Marissa: Welcome to the “12 Months, 12 Journeys, 12 Lessons” Podcast. This show features monthly a different health condition or cause. The goal of the show is to learn from and uplift our guest. My name is Marissa Christina from Abledis.com. We have in our midst a very special woman.
Sara Gorman was diagnosed with Systemic Lupus at the age of 26. She was determined not to let Lupus rewrite her plans for the future, leading her to press forward with a busy work and social life. But life had a different plan. Sara currently blogs, has written a fantastic book called, “Despite Lupus: How to Live Well With a Chronic Illness”, and is selling fashionable bags designed to carry medication.
I’m so excited to welcome to the show Sara Gorman. Hello Sara.
Sara: Hi Marissa. Thanks for having me.
Marissa: This month’s 12-12-12 project is featuring Lupus. More specifically, we’re going to focus on Systemic Lupus. Sara, let’s start with the technical. Can you explain, what is Lupus?
Sara: Sure. I can. Lupus is a chronic autoimmune disease. It’s kind of like a type of self allergy where the body actually attacks itself. The immune system of someone with Lupus actually creates something called antibodies, which instead of protecting the body from bacteria and viruses like they would in a normal body; in a Lupus body they actually attack body tissues and organs, like the heart, kidneys, lungs, even the skin and bodily systems like the central nervous system, for example.
Typical symptoms of someone with Lupus are things like extreme fatigue, joint pain, muscle aches, hair loss, swelling, hives, fevers, and a whole host of other things. It’s definitely not limited to that.
Marissa: So if everything in the body has connective tissue, basically any part of the body can be affected by Lupus?
Sara: Absolutely. I should explain there are two primary types of Lupus. There are actually three, but we’ll focus on these two primary types – Discoid Lupus, which primarily affects the skin and Systemic Lupus, which is the type I described earlier and which is the type I have which can affect every system in the body.
The third type of Lupus is medicine-induced Lupus, which some medications trigger Lupus-like symptoms but once you go to the doctor and determine these symptoms are actually brought on by a medication, you stop the medication and then ideally within a short period of time those symptoms go away and you’re asymptomatic, and you don’t have any symptoms at all.
Marissa: So have they been able to narrow down what is causing Lupus? Is there something specific that causes Lupus?
Sara: No. Unfortunately, it isn’t known how we get the disease, which is unfortunate. But they are working on it. It is thought that there may be some environmental triggers that actually set it off in combination with a predisposition for the disease, somehow a compromised immune system.
Those environmental triggers can be things like sun exposure, infection, stress. It could be extreme fatigue. In fact, though, it’s very difficult to determine why someone suddenly develops Lupus. It could be anything. From one person to another it really varies on what caused the disease.
It really isn’t known, and it’s definitely a very frustrating part of the disease, particularly from a patient’s perspective.
Marissa: Yeah, that makes sense. You mentioned some symptoms so let’s take it back to your initial symptoms. What symptoms sprung out within you that began to alarm you?
Sara: Just to kind of set the scene, I was married in November of 2000. My husband and I went on our honeymoon. We had a great time. We came back, and within about a week I started having chest pain. It wasn’t pressure. It was actually in my back and side. It was really sharp.
It was so sharp that it was really difficult for me to take a deep breath. I thought, “Well, what is this? What’s going on?” Then over the course of about a week, I developed even more symptoms. The chest pain got worse and I developed a fever, swollen glands, a really sore throat.
Within a week after that, I was completely immobilized. I was in bed. I was shaking. I had cold sweats. I had night sweats. Something was clearly wrong. I had immobilizing pain in my hands. It was clearly an arthritic sort of reaction, and at 26 years old for that to happen, it was very clear. My husband and I knew something was wrong. We went to the doctor and within about six weeks of those first symptoms coming on, I was diagnosed with Systemic Lupus.
I’d like to just point out that that is highly irregular. Most of the time, people take months – if not years – to have Lupus diagnosed.
Marissa: I’m glad you brought that up, because in the research I kept hearing these words “classification criteria”. Every time I heard that word I kept thinking if you need classification criteria that probably means that the condition’s really hard to diagnose. In your own research with the community are you finding that it’s super lengthy or very difficult to diagnose individuals with Lupus?
Sara: Yes. It’s very difficult. We’re talking months – and that’s a long time to go. I have to say, I had a very acute attack of Lupus. Let me circle back and say that chest pain that I was feeling turned out to be pleural effusion, which was fluid around the lining of my lungs.
It was very clear that something was happening in terms of an autoimmune disease that was going on. There are eleven criteria I believe for Lupus and you only have to have four of them to get a diagnosis. I don’t think I had eleven at the time. Over the course of eleven years, I’ve had all of them. But at the time I think I had eight or nine of them.
It was very clear. There was no question in my doctor’s mind, in my pulmonologist’s assessment as well as the rheumatologist that I saw. It was Lupus. I don’t know what I would do if I had to go with those symptoms – the arthritis, the pain and the swelling. I don’t know if I had to go for more than six weeks with it, I can’t address that.
I don’t know what it’s like to have to wait that long. I’m sure it’s awful. I will tell you the downside of getting diagnosed so quickly was that as quickly as this disease came on for me, I thought and expected it to go away just as quickly. I was like, “Well, great. Now we know what it is; let’s eradicate it from my body and let’s move on.”
I don’t think I even heard the word chronic, even though everyone mentioned it over and over again for the first six months. I didn’t get it, because for those symptoms to come on so quickly, like I said the expectation was laid to get those symptoms under control and just return right back to normal.
Marissa: Wow. Is there a standard protocol of testing that you had to go through when you first arrived? Was it blood test? What sort of got you to that criteria?
Sara: That’s a good question. I don’t know how many of those eleven criteria are blood tests. Several of them are. Again, going back to the fact that, with Lupus, the body creates antibodies. A lot of those antibodies show up in blood tests. That’s what a lot of the tests are.
Some of the other factors are the butterfly rash, which usually appears across the cheeks. In fact, I’ve never had that one. A Lupus rash doesn’t only happen on the face. Some of the rashes that I’ve had have been Lupus rashes, but that’s called the Malar rash and I’ve actually never had that one.
Marissa: I think what struck me, I couldn’t believe – you even mentioned a few symptoms – but how many symptoms are present with Lupus. How are you monitoring and tracking these symptoms? Is there a protocol that you go with to keep track of what’s happening with all these symptoms?
Sara: Again, that’s another great question. I wish somebody had asked me that during the first year because I would have been, “I don’t know. What should I do? How should I track this?”
Marissa: That’s quite a bit of symptoms.
Sara: Yeah, because you just don’t know. I don’t know when it was – maybe two to three years into my disease (maybe not even that long) – I was completely overwhelmed. I was overwhelmed emotionally by all of these things happening to me, symptoms that I could compare notes with my grandmothers. It was really crazy.
Even the medicines that I was on, half of them were medicines my grandparents were on. We talk about Prednisone and Plaquenil and some of the blood thinners, the bone replacement medications. It was ridiculous how I had fast forwarded my life like 65 years. I was really having a hard time accepting all that and wrapping my head around the fact that I was a 26-year-old person in an 80-year-old body.
I was also overwhelmed, literally, with how many symptoms there were and how I could effectively convey those symptoms and the severity of the symptoms to my doctor. It just wasn’t happening the way I wanted it to. We all go in with a list and we have every intention of keeping that list.
When the doctor comes back and says, “You have a fever today, how long have you had that fever?” we all intend to say the truth and what really has happened, but you get in there and you have a Lupus fog or you’re a little intimidated or you’re tired, or you feel awful and it’s really hard to remember whether it started two days ago or two weeks ago when you’re trying to think of the seventeen symptoms that you want to bring up at that appointment.
I developed something called a Chronic Control Spreadsheet, and all I would do was list all the symptoms – and literally there were dozens of symptoms – down one side of the page of an excel spreadsheet. I started with just some graph paper, and then I put the days of the week across the top. Then every day I would take about 30 seconds at the end of each day and check off which symptoms I had.
The reason I did that is so that I could take that piece of paper in when I saw the doctor every two weeks – or eventually every four weeks (it got a little bit further apart). There was no question. I couldn’t lie to myself. I couldn’t lie to the doctor.
The other thing is I think we try to put on a good face and we try to say, “No. I’m sure it wasn’t as bad. I’m 26 years old. I couldn’t have possibly had this swelling for as long as I have.”
I’ll tell you, that spreadsheet didn’t lie. It didn’t lie to my doctor so that he was getting really accurate, specific information that he could treat me from.
Marissa: Wow. This is fascination. I’m assuming since you’re talking about this list of symptoms and you’re talking about doctors, have you developed a dream team of doctors and specialists over the years? What would be a specialist protocol for Lupus patients?
Sara: Again, it really varies. Most Lupus patients do have a rheumatologist. Typically that person is the person that coordinates most of your care. Like I said, there were times when I was seeing my rheumatologist every two weeks. Eventually we got to every four weeks and then every eight weeks.
Truthfully after 11.5 years I just am now to the point where I go every three months. I’m beside myself. I’m thrilled because it’s one less thing I have to worry about every eight weeks. But for me, because I had the pleural effusion and that fluid continued to come back and surround my lungs and prevent my lungs from being able to expand, I’ve had that fluid removed a couple times. I continue to get treated by my pulmonologist.
Some people have blood disorders with Lupus, whether they clot too much or they don’t clot at all, depending on what antibodies you have, so a hematologist sometimes is involved. There are so many that you could do. I also have kidney involvement, which is often called Lupus Nephritis, so a renal doctor is sometimes necessary, a nephrologist. Because I had the fluid around my lungs they were worried that it was going to go to my heart, I saw a cardiologist for a little bit.
Marissa: When you’re saying that you might have fluid or things like this, is this what they consider a flare up? I was a little bit confused on what they mean by flare ups. Is that what’s happening?
Sara: The definition of flare, I don’t know it exactly, but I think it’s just an onset of symptoms greater than they were before. It basically just means that your symptoms have erupted and they are active. Active Lupus is usually determined (A) by blood tests and (B) by symptoms. Whatever symptoms you’re presenting.
My doctor just told me this last time. He said, “I look at the blood tests, but I don’t go by the blood tests, because a lot of Lupus patients their blood tests fib. Sometimes their complement levels run low all the time. Sometimes their sed rates run high all the time. It just depends on how you’re body’s affected.
Again, going back to the spreadsheet, it’s so important that you have a collaboratively beneficial relationship with your doctor so there’s no question when you walk into that doctor’s office that he knows exactly what your symptoms are. You are the best gauge of how active your disease is.
I talk about this in my book, but if you get yourself into a situation like I did where, again, at 30 years old, I didn’t want to be sick. I didn’t want to be the one complaining in the doctor’s office. I didn’t want to admit to myself that, yes, I had those fevers for a month, or that the joint pain had never subsided, or that the chest pain was back.
I thought the more I ignored those symptoms the faster they would go away because I thought that’s how we would rise to the top and rise beyond Lupus. But it wasn’t. All that was doing was preventing my doctor from treating the disease and moving more quickly to a solution.
Marissa: With that said, I want to go back to you at 26 because I want to get that initial reaction when you were diagnosed at 26. What was that like for you emotionally?
Sara: I will say that I’ve always embraced optimism. I’ve always gotten what I wanted by just pushing full steam ahead, working hard and thinking positively. I think that’s how most of us get ahead in life. That’s how we’re taught. Instinctively I thought that same approach would work with Lupus.
So at 26 years old, that invincibility, that feeling of, “Well this joint pain I’m feeling I don’t even know what this is. People are saying it’s arthritis, but it can’t be arthritis; I’m 26 years old.” The trick is that that attitude of invincibility is what did me in. I was so set on pushing through that I was ignoring the fact that I was actually making myself sicker by doing so.
Marissa: That makes sense. What was it like for you emotionally just talking about having to give up your career?
Sara: Fast forward four years into the disease I decided to go part time. I was kind of forced into that situation because I just couldn’t do full-time. I was just running my body into the ground. I was killing myself. I realized I just had to make a change.
Emotionally, that was the most difficult thing to do. It was so hard to admit that while all these other 30-year-olds are going to work every day. They can hack it from 9:00 to 6:00pm without even skipping a beat. The fact that I couldn’t do what most other normal people could do and what people were taking for granted, it just tore me up inside. It was really difficult to wrap my head around.
Again, you feel like you are giving in. It feels like you’re throwing in the towel when you say, “I have to work part time.” But that is the exact opposite. It’s actually you are embracing the disease and you’re saying, “I am a big enough person. I am strong enough. I’m confident. I’m empowered enough to say I’m not going to fight this thing anymore. I’m actually going to embrace this disease and start making decisions that are good for my health, that are going to put me back on the path to living well so I can start rebuilding.”
I can tell you for the year or so before I made those tough decisions at work, I was a basket case. I was a mess. I probably put myself behind the eight ball. I pushed myself back a year – if not two – just by pushing so hard.
Marissa: Wow. This is why I think your book is so critical. I have to congratulate you on this book because what you do is a lot of self-assessment and you’re very honest in this book. It’s sort of like you put the mirror up and you were looking in it. You even have a chapter in it – I think it’s called Looking Within.
How important do you believe it is to look within and self-assess? How important is that in your growth?
Sara: It’s essential and I think certainly at 26, even at 30 – even at present at 37, it’s probably the hardest part to do. But I am so much more self-aware than I used to be. I think that comes with age but it also comes with experience – certainly with Lupus. I realized that I had to become more self-aware physically and emotionally.
I think it’s really important to point out that when you’re dealing with a disease that has absolutely taken everything – it’s taken my mobility; it had taken my ability to work, to function at home, to keep a normal active life, a normal schedule just like everyone else like I was saying. Once that all becomes threatened you think you just have to desperately hold on to it so that you’re left with nothing. That’s what you think.
But what you realize is that shred of life that you’re holding on to is hardly worth anything. You realize you’re not living life anymore; you’re actually fighting it. Once you get to the point where you start doubting how much longer your body can go on, you think, “Maybe this alternative isn’t so bad.”
That’s absolutely why I wrote the book, so that people wouldn’t have to reach the bottom of the barrel before coming to this conclusion or this epiphany and saying, “You know what? If I just step back and look at my strengths and weaknesses – that optimism – is it wreaking havoc in my body in the way I’m approaching Lupus?”
Once you just take a few moments a day to say, “Am I doing everything I can to manage the disease? Am I actually helping my cause? Am I being a responsible patient?” Once you answer those questions truthfully, then it becomes more like a pragmatic or logistics issue.
I can deal with logistics issues. I can solve those. It’s those emotional ones that are so difficult to grapple with in your head. Should I keep fighting or should I not? Should I feel guilty about not being able to help out at the dinner table or cook dinner?
You’re just grappling with all those initial emotional issues of guilt and giving yourself permission and all those things. It’s so much easier to look at it as more of a problem solving issue than anything.
Marissa: I think, for me, what drew me to you and what drew me to interview you was you’ve been blogging since 2007 correct?
Marissa: 2008, okay. If you look at your blog, there’s just so many positive and uplifting stories. Do you feel that your optimism is what’s driving you to tell your story? What’s pushing you to share your story with everyone?
Sara: Good question. I would say most definitely the push to continue to share my story is because I realize the more posts I put out there and the more speaking engagements I have and the more book signings I do, people come up to me time and again and, just like you said, Marissa, just like you were telling me, you could have written this book. Some of the parts are just mirror images of what you experienced. I can’t even tell you how many people have told me that.
That’s not a tribute to my book. That’s actually a tribute to the fact that I’m not alone, that we are all dealing with this issue of how do we wrap our heads around a chronic illness that immobilizes, that necessitates changes in your life that you never thought you’d make before – and certainly earlier than you thought you’d make them.
If there’s any way that I can fast forward the years that people take to struggle with those questions and figure out how you’re going to deal with this disease and what can you do to actually improve it.
I actually say in my introduction that up until I wrote this book, I couldn’t find anything out there that told me this is how you deal with this disease, this is how it’s going to make you feel, and this is what you do about it. This is how you go about improving your life with Lupus.
There are dozens of books out there that are great for Lupus. Some of them are more technical than others and tell the medical component, which is very important. But there are a lot of books out there that say you’re going to feel depressed, and you might have to stop working. You might lose your hair and you might have these symptoms.
But I wanted to know what I needed to do about it. I wanted to know how I could deal with it and start coping with it and to actually turn it on its head and say, “If I’m going to have to stop working, how does that make me feel and how can I turn it around and make it a positive experience rather than the way it’s making me feel, which is awful inside?”
Marissa: I want you right now to share If I came to you and I needed mentorship and I was just diagnosed with Lupus, what would be the first thing you’d tell me to do?
Sara: The very first thing?
Marissa: Yeah. Just to help me sort of get on track to save myself so many years of being off track and lost. How would you help me get on track to live more of a positive experience through Lupus?
Sara: Well, I would probably tell you to read my book.
Marissa: Great answer!
Sara: Not so much for you to read my book, but partially because of this: because for me it was much easier to read about somebody feeling like this and having kind of a step-back experience rather than giving advice and saying, “This is how you have to do it.” It was much easier for me to share my story with somebody so that people say, “Hey, I did that exact thing. I couldn’t buckle my seat belt, but I still went to work. I couldn’t grip the steering wheel because my joint pain was so bad, but I still drove everywhere because I thought that’s what was expected of me.”
I ran fevers for a week straight and I didn’t miss a day of work because I thought that’s what you were supposed to do. I thought you were to continue to push through. It’s easier for me to say go read my book and digest it in the doses that you want.
That’s a hard question, because there’s a lot. I would probably set up six successive sessions. Bottom line, the one lesson that I wish I’d known before – and I don’t know how long it would have taken me to grasp the concept – was that the sooner I stopped fighting life, ignoring the symptoms, acting like I wasn’t being effected, assuming that pushing through the pain was better than actually holding up my hand and acknowledging that I was really in horrific pain.
The sooner I stopped fighting the disease and started embracing it and accommodating for the disease and making those life adjustments that I need to – taking a nap in the middle of the day, scaling back at work – the sooner I did that, the sooner I could start rebuilding. For me, it was truly an emotional hurdle that I had to get over.
Marissa: What a beautiful lesson.
Sara: Like I said before, chronic never sunk in with me. It wasn’t until I said, “Oh, this is going to be with me for a long time. I think I’m going to have to start accommodating it rather than just pushing it to the side,” because all that does is flare the disease and it kind of riles Lupus up I think.
Marissa: Sara, I want to talk about a recent project you’re working on over at Pillfold.com. Can you share with us about this exciting adventure?
Sara: I can. Thank you for asking. Certainly in my travels with my book, I have met thousands of people with Lupus and other chronic illnesses. It became very obvious to me that people struggled with one aspect of their disease and that was medicine management. It wasn’t so much that it was so hard to keep track of the pills, although it’s challenging when you’re on 7,8, 9, 10 prescriptions. Although today I’m on three, which I’m very proud off.
Marissa: Wow. That’s great.
Sara: It’s really hard to manage those medications and to keep track of them. Really the only solution I found was using one of those plastic, clunky pill boxes that you get at the drugstore that, again, my grandmother had two of.
Marissa: Is it the standard blue color?
Sara: Big blue is what they call it. I thought there has to be a better way that we can be people first and Lupus patients second. We can be hip, stylish and fun first and medicine dependent second.
So I looked. I tried to find a better way to organize and tote my pills in something that wouldn’t scream, I’m sick and wouldn’t make me feel older than I was. Truthfully, those pill boxes always came open on me and the pills would spill out in my purse. Additionally, the ones that do lock, if my arthritis was bad, it was too hard to open so I’d have to have my husband open it. It was a nightmare. I knew there had to be a better way.
Unfortunately, I couldn’t find anything. So I invented something and it’s called the Pillfold and the Pillpouch. They are what I call fun, fashionable bags for your medication. They have bright, fun fabrics. They’re fabric, first of all, rather than plastic.
They have shiny, chic hardware. A fun, sassy little handbag. Inside, of course, are your pills but they are disguised and nobody needs to know what you’re carrying inside. I’ll tell you, I keep one on my bedside table; I keep one in my purse.
I’m not embarrassed anymore to bring out my pills because it’s cute and it’s fun and it makes me feel better about what I’m doing. It makes me live well, despite Lupus.
Marissa: This is fantastic! I want to remind the listener that 5% of every Pillbag sold goes to a Lupus charity. I know you have a goal. What it that you want to give to charity?
Sara: We want to raise a million dollars. I started donating a percentage of certain book sales to the Lupus Foundation, and it was great. It felt like I was giving back and it was an easy way to help the cause.
Some people have said to me, “It’s great that you want to live well and it’s great that you had this whole platform or whatever you want to call it, but we need a cure. That’s what we need. We want to keep fighting for a cure.”
I agree. Of course I want a cure more than anyone. I have a three-year-old and a one-year-old and more than anything, I want a cure for this disease that has absolutely turned my world upside down. That said, I didn’t have time to wait for a cure. I needed to deal with it now. That’s why I wrote the book, because that’s a way that I can say, “We don’t have a cure today so how are we going to live with it? What are we going to do to live well despite it?”
Giving back in the donation is a great way to push for a cure. We’re just starting a Chapter of the Month Club so that every month a different Lupus charity is chosen and all the charitable donations from all the bags sold during one particular month goes to that chapter.
Marissa: This is just off the cuff, but if you’re listening to this right now, if you put despite Lupus in the comments, I will purchase you and Sara will mail to you a Pillbag of your choice. Be sure and go ahead and just leave your e-mail or whatever. If you need a bag to hold your medication, we’re going to start the right way on Abledis.com and support charity. That’s what I want to do.
Sara, you’ve talked about a lot of important lessons today but for those that listen, they know that I am fascinated by life lessons. Is there a lesson or message that you want to share with a listener – something that you feel needs to get out?
Sara: I will mention a phrase in my book. It’s a little kind of a poem that I came up with that a lot of people have been able to identify with. I think people who are sick and people who aren’t sick, I think we’re a driven society. I think it’s hard to accept help and ask for help. But I think, certainly when you’re well it can take its toll. But when you have a chronic illness it’s a terrible cycle and it can have terrible outcomes.
I’ll leave you with this. This is something I wrote:
“The harder I push, the sicker I get. The sicker I get, the less I resemble myself. The less I resemble myself, the harder I push to regain some semblance of who I used to be.”
The point is you’ve got to break that cycle. You’re in control. I will say, obviously to my book and doctors will say there are lifestyle accommodations you can make to help manage the disease and help life with Lupus be better. It starts within. It really does. You have to make up your mind that the way you’re doing it right now, pushing through the pain, isn’t working – or it’s not working as well as it should.
Once you decide to break that cycle and start living well despite Lupus, the whole game changes and it’s a wonderful thing.
Marissa: Sara, thank you so much for talking with me today. I’m just so excited to see where your next life journey is going to take you. I just need to personally thank you so much for this book and inspiring me to look within, and others. It just means so much.
If you want to learn more about Sara, please check out her blog, DespiteLupus.com. Also be sure to check out Sara’s fashionable bags at Pillfold.com. If you want to learn more about Lupus, please head over to Lupus.org.