EPISODE 3: The Importance of Specialists - Becky's Story

ALYSIA: Welcome back to Autoimmune Adventures. Today we will be discussing the importance of specialists. We're also going to be hearing from Becky, and she will share with us her story of autoimmunity. A fair warning today, we're going to be mentioning a handful of different kinds of doctors. And if you do not know what those are, we have provided a link to the Cleveland Clinic. it has a list of specialists, what they treat, and why you would go see them. So if you're curious, or if you're not familiar with the kind of doctors that we are mentioning, take a look at that link.

BECKY: You might ask why a specialist even matters, especially if you're somebody who really likes your primary care doctor. Why do you even need a specialist? When you have autoimmunity, it's very complex and specialists have a deeper knowledge of the specific diseases that you could have treatments for them. Because most of us that have autoimmune diseases often have more than one, you're probably going to need multiple specialists.

Your primary care physician, however, is an excellent resource. Usually they will are happy to recommend you to a specialist, if you know what kind of specialist you need to go to. Sometimes even if you don't know, they'll suggest it to you.

STACY: My primary care physician is who found my lupus, and that is kind of unusual, but it is what happened. So, get a good primary care physician, because if they don't know, and they're good, they'll send you to someone who can help you.

BECKY: First, if you're looking for one a good specialist ask your primary care physician, first ask people, you know, especially people that have the same kind of problems that you do. Research online. They have a lot of great tools online that rate doctors and give more descriptions about what kind of things they treat and how they could help you. And if you are part of any online support groups, ask your online support groups who their recommendations are. There are a lot of good ways, and as we talked about in the last episode, if you are not comfortable with the doctor you go to the first time, if you do not feel like you're being heard, if you do not feel like you're being helped, it's okay to seek a second opinion. But there are a lot of good resources and people that you can ask to help you find the right specialists to begin with.

ALYSIA: Yeah, I think that a lot of times your primary care doctor will simply refer you to somebody and you don't have to go to that person that you have been referred to. You can give them a try and that's great, but if they are not the right fit for you, just tell your primary care doctor, you know, I'm going to get a second opinion. I'm going to go to this person or this person, and any good doctor worth their salt is going to be willing to collaborate with whatever doctors you are working with, specialists you are working with.

So, a few things to look for while you are in the market for a specialist, you're going to want somebody who is a good communicator and who's really going to be willing to actively listen to what you say. They can explain things, complicated medical terms and, and treatments and testing, and all these things. They can explain them to you in a way that is understandable. Um, some people don't have as hard of a time understanding that as, as the next person, but I'm not that kind of person. I struggle. So, it's good to have a doctor who's going to take the time to understand those concerns and is going to listen to you.

And oftentimes, those good doctors are going to ask you to do something hard. Sometimes multiple hard things. They're going to ask you to do the things that are going to be good for you. The big six, the things we've mentioned before, they're going to talk to you about a healthy diet. They're going to talk to you about avoiding toxins. They're going to talk to you about exercising and stress management, and prioritizing sleep. They might ask you to do some, some things you're not comfortable with like, uh, elimination diet, which is...we've mentioned is kind of difficult. So, be prepared for that, and don't let it scare you away. A good doctor is going to hold you accountable for the things they ask you to do for your own health, and that's not a bad thing.

They're going to respect your input. They're going to listen to what you have to say. They're going to value your perspective on your own health, and they're not going to dismiss the fact that you have been the one living with this disease.

STACY: I think it's important to remember that if they don't respect your input, you need a different doctor.

ALYSIA: Absolutely. And as mentioned before, like you want somebody who's going to be willing to collaborate with your primary care physician and your other specialists if you need to be seeing more than one.

You also want somebody who is going to use evidence based approaches to treating your disease. They're going to have research and data to guide the decisions that they are...that you and they are coming to together for your health. It's okay for them to say that they don't know. That they are...that they need to do some research. I have had doctors say that to me before, and I actually consider that a good thing when they are willing to humble themselves enough to admit that they don't know what to do here. Sometimes they will refer you to somebody else, or sometimes they say, let me do a little research and get back to you, but it, they are, I mean, we always advocate for you to do your own research. Doctors have a, have a more in-depth understanding, they can interpret the research probably better than we can, and they can probably translate it, so to speak, and make it more understandable for you, but don't, don't take that as a...I'm just going to do what my doctor says, take that as they are, they are a professional, but you are entitled to advocate for yourself and make those decisions in your healthcare.

STACY: And I think it's important that you remember that because there are certain things that you should always ask during your 1st appointment or consultation. And let's just put it this way. If you're not feeling really secure with whether you've chosen the best doctor, you can ask if they give consultations, and that way it gives you a chance to go meet the doctor chat with them; see if they're a good fit; see if they're going to be able to care for you the way that they need to. It's a great way to get information, to find out if this is someone that you want to be on your autoimmune journey with. Is this a good trail boss to follow kind of thing.

So, they need,,,you need to talk to them about treatment philosophy. You want to know how they are going to approach managing your disease. If they're the kind of person that is going to provide you with only 1 option or multiple options. Most, and I say most, because I have to be real here, they're going to be times when a disease requires one strong forward choice or medication that is going to nail the problem.

And so I'm not saying if they don't provide options, they are bad. I'm saying if they provide only one option, but they can give you a really valid reason for it, then you know, you found a good person. So check in and see if they're willing to talk to you about it. If it's a doctor who's not going to treat you like the intelligent human being that you are, you need to find a different doctor.

ALYSIA: I was also going to add to that. Um, while you are asking about treatment philosophy and treatment options, one thing that I always ask is, "Are you...will you try to help me treat the cause of my problem?," and because a lot of doctors are completely happy to slap a bandaid, so to speak on your disease that will just treat your symptoms, and granted, we don't know all the causes of autoimmunity, right? But we do know some things that have...affect it. And again, the Big Six,

STACY: Um, I agree. If we concentrate on the Big Six, that is going to help us to get that forward momentum that we need. And if our doctor is concentrating on those, then we know that they're really aware of what we need to be healthy.

You also need to know about a follow-up schedule and here's a couple of things...there's a couple things I need to say about this. The first one is , like we talked about last week, you have to advocate for yourself. Doctors have hundreds of patients. If you get testing done and you don't hear back from them in a timely fashion, don't just say, "Wow, what a crappy doctor." You have to advocate for yourself - call. Because 99% of the time, it's just that it fell through the cracks. It wasn't because they have some vendetta against you, okay.

I have had so many friends not get the care they needed because they didn't advocate for themselves. They went to the doctor, they didn't call back. They didn't have that follow-up, and given in an ideal world, that is how it should happen, but that's not always how it happens. So, if you don't hear back from your doctor, you need to call and find out what's going on. But while you're there at the doctor's office, you should ask about what their follow-up procedure is: if they're going to give you a test, say, "Okay, so I'm getting this test on Tuesday. When can I expect to get the information about the test?"

You have to be proactive, and I know if you're shy or timid, or if you're someone who's like, I just don't want to bother anyone...you are paying this person to help you. So, please advocate for yourself. You don't have to be loud and brassy. Like I am, I'm just saying that you need to say, "Hey, I need to know when I can get this information so that I can move forward with my life."

BECKY: I was going to say, you can be an advocate and still be polite. They're...you can ask kindly, they're humans, things happen, and they're busy. They're very busy people. And so, it's okay to advocate for yourself, and it is important to still be polite.

STACY: What you need to remember is that if you go in and you talk to your doctor, and you can have a good conversation with them, and they're open, and they give you clear understanding of what you need to be doing, then you've found a good doctor, and you should settle in with them, and allow them to help you, and answer your questions, and help you when the research doesn't make sense, as Alysia was mentioning.

BECKY: And I hope that you guys will see, as I share some of my autoimmune journey, how important a good specialist, a good trail guide can be for you, because for me and my personal autoimmune journey. The right specialists really made all the difference.

So, I, I was a pretty healthy kid. I don't remember having a lot of health problems. I did have a few minor allergies, but I really didn't spend a lot of time at the doctor. I never had to go to the hospital or anything like that. I was a pretty healthy kid.

My first really obvious autoimmune trail marker happened when I was in college. I got this horrible rash on my arm. Um, it was painful. It was raised up. It was not your ordinary rash, and I had had hives and allergic reactions before, but this was very different. And I went to the doctor there. They couldn't figure it out. They sent me to a dermatologist who gave me some creams and things that didn't really work. It helped with the itching, but didn't really help it go away.

And at this point, it spread all over both of my arms, up my neck, onto my ears, and a little bit on my face. And it was, extremely embarrassing. It was like, I just was stuck with it, and it eventually resolved after about two months on its own. It just went away, but I kind of looked at it like a medical anomaly. We never figured out what it was. None of the doctors had answers, but I would learn later that that was one of my symptoms of my, my lupus that was undiagnosed at the time.

About a year or so after this, I started having severe abdominal pains., but I had thought because they were triggered most often when I would go pee, I thought they were like bladder related infections or whatever. But they had progressed to the point - it wasn't always when I would go to the bathroom either -but I would have these horrible pains that would make me double over. Um, the pain was so bad, sometimes I'd break into a cold sweat and blackout. And so, I had gone to a couple of doctors and nobody seemed to have any ideas, and my mom was the one who had suggested to me to journal it, and this is...we have mentioned before, the importance of journaling your pain, your problems, your symptoms, and that was a game changer.

I was calendaring when I was having the pain, how severe it was, and I was able to take it to the doctor, and at this time we were living in a small town, and so it was just a family doctor. And he looked at my calendar and kind of honestly brushed me off and told me I had mittelschmertz, which is pain when you ovulate. And I knew immediately, because I had the evidence, that that was incorrect, because I was not ovulating five or six different times in a month throughout the course of the month that I was having this pain. And so at that point, my mom and some other family members had recommended I go see an OBGYN, that maybe there was something going on there.

And so this was the first time that I really got to see the value of having the right specialist. I had to travel about four hours to get to a good OBGYN, but literally I showed him my calendar and how I was having the pain and explained what it was. He was very optimistic. He was very upbeat, but he looked at it and he said, "Hey, you know, I really appreciate that you provided this all for me, because it makes my job a lot easier." He said, "I think you have endometriosis, but the only way we're going to know for sure is if we do an orthoscopic surgery and see if it's in there." And so we did that, and his diagnosis was correct, and they took care of it and cleaned it up when they were there. At the same time, I was also diagnosed with PCOS, or polycystic ovarian syndrome, and even though these are not autoimmune conditions - the Global Autoimmune Institute has not classified them yet as autoimmune conditions - studies have proven that if you have endometriosis, it increases your risk for other autoimmune diseases. So, this was also another big trail marker along my journey.

Um, and so I went with the treatment with that and, uh, was doing a lot better. Fast forward for a couple of years down the road and I had my first knee surgery. I had had issues since I was in high school with my knees, but this was bad enough that I was literally bending down and I couldn't support my own body weight. I would fall, and I was in a lot of pain. The doctor did testing and he thought I just had a tear in my cartilage. So I went in for a surgery to repair the tear in my cartilage. When I came out of surgery, the doctor simply said, "Your cartilage looked like shredded tire tread," and that it was in really bad condition. Enough that they did a bunch of tests, because as young as I was they thought that maybe I had rheumatoid arthritis or possibly even cancer. Fortunately, at the time all of those came back negative and at the young age of 23, I was diagnosed with osteoarthritis - and again, osteoarthritis is not an immune disease...autoimmune disease, but getting it so badly at a young age was probably a result of my silent autoimmune diseases.

And so the other not fun thing that happened with this particular knee surgery was that I got blood clots in my legs, and they did some blood tests that...and they, everything came back negative. Nothing showed that I had any kind of like genetic reason to have, um, blood clots. And so they just assumed because sometimes people get blood clots with knee surgeries, they assumed it was related to the surgery. And so, I just did a protocol of taking blood thinners for six months and then went off of them. Unfortunately, this was a trail marker that neither my doctors at the time, or I realized, and we kind of just hiked right past it.

Through my 20s, I continued to have issues with endometriosis and PCOS, as well as some other female issues like polyps in my uterus, precursor cancer cells on my cervix - several things that required, unfortunately, surgeries and treatments. I also had a lot of frequent migraines, so I had a lot of medical stuff going on in my 20s. That said, I really tried not to let my health slow me down. Um, I had all the crazy health stuff going on, but at the same time, I graduated from college. I worked some really great jobs. I traveled to England and Scotland. I spent a year exploring the east coast while I was a nanny in New Jersey and I was really living a good life in spite of my illnesses.

My next really big autoimmune trail marker came when I was 29 and I started having issues with my intestines, and it sounds funny, but they became particularly noticeable to me. I would go to church or other places that were really quiet when you're in a room full of people and suddenly my stomach and my intestines are making these horrible gurgling noises. Um, enough that it motivated me to go to a gastrointestinal doctor.

This GI doc, he sent scopes up my back end and my front end. I swallowed little tiny cameras trying to figure out what was going on. At the time, celiac disease, people were aware of it, but it was not as well known. It was harder to diagnose. They didn't have the blood test for it like they do now, but because our father had had celiac disease, I was aware of it and some of the symptoms. And so, as my GI doc was trying to figure it out, and he had even found some ulcerations in my intestines, it wasn't severe enough. Like, he had felt, he was almost afraid to give me the diagnosis of celiac disease, because at the time, it was still so hard to find gluten free things, and people were afraid to go gluten free, that he was, he was honestly hesitant to say, "Hey, you have to go gluten free," and he seemed very surprised when I told him, "Hey, can we try this out? Because I know I can do it. My dad was celiac. I know what it entails. I know what I'm supposed to do and not supposed to do, and I'm willing to try this." And so he agreed, and, uh, I went off of gluten and my intestinal issues were solved almost immediately.

ALYSIA: Okay. Can I just chime in and say how wild is it that all three of us at some point have had to convince our doctors that we had celiac disease? Like, we, we were the ones that had to say, listen, I think that this is something that needs to be done, but I was cracking up because as you're talking about scopes up your front end and your back end, I was like, oh, those would be some of the difficult things we mentioned the doctors might ask you to do, and usually you're unconscious for those. Sometimes you are unconscious for those, but I have had some that I was not unconscious for - things that just were really uncomfortable. But ultimately led to some very helpful diagnoses.

So you, you might have to do some crazy stuff to get your diagnoses or to rule out your diet, you know, other things. Um, but don't, again, don't be afraid to advocate for yourself. We, sometimes you really do have to tell your doctor, listen, I think that this could be it. Can you just test me? My doctor said, Oh no, no, you have none of the symptoms of celiac disease.

Sure enough. I had celiac disease. You know, say, I think that happened and they're not going to ask you to go gluten free if they don't, if they aren't positive, right? Yeah. Two of my daughters have celiac disease. They got positive blood tests. I went to a pediatric gastroenterologist and he said, "Well, I don't want them to go gluten free until we've confirmed it with an endoscope with an endoscopy for each of them."

And I said, okay. "What? What are you talking about? Why would we need to do that? They have positive blood tests. I have celiac disease. Both my sisters have celiac disease. My dad has celiac disease..."

"But we don't want it...we don't want to have them eliminate gluten from their lives unless they really have to. And the only way we can be positive is if we do an endoscopy and confirm it."

And I, and I said, "Well, They got positive blood tests, right?"

"Yeah, but there's a false positive for like 4% of people."

And I said, "Do you really think with my family history, these girls have a false positive? I'm not putting them through that if I don't have to, they have celiac disease."

We've gone gluten free. So. Sorry, that's my on a soapbox there, but don't be afraid to advocate for yourself in situations like this. And sometimes you will have to convince your doctor to do certain testing, or you will have to convince your doctor that you can do a difficult thing like going gluten free.

BECKY: Exactly. And, and don't write off your doctor if you have to advocate for yourself because this doctor was the perfect example. He was actually an excellent GI doc. And I suspect, like I said, because maybe celiac wasn't as well-known at the time, and he probably, I'm guessing, in his day he had probably gotten a lot of people who very negatively, "Oh my word. I'm not gonna do that! There's no way I'm going gluten free."

STACY: My GI doctor is the perfect example of this as I said last week. He didn't want to test me. He tested me and then for the next five years was like the best GI doctor I'd ever had in my life. Just because you have to tell them, "Hey, I'm...I need..." and I used the word advocate. "I see the need to advocate for myself here."

He's like, "Okay, well, you're right. It's just a blood test. We'll do it."

BECKY: Yeah, but anyway, this GI doc, like I said, after I said, "Hey, let's just try this" and he said, "okay," he was totally on board with it. And when he saw that it worked, he thought it was great. And he brought dietitians into the picture and all the things to help me get a lot of the tools that I needed to go gluten free and improve my life.

And so this was, again, another case where I saw the benefit of having the right specialist. So I'm going through all these fun diagnoses, and at about the age of 31, I decided to take a leap and move to the Dallas, Texas area. My best girlfriend was living there at the time, and she recommended me for a job, and it was a raise in salary, and I had kind of been thinking I needed a change of scenery anyway, so I took the job.

Unfortunately, after only living in Texas for three months, um, and right before my 32nd birthday, I found a lump in my breast. And it wasn't a huge surprise to me. We do have a very extensive family history of breast cancer, and so long story short, I went in and got a biopsy, found out that I had breast cancer and, um, that I was positive for the BRCA1 gene mutation. So, my treatment plan was bilateral mastectomy and chemo and radiation. I was kind of unnaturally stoic about this enough so that my primary care doctor thought I was in shock when he told me I had cancer, but I literally just had my plan. Like I had been working, ironically, at a cancer center before I moved to Texas, so I had a lot of connections there, and I had Stacy and Doug who lived in Utah, so that I knew I could go to the cancer center, have the surgery and the care that I needed, and Stacy and Doug had offered to let me live with them while I was recovering from my mastectomy and starting my chemotherapy, and so this was the decision I had made.

And like I said, I, I was kind of almost unnaturally stoic about things, like I, I had my plan, I felt like everything was just gonna go the way that I had figured it out, and if any of you have seen the movie Labyrinth, whenever somebody says something like "It's a piece of cake!," and then something crazy happens, that was kind of what happened with me with my cancer treatments.

I had my first chemo treatment and I thought, wow, this is not as bad as everybody had led me to believe. And at the end of that treatment, just before I had my second one, I had unknowingly been exposed to somebody that had stomach flu. And normally something that just would not have been a big deal for me was so severe I got neutropenic fever -which is actually deadly, potentially deadly for people that have cancer, especially - that put me in the hospital for quite a while. Um, because I had...I guess I hadn't been taking things seriously.

ALYSIA: It was truly terrifying. I was more worried that that was going to kill you than the cancer.

STACY: Having to pick her up off of the bathroom floor and take her to the emergency room multiple times in a four day span was terrifying, and I think the thing that was the most terrifying is because she had been so stoic, and now suddenly she was not stoic anymore. And so, I was worried as you always are with people with cancer, about her, her mental well-being. But she pulled out of it and was okay. Um, but it was, it was truly terrifying for us.

ALYSIA: It was touch and go. It was really, really scary.

BECKY: Well, and I didn't realize it at the time, because obviously you are totally immune compromised when you have cancer. But at this time, it was very clear, you know, looking back, I still had undiagnosed lupus, and so I was even more susceptible to infections, and I was not aware of that, and I was probably not as careful as I originally should have been. I got better after that happened, though. Um, but, unfortunately, chemotherapy did continue to be the gift that kept on giving, and I had some other complications.

I got blood clots again. This time, because I had had a history of blood clots before, they did a more comprehensive set of blood tests, and they confirmed that I had the lupus anticoagulant. I assumed at this point that that meant I had lupus, um, although the hematologist (the blood doctor) assured me that I did not, because, um, my ANA test, blood test wasn't positive, and you will hear us talk about that later, ANA is the most common blood test for lupus, unfortunately, there are a lot of false positives and negatives on it. And it's, it's not always the most effective test of knowing whether or not you actually have lupus, and I didn't question it, cause I didn't know better. Um, so I did not go consult a rheumatologist at the time. So, at this point I really missed my trail marker big time. And I ended up taking a few more laps around the mountain because of missing that.

Like I mentioned, chemo, unfortunately was the gift that kept on giving. I also got neuropathy so severely in my hands and feet that they actually cut my chemotherapy short. They, they did not have me do my last session because they were concerned that I was going to have long-term nerve damage.

Probably the hardest thing that happened to me was going through premature menopause. I had had the severe endometriosis and had multiple surgeries. And with that, and now my diagnosis of BRCA1 that increased my risk of ovarian cancer significantly, and the fact that I was going through premature menopause, obviously, I was not going to be able to have children, and all of my doctors recommended I have a hysterectomy.

That was actually harder for me than my mastectomy. Um, I've wanted to be a lot of things and I've gotten to do a lot of things in my life, but I had always wanted to be a mom. And as we've talked about before, sometimes your autoimmune journey leads you in really tough, tough paths. But I still made that absolute decision that in as difficult as it was, I was not going to let my health issues consume my life.

I had decided that I knew I wanted to be a mom. So I was looking into foster care. Um, along the foster-to-adopt program, I had a great job. And, um, after I had finished my chemo and radiation, my, my girlfriend who had helped me get the job, um, had convinced me that I need to, to look at starting to date again. And, and honestly, I wasn't really on board with that, but I told her I'd try. We were trying to support each other. She was wanting to date. She knew that it would be good for me to try and date again. And so I did, and I met my husband, Scott. And, um, bless him, he fell for me when I had like ugly chemo...post chemo hair where it's coming in and part of it's curly and part of it's straight and it's all over the place and you're not looking very attractive. And he saw beyond that and saw me, which was such a blessing. And even more important, during the time that we were dating is when I had my first attempt at breast reconstruction after my cancer. It did not go well. I had multiple infections and I ended up in the hospital. And again, I still had undiagnosed lupus, and so we didn't understand why I kept getting so many infections, because my lupus was untreated. But at the time, I just assumed because Scott and I had not been dating very long that he would jump ship. You know, I was surprised when he wanted to date me. I was honest about being a cancer survivor, a very recent cancer survivor. And, uh, he stayed on board, and he was awesome and amazing and supportive. We got engaged and married and, um, he brought into our relationship, my three children, and helped me become the mom, the parent that I wanted to be in a way that I had never expected. It was a trail and a journey that I took a completely different route...than I had planned, and somehow had gotten something just as good, and even better than I had expected.

Shortly after we were married, I made another attempt at breast reconstruction, but unfortunately had more issues with infections, was on antibiotics, IV antibiotics for weeks at a time, and because of my wonderful husband, he was actually the person who convinced me that I just needed to say no. My vanity, and also maybe because I was newlywed, yes, I wanted to have nice breasts, but I also was thinking that would be nice for my husband, you know, to have me have nice breasts. He was the one that actually said enough is enough. "Your health is more important. I care about you being here." And that was the decision that made me say, "Okay, I'm, I'm going to be done with this." And, and I think that's an important thing to know. This is why we want our tribe, our good people in our lives, because sometimes we don't take care of ourselves the way we need to, and we need people that will help us.

I, fortunately, also had good doctors at the time who were very supportive who also said that that was a good plan and that we just needed to move on. So we did that. And fortunately, for a few good years, I actually was able to enjoy after making that decision. I was able to enjoy being a newlywed and a mom to our busy, creative kids, and not have a lot of health problems.

A few years later in my late 30s and early 40s, I did start having more issues with infections. I couldn't kick colds and flus as easily as other people when I'd get them. They'd hang on for weeks on end. I had chronic sinus infections and I even had a severe intestinal lining infection that led to multiple hospital visits.

And at this time, my lupus was still undiagnosed. Um, I just thought it was the long term effects of cancer and my treatments, but uh, amidst all this again, like I said, there's a lot of things that seems like it would be consuming my life, but I still continued to live my life.

We moved into our dream home, a small 13-acre farm, and we loved it. I got lots of outside time. Unfortunately, I did not know at the time that was probably not the best thing for me having lupus, but. I loved it. We had all of our animals and I would spend tons of time with the animals. We had our beautiful wild flowers that I loved to go out and photograph and catalog, and we were really just living our best lives. It was something...I had wanted to live on a farm since I was a child. And I really, truly felt like I was living the dream.

But then again, I started having health issues. I was having severe body pain. I started losing my hair and I had extreme fatigue. And honestly, I was genuinely concerned that I might be having cancer relapse.

Fortunately, all of that came back negative, but, um, talking to both of my sisters who had already been diagnosed with Hashimoto's, I thought maybe that was the next option because of some of the symptoms and that came back negative as well. The clue that finally helped me understand it was lupus was that I started really having a severe problem with the sun. I would go out and it would feel like death. I would feel like my skin was on fire, and I would feel so awful after being out in the sun. And after one particular bout when I thought I would go out and help mow the lawn, because I actually enjoyed doing that, and I just felt awful and had to come inside because I felt like I was going to pass out. The next day, I had that rash, just like I had had in college, that horrible raised rash that was all over different parts of my body. And at this point, I had been talking with my sister, Stacy, who had recently been diagnosed with lupus. And she said, "Get to a rheumatologist, because I'm pretty sure that's what you've got, with the sun problem, especially."

And sure enough, the right specialist made all the difference. At 44, I literally went into my rheumatologist, I told him what my symptoms were, and he said, "Pretty sure you've got lupus. We're going to do some blood tests, but based on your description of everything that's going on, I'm pretty sure that's what it was," and he was right.

I was diagnosed with lupus. On my very second visit to the rheumatologist - because he was so in tune and aware of what was going on with me - as he was testing my joints in my hands and examining them, he noticed that my hands were extremely cold on a very warm day. And so at that point, he asked me another series of questions. He did some pressure tests, and he saw...he diagnosed me with Raynaud's syndrome. Which was my bonus disease. My sisters and I always do...

ALYSIA: Bonus disease! We all have a bonus disease.

BECKY: We joke around about the bonus diseases.

STACY: It's like you get your major one...

ALYSIA: Right, right. As mentioned, if you have one autoimmune condition, it is, you are more than, uh, twice as likely to get another. We we laugh and call them bonus diseases.

BECKY: Yeah. Because as we say this, this is where you have to have a sense of humor about it.

STACY: Mm, hmm, you really do.

BECKY: But again, because I had the right specialist because he was in tune with what was going on, about a year after I was diagnosed with lupus, I had what I thought...I had been having really severe joint pain and body aches, and I thought it was just a prolonged lupus flare. I had been to the rheumatologist a couple of times. He was doing labs to see if my lupus and my, my inflammation markers were up. And after having several tests that showed that my inflammation was under control, he did some more tests and he said, you know, you have fibromyalgia as well. So that was my other, my other, other bonus disease.

Um, I was diagnosed with fibromyalgia and it is, it's an ever changing battle. Anybody with autoimmune knows it. For several years, I was able to take hydroxychloroquine to treat my lupus, and it worked great. And I used amlodipine to treat my Raynaud's. Likewise, worked great. No symptoms. After about two or three years, I started having reactions to both, and I had to change my, my, uh, treatment. And I'm up to doing monthly infusions instead.

Everything's different. I have had to get other specialists in my life. I have a cardiologist that takes care of my lupus and fibromyalgia-related chest pain that I get. I have a neurologist that monitors the neuropathy I have in my feet and my legs, and he also monitors the cognitive changes that I've had because of lupus. I have an endocrinologist that I see every like half year to year-ish that helps monitor my thyroid, and my orthopedic surgeon is still dealing with my osteoarthritis. I recently had a knee replaced, and I am going to have to have another full knee replacement on my other knee in a few months. So it is, it is an ever changing battle, but at the same time, good specialists have helped me manage my diseases in ways that I never could have done it alone, and I'm so grateful that I've had them.

So, you know, you hear us talk about doctors and the good and the bad. There are a lot of good doctors out there, a lot of good doctors. Find them, make them your trail guides, make them your, your tribe, your people that help you out, because it will make a huge difference in your life.

STACY: Please join us next week here on Autoimmune Adventures, when we discuss the importance of moving forward, keep moving forward. We're also going to hear from Alysia and a little bit about her autoimmune journey. And we hope that if you have any questions or any comments that you would like to make, that you'll leave them in the comments section.

And as always, if you want to see what we're up to, go to autoimmuneadventures. com.

HELPFUL LINKS:

List of different types of doctors, what body parts/systems they specialize in, and some of the diseases/conditions they treat.:

https://health.clevelandclinic.org/types-of-doctors

Autoimmune Association's guide to finding the right specialists for you:

https://autoimmune.org/resource-center/finding-a-physician/

Medical article about women with autoimmune diseases having increased risk for gynecological issues.

https://www.sciencedirect.com/science/article/abs/pii/S1571507805040122