The Reality of Living with Lupus: A Conversation with Alice Derrig

In this episode, I'm joined by Alice Derrig, a lupus advocate from England who is using her voice to raise awareness and support others living with chronic illness. This was such an important episode for me. Being diagnosed at 16, I was not able to connect with others around me who may be living with lupus as well. Meeting Alice has given me a new sense of community, and I am so thankful. 

Alice shares her personal journey of being diagnosed with lupus, the challenges of navigating life with an invisible illness, and how she's learned to adapt while continuing to inspire others. We also talk about the importance of community, self-advocacy, and finding hope through the ups and downs of living with a lifelong condition.

Alice is the creator of the social media platform A Girl's Guide to Lupus, where she shares honest insights, practical advice, and encouragement for people living with lupus and other autoimmune conditions. She was also featured in a BBC documentary, helping bring greater awareness to the realities of living with lupus. Alice is the definition of "Lupus Warrior" and I am so glad that we were able to connect and share our stories.

Whether you're living with lupus yourself, supporting someone who is, or simply want to better understand autoimmune disease, this conversation is filled with c valuable information. I hope you enjoy the episode and take a moment to truly reflect and think about what it may be like to live with a chronic illness.

To the lupus community - you are never alone. I see you, I hear you, and I am here for you💜

https://www.instagram.com/amycohen.mao?igsh=MWwyYjdlenVubzNqMA%3D%3D&utm_source=qr

Transcript

SPEAKER_01 0:00

Hi everyone. Today we have a very special guest. So I'm going to let her introduce herself. So if you just want to give an introduction and share a little bit about yourself.

SPEAKER_00 0:11

Hi, I'm Alice from the Instagram page, Girls Guide to Lupus. So I'm 32, and when I was 17, I got diagnosed with lupus. Since then I've had various other diagnoses like fibromyalgia and things, but the main focus is lupus. Yeah, I've started this page fairly recently, kind of as well alongside a documentary that I have worked on with the BBC in England. Um, kind of highlighting that you can still live a really full life with lupus and just getting this diagnosis doesn't stop you or Hindu in any way. You can still live a really full, joyful, active life with it. It's just about learning how to live with it.

SPEAKER_01 0:54

Yeah, that's kind of the same thing for me. So you said you were diagnosed at 17, is that right? Yeah. Okay. So what were your first like symptoms? How did you start to realise that you may have lupus?

SPEAKER_00 1:07

So for me, I was getting, it felt like cramp, but for like 12 hours at a time, like most evenings, which is obviously not normal. So I kept going to the doctors and they said, You've just got growing pains, but I stopped growing when I was like 14. And they kept saying, because you're so tall, I'm like five foot ten. They're like, No, it's growing pains. And I was like, no, something's wrong. So I just kept going back and going back. And then luckily a locum doctor, um, I know the healthcare system's different in America, but that just means a different doctor was on duty that day, um, said, Let's just test you for autoimmune because some other things you said, you know, like you don't suffer well in the sun, um, you've got a bit of a rash on your face, all these things kind of hint towards something else. So they took my blood and then diagnosed me with lupus. And at that point, all my markers were like sky high. I had every single blood thing and every extra thing that goes along with lupus, which I'm sure you're aware of too. And yeah, every single symptom of it. So yeah, I've never been able to go in the sun. I've always come out with some sort of rash, migraines, like everything I've been under different doctors for, but no one had really seen it holistically and told me this could all be linked as one thing. So that's how I got my diagnosis, which is quite early, I think, compared to a lot of people.

SPEAKER_01 2:22

Yeah, that is really early. I was diagnosed when I was 16, so honestly, like three weeks before my 17th birthday, so almost the same age, but I got put in the hospital with a kidney stone, actually, and they had taken my blood, and all of my markers were like sky high, crazy. They thought like I was gonna have to be helicoptered up north to another hospital, and they didn't know what was wrong. And they tested me and they sent me to a hematologist first, so blood doctor, and then eventually we went to the rheumatologist in Boston, and he figured out that it was actually lupus. And I had all of the markers, I'm sure you did too. Like I have really, really bad photosensitivity. I get really, really tired and sick in the sun. So that's like I think kind of the worst part. But how what has been like your strategy to managing it? Do you are you on medications? Do you use your diet?

SPEAKER_00 3:21

Yeah, all of it. So I'm on medication. I'm currently on mycophenylate, and that's since so I've tried every single lupus drug that's available in the UK. So that's medications such as hydroxychloroquine and methotrexate and the biologics. Um, so that's like chemotherapy drugs like Rituximab and Bolimimab. But I've had some sort of reaction to every single one of those, or they've just stopped working at some point. So then I had lupus necritis at one point, so that was when my kidneys were evolved, and mycophenylate they normally give to you when you've had like a organ transplant, so but it's also a lupus drug. So they gave me that. And touch wood since then, for the past few years, my lupus has been really controlled. I've been really good on it. Then I've just been on that one drug. I've had steroid infusions and I've had other infusions as and when I've needed them, but that's the only drug I'm on.

SPEAKER_01 4:15

Yeah, that's really good that you found one that works. I'm on hydroxychloroquine, actually. I've been on it since I was diagnosed, but I also have rheumatoid arthritis, so I'm on edidolac as well to help with that. But I also have done the steroid and the infusions, which I'm sure you can agree with, are not fun at all.

SPEAKER_00 4:35

No.

SPEAKER_01 4:36

What?

SPEAKER_00 4:36

They're maybe not the long enough.

SPEAKER_01 4:39

Do you how what's like your biggest thing that you do to manage your symptoms? Is it just like having a routine? I know like for me, I have to be really strict about going to bed at the same time and you know, making sure I'm eating really, really clean and an anti-inflammatory diet. But do you do anything else that you've found really helpful?

SPEAKER_00 4:58

Yeah, I'm the exact same. That's such a big one. The anti-inflammatory diet, like minimal processed foods, um, getting your sleep. I'm not as good at going to sleep at the exact same time every night, but I make sure that it's like eight hours. So wherever I go to sleep, I make sure I try and get eight hours. Staying active is a huge one for me. And I know I find a lot of people with lupus, and I'm speaking to a lot more people now in the Instagram community, are finding it really hard to get active or stay active with it. But what I really can say is when I have even a day or a day or two off of exercising, or just moving my body, my joints hurt more, I feel more tired, I feel more lethargic, my fatigue kicks in because I feel like the movement is like the biggest thing for me in terms of helping my energy, helping my joint pain, helping my inflammation. And that might just be for me, and me, and you know, everyone has to find a way to do it, but it's really about low-impact movement. So walking, Pilates, yoga, swimming, that type of thing.

SPEAKER_01 6:02

I that's crazy. I do most of the same things. I'm super active. I was an athlete my entire life. So when I was diagnosed, I was going into college to actually play sports in college, and they were like, no, you can't, like your your blood is too risky. If you get hit, you're gonna internally bleed. So there was that whole big scare going into it. But I've continued to be really active, and I also find that if I take a few days off, I feel worse than if I just push through every day. But I think I don't know if you feel this too, but it almost feels like you move through jello sometimes. Like that's how my joint pain is. It's like you're moving through jello and you just are working so hard to go like not very far. Yeah. It's the weirdest feeling.

SPEAKER_00 6:48

Such a good way of putting it, especially when you're like so used to being active. I've always been so active and sporty, and I was the exact same. I was like competing in sports when I got diagnosed, and then all of a sudden, like, you can't do this, you shouldn't do this, and it's takes a huge part of you away. And then I've probably like yourself, you've gradually got back into different forms of exercise that your body can cope with. But I need to move every day, not just physically but mentally. But some days our bodies just can't, like you say, like feels like you're moving through jello, you physically just cannot do anything. Or mine feel like even on good days, it feels like my joints are on fire. Like when people ask what inflammation feels like, and that it literally feels like they're burning, and when you sit with it, that's what it feels like. Um, and trying to get that through to people sometimes is is difficult.

SPEAKER_01 7:40

No, I agree. I think the hardest thing about awareness, at least where I am, is that I often get told that I don't look sick, like I don't look like there's anything wrong with me when I'm walking down the street. Like I work a full-time job, I am active, I try to be involved in my community. People are like, well, if you're just standing here right now, what do you feel like? And I say, like, I feel like I'm encased in jello. Or I actually say, like, it feels like my joints are on fire. I actually was flaring up this weekend because we had a heat wave and it was like 95 to 105 degrees Fahrenheit here. So it was really, really hot, and my whole body just swelled up. Like I you couldn't even see my ankle bones. And people were just like, wait, so what is like lupus? Really, like, why are you still in bed on 4th of July? And I'm like, well, I actually am in a lot of pain and really hurt. So I don't know if that's how it is for you too. Like, people just don't really see you as having something going on behind the scenes.

SPEAKER_00 8:43

Yeah, no, the exact same. I think partially because it's mostly an invisible illness, apart from when I get the a really bad flair and the rash is really bad, or like I've lost all my hair before and have to wear a wig, like they were my worst things where you could physically see it, but I always like to as well. Part of it is me presenting in such a way that makes me feel better, like physically and mentally. So it's part of like not letting people in of how bad I'm feeling. Like that to me makes me feel better, if you know, looking better. And I guess because you're a pageant girl as well, a lot of that feeds into it, and I guess a lot of lupus impacts you physically, so I can't imagine how that makes you feel. But sometimes it is frustrating when people go, but you don't look sick. And it's like, well, if you could just if you could swap bodies for a day, you'd feel how we feel every day. Like it's taken a lot for us to present as not sick. It's like must in a way, I feel.

SPEAKER_01 9:43

I feel like it's almost for me, and I don't know for you too, but I find it on some days when I'm having like a quote unquote good day, because I say good day and people are like, oh, so that means you're all better. I'm like, no, I'm not all better. It's just for these 24 hours, my body has decided to kind of cooperate with me. But people will say to me, like, Amy, why do you just look so tired? Like you're so tired, or you know, and then it starts to drain on me mentally that I am fighting this thing so hard behind the scenes that but people always seem to fight against me, like try to almost not not even not agree, but just say, like, oh, dismiss it. Like, oh, you're fine. You must be fine while you're here. And I think that's the hardest thing mentally for me is that it is so invisible and it's really not well known about here.

SPEAKER_00 10:39

Yeah, it it's the same, it's the same here as well, and or people just not realizing how much it takes for you to go to these certain types of events and things, and they assume because you're there you're fine and you're good, or because you haven't flared in a while that you're better, not knowing that we've got this for life. It's incurable for now.

SPEAKER_01 10:58

For now.

SPEAKER_00 10:59

And even just the mental impact that you just touched on, the mental impact of it, or people saying things like that. The mental impact of sitting with an incurable lifelong disease is so tough, and I don't think anyone realises that, or I don't know how that feels for you, but when I live most of my life trying to not pretend that I don't have it, but trying to live such a full life that it doesn't, it's not like clouding over me like it used to anymore. It's like it's part of me, but I have a much fuller life. But the sometimes, you know, when it hits and you have your bad days, it's like can hit you really bad of like, oh wow, I've got this huge thing, but no one really understands it. And I think that's why things like your online community, this podcast, the Instagram page is where people with it, we can all chat to each other about it and be like, Whoa, this is heavy, but we've all got each other. Um we're gonna be fine.

SPEAKER_01 11:53

I agree. I mean, I was super happy that we were able to connect just from Instagram, but I agree, it is really heavy sometimes thinking about like I was diagnosed when I'm s when I was 16, so the majority of my life is going to be with lupus. And when I was first diagnosed, it was really heavy on me mentally that there was no real end point for me. There's no there's no end in sight when you're diagnosed. You're told that it's for life and that there's management options, but you'll never be cured. And you know, when you're 17, 16 years old hearing that, you're still like, oh my goodness, I'm gonna go to college. Like, how am I gonna have this full life? But then learning how to, like you touched on, like live with it and it's always gonna be like a part of us, but it isn't gonna be what controls us as much as like for me, it used to. Like I used to feel like every day I was being controlled by it, and now I feel more in control of what I'm doing.

SPEAKER_00 12:52

Yeah, I think that's yeah, absolutely nails it. And maybe the same for you. Like on my Instagram, I get a lot of people messaging who have just been newly diagnosed or in the first few months or year, and feel the exact same as me and you will have done, where it's so overwhelming. You can have this huge mental shift in your life, and doctors tell you things like they told me I shouldn't go to uni or get a corporate job, which then spurred me on to do it want to do it more, and you feel like it's controlling you. But I think the most important thing through these communities and things like this is showing that you can control it, but it's like a huge combination of you looking after yourself, you working with your doctors, finding the right medication, and like they all have to work together. Like you can't just rely on you know one tablet to fix you, you can't just rely on you doing some small habits every day, like it all has to work together, which is what I'm trying to show. Like online, because there's certain points where I just rely on one. And I've you know I've had 15 years of practice now where I feel like I'm in a good balance of you know, getting them all to work together.

SPEAKER_01 14:03

I think it's really important to have like the balance, but it's also it's a team behind you. I mean, you have to find like the right doctors that are really gonna listen to you because it is such an invisible thing. I feel like a lot of the time I hear about people being dismissed of their with their symptoms because they're like, oh, for me it was also the growing pains. I was always in so much pain growing up. And my mom would tell the pediatrician that I was always in so much pain, I would be up crying all night saying that my knees and ankles were on fire. And they just told me that it was growing pains. And then looking back on it, that was lupus in my childhood, years and years and years before it was ever diagnosed. And I think that's really hard for people too. But having the right team behind you that's really supporting you and taking it holistically is so important. I know I've really tried to be holistic with my health and, you know, try different things like exercise, diet, sleeping. But I don't know about you. I really, really struggle with thermal regulation. My body temperature like is up and down all the time. I feel like even when it's really hot out, I could be like shivering and freezing. And if it's really cold out, I could be sweating and super hot. But people don't believe me when I say that. So maybe you've had experience with that.

SPEAKER_00 15:24

No, I'm I'm the same, and it's so weird, and you can't guess for it, and it may it makes getting dressed for stuff really weird. And our medication doesn't help it either. And I'm also on an SSRI, which doesn't help the heat situation either. Um it's weird. I think one of the things with lupus is it's stuff like that that you don't even think about. They have like the big symptoms that they talk about, but it's the stuff like that which literally impacts you every day, which doesn't sound maybe that big or mental, but when you're trying to live with that, it's so crazy. Like, yeah, I can be on a beach absolutely shivering, needing a jumper, which happens all the time, or it can be winter and I'm there absolutely sweating through jumpers, and there's and because we have circulation problems, I have rain odds as well, which I don't know if you have.

SPEAKER_01 16:12

I do as well. I have rain odds, yep.

SPEAKER_00 16:14

Yeah, and I have to have monthly infusions for that because then I got the chill blanks, and at one point they're like, if this gets worse, you might have to have some amputations, and I was like, what the hell? Like, this is just crazy. Yeah. Um yeah, and there's stuff like that where unless you go on extreme medication, like the IV and infusions that I have once a month, or I was having this other medication which dropped my blood pressure so low that I was passing out, then they're just like, Oh, you just kind of have to to kind of deal with the hot cold situation. And it's really showing that your body's just not okay.

SPEAKER_01 16:49

Yeah, no, the hot cold for me is so bad. But another thing that I experience is brain fog. I can be standing on a stage at a pageant and completely lose my train of thought, no clue where it went, it just left and it doesn't come back. I could just be like in the middle of a sentence and just stop talking, and I just don't remember anything like I used to. And before I was diagnosed, I was like quick as a whip. Like my memory was so great, and now I start to like get slower and like struggle more with finding the right words, and especially in the heat as well. But that's been really, really hard.

SPEAKER_00 17:30

Yeah, that that is a difficult one. I feel like my mine comes in phases as well with that. Like when I can tell my lupus is because, as well, what's important as well is you can have like more flared periods without having a full-on flare. And I think once you know your body well, you know when you're entering kind of a flare up and you can settle it back down. Like when I know I'm tired, you know, too busy, haven't eaten as well or haven't moved as much, I know that my body's gonna start flaring and giving me signs. You know, one of them is my brain stops working as fast. I can't control my temperature as much. All those things start happening, my body systems start to shut down, like things like that. So I think that's where it's like keep on top of your daily habits, like the food and exercise, to stop all them creeping in for me anyway, which I really want people more people with lupus to understand. Like it's literally not just about taking a drug and then trying to live a normal life. It's we have to change our lives to help ourselves to feel normal.

SPEAKER_01 18:31

Yes.

SPEAKER_00 18:32

If that makes sense.

SPEAKER_01 18:33

Yeah, I love the way you put that. That's exactly how I would put it. It's at first I feel like it goes back to feeling like controlled by it, but then you're working to almost instead of trying to work against it, like work with your body so that you feel better and can be normal. And it's not just like this heavy weight as much. But I think it's really, really hard when younger people get diagnosed too, because you see statistics and the average age, at least in America, for diagnosis is 32. And, you know, I was diagnosed at 16. I didn't have like a community of people to talk to. Everyone that, you know, they were like, oh, my my grandma has lupus. I'm like, okay, it's not really the same of what I'm living with. But you know, it's not just a take a pill in the morning and feel better. You you're right. It really is a whole routine, lifelong routine of living with it. And it really was you so you have what else? You have fibromyalgia, right?

SPEAKER_00 19:35

Yeah. So I got diagnosed with two years later.

SPEAKER_01 19:38

Yeah. Okay. So that came after. Because my other di my other diagnosis came after too, like as part of lupus. So I didn't know if that was kind of what happened for you too.

SPEAKER_00 19:50

No, that wasn't part of it. I've got quite a few things to do with lupus, which I know is quite common. But then I've also got like haemophilia and like a heart condition. So I've got quite a few other health conditions which aren't actually related to lupus, but it makes managing lupus more difficult because and that's something which most people don't appreciate, like, because lupus literally impacts your entire body. Like it's our own immune system and blood attacking every cell in our body, like every organ, like everything. Whenever we get even the silliest things, like you can't even go for a massage without someone being like, if you tick lupus or something, they have to speak to you about it because it impacts us so much, our body so much that they have to speak to you about it. So if I go to any other hospital appointment, it's oh well, we need to speak to lupus doctors before this, or if we change this medication, you have to do this. Like I can't stress, like, even any single risk of us having an infection, right? With our body, we have to go straight on antibiotics. That's so dangerous for our body. Like, I'm going on a bit of a tangent now, but just to stress, like any other diagnosis or anything else that we get, just having lupus makes everything so much more complicated for us and doctors to manage. Yeah, I love how you tend to say that you have to do more diagnoses, so it's like this whole spiral of things to manage, and that in itself can be overwhelming.

SPEAKER_01 21:24

Yeah, I think it is overwhelming. At least it was for me. I got diagnosed with rheumatoid arthritis two ye two years after my original like lupus diagnosis, and then a year after that I was diagnosed with chogrin's, which it like shuts down your salivary glands. So I have a really hard time breathing. Which is why I had to stop running in college because I was coughing up blood because my my throat was so dry in my lungs that it would just like just start bleeding.

SPEAKER_00 21:54

That sounds horrific.

SPEAKER_01 21:56

So that was like the hardest one for me, but those We're all directly from the original lupus diagnosis, literally attacking everything. And I think it's so important for us to talk about that fact that autoimmune, it is your entire body. It's not like, oh, I have a broken bone or oh, I have, you know, one thing on my ankle. It's everything inside of you, your blood, your organs, your tissues, your hair. I also had my hair fall out senior year, and it was really, really hard. So I totally get that one too. But it's just so important to speak up more about it, I think.

SPEAKER_00 22:35

That's it crazy. You had all of that by 18.

SPEAKER_01 22:38

Yeah.

SPEAKER_00 22:40

It's a lot, and to still go to uni. Like, yeah, I I got diagnosed 17 and then had my worst ever flair, almost died, then lost my hair, had a wig, and then started uni. So I was on all these medications, had to inject myself, had a wig, and then still went to uni. And I don't think I recognised until after how much that impacted me. I mean it did. I was I was severely d depressed. I couldn't really eat properly, function properly, anything. I just had I just kept going. And looking back, you just this is why I was so passionate about starting this girl's guide, because no one is out there to help young girls with this. Like you're just kind of thrown into this world. Like I can't imagine you at 18 having had all of that, just like three things after the other, and then being told go off to college, but you can't run and you can't do this, and your whole life's different now. And probably friends don't understand it as well because they're young as well.

SPEAKER_01 23:45

Oh, they did not understand it all. I went to I went to college 45 minutes from my hometown, and I would have to come home every single Sunday night to get my blood done on Monday to m at 6 a.m. to make it back to class for 8 a.m. And people are like, why are you so tired? Why are you always going home? Why are you like, why do you carry around a bunch of medications? And it was really hard. I was also really depressed and had a really, really hard time getting through that first year or two of just feeling alone. That's why I love your page so much. Because I feel like people now have a space to feel together and not feel lonely. Because the loneliness for me, it was that's what really was the hardest part was the loneliness.

SPEAKER_00 24:33

That's so nice to say about the page. That's what I was hoping to do with it because I think that's yeah, I'm so sad to hear that's how you felt, and it's how I felt too. And I think you feel isolated, so then I isolated myself more. Like I got diagnosed in sixth form. I'm not sure what the equivalent is for you, but that was just like the two years before we go to university here. I just completely isolated myself. I was like, no one's gonna understand, we're all too young, I feel unwell. Um, and then I did the same at uni and also spent most of uni in hospital, um, having blood tests, going home, my mum having to be down at uni with me. I was so ill. Um so it was just like I didn't have time or the energy to make friends or socialise properly or have a uni life, and yeah, obviously the doctors aren't gonna understand that or want to understand it because it's their job just to sort your medication and stuff out. So it's like, okay, where's this other place that's gonna help then? And that's what I think we're now doing online and all these other pages are, which is really nice.

SPEAKER_01 25:43

Yeah, it is really nice. What I wanted to talk to you too about your documentary with BBC. So, how did that come about?

SPEAKER_00 25:53

Yeah, so that was quite wild. Um, so it was about two weeks before we filmed it, they my doctors rang me and said, Would we've been approached by a pharmaceutical company who are launching a new drug, and when they do this, they put loads of money into that community. Um, and they've approached us because the hospital I go to is like a teaching hospital, and they have they do a lot of research there, and they need a patient to film. And they said, We've all voted for you because you're a patient who's like been through it all, like gone through everything you can with lupus and all the medications and stuff, but also have got yourself to a point where you're so well and healthy and look after yourself. So we thought you'd be a good example. So I was like, Yeah, that sounds amazing, thinking I'd have a few months to prep and everything. The next day the BBC ring me with like all these different producers and directors on the call, and they send me this massive script, and we're like, Yeah, we're filming in like nine days. Oh my goodness. So it was very full-on, but it was an amazing experience. But I think maybe the most interesting part was the script when they sent me it was like girl struggles to get off bed and can't pick up a glass of water and things. So my immediate comments to the group of people who wrote it were, yeah, that's probably a very accurate description of a lot of people with this disease, but that's not me. I've worked really hard and I work really hard every day to not be that ill on a daily basis. And they were like, Oh no, right, let's flip the script essentially. So I then got to work really closely with them. And they said, What helps you every day essentially like manage your lupus? So we worked together showing that. So we started the day off doing wild swimming and sauna and yoga, which is things I do regularly. We filmed me and my friend, we filmed me and my parents, we filmed me at the hospital, like we showed me at a gig, like we showed them doing just my normal life and how I actually function and manage my lupus rather than just showing someone that was really ill. And it was really important for me and them to show someone who has a full life and can manage it. And despite you know the downsides of it, you can manage it and kind of give some hope to people out there. Yeah. And saying what I'd tell a younger person who get gets diagnosed with it, I think you'll be c you'll be so okay.

SPEAKER_01 28:25

Yeah. I love that. I'm really glad that you were able to work with them too and have it accurately show you because I also get that people are like, oh, so you can't like pick up a glass of water, like things like that that I'm sure are very stereotypical, but for me, like like yourself, like that's not me at all. And I also like work very hard to not be like that. So I think it's really great for people to see that people like us can live full and healthy lives, as healthy as we can be, and despite everything going on. Yeah. Well, I think that hit 30 minutes. That's awesome. Do you have any final words you want to leave the audience with?

SPEAKER_00 29:06

No, I just think I think the biggest thing and what people are messaging about most is that they're so scared and overwhelmed when they get the diagnosis, which both me and you have said. And I think the biggest thing for me is, and I think the biggest video that people have resonated with on my page is the mindset thing of, and I never want this to come across harsh, but similar with most things of we've been dealt this hand, which is lupus. So rather than kind of we have a choice, right? To either wallow in it and let it completely control us, or we can take charge of it and control it and have like this is like really full and healthy life around it. And like me and you are proof of that. There's so many people proof of that, and I just think it really you can make it not that simple, but you really can flip the script on it, and you really, really can have this big and beautiful life around it. Like you just have to work with it.

SPEAKER_01 30:04

Well, thank you so much for coming on. I really, really appreciate it. It was so great to talk with someone who has been through such a similar experience and also is battling this.