Charting a Courageous Path Over Lupus and Polymyositis

When Lisa Norris, a part-time paramedic and former clinical trials researcher, recounts her 20-year struggle with lupus and polymyositis, it's not just a story of illness but of extraordinary perseverance. Our latest episode invites you into Lisa's world, where she navigates the complexities of her autoimmune diseases with the same precision and focus she once brought to emergency scenes and research labs. Her candid discussion of the sudden emergence of her symptoms, the winding path to a correct diagnosis, and her evolving treatment plan, including the strategic use of steroids, is both educational and deeply moving.

Living with an autoimmune disease like lupus can feel like sailing in unpredictable weather, but Lisa's experience teaches us the art of charting a course through the choppiest of waters. She shares valuable insights into managing the condition's daily challenges, from deciphering lab results to planning around environmental triggers that aggravate symptoms. Together, we explore the importance of a strong support network and the determination to live fully. The episode serves as a testament to the power of self-advocacy, the benefit of informed healthcare partnerships, and the unspoken bond shared by those who face similar battles.

This heartfelt exchange culminates in an unexpected twist - guidance from a veterinarian with an autoimmune disease that enriched Lisa’s approach to managing her health. The discussion transcends professional boundaries and underscores the profound comfort found in shared experiences. Whether it's through hobbies like jewelry making that double as therapeutic outlets or the inspiring resilience of public figures with autoimmune conditions, the stories shared in this episode are a beacon of hope and camaraderie. If you're on a quest for understanding, community, or just a sign that you're not alone on this journey, Lisa extends a warm invitation to connect and find solace in the shared paths we tread.

Instagram: @autoimmunewarriorinfo

Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. 

Chapters

• 0:00 Navigating Life With Autoimmune Diseases
• 10:50 Navigating Life With Lupus
• 24:08 Living With Lupus
• 33:26 Sharing Medical Experiences as Autoimmune Patients

Transcript

Lisa: 0:08

Hi, my Spoonie Sisters, it's your host, Gracefully Jen, and I have the pleasure of sitting down with Lisa Norris. Hi and welcome to the show. How are you today?

Lisa: 0:20

Great, I am so happy to be here. I thank you for having me on your show.

Lisa: 0:27

I'm absolutely excited to sit down and talk with you and I'm excited to talk with you.

Lisa: 0:31

There's so much to share.

Lisa: 0:34

So I'm trying to figure out where to even begin. I guess let's start at the beginning, okay? Do you mind telling us a little bit about yourself?

Lisa: 0:42

Well, I am celebrating my 20th year with an autoimmune this July. I am 60 years old, I'm a paramedic of 37 years winding down, working very part-time now just special events and I'm a retired clinical trials researcher, which I loved, and I'm on the health balance ball and navigating for a long time now and I want to share every bit of information I have to help others navigating that same autoimmune life Lupus. Hopefully it's helpful for other autoimmunes. Whatever I can do, wonderful.

Lisa: 1:31

Well, thank you. So let's start at the beginning. When did you first start noticing symptoms?

Lisa: 1:40

Well, that's the funny thing, I didn't notice symptoms, I mean maybe some fatigue, nothing out of the ordinary. I was a very busy 41-year-old working a lot. Like I said, I worked full time for a pharma company doing clinical trials, research, and I was working part time as a paramedic. And then, you know, I was doing great. And then one day, at one evening shift, we were a bunch of us paramedics, we worked together to open up in Chicago Chicago what's called Millennium Park. We'd waited years for this to come and it's a wonderful, beautiful venue where there's concerts and music and plays and all kinds of wonderful things. So I worked that and it was such a beautiful July night. It was July 19, july 2. Beautiful summer night. We even walked 19, july 2. Beautiful summer night. We even walked home, which was like two miles. It was nothing out of the ordinary.

Lisa: 2:41

And I woke up the next day in total body pain and could not use my legs. I mean, I thought, I really thought, okay, my life is over. I'm not sure what's going on here. I was so inflamed everywhere. So my father thankfully lived a couple buildings down, which was always fun to have him as a neighbor. I loved it. And he came over, he lifted me up, we got in a cab and went right to Northwestern Memorial Hospital emergency room, which is just up the street, and of course they came back and said all your inflammation markers are high, you have an autoimmune of some kind, we don't know which one, but you got one right, isn't that the story? And that was my cue to start doing my research too. I immediately called one of my EMS directors who's a medical doctor in one of our big ERs here and I gave him my labs, my signs, my symptoms, everything I could, all the information. He says it sounds to me like you have polymyositis, which means many muscles inflamed, and I'm like okay. And I said he's like now go get a diagnosis.

Lisa: 4:03

So got online, talked to as many people as I could in the polymyositis community, met with a hooked up with a veterinarian and of all people, because I'm a huge animal lover, nature lover. So I knew this was like fate. And he guided me so well because he too had polymyositis. And I went to rheumatologists infectious disease. I went to rheumatologists infectious disease, my internal medicine, my OBGYN any doctor I could find I went to. Some of them said oh, you're too healthy to have an autoimmune. You look too good to have an autoimmune. There was nothing more frustrating, I couldn't even stand up, you know. There was nothing more frustrating, I couldn't even stand up, you know.

Lisa: 4:57

And finally, about 10 months later, a family, a cousin of mine, whose good friend is in an infectious disease doctor. I went to him, gave him a lot of background, told him what I've been through. He's like absolutely you have polymyositis. And what I've been through, he's like absolutely you have polymyositis. I follow my veterinarian, go back to him, said I got a confirmed diagnosis. He said you can do this two ways regular regimen or go see these doctors that can treat you on regular regimen, or holistically in Michigan at Center for Holistic Medicine, which I did, and they did a lot of blood work and at that time they saw the polymyositis but they also saw probably a minor in lupus, let's say, and I never thought anything of it.

Lisa: 5:44

But a couple of years later, nose sores, rash on the face, photosensitivity, I had six out of the 11 markers. So now I'm a full-blown lupus patient and also certified by my primary care, who I loved. She just retired but that's okay because there's other doctors that I got on my team and really the polymyositis is kind of down and it's all lupus and maybe it was lupus all long. You know they said sometimes it can be a ghost. So that's what I've been treating, that's what I've been living with. You know I have, like I said, probably seven out of the 11 markers and as I've grown older I hate to use that term, old, but older, wiser you know they've gotten worse. Some have gotten worse for sure, like the photosensitivity has been really bad this year with sunlight. So you know I can tell that one of the things you know that I have to do is stay on that health balance ball as I get older is to really watch and keep in touch with my doctors and stay on my treatment plan.

Lisa: 6:59

Okay. Well, that takes us to the next question what does your treatment care plan look like?

Lisa: 7:04

My treatment care plan looks like definitely steroids when needed. I mean little medication goes a long way. I have sensitivity in my eyes to sunlight too. Sometimes it causes a flare, so I have anti-inflammatory eye drops or steroid eye drops. But to try to lessen that, I eat an anti-inflammatory diet. I follow Dr Joel Furman diet. I follow Dr Joel Fuhrman. He's on PBS, he's online, he's everywhere. I recommend him highly. Joel F-U-R-H-M-A-N. I love his woman's vitamins. That's definitely on my treatment plan vitamin B12 and D, because we don't seem to make it anymore with an autoimmune exercise to the capacity I can each day.

Lisa: 8:01

Sometimes I'm at 45 minutes but then I'm down with a flare in bed and I start over at like six minutes. You know, work my way up eight minutes, three minutes, whatever I can do. One of the things I have found movement in that release of endorphins is a big deal for your body, mind and soul. And you can start with walking. There's many walking programs that are apps. Now I, like Leslie Sansone, walk Away the Pounds. It's a 20 minute, one mile walk, but you walk six minutes of that if you want. There's no wrong way to do it. And then you know you work your way up and I've done that hundreds of times now throughout the 20 years. But movement is huge. You feel good, you look good, you know it's just a good thing.

Lisa: 8:54

Prayer, for me, helps. Any spiritual connection you can have, whether it be meditation, journaling, sitting in front of the lake, like I do here in Chicago, lake Michigan, or in front of the ocean meditate, or just be able to look at something beautiful, flowers, taking a walk. So doing something good for my soul is part of my treatment plan. Also Epsom salt baths, escaping the cold in the wintertime here in Chicago, when I can, you know if I can and self-care. Self-care is huge with having an autoimmune. If you don't, nobody's going to take care of you for you. It's self-care. Self-care is huge with having an autoimmune Nobody's going to take care of you for you. It's self-care all the way. But whatever that means to you, take napping, rest, listen to your body, treat yourself. If you need a little treat that day, maybe it's sugar-free hot chocolate, maybe it's a new book, something like that.

Lisa: 9:54

That sounds like a wonderful treatment care plan and amazing things in your Spoonie toolkit as well. Yes, exactly, I feel like if I would have known someone like you back at the beginning of my journey even though my journey is a little different I feel like that would have been amazing.

Lisa: 10:12

Well, I'm here now and I'm so happy to be, and I think that's what I love about bringing people like you on the podcast is my hope is that we can get your voice out there to more and more people that need to hear from you as a beginning of their journey. That's my hope too. Yeah, even if they're 10 years down the road, sometimes they still need that extra input from someone else.

Lisa: 10:36

Yes, we all do yes, absolutely.

Lisa: 10:39

Definitely I am a little envious, and I think it's because your background you knew exactly who to talk to, who to call, where to go to get the ball rolling quickly. What would you recommend to people that are not in your position?

Lisa: 10:54

Sure, Do your research. You have to be your own biggest advocate. Do your research Labs? Know them, know those inflammatory marker labs? That they're going to run every time you go to the doctor's office is a value, but it also has a pattern. The pattern is for one of three auto-immunes to diagnose and one of them is lupus single strand speckled. The pattern of an A&A titer is huge to know. That is information you need and, like I said, be your biggest advocate. Do your research, know your stuff. Tell your doctor what you want and need. You tell them in a nice way like doctor, I'm needing this, I'm needing that. What information can you give me on X, y, z, or you know you let them. You have to be as loud and as involved for yourself as you can.

Lisa: 12:02

Absolutely, and if they're not willing to help you or to listen to you, it's okay to fire your doctor. You can find another one.

Lisa: 12:08

It's okay to fire your doctor and find another one. There's plenty out there. Go to the right one. Like I said, I thought it'd be a rheumatologist that would diagnose me. It happened to be an infectious disease doctor. He was brilliant. He amazed me, you know.

Lisa: 12:24

Yeah, so so do you happen to notice a pattern throughout the year? Do you have times of year that you do better than others, or is it kind of just up and down all the time?

Lisa: 12:38

I do. It's up and down all the time, for sure. But I certainly do better when it's warmer out. Winter is very difficult, fall is very difficult and unfortunately, spring in Chicago can be very difficult. We had snow yesterday and today's the first day of spring, so it's 50 today, 30 yesterday and today's the first day of spring, so it's 50 today, 30 yesterday. That type of up and down barometric pressure is very difficult to navigate through. It's like being on a surfboard in an ocean tsunami. It's rough.

Lisa: 13:13

I could not agree with you more. Right right that barometric pressure. I think it puts so many of us into such a tailspin and if you're not recognizing that, start jotting some of that down, Because once you put two and two together, it might make a little more sense.

Lisa: 13:35

Oh, barometric pressure is a huge, huge thing. It's real. Barometric pressure is real and it affects lupus patients, sometimes in the worst possible way mildly medium, but it is real and it connects to our flares. You know, some people say, oh, just get warm, throw on a sweatshirt. It's not even about that. If it was that so easy, you know, that'd be great, but it's not even about that.

Lisa: 14:03

Exactly, Exactly. So what would you say are the most prevalent symptoms that you notice For sure?

Lisa: 14:12

fatigue, joint pain, muscle pain, pain, muscle pain, pleurisy, like the lining of my lungs, breathing, seeing. I had a light flare, you know, from sunlight in my neck this winter because I went to Florida, had to go on steroids. I hadn't dealt with that because the sun in Chicago is so weak. It really never was a problem, but now it's a problem. So I wrap myself up if I'm going to go in the sun and have a hat on, but just still, that warmth is so much better than freezing cold.

Lisa: 14:51

You know not being able to walk, sometimes on my feet, because my ankles are just not working that day. They're just not working that day. They're just not working that day. So it's a lot of times in bed, sometimes 48 hours in bed, and then you're a new baby deer and you're good to go and you're on your upswing and you're going for it, and that's just the pattern and you cannot give up. You have to keep going Now.

Lisa: 15:17

Now you touched on pleurisy a little bit. Do you mind explaining to listeners a little bit more about that?

Lisa: 15:23

That's the lining of the lung that gets inflamed, the pleuritic lining over the lung. You can get costochondritis, which is the inner muscle that can flare up and get inflamed. It can almost mimic kidney pain, but it's really your inner lining in between each of your ribs and they're inflamed. Or your whole lining over your lung is inflamed, making it difficult to breathe, and that's a very common lupus situation. The joint pain, muscle pain, spine pain, neck pain, you know you just all flare it up and it's just. It just sucks, absolutely. Your's the other way, absolutely.

Lisa: 16:21

Your body's angry. Your body's angry. Yes, how do you keep such a sunny disposition?

Lisa: 16:28

Well, my husband would say I'm not sunny all the time. But you know, we have this one life to live. We've been given this diagnosis and we have one life to live. We all can go down that rabbit hole, but you cannot stay there Like why me, I'm mad, this is awful, how am I going to live? This is no way to live. But really we have this one life and we can choose to live angry, sad, mad and just exist. Or we can make our life a blessing and live happy and have friends and love in our life and family.

Lisa: 17:05

And you know a group that supports us, whether it's a lupus group support group you're going to, or your family friends husband, boyfriend, or your family friends husband, boyfriend, your dog, your cat, whatever brings you joy and go from that vantage point. You know, and you can't give up, you just can't throw in the towel. That's my feeling. I mean and it's been 20 years I will not throw in the towel. You have to have that attitude. I will not give up. I will not throw in the towel and I want to help other people. I want to help other lupus patients and that's been one of my primary goals right now at my 20 year anniversary time to help others. I love helping others. I've done it for 37 years as a paramedic. Now, like I said, now very part time, but it is saved me helping other people.

Lisa: 18:09

I think that's a very good point is to bring up the fact that you know, once you get to the position that you're in to be able to support other people, strive to get there. Did you get there overnight?

Lisa: 18:23

Did you just oh no, oh no, of course, I thought I was unlovable. When I got this diagnosis, yeah, I thought it was over. I'm like, oh, I'm sick now I'm taboo, I'm tattered, I'm oh gosh, that girl's sick right.

Lisa: 18:41

How do you explain to those that are close to you what is going on and how you're feeling?

Lisa: 18:46

I think they know throughout the years I've explained, they've looked up lupus by now for sure and I'll say well, I have a flare or you know, I can't be near if you have a cold, you can't, I can't be with you. You know, I'm very careful. I still wear a mask. I don't care, you know, if that you know people don't like that today or like that today I have to wear masks. If I'm going in a grocery store I will wear a mask. So, um, do like I get. It goes back to doing what's right for you. You're your best advocate, no matter what it looks like. You know and explaining my husband's very good at knowing. You know he doesn't always like to accept that I have this awful, you know. But he also is my biggest cheerleader, so that helps to you know. Have him know and be by my side. My good friends know, they know what lupus is. And letting your friends know, or your family members, what is lupus, Give him a definition, you know. If that's what they need, give them the straight up definition.

Lisa: 20:02

Yeah, absolutely, and get into detail of what it feels like to be in a flare. Tell them how it's trudging through the mud, get down dirty and nasty about it, because they need to understand how you're feeling so they can better support you.

Lisa: 20:17

How you're feeling so they can better support you, Right, right. And then it's always, I think, good to FaceTime with them so they can see you're not looking yourself during a flare. They're like, okay, we get it. You know. You're just not so and you know flares is bedtime, Flares is rest time, Flares is being good to your body time 100%.

Lisa: 20:42

Do you feel that you've gotten to know your body well enough at this point to where you know that maybe you're running low on spoons? It's time to slow down or take a break.

Lisa: 20:54

Absolutely. The spoon therapy and definition has helped so much, like now I can talk to others, I got, I got about two spoons in my tank, you know, and they're like, oh, okay, or I'm down to one spoon, okay, get, go take a nap. Or I got six spoons today let's go to the zoo, or you know, I mean. So that has been fantastic analogy for them to understand, so that's been great.

Lisa: 22:28

That's wonderful. We have another Spoonie sister that recently she left me a voice message and she said Jen, I'm all out of spoons. All I have left are forks and chopsticks.

Lisa: 22:40

Some days it's like that, isn't it? Some days it's like that, but we are a sisterhood, the spoonies are a sisterhood, for sure, and that that in itself is beautiful.

Lisa: 22:53

Yeah, and I you know, I think that's a great concept, to to explain with the spoons and even bring in those forks and help people navigate, understanding how we feel, because they cannot be there as a good friend or a good spouse if they don't understand and if we're not opening up about it.

Lisa: 23:11

Exactly, Exactly. That's right. Now I have people saying how many spoons you got left.

Lisa: 23:17

I love it. I love it, so how has this affected your career?

Lisa: 23:22

Well, I moved to special events instead of being, you know, on an ambulance, a back of an ambulance. Even though I loved being on the back of an ambulance a long time ago and doing special events, I can't do as many of them anymore because I'm just tired or I get easily, you know, spooned out or you know. But I still love doing them, maybe once a week, twice a week, on a four hour shift. So I'm not doing really big shifts anymore, but truly taking care of people, helping them at their worst times, has truly helped me and saved me. For some reason it gets me out of my head and I think that's a big thing. Get out of your head. That's what I mean by connection spiritual meditate, journal, take a walk. Get out of your head. Have a hobby. I make jewelry. I learned from my aunt. You know, do something fun, paint, try, try to have a great hobby.

Lisa: 24:28

That you love, and whatever those hobbies are, or your or your movement. If all you can handle is five minutes, that's okay Start there.

Lisa: 24:38

You got to be okay with whatever it is. Cannot beat yourself up if it's six minutes. Four minutes, that's okay.

Lisa: 24:47

Start where you're at and work from there.

Lisa: 24:49

Start where you're at and work from there.

Lisa: 24:51

That's right, okay. So inspiration what?

Lisa: 24:56

inspires, you have to say, would be the other people that I see having lupus and still making their life a huge blessing. Like I look at Venus Williams. And Venus Williams, star tennis player, came down with a horrible autoimmune in her 40s, I believe, I'm not sure scleroderma, I think, but I'm not 100% sure. She took time off, she got it under control, she went wherever she went for her treatment and learned and did and came back and won grand slams back on the tennis court. I mean, if that's not inspiring, you know, I mean if she can do that, then I got to at least try, try to keep going here. So she's a huge, huge inspiration for me. Paula Abdul, toni Braxton, lady Gaga, paula Abdul, tony Braxton, lady Gaga, seal the singer they're all living their dreams. So you can still live your life. You know, if you look at these wonderful Selena Gomez acting, singing, she's done so much, you know, and she's got lupus and she's had some rough times. She really has, but she perseveres.

Lisa: 26:29

Yes, and each one of them still has a life to offer. It just looks a little different.

Lisa: 26:34

That's right, just looks a little different. Looks a little different, but they motivate me. Different but they motivate me. If they've worked that hard to bring pleasure to us through their voice or their music or their acting or watching them play tennis, certainly I can try to do something to be inspirational for other Spoonie sisters or brothers too.

Lisa: 27:00

Absolutely Okay. This is a random question. I didn't even have this on the list for you, but have you dealt with any hair loss?

Lisa: 27:08

Oh yeah, and I wasn't sure if it was my age or where it was coming from. Or you know, and my stylist that I go to I've been going to for the last I don't know 30 years. I just love her. We monitor it a lot but I can tell you that, being on my vitamins and my vitamin D and B, so along with taking a regular woman's vitamin and, like I said, I like the Dr Joel Fuhrman woman's vitamins and I do sublingual B12 and sublingual D that I get from my doctor we notice a huge difference in it growing, coming back Definitely when I'm on steroids. There's hair loss. There's going to be Definitely through a flare hair loss, whatever reason.

Lisa: 27:59

As you age it thins out anyway, you know. So you know I'll take the biotin in a gummy, but I think vitamins. Sticking to your anti-inflammatory diet is huge because you're getting lots of good vegetables and fruits anyway. So all of that plays a part in keeping healthy hair and using a good shampoo, you know, helps too. There's lots of ways to make it look thicker. You know. There's sprays and all kinds of things. There's lots of tricks oh, definitely.

Lisa: 28:36

There's. Uh, oh, gosh, I'm. I'm gonna forget the name, of course, but there's this one that's like a powder. A lot of the Spoonie sisters have been raving about it. They recommended it to me when I started having hair loss, and you can order on Amazon. I think it's called Boldify. Oh, have you heard of that one? I have not heard of that one, and so it comes in a couple of different forms the one I have, you just sprinkle it in there. In a couple of different forms the one I have, you just sprinkle it in there and I use it to cover up the spots that aren't quite coming in as well as the others are, and it's fabulous. It works just fine. It covers it up. You wouldn't even really terribly know, except for I now have hair about this.

Lisa: 29:16

Well, yeah, so do I.

Lisa: 29:18

Yeah, listeners can't see what I'm showing you, but you know like two inch long hairs and they're wanting to stick out the side of my head. It's absolutely embarrassing, but I'm sure you understand exactly what I'm talking about.

Lisa: 29:32

I do understand what you're saying. But you know what? I'm just so happy to have them. I'll just slick them back. I'm like great you're coming back. But yeah, you know, at one time I had a nice thick ponytail and now it's thin. But you know, I swear by vitamins. These vitamins, they help so much. Even my stylist has noticed a lot of the breakage or things that went away from periods of you know being in a flare. It's you know being in a flare or it's you know come back. They may be short right now, but I'm just happy it's growing. To me that says something about my body. If hair is growing and nails are growing, okay, something's going on good in there right, Definitely and honestly.

Lisa: 30:20

We can easily throw on a headband or a hat. My husband's solution was for me to start wearing hats every day Not going to happen, but I could throw a hat on when my hair doesn't want to cooperate.

Lisa: 30:32

Exactly, I'll do my Cubs cap baseball cap, you know and throw a bow in and make it look cute, right.

Lisa: 30:41

Exactly All right resources.

Lisa: 30:46

Resources. I find that the lupus is a huge resource. They have Lupus Foundation of America. They have Lupus Connect. They have lupus research that's just been done or they're looking for patients. It's a huge organization. They have so much to offer. Their website just has unlimited amounts of knowledge and resource available. Podcasts, such as Spoonie Sisters, listening to other sisters, you know, listening to other people that have autoimmunes or autoimmune patients or people that are dealing in living life on the health balance ball and managing lupus those are great. Somebody I follow on Instagram who. She's written books. She has lupus. She's done amazing things in her lifetime. She's a speaker. It's Lupus Chick Official. That is her name on Instagram at Lupus Chick Official. She's beautiful inside and out. I find her so informative. She has recipes. She's incredible absolutely.

Lisa: 32:02

I follow her too yeah all right. What is that last bit of advice that you'd like to leave with people?

Lisa: 32:12

the last bit of advice I'd like to leave with people is this is your life and you want to, and you want to make it beautiful and feel healthy and good, and so you can live in love and yourself to the best of your ability. And love, love is always the answer right. Love yourself, give love, receive love, make your life a blessing for you so you can just live it the best way you can and live your best, best life now. I love that. That's beautiful, thank you.

Lisa: 33:07

Where is the best place for people to reach out to you and get in contact?

Lisa: 33:13

I am also on Instagram and autoimmunewarriorinfo. At autoimmunewarriorinfo. I love people contacting me. I'm happy to help in any way I can. I am lucky I have had that medical background coming into this and now I just want to share it, just like the veterinarian shared with me his medical info, you know, to guide me when I was first on my journey. I know that sounds crazy. You know people say are you being treated by a veterinarian? But no, I wasn't being treated by a veterinarian, but I was guided and he gave me good advice because he too was an autoimmune patient. He understood. He understood.

Lisa: 34:02

Well, what a blessing he was to you and now you're being such a wonderful blessing to others. Thank you so much for coming on here. Thank you for having me. Well, my spoonie sisters get in touch with her. Contact her on Instagram. You won't regret it and until next time, don't forget your spoon.