I know the doctors probably, for them, it’s a job. You know? You’re a statistic, a number. You’re fascinating because you’re atypical, or you, you know? But for you as the patient, it’s life changing. You know, so? I don’t know. That’s why it’s… As a doctor, I think they should find a way to actually give people what they need?

And sometimes, sometimes they do, I remember going to the vasculitis clinic one day and I was really, you know, really sad and I think my consultant felt that, and he hugged me. You know? So, some, sometimes they sense that, sometimes they do. And also, it’s very, very hard, you know, as a patient, you need to come prepared, you need to make notes, what I want to ask, what I want to do, what I want to… Because when you get there and you’re in the waiting room and you look at the people around you and you’re like, “Oh, I’m here again.” And everything turns blank, you don’t know what you want to do, what you can’t get yourself together to, you know. 

So, I literally make notes of how I feel of symptoms, and I go there with a booklet. This happened on this day, this happened on this day, this, “What do you think?” So maybe it’s silly, but I think it’s the only way to do it because… And it’s the only way to record, you know, your symptoms and what you’re feeling and what you… That’s, again, that is not easy to do but you have to, and if you do that, you kind of work together with the doctor, and at the end of the day it helps you. So, I think it’s important.

And then you have your friends and your family, I remember my mum asking me for a long time, “And now you’re fine, yeah? Now you’re fine.” She doesn’t seem to grasp the concept that, yeah, I’m fine, but this is a long-life condition. So that doesn’t mean that next time when I come to, to visit you guys, I’m not, when I went for the holidays in 2019, in December, I was at home, resting, for four or five days? 

And everybody was like, “Okay, why do you need to?” Yeah, I need to rest, I need to… So, I don’t have the same stamina to actually go out and meet people and do this, and, so that, that is gone. And there, and people see you, talk to you, you look fine, you’re healthy, why, what’s the problem? So that, that’s the only thing. And you, you tend to lose friends on this, but you know, not everybody, you can’t… It’s difficult to maintain a friendship in this thing. And you have to remind people about your condition, like for example, I had a, for my birthday, for Facebook, you know, I’ve asked people to donate for a charity sponsoring vasculitis. And I gave like the background, I was like, you know, “My kidneys are not working well,” and I had a lot of people saying, “Oh, but what’s wrong with your kidneys?” “You know, from last year.” “Oh, yeah, but I knew you have vasculitis, what’s wrong with your…?” So, people don’t remember and don’t, “Yeah, but that was last year, now they’re not better?” “No, they’re not.” “Ah.” 

So, there’s not a lot of knowledge and there’s not a lot of, how to say, when you explain to someone about this, I don’t think they understand, I don’t think… I don’t know. And when they see you and they, when they talk to you and you look fine and you, you know, they were like, “Ah, yeah, everybody’s tired,” you know? So, everybody has that, everybody. So, you know, you can’t, and you need to explain to them that your level of energy is not like their level of energy. 

And it’s, for example, now we want to have a baby. And I can’t tolerate azathioprine – I can’t pronounce that, sorry [laughs]. Anyway, I can’t tolerate the medicine that is safe for pregnancy, and they said that the safer option would be rituximab. There’s not a lot of studies. I found one, I tried reading it, I gave up pretty fast. I actually asked around and I had some four ladies answering and they said, one of them said, “Yeah, for me it was okay, I did the rituximab before trying to get pregnant, then from the pregnancy it wasn’t needed.” So, it was fine. Another person said, “Yeah, I did rituximab, I got pregnant, but I needed it when I was in my seventh month of pregnancy. And my, as a result, the baby was born with less white blood cells.” But this is something that, in time, it wasn’t a health issue, so it’s something that he developed, so things, the baby was normal overall, so the result was positive. Out of those four people, four positive results. So that’s the thing, you know? But there is no guarantee, there is no medical research, there is no, because, again, it’s something new, it’s something, you know, again, trial and error, you don’t know [laughs]. That’s the thing.

Oh, I also want to mention one thing. I remember asking, so before being discharged and having a chat with that lady that was checking, you know, if my mental faculties are fine, I remember asking her, “But look, I don’t remember, you know? I don’t remember what happened, I don’t remember, you know, I’m…” And I really remember, and I really liked what she said, she was like, you know, “Your, your body was in such a distress that he actually had to fight for its life, and probably he didn’t deem necessary to make memories, so all the resources focused on something else.” That, I don’t know, that line really helped me a lot because I was like, “Okay, that’s enough, I don’t need to know what happened.” You know what I mean? Because you don’t… If I read the transcript of like our medical records, like my medical records, if I read all of that and, you know, what happened and what I went through, and I, it’s disturbing for me, and I, because first of all, I don’t remember, and what you read over there, it’s unthinkable. And I choose not to, you know? So, I think, like, maybe there’s a reason, maybe I’m not supposed to remember that, that’s it. You know, it’s, in a sense, it’s better I don’t remember. 

The downside is that my husband was there through all that experience and that created the trauma for him, which is, you know, I don’t know. Hopefully, slowly, slowly. But that, that created pretty much a trauma for him, and I don’t know, it’s… That’s why you can say that this illness affects everyone around you, especially your loved ones. So, it’s terrible in this way.

Apparently, they took me into ICU, [sighs] according to him, my, that night, the first night there, my heart stopped twice. It was very, so those days, I can see them through his perspective, through what he remembers. And he even, like, when we go there, he even has people, you know? So once, I remember we were walking down those corridors and he stopped, a short gentleman, he was like, “Look, there she is, you know, she’s alive, she’s walking in front of you.” [looks confused and laughs] And I don’t, I don’t remember that person. Apparently, that was the person that was with me in ICU. In ICU they’re very, it’s like, one nurse, one patient, they’re very organised like that.

[Sighs] What I remember from ICU is, I think after I woke up, I saw my mother. I remember I was thirsty, initially they didn’t want to give me water, they just put some bit of water on a sponge, and they did like this on my lips [gestures]. I remember having an oxygen mask on my face and they were saying, like, “You should sleep,” and I was like, “I can’t sleep because it’s too cold too in this oxygen mask.” A lot of things going on, a lot of movement, but I couldn’t see a lot. I could just hear.

Anyway, after I think two nights I remember sleeping there, I moved to a different, to a different ward and things were different. There was a lot of, so after, after they… Apparently, I also got dialysis when I was in ICU, according to my husband. I don’t remember. I had some in here, [points to neck] I had some wires, some, I don’t know, I think they… Who knows what they did during that time, but here, like, I had three or four things? That was again, really weird when I actually realised. I didn’t know but at some point, I actually realised that there’s [points to neck].

Again, there was a very nice – I like metaphors in general, and there was a very nice metaphor. There was one person who is saying, you know the theory of spoons, imagine that your energy is a number of spoons, yeah? So, I only have ten spoons, yeah? Each day. Now, I, if I use all of those ten spoons, and people, some people might use all of those ten spoons by just taking a shower, or by just cooking something, or by just taking a short walk. If I borrow a spoon from tomorrow and I use 11 spoons on the day, then I’m going to have two days with three spoons each day. So, my, I need to make sure I sit in those ten spoons, I need to make sure I don’t push myself because if I use more than those ten spoons… If you, a healthy person, if he uses more than ten spoons, he’ll be fine, you know? The next day he’s going to be on nine spoons, he’ll be fine with nine. But a sick person, no. 

So that’s the thing they don’t understand, and they don’t… It’s, until you live it, I think it’s very, very hard to… And at the same time is very scary to… When I came home, like, not being able to cook, you know? I cut the vegetables and that’s it, I need to sit down. And sometimes I just sit down, lay down and I fall asleep. In the middle of the day. That was after, in 2019, when I just got out of hospital. So, it’s, it’s frustrating, it’s really, really frustrating in this perspective [sighs]. But hey, you know? Yeah. That’s, I don’t know, that’s pretty much it [laughs].

Okay. Now, I understand that, so they didn’t say why or, they didn’t say much, they said, “This, we need to do this, we need to…” A lot of people with a lot of forms, you know, this procedure could be, “We need to do this because what you have is life-threatening and we have to move it.” I was like really not aware of what’s happening, and they were coming and explaining things and, you know, wanting me to agree. I was like, “Okay, you can do whatever you know best, I can’t, I don’t have the, I can’t process all of this right now, so whatever you guys think is best, just go ahead and do it.”

Okay. They done that. So, what happened, they started with the plasma transfer. Now, my vascath here [points to right groin] sustained the first plasma transfer, [sighs] but the second one, I remember the nurse complaining that, you know, this, something that, it’s blocked here, it’s not working. It went through but with, you know, “Let’s stop, wait a while,” so it was very hard to actually do it. What happened, meanwhile, a blood clot formed [points to right groin area] here.

And the, the nurses insisted, like, “Look, we can’t carry on using this vascath. So that, it’s not possible.” And they also want me to do more plasma transfer, so we are moving forward, we are pushing to do this. “So, let’s change it, let’s put the vascath in the other leg.” Okay. Now, I understood that the main concern and their main concern was to avoid bleeding, right, in the situation. Nobody thought of clotting. So, I was a bit atypical, and I developed a clot that went to my lungs, and then it went to my heart.

And [sighs] in all that, in, I don’t know. I just remember that they also give me, they were giving me a blood transfusion. I was very upset that they weren’t telling us anything that, you know, we didn’t know what’s happening and we didn’t… And I’ve asked my husband to, I want, I said, “I want apples, bring me apples,” and he went to buy apples. And then I woke up and I saw my mother’s face? So, I missed three? Two, three days, something like that? Apparently, he came back and I wasn’t breathing? So ,what happened, that blood clot went to my lungs and to my heart. It was very terrible because he found me not breathing, so he was there through all of that experience which kind of was a very traumatising and shocking event for him to go through.

You mentioned somebody else’s metaphor for vasculitis. Do you have any of your own?

[Sighs] Any of my own? I don’t know. I don’t think I have any of my own regarding vasculitis. It’s just…I don’t know. I, metaphors make things easy for me, you know, and they make, they make me understand things, that’s why. [Sighs] I don’t know, has, as a metaphor in like having vasculitis is like being in prison. You know, you have to find a way to cope with that environment. Right, you’re going to live in that environment for a while and you might, I don’t know, you might get the good behaviour and be moved to a better cell with more benefits. You might go to an open prison and things might get better. So even in the prison, there is room for improvement. It’s the same with this illness, you know? Yes, it is what it is, this is the environment, you need to, you’re going to wake up every morning, regardless. What you make of that day, you know, it’s up to you. So yeah, you have hard times, you know, when, like in prison, you’re in solitary confinement, yeah you have those as well, yeah. But you also, I told you, have good times. When you have privilege, you get a TV, you get your own room [laughs]. At some point you might go for an open prison, right? You might get outside, go out for a job.

So, there’s always room for improvement, but this is it, this is the environment you’re in from, you know? It doesn’t matter how you got there, that’s not important. You need to focus on what to do – the ‘why’ in life is not important, the ‘what now’ is important. That’s the only, if you, if you stick to the ‘why’, that’s not going to help you, you know. You can, of course, you’re going to have times when you’re going to be like, “Why did this happen to me?” That’s not, that’s not relevant at this, at this point. What is relevant is what now, what I’m going to do next. That’s how I see things, that’s how.