with my personality. She’s even-keeled and reserved, and she was able to handle it and adjust. And if it did bother her, emotionally, she removed it from me so that I wouldn't feel guilty about coming to her with certain things. I think it's interesting to watch how other people in your support system handle your diagnosis, because everybody handles it a different way. As much as it is happening to us, it affects everyone that is close to you or cares about you in some way or another.

Lauren: Absolutely. So tell us what a typical day is looking like for you now. You’ve gone through this process of getting ill, getting the diagnosis, going through various treatments, going into not remission per se but really reversing a lot of the symptoms. So how are you managing potential flares? I know you mentioned being aware of temperature, and things like that. But as you're balancing the demands of work and life, how are you working around these potential symptoms flaring up, and being aware of the fact that you do have a chronic illness diagnosis that you have to work around?

Morgan: I do work, I work full-time. I was blessed that when everything was happening, I was in a good office.

My supervisor, she was very sympathetic to everything that was happening to me. She would say, “You don't look well today. Do you want to go home?”

Lauren: So they knew. You told them about the diagnosis.

Morgan: They were there when my symptoms were originally happening. So she could see the effects. And she was very, very sympathetic. And even though I have since moved on from that office, I still have the same supervisor.

Lauren: You’ve maintained that level of understanding.

Morgan: Yes, it's definitely like a covering and a protection. I'll tell people sometimes … you don't want to tell people or explain to people your situation because you get pity and different things …

Lauren: Or be discriminated against. I think a lot of people are worried about telling employers, because they might fire me or get annoyed with me — because of something I can't control.

Morgan: I've definitely been blessed in that area that my supervisor who was with me when I was first diagnosed is still my supervisor now, and she's very, very sympathetic and flexible. Even with the COVID stuff, I didn't go into work. I just started going back into work, but I only go one day a week and I go half-days and I have my own office, so I close the door; I'm in there by myself. She's very, very flexible in just making sure that I'm taking care of me. I think that that was helpful in that I didn't have that level of stress. So I work. I do my blogging and stuff. But in general, I try to eat “clean”. Of course but after being on prednisone for so long, I have extra lbs that I’m trying to shed!

Lauren: That’s one of the things prednisone does to you. 

Morgan: I tried the AIP diet. Are you familiar? 

Lauren: Yeah, I do AIP myself. 

Morgan: I did strict AIP for a month and I really didn't notice a difference in myself. So what I did from there was … I was, like, okay well, I'm just still going to try to eat clean. I looked up supplements for energy, because I experience fatigue. Energy supplements to complement what I was feeling. So I try to just implement little things here or there.

Nothing over-the-top because I feel like when you're trying to make some type of lifestyle change, you don't want to shock yourself. 

Lauren: No, you have to do it gradually.

Morgan: Yeah, you have to do it gradually. And it has to be something sustainable. Like, okay, I'm going to do this for 21 days, and then what? To me AIP was fine, but I just didn't think I could handle that long-term. And when people say, “Oh, you have to do it for six to eight months to really see the results,” I was like, yeah, this is not for me!

Lauren: But you know yourself, and that's super important.

Morgan: I'm a recovering perfectionist. So I didn't want to set myself up to beat myself up when I wasn't able to be strictly AIP or adhere to a certain lifestyle. So overall, I try to eat healthy. My Achilles heel, my favorite thing is a Coke Slurpee from 7/11. I love it so much!

Lauren: But it’s so important to have those joyful moments, isn't it. We have to do things in moderation, if we can afford to.

Morgan: Definitely. Over the past two months, I've thought of transitioning into more pescatarian. I don't think I'm necessarily going to label myself a pescatarian, because I know, come Thanksgiving, I'm gonna go have me some turkey. But up until then, I'm going to try the meatless meals and try eating more fish and different things. Just to see how that feels and gels with my body. I try to focus on holistic wellness. One of the things that I feel like MG illuminated for me was my lack of self-love. Because I was so hard on myself, and it kind of makes you question: if you loved yourself, why are you so hard on yourself for something that's beyond your control? This illness, you didn't cause it. And so that recently prompted me to do so many things, like journaling and self-reflection and just thinking about, okay, well, what can you do to be your best self? And even if it doesn't change, are you really going to hate yourself for the rest of your life? You know, just trying to figure out …

Lauren: Yeah, and who benefits from that? Who benefits from you hating yourself?

Morgan: Yeah. So gaining mental clarity, about focus and self-love. I practice daily affirmations. I try to move my body about 20 to 30 minutes a day, whatever that looks like. It's not what it was before MG, it definitely isn't. I'm not the girl killing it at the lift bar. That was probably the biggest thing, because I was such a type A personality, and it was like … I set a goal, I meet the goal.

So having to redefine what fitness meant to me, having to redefine what wellness meant. And that it's not necessarily a number on the scale.

It's about … what am I putting into my body — from everything from what I'm listening to, to what I'm watching, to what I'm saying about myself, to how I'm going to move my body today. Some days it’s yoga. Some days I'm able to run. I just got a Peloton. It is the best investment!

Lauren: Amazing! 

Morgan: Yes, I love my Peloton. Jumping rope, simple things. And just showing appreciation for my body and what it's able to give me that day. Because I recall the day when I wanted to do something simple like walking, and I couldn't. So I'm grateful that I was able to kind of pick up these lessons. But I feel like I could have learned them another way!

Lauren: Right? But sometimes it does take our body betraying us in a sense to wake up to that. And it sounds like you really have, and that it's given you something sustainable to work towards.

Morgan: Definitely. One of the books that I've read … I don't know the author, but it's called The Body Keeps the Score. And it talks about how our bodies are a reflection of the different traumas that we have incurred throughout our life, and when you have suppressed emotions or stressors, our bodies display that through chronic illness. And I’m, like … man! You mean, that time e …?! So I make it a point to make sure … we're not carryin’ no stress, we're not carrying any horrible vibes about ourselves! Even if the MG is still here, we're going to be as healthy as possible. I'm gonna do my part to heal my body, and I just want my body to kind of meet me halfway.

Lauren: Yeah, absolutely. You're treating it like a partner. I'm wondering, with a diagnosis like MG and especially at this point where you're not having any physical symptoms that are manifesting that people can see … have you been in situations where you've been confronted and forced to validate your diagnosis to people who didn't understand it, because they couldn't see it?

Morgan: I don't think that I have had to necessarily justify it. Again, I was really, really quiet about it. Recently, with COVID, they allow people at-risk or the elderly to go in early. And I struggled with that for a long time, because I was, like, I'm gonna go and I'm gonna walk, because there's no plaque or anything that you can say, “Hey, I have MG.” It’s going to this line at a certain time and saying, "Hey, I have an illness. Let me in.” I really did struggle with that, because I didn't know if they would say, :”No you don’t, you look fine.” But I did it one day, and it was fine. They were just, like, “Go ahead.” I don't think that I've had to justify that I have illness. But one of the things that I have encountered were when people asked me how I am. And I'll say, “I'm okay.” And they say, “Oh, well, you look fine. You look normal. Are you this, this and this … ?” It used to irritate me!

Lauren: It’s the classic thing for all of us Spoonies, isn't it. We’re like, “It’s not that simple!”

Morgan: But I try to just remember, it's not their fault. They're, for lack of better words, ignorant to what it really is. So I try not to take it personally. I can recall that summer where I was having the worst symptoms ever. Also partly because I wasn't slowing down and paying attention to my body. I was, like, MG’s not gonna take anything from out of my step. I was traveling out here, partying and acting the fool. And my best friend, she got married. And we had a conversation after the wedding. She was like, “I couldn’t tell you were sick at all; you looked fine in all the pictures.” And I’m, like, “Yo, you don't even know what I was like. I literally had an IV treatment the day before. And I went to bed early. I did so much to prepare so that I wouldn't ruin your day.” I guess I should have taken it as a compliment. Like, yo, cool, I did my job so well that you couldn't even tell.

But it was just like … "Really? So what did you want me to be like? Woe is me in all the pictures?"

Lauren: Would you have put up with that? In terms of your experience in the healthcare system, it sounds like you had a pretty great experience. It took a few months, but you got your diagnosis, and then you found your specialist right away. Have you had any experiences, particularly related to MG, where the way that you look … we're talking about ‘oh, you look fine’ … the way that you look, do you think that has had an impact on your level of treatment? Particularly because you're a woman of color walking into a hospital, walking into an emergency room? Do you see your gender and race, in particular, having played a role in clinicians’ or practitioners’ treatment of you?

Morgan: In terms of my MG, no. My mom seems to believe that the first neurologist that actually diagnosed me, that he was a smidge racist. I just thought that he just didn't have bedside manner. But looking back, I can see how she might have interpreted it. When he told me I had MG, he didn't even make eye contact. He kind of just looked at the files and was, like, “Yeah, you have MG, here’s your pills.”

Lauren: Matter of fact, yeah.

Morgan: Very. Very matter of fact. And callous. When you're telling someone who's 26 years old and has the rest of their life ahead of them, that they now have something they're gonna have to live with for the rest of their life, you would expect it to be delivered with just a little bit more tact than he did. So I don't know if that was racially driven, or if it was just who he is.

Lauren: Or he's a misogynist, too. Like it could have been a little bit of both.

Morgan: Yeah. But beyond that, thankfully, because I do have my specialists, I don't feel like I've ever been treated a particular way. 

Lauren: That is so lucky.

Morgan: Yes, and I know that it’s rare. However, two months ago … again, I told you guys, I'm transitioning to pescatarianism. I actually got a fish bone stuck in my throat. And then, of course, it's COVID during this, so first I went to urgent care. They didn't see anything. And they told me that I should just take some cough drops to kind of soothe it, and it would be fine. If it didn't work, to go to the emergency room. So now I went to my local emergency room, and they tried to do a procedure, but they still couldn't see anything. And they ended up transferring me to a hospital. And again, I'm in hospital, I was admitted overnight. And I'm telling these people it hurts to swallow, it hurts to talk, I'm in extreme pain.

Not once did I get pain medication. And they send me home from the hospital still saying that they didn't see anything.

Three days later, I was on my couch, and I actually coughed up the bone.

Lauren: Wow, you are so lucky. I mean, they could have sent you home to die!

Morgan: Yeah. I was actually coughing up blood. And they said, “Oh, well, maybe it just scarred it, and it's gone now.” Because they couldn't see anything on the X-rays. And I was, like, “Even if you can't see anything, I'm telling you I'm in pain and you didn't offer me any pain medication.” I guess because of where I am … I'm in a very wealthy area where people of color are pretty wealthy or considered to be the standard quo … I never considered that it was because I was a person of color. Or a woman. I just thought that this place gives bad service.

Lauren: Yeah, well, it's all of those things, probably.

Morgan: Yeah. But when that happened, in light of all the other things that are happening, a light bulb went off. And I was, like, so did you not give me pain medication because I'm a woman? Because, you know, women in the healthcare system are pretty significantly equivalent to the Black man and the police. We are very, very under-represented and under-treated.

Lauren: And not believed. 

Morgan: Yes, as far as our pain threshold … So I was, like, “Well, why don't you at least give me a little bit of Tylenol or something. I'm in pain.” Not that I could swallow the Tylenol. But they could have given me a little something via IV. I was in there for 18 hours. I couldn’t eat — or they told me not to eat or drink until the ENT saw me. So I wasn't able to eat or drink. I was in pain, and they gave me nothing. And so stuff like that, it makes me thankful that I didn't have to deal with something like that when I was in a myasthenia crisis, because those are super serious. When I had my thymectomy, my doctor, my surgeon, told me … because I was taking pills at that time … she said, "Just bring your pills with you, keep your pills in your bag and just take them on your regular schedule.” Well, the nurses came in and they were, like, “You can't take that, you can't do that!” And they took all my medication from me and said they were going to administer my medication to me at their prescribed time. But they actually were late.

And so at that point, I'm shaking, and I'm weak. And then my mom’s, like, “Where's the nurse?!”

The surgeon actually had to like tell them, “No, I told her she could keep her medication, give it back to her. Let her do what she needs to do.”

Lauren: That’s all policing of your body. I mean, that's people not trusting that you can take care of yourself, too.

Morgan: Yeah, I do this every day. You’ve got something going on in the next room, and I'm sitting here … I need my dosage on clockwork, or I can feel it. I literally feel it.

Lauren: Would you say that, given your experiences, but also being aware of the experiences of other women and other people of color in the medical system … would you say that racial and gender inequity in the healthcare system is a public health crisis? 

Morgan: Definitely. 

Lauren: No one's ever said no! 

Morgan: Definitely. I joke all the time to my friends; I’m, like, “I need to move somewhere where healthcare is free.” I don't understand why I have to pay an arm and a leg for subpar treatment, and on top of that, I've still got to pay out-of-pocket. It's a headache. And it's crazy. I feel like healthcare should be a savior. This is something that we all need. I think I knew, but you aren't really aware until, again, it affects you, when you have a chronic illness and you're in the weeds of the healthcare system. The actual test for my MG … because I was retested a year or so ago, just to see if I was in remission … I got a bill from the bloodwork for $1800.

Lauren: What?! And you have health insurance. 

Morgan: That was with insurance, for one vial of blood. I was, just like, “Are y'all serious? I had to pay $1,800 for that, to tell me I'm still sick?” I was so just defeated at that point. And the thing that kicked me over the top is, I do flex spend with my job. So you have till the end of the year to spend your money. And they didn't send it until beyond that window. So I had used the rest of that money to buy glasses and different things I needed, to spend it before it expired. And now you send me an $1,800 bill? What is happening here?

Lauren: Yeah, that's really awful. And that’s one of the huge issues with the health care system, isn't it, the administrative issues that come into play, when we're looking at pay to play treatment? I mean, let's talk about the healthcare system a little bit more here. Let’s talk about, ways in which it's working. Are there other ways it's not working that you've observed, and ways in which it is working as well. Are there pros and cons that you can dig into, given your experience?

Morgan: I think that with some of the technological advances, it is working. I remember when I was first diagnosed and going into the ER, and having to explain to them. I would take a booklet with me talking about MG … these are medications that I should not have, these are medications that I can have. 

Lauren: So there was no excuse for people not to understand.

Morgan: I would take it with me. And now I find that when I go to different places, and I say, “Oh, I have MG,” they're aware. I feel like every time that happens, I'm really excited.

And I feel like, thank you … you just made this much more bearable, because I don't have to spoon-feed you this to treat me.

So I think that that's working well. I think that some of the smaller practices merging with the bigger university systems, and having a track record of all of your history, is working. Because that's good, y'all are talking to each other. I don't want to have to relay a message from you to them. They should be able to access each other and pull out my record. I love that. But in a lot of ways, it's still very, very broken. The cost of prescription medications, and the lack of medications, the lack of availability. IVIG, I don't take it anymore. But at one point, there was a shortage of it, because it's used to treat so many different autoimmune conditions. And people weren't getting their treatments because there was a shortage. And I know that's not cool.

Lauren: Also, what creates the shortage? Is it actually the movement of money? Or is it the actual product?

Morgan: I’ve had a lot of conversations with my specialists about Big Pharma. When I went to him for my first consultation, there was actually a shot that he gave me. And within two minutes, my vision cleared up, and my droopy lid was open. And so I was, like, well, why wouldn't they make this shot with an extended life? Because before I left his office, it was over. So why wouldn't they make something like this that lasted longer? And he was just telling me it's about patents and money.

Lauren: That’s getting in the way of helping people. 

Morgan: When did healthcare become about a bottom dollar, versus saving lives?

Lauren: That’s a problem. Absolutely. So talk to us about your advocacy work. Because obviously, this is you stepping up for yourself as a patient. But you're also creating content on social media and through your blog. Not only for other chronic illness patients, but also for people who are interested in holistic health. Talk to us about what you do as an advocate.

Morgan: I’ve always loved writing. Again, that first year with MG was probably my hardest. And one year after I was diagnosed, I wrote an article … like a love letter but it wasn't lovely … to my MG. Like a synopsis of my relationship. Kind of just venting. It really helped me.

And I realized that -- yo, this is going to be how I'm going to go through this; I'm going to work through these emotions by writing it out.

And so many people reached out to me and were, like, “Oh, I can relate so much. You put it perfectly and I can never find the words.” And I’m, like, it's a whole community of people out here that can't really find the words or look, just like me, are just trying to figure out how am I going to make it through this. I definitely don't want to say I took it upon myself to speak for them. But I know what it feels like to be in that place of being very vulnerable, being very confused and afraid and frustrated, and not being able to articulate what you're feeling. Also on top of that … they tell you don't do it, but I did it. I Googled “MG” and there was nothing pleasant. There were a lot of people and death stories. I wanted to talk about some of the weeds of it, not just ‘I have MG and then I die.’ I wanted to kind of just talk about … you can live with it. You can do some things. No, it's not gonna look the same. But you can still live what I like to say, live your illness life. 

Lauren: I love that.

Morgan: I think your old self is kind of dead, but you can still have a rebirth and reframe what it is that your life is going to look like with a chronic illness. When I started looking at just general people with chronic illnesses, blogs and different things … you have mainstream ones, like Lupus Chick, and I forget the other big one … but I didn't see a lot of women of color. And I wanted a place for … okay, well, there's no one here, I guess I'm gonna have to do it. Because I would never want, now that I'm 30-plus, the next group of young women in their 20s being diagnosed with MG to Google and not have anything or any representation.

Lauren: And also have a representation of only negative stuff and not the positive stuff.

Morgan: Yeah. So it kind of just came from that. And also I'm getting off these pills, these medications, and thinking, what I’ve got to do. I need to just do different things. I've always been kind of, I guess, teetering on the edge of trying different things, natural living — but knowing that I was putting the different medications in my body, I began a journey to just try to be healthier and be more natural, and pay more attention to what I was putting in my body and on my body. And it kind of just stuck. 

Lauren: An awakening. 

Morgan: Yeah, it was, just like … okay, well, wow, this is a mess. This is fun. Oh, no, I don't want to use that. Also when you start paying attention, you can kind of see. I used to have really, really bad eczema. So I changed my detergent, I started making my own butters and different things for my skin and using natural soaps. I haven't had an eczema flare-up in I don't know how long. A lot of it probably is the synthetic fragrance oils, but it's about being in tune. I really wanted to be in tune with my body and what it needs. Everybody needs something a little different. It's not a one cut thing. But just getting to know my body, because I felt so disconnected.

Like, I don't know what you're doing down there and you don't know what I'm doing. Yeah, we’re on two different planes, I'm telling you to go left and you go right!

Lauren: It sounds like you used your diagnosis as an opportunity to reconnect. And that there was a process to get there, too.

Morgan: Yeah, it definitely wasn't conscious. It kind of just happened and possibly just out of my own nature of being, I want to try this and I want to try that and I'm gonna keep trying. And also being very, very strong-willed. I latched onto … I can't control the illness. I can't even control my body right now. But there are things I can control. I can control what I eat. I can control what I put on my body. I can control so many things. So that need to just control something kind of led me to where I am today. I would definitely say I'm not a ‘do it this way’ type of person. I put the information out there. If it's for you, you'll receive it; if it’s not, leave it where it is. But I think that for the most part, I've seen great results from transitioning. Holistic wellness isn't just about … oh, we're going to be a hippie. It’s about making that connection — mind, body and soul. It's about, how am I feeling mentally? What do I need emotionally? What does my body need? Doing those types of check-ins. Making sure I'm getting my proper hydration, making sure I'm getting enough rest — with insomnia, I'm still not sleeping through the night. That's something that I'm definitely working on every single night to get better at. It's learning myself, what I need, like trying different things. I don't like tea, but I forced myself to drink tea. If tea will make me go to sleep, I will learn to like tea. 

Lauren: Get some of that Sleepy Time!

Morgan: I love the aspect of being able to create a new reality. Four years ago, I definitely don't think I would have been here. You've seen that meme of the little stick figure lying in a pool of tears. That was me. And you couldn't tell me that four years later, I wouldn't be there. I just feel immense gratitude for not being there anymore. And I guess that gratitude causes me to want to share it with other people. Listen, you don't have to be there. First of all, if you want to be there, I honor and respect your decision to be there. But just know … if you want to get up, you can.

Lauren: Yeah, absolutely. I think that's so beautifully said. So you're really deep into this holistic health stuff for yourself; you've been reflecting a lot on what you need for your body, mind and soul. I'm wondering if you have some tips that you could share? I'd love to get your Top Three Tips for other Spoonies out there. Maybe others who are living with MG, or others who are living with another kind of chronic illness. What would you offer as your best three pieces of advice?

Morgan: Let’s see. That's a good question. Number one, I would probably say, to not allow the shame to take over. I know it's scary.

I think it's important to have at least one or two people that you can just be vulnerable with, and not be afraid to be vulnerable with.

Share with them how you're feeling about your illness, let them check in on you. Allow them to help you on your way. Because chronic illness life is very, very lonely at times. Even though the people around you may not have a chronic illness, they can still be that shoulder that you never knew you needed to cry on. Or the helping hand when you really want to clean your house, but you just have zero spoons left, and they can come over and clean your house for you. We have so many missed opportunities because we're afraid to open up and be vulnerable and say, “The illness got the best of me today, I don't have it.” Number two would be to, I think, develop a practice of mental wellness. Whatever that looks like for you. If that's five minutes of meditation, if that's journaling, if that's taking daily walks, something like standing in the grass barefoot for five minutes. Just things that will allow you to quietly reflect and just sit in silence and quiet those thoughts. Because I know that when you're dealing with a chronic illness, your mind is thinking a thousand things … what if this, and that, and all the things that you have to do, all the things you want to do, that could go wrong. But just those few moments of quiet and reflection and checking in with yourself. How am I mentally today? What is it that I mentally need to flourish today? And also honoring how you feel. I do share, but there are days where I'm just not feeling it. And I honor those feelings. I don't dwell on them, but I honor them and there's a difference — which I had to learn. Yes, you can be upset, but you don't have to be upset for a full year.

Lauren: Give yourself the moment, and then move on. 

Morgan: Yeah, and then just pick yourself up. Because you got this. You got this. And lastly, I think that I would say … have what I call your MVPs, most valuable practitioners. Your doctors are your support team, they're people who are going to take you from where you are to where you want to be. And you have to be on one page. So I have a specialist, I have an OB/GYN, I have a primary care. We all talk, because we all need to know what Morgan’s body is doing, and why we're doing this. And it needs to be cohesive. And at any point in time it feel like you're not getting the best quality, or you need another opinion, do it. Don't be afraid to speak up for yourself. Don't be afraid to ask questions. Now that I'm kind of better, the majority of my appointments are just us talking and questions in general. But when I was going through the thick of it, I would come in every single appointment with a notebook full of questions, asking him things that I wanted to know and things that I should try. What are his thoughts on this, when am I going to start on that. And at first, it was scary, because I didn't want him to say, oh, she's ignorant, or she's this and so she's getting on my nerves, and she's taking time away from something else. But this is happening to me, and I need to understand so that I feel comfortable. So never hesitate to ask a question. Never hesitate to ask out, and never hesitate to honor yourself. Those are my three takeaways.

Lauren: I think those are awesome. Those are really, really rich tips. My last Top Three list is … the things that give you unbridled joy. Where do you turn to when you need to light yourself up, when you're maybe having one of those down moments and you need to get yourself back out of it. These can be indulgences; they can be guilty pleasures even, or comfort activities if you're looking at a flare. But places and things that you turn to, maybe people you turn to as well, that fill you up when you need to refill your cup.

Morgan: Right. So I told you before, I'm a lover of Coke Slurpees!

Lauren: I love that! (laughs)

Morgan: I think I put in my bio at one time. When Twitter first came out, I put that I was a Coke Slurpee enthusiast. So yes, if I need a pick-me-up, if I've been having a really, really rough day. I will go get a Slurpee and that cool sensation just overcomes me and makes me feel so so good. And then as far as people, I have like three people that if I just need to talk something out, I'll call them and talk to them. I think it's also important to know who your people are. I know if I want somebody who is just going to kind of affirm what I'm saying, I know who to call for that. If I want somebody who's going to push me to go a little harder, or to kind of give me some opposition, I know who to call for that. So I call based on how I'm feeling in the situation that I'm facing. And then for me personally, I find joy in being creative. I don’t really talk about this on my blog, but I call myself a serial creative. I do a lot. I paint, I take pictures, I draw, I journal, I make candles, I make bracelets. Whatever I'm feeling. Like how am I feeling today? I just go from here.

One of the things that I've talked about is having a Joy List when practicing gratitude. So I'll go through my Joy List of like 20 to 30 things.

Lauren: It's not three things, it's 20 or 30 things.

Morgan: Sometimes you've got to put them in rotation and just find different things. So I'll look at the list, and be, like, I haven't done this in a while, I’ll do that … and it's like, yes! This is what I needed to do to get away. Especially when I'm in the house. If I'm able to get out, I love adrenaline-seeking things. I have a motorcycle; I’ll ride my motorcycle. I love roller coasters, I love bungee jumping, and impulsive things.

Lauren: Things that make your heart race.

Morgan: I love that. I film that. Those type of things make you feel alive.

Lauren: Awesome. That's a great list! So what is your ask for listeners today? What can they do to support you and the MG and chronic illness community in your continuing work?

Morgan: So I do blog, you guys so please check out my blog. It's IsWasWillBe.com. And you can also follow me on Instagram and on Facebook and on YouTube. Is Was Will Be Blog for all of those things. But just support … if you feel compelled. I never want to put pressure on people. But if you know someone who could benefit from some of the things that I'm doing, please share it. And also, I'm always looking for people … similar to what Lauren is doing here … I have a segment on my blog called ‘Pass the Mic’ where I like to highlight other Spoonies, for them to share their stories. Because it’s, like … hey, I have something similar, and I can relate to what you're doing. Again, I'm big on community, and I'm big on people not feeling alone in their journey. So I like to spotlight other people and give them a chance to share, because people get tired of hearing me talkin’ about myself!

Lauren: I don't know, I'm not getting tired of it! So what's next for you? What’s next in your advocacy journey and in your wellness journey?

Morgan: So advocacy … this year, I had actually planned on doing the MG Walk. I did it last year. And last year, it was a horrible year because it rained on the actual MG Walk day. We didn't even get to finish the course. And I wanted to kind of do that again. On my website, I sell T-shirts; there’s a couple of different variations, but I donate those proceeds to the MG Walk at the end of every year. And it's not just specifically for MG; they’re chronic illness shirts, so any chronic illness can support them and wear them. And I would love to … I think, when they kind of develop some type of community … for people with MG to feel empowered. Especially people who have dealt with those dark periods, like depression and stuff … some type of community for them to learn how to affirm and believe in themselves again and dig themselves out of that hole.

I did it and I can talk about it. But I feel like there's something so powerful when a group of women can get together and uplift and empower each other.

Oh my gosh, I get so excited just even thinking about it! For myself, personally, I'm going to just continue to eat healthfully. I'm a month-and-a-half in. After that fish bone accident … chicken never did that to me! (laughs). I had to revisit pescatarianism for the month of August and it went very well. So now I am a month-and-a-half in, and I'm just trying different things to make sure that I'm giving my body the best that it can receive in order to be its best self. Today I had an amazing day. I actually went for a mile run. And then I did a little workout, a little circuit, and then I got on my Peloton, and I was like, I haven't felt this much energy in years! I would love if by the end of this year, I'm able to run a 5k to make it full circle to where I was when I first got diagnosed. But I'm not going to put pressure on myself to necessarily meet that deadline. Because I don't want to be disappointed. But if my body allows it, that's what I’ll shoot for. So maybe not even this year, maybe by next spring. We'll give myself a little bit more room. 

Lauren: I love that. I think that's so wonderful. And participating in the MG walk. I mean, we know COVID is going on and things are a little different right now. Hopefully by next year, things will have cleared up a bit more and you'll be able to participate more with others. Morgan, you have such a lovely, vibrant energy. So thank you so much for sharing your story with us today. And for being on the show. It's just been an honor and a total pleasure to chat with you.

Morgan: Thank you so much for having me.

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