Ashanti Daniel talks ME, hereditary angioedema, asthma, paraneoplastic syndrome, autoimmune autonomic neuropathy, myasthenia gravis and mast cell activation syndrome.
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
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Today I’m talking to Ashanti Daniel about ME and hereditary angioedema and asthma and paraneoplastic syndrome and autoimmune autonomic neuropathy and myasthenia gravis and mast cell activation syndrome. Comorbidities are complicated, as I’m sure you all know. Ashanti also worked as a nurse before getting sick, and so she is able to tell her entire story with that additional medical lens.
Before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
Brianne: And so to start, I just like to ask people, how was your health as a kid?
Ashanti: So I was a healthy child. I did develop asthma at age 10, but other than that, I was a healthy child.
Brianne: Okay. Yeah. And that’s something that a lot of kids have. A lot of kids live with an asthma or manage asthma. Okay, so not much else in the background. So then was there a specific moment for you when things started to change, or did it happen gradually?
Ashanti: No. For me, it was like getting hit by a train. I got sick and never got well. It was in August, 2016 while I was a registered nurse working in the neonatal intensive care unit. I became ill ,and I initially presented with respiratory symptoms and due to my history of asthma, everyone just assumed, “Oh, hey, this is a severe asthma attack.” I would, if I was talking to medical people, I would say exacerbation, but people who are not in the medical field will be listening. I want them to understand what I’m saying. So they are saying, “Well, this is just a severe asthma attack,” and they treated me accordingly, based on what the protocol would be for that. The interesting part is there were a couple of symptoms that I had at that time that were not consistent with just an asthma attack. And at that point I was working out five days a week. I was extremely fit. I mean, to the point that I looked like a trainer, people would ask me if I was a trainer. I ate healthy, I always ate healthy. I’ve never been drunk in my life. So I was living a really healthy lifestyle, so it didn’t make sense. And my asthma was very well controlled. I was only using my inhaler before workouts, but other than that, I didn’t need it. I was fine. So it didn’t make sense that I could become so sick out of the blue with my asthma.
Ashanti: However… and again, like I said, I had some additional symptoms. I can’t remember, to be very honest because that’s the way chronic illness works. I can’t remember all of the additional symptoms I had, however…
Brianne: Yeah or the order.
Ashanti: Right. Yeah. I don’t know. I do know that I had a hoarse voice. I do know that I had fatigue. And I’m not sure at what point the muscle weakness began, but it was earlier on. But those are all symptoms that never came with an asthma attack in my whole history of asthma. Another part that I may have already said during this talk, but I had not been hospitalized for asthma in 20 years, so that’s another thing.
Brianne: So since the first time… when it first presented?
Ashanti: No, it had been since… the last time I was hospitalized I think was five years into the asthma.
Brianne: Okay, but definitely well into your history at that point?
Ashanti: Oh yeah. That’s a long time… so literally, I hadn’t been hospitalized in 20 years. That’s… I mean, I got sick in August. It would have been… December would have been 20 years of no asthmatic-related hospitalization. So literally four months away. So I just say 20 years because that’s…
Brianne: Yeah, that’s fair.
Ashanti: So anyway, I ended up admitted overnight. They were treating me, like I said, like a severe asthma attack. I was discharged the next day and went home for a few days. Was not getting better despite multiple medications. I mean, steroids. They had me on breathing treatments at home around the clock because I do have what’s called a nebulizer machine at home, which is similar to what they use at the hospital or urgent care or whatever. So I have my own. So I have my own meds to go in there. I was doing those around the clock. I was on steroids. I was even on antibiotics because some pulmonologists feel that even though there was no evidence of pneumonia on my X-Ray, when the asthma is really flaring, sometimes, an antibiotic can help decrease the inflammation in the airway.
Ashanti: So that was the theory. So I was on all of these things. I wasn’t getting better. I returned back to the hospital about… maybe three days after discharge. That’s not an exact quote, but somewhere a few days later. Three or four days later.
Brianne: Not long.
Ashanti: Yeah. Not long and at that point…
Brianne: And for you, did it feel the same as… did it feel like an asthma attack to you? Since you had felt those before, and also had been working in the medical field.
Ashanti: I would say yes and no. Initially, very, very early… I’m like, “Oh my lungs.” But then like I said, the addition of the hoarse voice, the fatigue, and then I think the weakness must have come a little bit later, but by the time I was admitted the second time, I knew right then I’m like, “No, this is not asthma. This is something worse.” And even my best friend who is a nurse like I am, she’s an adult ICU nurse. She agreed. We call each other A-Team because both of our names start with the letter A.
Ashanti: Right? Match made in heaven. So anyway, she was like “A-Team, I don’t think this is your asthma.” I’m like, “It’s not. I know it isn’t.” I just was very in touch with my body at that time, so I’m like, “No, this is something worse. This is something bigger than that.” So we just didn’t know at the time, and then I do have a family history. My dad died of a rare autoimmune condition. He had atypical presentation. It was very aggressive, and he had lung involvement only. So then the next thing you know, I’m like, “Okay, now I need to start trying to advocate for myself.” So I talked to my pulmonologist and I remind him of my dad’s history. So they did go ahead and do a CT scan on my chest while I was admitted. Cause the second time I was admitted for five or six days. So I had already been just for overnight, went home for the few days and then admitted again for five or six days. So during that time they did do a CT scan of my chest to make sure that there wasn’t any evidence that I was sick with the same illness that killed my dad. Which I don’t know if people care to know what that is.
Brianne: Sure. Yeah. If you want to share it,
Ashanti: It’s called dermatomyositis.
Brianne: Okay. And you said it’s an autoimmune condition.
Ashanti: Yes, it is autoimmune. But like I said, in my dad, it had atypical presentation, which means for nonmedical people, unusual presentation. It didn’t present the way the doctors would normally see it. It was very aggressive. Lung involvement only. From the time of his diagnosis to his death, was less than two weeks, and he was actually in the hospital being treated. So anyway, so there was that of course, in the back of my mind.
Brianne: Yeah, of course.
Ashanti: We got the CT, it was fine. So that was a relief. However, there still was this question like, “What’s happening? Why am I not getting better?” All the asthmatic meds and all this stuff they’re giving me, and I’m still having a difficult time. Plus again, my voice is still hoarse. I’m still fatigued, still weak, et cetera. So I was discharged after that, and my pulmonologist was still pretty insistent that this was just a really bad asthma attack that knocked me down and that I just needed a while to recover from it. And that… I thought to myself like, “That would make sense if I was like a senior citizen or if I was… I had some other co-morbidities.” which means other… like diabetes, high blood pressure, heart failure, or some other illnesses.
Brianne: Some other factor.
Ashanti: Right. That would make me be so sick from just an asthma attack, but again, still didn’t make sense with how healthy I was at the time. I was in the best shape of my adult life. I was never really out of shape per se, because I have an athletic body type, but I mean, I was in shape
Brianne: Yeah, and you knew your body.
Ashanti: Yeah. I knew how I felt. I’m like, “No, no, no.” So I did go… not really go along, but I didn’t push to see other specialists for a few months. So this was… that originally started in August, 2016 and then by I think early November, I finally was like to my pulmonologist, “Refer me at least to an allergist.” Cause I’m thinking to myself like, “Maybe there’s something that I’m suddenly allergic to,” because you know, it doesn’t matter how old you are, you can develop sudden allergies that you’ve never had your whole life. I mean, that’s just how it is. So I’m like, “At least let me start there. Let me try to see an allergist, see if there are some foods that I’m suddenly allergic to or some additional environmental allergies.” Cause I’ve had allergies since I was a child, but like, “Maybe there’s something else, and I keep exposing myself to it, which is making me not get well.” My lungs are like “No, thank you.” And whatever.
Brianne: Yeah, maybe that’s the extra thing.
Brianne: And so during those couple of months after your multi-day hospital admission did you go back to work?
Ashanti: No, I never went back to work.
Brianne: Yeah. That sounds like that would’ve been really hard.
Ashanti: Yeah. No. My last night shift as a nurse was August 10th, 2016. That was it. I never was able to return to every, even close to be able to return, which was very devastating for me because nursing is not just a career for me. It’s who I am at my core. My identity. You know, my life’s purpose. So anyway, but yeah, I never returned. So all those months I was just at home, I was seeing my pulmonologist frequently and he just had the same explanation.
Brianne: Like “It’s asthma, keep trying the meds, wait it out,” kind of stuff?
Ashanti: And just like, “You just need time. It just really knocked you down. You just need time.” And he even at one point put me on a really strong antibiotic called doxycycline, which I have heard people have been put on that for Lyme. I might be wrong, but anyway.
Brianne: It’s the first line of treatment for Lyme usually. Yeah.
Ashanti: Well, so I got that, and I’m still sick. So it’s not Lyme. So I did get that, and I was… oof, I hope to never ever have to take that medication again.
Ashanti: My GI, which is my digestive tract, wasn’t that happy with that medication at all. So I was on that for a while, and still I wasn’t better. So finally, I did see the allergist. The allergist was great. He ran a ton of tests, and there were some things that came back abnormal. But no food allergies, which I had never had food allergies anyway, but so there weren’t any sudden food allergies. My environmental allergies were pretty much the same. So that wasn’t the explanation. However, they were the… some of the labs that came back abnormal is a test for a rare, autoimmune illness called hereditary angioedema.
Ashanti: So he wanted to repeat the test because of course, labs can make errors and because it is a rare illness and he’s like, “Well, let me just double check and make sure this is actually the right result.” So he did. And in the interim, while we were waiting for the repeat tests to come back, I ended up admitted in the hospital again. This time, I had what I can best describe as upper digestive tract swelling.
Ashanti: But it’s internal. It’s not something that you could see on the outside. It’s just happening inside. So what it caused was me to be unable to swallow solids.
Ashanti: So I could drink liquids, fine. But anytime I ate solids, it felt like the food was stuck, no matter how much I chewed it, it felt like it was stuck. And it also calls me a tremendous amount of pain while it was going down.
Brianne: Yeah, I bet.
Ashanti: So I stopped eating, and I was just drinking. So I drank a ton of water. I drank a ton of coconut water, for the electrolytes. I was drinking vegetable broth. Those were pretty much it actually. And I managed myself at home like that for a week, which I don’t necessarily recommend.
Ashanti: That’s one of those, “Do not do this at home.”
Brianne: But it’s hard in the middle of it, right? When you don’t have energy, and you just want to be better and you’re like, “Maybe I’ll wait one more day.”
Ashanti: Yes, exactly. That’s exactly. And plus I was tired of being sick. “I don’t want to go to the hospital,” because I know at this point I’m going to have to stay, and they’re going to say I’m dehydrated, I know. I’m going to say, “I don’t want to go and stay. I want to be at home.” I just tried to hope and pray for a miracle, like, “Oh, it’s just gonna be okay, and I’ll be good.” No.
Brianne: That didn’t happen.
Ashanti: Didn’t happen. I ended up admitted, and that time I was admitted for about, I think nine days. I know it was over a week for sure. And I was in the hospital over Thanksgiving, but during that admission, they were running multiple tests and whenever, and then that repeat lab came back the same… that it was still that hereditary angioedema. So they did treat me for that with fresh frozen plasma.
Ashanti: I can’t remember how many doses I got that time. I think just one or two. But anyway, about 24 hours or so later, I did start having some improvement. However, I will say that with the hereditary angioedema, that still did not explain the rest of my symptoms. Like it could explain this swelling-type thing that was happening.
Brianne: Okay. Yeah. Cause what does that does? Or what do they… what do we know about that?
Ashanti: It causes swelling.
Ashanti: Hereditary angioedema causes swelling. So, swelling can happen in any part of your body when you have hereditary angioedema. There are people who experience laryngeal swelling, which of course can be fatal. So that’s an emergency. There are people who experience upper digestive tract swelling, lower digestive tract swelling, and because it causes so much pain, oftentimes patients are taken to surgery to have exploratory abdominal surgery.
Brianne: Just because they don’t know why?
Ashanti: Because doctors don’t know about hereditary angioedema because it’s so rare. It’s, you know.
Ashanti: If you’re not an allergist, pretty much you’ve probably never heard of it. Never seen a patient with it or any of that.
Brianne: Yeah it’s not on the radar.
Ashanti: No, it’s not on the radar. And there are some people who will have swelling on their face, their lips, hands. It literally can happen anywhere. For me though, the swelling was internal, which cannot be seen on the outside of your body. So, that happened. Discharged home. Okay. So that’s a potential diagnosis, but that doesn’t explain everything else that’s going on.
Brianne: Yeah. And everything that had already been going on, you kind of had that issue at the exact right time for it to be caught, but it was not the only thing.
Ashanti: Right. Exactly. So then, so then I started seeing additional specialists. Finally at that point, I got I think maybe my primary doctor onboard. So at this time I had HMO health insurance, so you have to have a referral. So it wasn’t like I could just make appointments, but my primary care doctor was very supportive and has been very supportive throughout. So he started giving me referrals because he knew, at this point, he had been my doctor for 14 years. He had seen me through a bunch of life experiences. He was my doctor when my dad passed away. He had been my doctor through a lot of things that had happened both good and bad. So he knew that I was really sick. He never questioned whether I was ill or anything, which was great and I’m thankful for that. So he did start putting the referrals in cause he’s like, “I want to help you find out what’s going on.” So I saw multiple doctors.
Brianne: That’s awesome cause that part can be really hard.
Ashanti: Right. Especially when you have an HMO if you have a doctor who doesn’t believe you or who isn’t supportive, then you can’t get the referrals and then you can never get answers.
Brianne: Yeah. You’re just trapped.
Ashanti: Yeah. You’re literally trapped because you’re at their mercy. If, you know, if you have PPO, it’s a different story. You can make your own appointments, but HMO is not the same story. So, I saw a neurologist. I saw a rheumatologist. I saw an infectious disease doctor, who was the only doctor in my experience since becoming ill, that did not believe me or that said that my symptoms could be psychosomatic or whatever, you know, caused by, you know…
Brianne: Yeah. However they phrase that idea.
Brianne: So that was a rheumatologist you said?
Ashanti: No, that was an infectious disease specialist.
Brianne: Right, sorry. Yeah infectious disease… okay.
Ashanti: And the irony is that he didn’t even physically examine me. He literally spent five minutes with me, and then ordered some blood work, so this is probably a little off topic, but I just want to say…
Brianne: No, go for it.
Ashanti: Once I requested my records and I saw that he put in there that the explanation for my physical symptoms could be psychosomatic. I sent him an email. A very firm email.
Brianne: Yeah. Strongly worded?
Ashanti: Yeah, a very strongly worded, but professional email and told him about himself and how, you know… how could he draw that conclusion when he literally did not even examine me? Spent five minutes with me just talking to me. He’s never seen me before. He has no history with me. And he agreed. He actually apologized for what he wrote in his consult note, and he edited it out.
Brianne: That is great.
Ashanti: Yeah. So I do appreciate him for that. However, I was very disgusted.
Brianne: Yeah. Well, and that can cause such long-term damage, when something like that is in your notes, because it’s going to be the first impression that any new doctor has from now on. And that’s…
Brianne: Even if the doctor thinks that, which I don’t think that they should, but if they do, you’re like, “Okay, well you’re entitled to your opinion, but as soon as you write it in my chart, that’s my business. That’s not okay.”
Ashanti: Right. And then on top of that, it’s like, “Okay, so I just made up this blood work?” I actually had abnormal labs. I was like, “I’m sorry. That’s not something that you can say.” I can’t tell my brain, “Oh, make my blood be abnormal.” This is ridiculous. I know for some patients with chronic illness, their labs look normal, et cetera, so that is even more challenging, but for me, mine didn’t. So it’s like, “Come on, are you kidding me?”
Ashanti: Okay, good. I guess I’m some superhuman. My brain can tell my blood to have abnormal results… crazy. So anyway, so I continued looking for answers though.
Brianne: Yeah, new doctors.
Ashanti: Right. New doctors. I sawa gastroenterologist, which is a digestive system specialist for people who don’t know. So I had actually seen one in the hospital, when I was in the hospital in November, and continued to see him outpatient, and then I didn’t get any better. But I was determined like, “I need to go back to work. I need my life back.” So at this point, about five months into the illness, I decided to do yoga…. basic yoga. Beginner yoga, and I mean, I had been extremely strong doing high intensity interval training. I wasn’t doing yoga when I was working out before. I was doing like very high intensity… so I’m like, “Oh, I should be able to do yoga.” Because I was really weak at this point, but I’m like, “Maybe if I do stuff, I’ll get my strength back. Yoga is great for your mind, body, spirit. This is the perfect thing to do,” right?
Brianne: “Maybe yoga is the answer!”
Ashanti: Horrible idea, which I didn’t know at the time.
Ashanti: I didn’t realize until later on. But so I would go to yoga, and after every yoga class, I was bedridden for about three days.
Brianne: And were they… there’s so many kinds of yoga, but the more…
Ashanti: Beginner yoga, very beginner yoga.
Brianne: Yeah, but not… what are the really slow ones? Restorative, which is where you kind of mostly just lie there. It wasn’t a “just lying there “yoga?
Ashanti: It wasn’t. I did do a couple of, the “just lying there” ones, but I didn’t always do… some of them I was actually doing stuff, but it’s their beginner one, cause they have… it was a yoga studio. So they had a bunch of classes, a lot of beginner ones, and I took the beginner ones. So I’m like, “I’m really weak so let me just do that.” But I was even so weak that when I would sit down buttocks on the floor to stretch, my legs would tremble. That’s how weak I was. But I’m like, “Oh, as long as I keep coming.”
Ashanti: “My legs will get… I’ll get stronger. No big deal.”
Brianne: And that’s what haf always happened before when you would exercise, right? That you get stronger.
Ashanti: Yeah, but I was never this weak, so I’m like, “Yeah, I’ll just do stuff. Yoga is great. It’s low-impact. I’ll be fine.” No.
Brianne: Totally. Not at all.
Ashanti: Literally. Every class I was… after bedridden for three days, and I couldn’t understand why, it made no sense to me. I knew nothing about post-exertional malaise, which I’ll explain, and come back to later.
Ashanti: Nothing about that stuff. So I kept going back because that’s my personality. I have a very… I’m the person that perseveres. I’m the person that’s like, “You just keep going. You can do it! No matter what.”
Ashanti: Terrible. So every time that kept happening. And then finally, the last yoga class I took, I almost passed out in the class, and that to me was like, “Okay, your body is saying no thank you. Please don’t do this anymore.”
Brianne: Right. “Time for a break.”
Ashanti: So at that point, I heard my body loud and clear. I didn’t know why. But it was very bizarre to me because I’m like, “What in the world is happening?” I’m just still very confused because at this point there is no diagnosis that matches with everything that’s happening. Hereditary angioedema can’t explain why I can’t do basic yoga without being bedridden… and I mean bedridden, when I say bedridden, I mean having to lay down to eat my food.
Brianne: Right? Yeah. Like something you would never expect, right?
Ashanti: No, no. I had never had that in my life. Literally being unable to sit up to eat my food, and of course, definitely not making the food. My mom would make it for me or whatever. So, anyway. so I stop yoga and then I ended up admitted again in April, and this time I presented with lower digestive tract swelling. So I looked about six months pregnant. So that actually was external.
Brianne: Like it was visible, yeah.
Ashanti: It was visible. Yeah. And I’m thin, I’m petite, and I have a flat stomach. So for me to look six months pregnant, it is very obvious.
Brianne: It’s dramatic?
Ashanti: So I knew and plus, yeah. And I was having the pain again, the same thing. Couldn’t eat solids. It was the same thing, but it was interesting. It was on the lower half instead of on the top half. So if you think about like, from just under your chest down was where I was having the pain, even down into my pelvic area as well this time.
Brianne: And did it track to when you were eating? Since the first time, I would guess that felt pretty obvious, you try to swallow and you can’t. The second time you’d be like, “Oh, I can swallow.” But then however much time passes and then it hurts? Or not even?
Ashanti: No, once it got down to… let’s see, how can I explain this so that people without medical… okay, so your transverse colon, which is part of your intestines, it runs right across under your chest, or under your breasts, right across there, that top part. So every time that I ate something, I would have the pain, and that area would swell up. You would actually see the colon sit out. Because like I’m saying, it would sit out. And then my stomach was growing and growing and growing, so stopped eating. I ended up, same scenario, admitted again, but this time I didn’t really respond to the… I was also having bloody stool. I was having some other symptoms, and I had already had a colonoscopy.
Brianne: Like earlier?
Ashanti: A couple of months prior. Yeah. So it definitely… we knew that there wasn’t any colon cancer in there, but my allergist is like, “Oh, hereditary angioedema attack again.” So actually, I had gone to the ER days before I was admitted with the pain and they were thinking cause I’m a woman, they’re like, “Oh, let’s do a pelvic exam, let’s check.” And it was very interesting because when she examined my ovaries and my uterus and stuff, nothing. I had no pain. Everything was fine. However, when she turned her fingers down toward my rectum, I hope that’s not too graphic for anyone that’s listening to this.
Brianne: No worries. It’s all on the table
Ashanti: Once she turned her finger down to my rectum and pressed there, I almost flew off the table in pain.
Ashanti: So I’m like, “It’s not…” I knew that it wasn’t my reproductive system at all.
Brianne: Not gynecological.
Ashanti: No, I knew that it was my digestive system, and plus, I don’t normally look six months pregnant, lady.
Ashanti: So anyway, I was discharged home. They did do… I think they did a pelvic ultrasound and there was an ovarian cyst, but it was fine.
Brianne: Those are relatively common too, for people with ovaries.
Ashanti: And I’ve had them rupture before and all that. This wasn’t that kind of pain. This was different. I knew that this was not… so I went home and then it dawned on me… at that time I actually didn’t think… I actually wasn’t sure that it was a hereditary edema, angioedema attack. I was not sure. But then once I went home, I’m like, “Oh, probably the hereditary angioedema again. Right?” So I call my allergist the next day and I’m like, “Do you have any samples of…” there was a rescue med for hereditary angioedema, called Firazyr, so it’s sort of like epi, but for hereditary angioedema because epi typically does not work on patients with hereditary angioedema, which is interesting cause it’s a different mechanism that causes swelling. So.
Brianne: Gotcha. Yeah. So it has to intervene somewhere else.
Ashanti: Right. Yeah, exactly.
Brianne: I’m not a medical professional.
Ashanti: Well, good. If you understand it, that means everyone else who is not a medical professional does too. Cause sometimes I have to remember like, “Make sure everyone else can understand, not just your other healthcare professionals.”
Brianne: It’s funny within chronic illness patients because so many people have had so many medical experiences that most people have a more sophisticated language than maybe the general population, but certainly not at the level, probably of someone who has been through some kind of a program.
Ashanti: Definitely not at the level of my four year degree.
Brianne: Yeah, exactly. It’ll also be really specific. So whoever it is, they’ll know all of the medical terminology relating to their…
Ashanti: Their illness, right.
Brianne: Yeah. But it doesn’t obviously apply to everything. What was I gonna say? Oh, so before you got discharged, you said you weren’t sure. And they had tried some stuff, but basically they just weren’t able to get it under control?
Ashanti: No, this was actually in the ER. So I had gone to the ER a couple of days before I got admitted. That’s when I started having the pain, the difficulty, and all that stuff.
Brianne: And that’s when you weren’t sure.
Ashanti: Right. That’s when I wasn’t sure. It didn’t dawn on me until I was back home the next day and I’m like, “Wait a minute.” So I called my allergist like, “Do you have Firazyr?” and he’s like, “No, I don’t have any samples in the office.” And at this time I didn’t have my own prescription for it so I’m like, [sighs], so he’s like, “Come in.” So I go in, he gives me all this… not all of this, but I think like two or three pages of literature along with orders to take back to the ER. And he’s like, “You’re going to get admitted. So just go take this… give this to the ER doctor.” Because what’s interesting is I did mention to the ER doctor before I was discharged, I said, “I do have a history of hereditary angioedema.” But she looked like I had about five heads, and she had no idea.
Brianne: Yeah it’s like not even…
Ashanti: Yeah, it just went way over her head. She just didn’t… okay, so I just let it go. I’m like, “Okay.” But then the next day was when I talked to my allergist and he gave me everything I needed, so I went back to ER, they admitted me and they did treat me with fresh frozen plasma. I was in the hospital I think 16 days then. It was over two weeks. So it was a long time. And we tried the fresh frozen plasma and it just wasn’t working. I don’t know what was happening, and I wasn’t eating. So I was on the clear liquid diet ,and all this nightmare. And then, I found that there is a hereditary angioedema center right in San Diego.
Ashanti: California, which is a two hour drive from where I live.
Ashanti: So I’m like, “Oh, I should make an appointment there so I can at least see… is this really what’s going on?” But again, in the back of my mind, I’m still like, “This doesn’t explain everything. This does explain these bizarre swelling episodes I’m having, but it doesn’t explain anything else.”
Ashanti: So I end up going to that appointment, and basically that specialist was like, “I’m not sure. You might have hereditary angioedema type unknown, which is kind of a rare one.” But I’m just looking at him like, “Well, with my family history, I wouldn’t be surprised.”
Brianne: Yeah, if it’s atypical.
Ashanti: Yeah. I’m like, “Okay.” So anyway. I had also made an appointment in March, for August because… with Dr. Chia, John chia is a specialist in the ME community for doctors, but he had like a five month wait at that time. So I made an appointment, I wasn’t going to see him to August. However. Ironically, on the same day as my appointment in San Diego, I got a call from his office. They had a cancellation for that afternoon, if we could make it. We did make it. That was nine months into my illness and on international ME awareness day, and that’s the day that I got my diagnosis.
Ashanti: That was very ironic.
Brianne: That’s a big day.
Brianne: And did you… before the diagnosis, had you started to learn about ME? If you were looking at that doctor, were you kind of going, “I think this might be it, I’m learning more about it,” or was it kind of an accident?
Ashanti: To be very honest, while I was doing research, my sisters were also doing research. We had come up with all other different diagnoses that we tried and ruled out, and then they’re in a… it’s just crazy how the universe works. So both of my sisters sent me links about ME separately, and they didn’t even know that they had sent it to me. It was crazy… almost at the same time. So when I click the links and I’m looking, I’m like, “Oh my God, this sounds like me.” So it was at that point that I made the appointment with Dr. Chia, but again, he didn’t have any availability for like five months out. So in the meantime, he has you do blood work.
Ashanti: Before your appointment and once your blood work is complete, then you are quote unquote eligible for an earlier appointment if there’s a cancellation.
Ashanti: So that’s how I was able to get in, but it’s just so ironic that my diagnosis would come on the day of international ME awareness when I wasn’t even supposed to see him for three more months. And I was just like, “Wow. What a crazy…”
Brianne: Yeah. How does that happen sometimes?
Ashanti: Yeah. That’s crazy. So I’m… go ahead.
Brianne: I was just gonna say, and was he covered by insurance? Just cause you were talking about referrals and stuff before.
Ashanti: So what… one thing that was nice with my particular HMO… I think most of the are like this, but I can’t speak for certain because that would be reckless, but with my HMO, because I had already seen an infectious disease specialist within my medical group who I told you was…
Ashanti: Terrible. No. I was able to request a second opinion outside of my medical group.
Ashanti: And so you could go basically… pretty much anywhere, I guess, within reason… anywhere, I guess that primary… my primary insurance was Anthem blue cross. So wherever a doctor took Anthem blue cross, I could request a second opinion and it wouldn’t have to be approved through my medical group. It would just be Anthem saying, “Yes, you can get this second opinion at this doctor.” So my initial consultation with him was no charge. I just had to pay a copay.
Brianne: Right. And which would be expected anyway.
Ashanti: Right. Yeah. That’s normal no matter what.
Ashanti: Right. So I did do that. And then like I said, I got the diagnosis.
Brianne: Yeah. ME Day.
Ashanti: Yeah. Crazy. And then, I forgot to mention too, along the way, I even saw an ear, nose, and throat specialist because the hoarseness in my voice. Lasted for a long time. I can’t remember how many months into the illness, but a long time. And what I learned as I’ve been sick longer, is that on days that I’m feeling worse, my voice tells the story. So people who talk to me all the time, if they call me and I’m having one of my worse days, they can tell right away. They’re like, “Oh, you don’t sound good. You must not be feeling good.” So it’s interesting how my voice was telling the story all along, but I just didn’t know. But like I said, I, saw thw ear, nose, and throat specialist and he was thinking that there was… cause I do have vocal cord paralysis on the right side, that I’ve had for… we’ve known about it at least 10 years. But it’s… my cord is paralysed in the middle, so it allows me to still have a normal-sounding non-hoarse voice. So it’s… cause some doctors are like, “Oh your voice is horse cause you have the paralyzed cord.” I’m like, “No, actually my voice has been normal with the paralyzed cord. That’s not the problem.”
Brianne: Yeah, “That predates this.”
Ashanti: Yeah, the ENT who knew me well, he was thinking that there was… I forgot what he said and what else was going on. There was something, but it wasn’t explained. It still didn’t explain the systemic problems that I was having. I still continue to see specialists even after Dr. Chia, just to make sure that there wasn’t something else going on because oftentimes, as you know, people with ME have other illnesses going on. Well, there was other stuff.
Brianne: Yeah, you’re like, ” That’s true, too.”
Ashanti: Yeah, so I was bound to have something called paraneoplastic syndrome. And there’s abnormal labs, again, so for any foolish doctor that will say…
Brianne: “It’s all in your head.”
Ashanti: I’m making things up, I’m pretty sure that I can’t magically make my blood abnormal. So anyway, I have paraneoplastic syndrome and basically auto-immune autonomic neuropathy. So it’s one of those illnesses that falls under the dysautonomia umbrella. So a lot of people have POTS. I don’t have POTS.
Brianne: That comes up all the time on this podcast.
Ashanti: Yeah. So I have a different thing. Autoimmune autonomic neuropathy with that paraneoplastic syndrome.
Ashanti: So, I do… so with that, my autonomic nervous system obviously doesn’t function properly. So I have issues with low blood pressure. I have issues with low blood volume. I have… I give myself IV hydration several times a week through my port that I have in my chest. I have… if I stand up too fast. Everything goes black.
Brianne: Yeah, yeah, know that one.
Ashanti: I’ve been fortunate enough to be always somewhere I could hold the wall or something, so I don’t hit the floor. But still, I’ve learned to be very cautious about letting my feet dangle before I stand, just to try to avoid collapsing on the floor. I also have quite a bit of difficulty with showering. I’m not able to shower every day. I am… when I am able to shower, I have to use a shower chair. Even being on the shower chair, my heart still races at about 150 beats per minute, which for people who are not in the medical field, adult heart rate is 60 to 100 beats per minute.
Brianne: Yep. That is high.
Ashanti: So 150 at rest that’s at rest, cause I’m in the shower sitting down. I’m not even standing. So just imagine if I tried to stand up, I would be on the shower floor. Collapsed, passed out.
Brianne: And you think that’s partly heat? That’s part of it was showers right?
Ashanti: That is part of it. Because of the autonomic dysfunction, I don’t tolerate it. I have low tolerance to heat. However, I turn the shower where it’s not that hot. Before I got sick, I used to love long showers, like 30 minute showers, probably minimum. That was my thing, very hot water. I loved it. But since this, my showers have to be very short, obviously. And then I also don’t turn the water and as hot as I used to because I just can’t tolerate it. But even with that, and taking these precautions, there have been a number of times where I’ve had to literally open my shower door, fall on the bathroom floor to avoid passing out because I feel it coming like, “Oh I’m about to faint.”
Ashanti: I just lay myself on the floor to avoid passing out.
Ashanti: And I have become very, very, very short of breath, but it’s not asthmatic. This is not asthmatic symptomology. I’m very short of breath. I need water. It’s a whole… my autonomic nervous system is like, “Help! Help! Help! We’re freaking out! Oh my God. Oh my gosh.”
Brianne: “No showers! No showers!”
Ashanti: All of these things are happening at one time. So those aren’t fun. But even things as simple as… before I was sick, I was a die hard baseball mom. My son’s been playing baseball since he was five. He’s 14 now. And before I was sick, I never missed a game. Even if I had to work, if he had an 8:00 AM games, I worked night shift when I was a nurse. So if I… nights are 7:00 PM to 7:30 AM I’d get off, and head straight to the baseball field still in my scrubs, no stop for shower, no stop for sleep, and I’d just get there. So I’d be there to support him. But since I’ve been ill, I’ve missed more games than I can count. I mean so many. But I was able to make it to a game, and that’s… this has probably been over a month ago now, and I was just sitting there, sitting in my wheelchair. I’m actually in… I use a wheelchair. I’m sitting in my wheelchair. It was a sunny day, but it wasn’t super hot. It was probably in the 70s. I had my water, which I carry all the time, even though I don’t absorb it well, which was part of why I get the hydration through my port, which is basically IV hydration to help, since what I drink orally isn’t absorbed as well. But I still had my water, which is a full liter of water. And I had a full liter of coconut water too, which provides electrolytes and is very hydrating. And even with that, just sitting, my heart rate was in the 130s, and I wasn’t doing anything. I wasn’t screaming. I wasn’t… I’m just sitting there literally at rest and I’m just like, “Ugh.” That’s
Brianne: so uncomfortable.
Ashanti: It’s uncomfortable. It’s frustrating because I formerly had a very healthy body that I could do… I did… I was adventurous, I went skydiving, white water rafting. I mean, all these things.
Ashanti: How is my body unable to just sit and watch my son play baseball? It’s terrible.
Ashanti: Yeah. So it’s been a crazy ride. So I have that. And then, let’s see… am I missing? We still keep the hereditary angioedema diagnosis, so that’s on there as well. Yeah, that’s there. And then I was hospitalized in September of last year for about two weeks, but that had to do with my… the autonomic neuropathy. They believe that was the culprit. Although it’s really hard for doctors, whenever I get admitted, to determine which one of my illnesses… cause the autoimmune autonomic neuropathy is a rare one, along with the hereditary angioedema. So you try to figure out which one of the rare illnesses are the culprits.
Brianne: Yeah. Or are they just playing together badly? What’s happening?
Ashanti: Yeah, exactly. So, I think it was that, and I was admitted then and then discharged, whatever. But then I was just recently admitted again for two weeks. I actually was admitted for acute respiratory failure, and it was not asthmatic. Although when I first came to the ER, a couple of days before I was actually admitted, of course, they treated me like asthma sent me home. But then I came back actually the next day after the discharge, and was in a dire situation, like dire. I mean, I have never been… I’ve been sick for almost three years now, but even throughout this and all the multiple hospitalizations and everything, I’ve never felt afraid for my life like I did in the ER this last time. They almost put me on life support. I mean, I was in really bad shape.
Brianne: Yeah. That sounds really scary.
Ashanti: Oh, it was very… it was horrifying. And because being a nurse makes it worse, because when you see what’s happening around you, you know that you’re in bad shape. It was organized chaos. I will say. Everyone knew what they were supposed to do. They were all doing it, but there were like six or seven people working on me.
Brianne: Yeah. And you know what that means.
Ashanti: Yeah. And then when I hear them tell… hear the doctor tell them to get the life support equipment. I was like, “Oh my God.”
Ashanti: So, yeah. So I started crying.
Ashanti: I was afraid for my life. I’m like, “Oh my God. If I go on life support, I might not get up.” I was like… all these things, because I’m a nurse. So ignorance is bliss. When you don’t know, then you don’t really know how bad it is. But when you know… yeah, that was bad. But, so during that hospitalization, they concluded that I probably also have myasthenia gravis.
Ashanti: On top of everything else and that, well, they did know early on in my admission that the cause for the respiratory failure was neuromuscular. I knew it wasn’t my asthma, anyway. I’m like, “Well, this is different. I’ve been asthmatic for almost 30 years. I’ve experienced shortness of breath and all the various things. This is not that. This is something completely different.” So which also made it more scary because I’m familiar with asthma. That asthma short-of-breath doesn’t fighten me because I’ve been there, done that.
Brianne: Yeah. It’s the devil you know.
Ashanti: But this one was like, “What in the world?” It was just, ugh. Yeah so.
Brianne: So for that… for myasthenia gravis, am I saying that right? I think I’ve only seen it written down before. That’s a nerve thing where your nerves and your muscles aren’t communicating properly. Is that right? Or sorta right? Close?
Ashanti: Something like that. Neuromuscular so… weakness and, but I already have weakness from other ones, so…
Brianne: Who knows? But it’s in there now.
Brianne: And then, I also just want to try to keep up as we’re going through these with what the treatment protocols are. Cause you were mentioninge your port and saline and hydration, and then it sounds like with the… now I forget the word, the one that ends in -dema this… it’s been a long day for me.
Ashanti: Hereditary angioedema.
Brianne: Angioedema! Yes.
Ashanti: It’s hereditary angioedema.
Brianne: Hereditary angioedema. Okay, so for that one, you… it’s basically like, when something’s happening there’s a treatment, but there’s not much in between. Is that right?
Ashanti: No, actually there is preventative treatment too, that you can do. They have a couple of them now. One is intramuscular. The other is through IV. So I have that. I do have that. And then the rescue med though is subcutaneous, so that goes in your fat tissue.
Brianne: Right. Okay. So there’s both. When there’s an attack happening, then we’ll use a rescue med, and the rest of the time, here’s something that will hopefully keep it under control. Okay.
Ashanti: Right. And I forgot to add too, there is mast cell activation syndrome for me, and when I came in the ER with acute respiratory failure, I was also having laryngeal swelling, so like throat swelling, so they’re not sure if that swelling was caused by the hereditary angioedema or if it was mast cell activation syndrome anaphylaxis.
Brianne: Right, like IV Benadryl might help on the one side… Not for you?
Ashanti: Oh no, they gave me epi. They gave me epinephrin. They also gave me hereditary angioedema rescue med cause I brought it with me to the ER. Yeah, so
Brianne: just everything
Ashanti: that might help. Yeah. They gave me IV Benadryl, I’m sure. They were pushing everything and they even put IV fluids on what’s called a pressure bag. So the pressure bag squeezes the fluids so that the fluids infuse as fast as they possibly can, yeah. When you start seeing all that stuff I was just like, “Oh my God.” I was fighting for my life. I was afraid that wasn’t gonna make it. So that was quite horrifying.
Brianne: Yeah. No, that sounds really scary. Yes, so many things. Okay. So… and I just want to keep tracking. So then… so that’s from that… the breathing stuff. With ME, what are… the things that we’ve got that we haven’t specifically looked at coverage for? So ME and then myasthenia gravis. Do those both… I kind of know the answers, but for you, what protocols or what treatment or what has been happening basically?
Ashanti: So for the ME, as you know, there are no FDA approved meds or anything. So everything is just basically like, “Oh, try this, try that, see if this helps, see if that helps.” And for some patients, certain things help, other patients they don’t. For me, I have found that nothing has really helped for the ME. I’ve tried even anti-virals because… oh I just failed to mention that my ME was triggered by a virus. I became sick with a virus enterovirus to be specific.
Brianne: So you found that out later?
Ashanti: I found that out when I had the appointment with Dr. Chia.
Brianne: Makes sense.
Ashanti: Please excuse when I jump out of order because that’s how my chronically ill brain works. I forget something and then all of a sudden, I’m like, “Oh wait, I forgot that part.”
Brianne: Yeah, no, totally normal.
Ashanti: Anyway I failed to mention that enterovirus was found to be the responsible party, and what I explain to people all the time is that, there are people who get exposed to enterovirus all the time, you just have to have the perfect storm for it to develop into ME. Which is what I had, the perfect storm. So, now I forgot what else… oh, so anyway, I’ve tried antivirals. Yeah. I’ve tried all kinds of supplements. I’ve tried all kind of alternative acupuncture and Chinese medicine. I went to a place in San Diego, California, that’s called optimum health Institute. And they have people that have said to have been cured off cancer from there, et cetera, et cetera. So they do… it’s a holistic approach. So I went there for a week. I’ve done, I can’t even think of all the things that I’ve done. I’m sure I’m leaving out a ton of them, but pretty much.
Ashanti: I mean, I’ve done tried ozone therapy IV. I tried gludethyon IVs. I’ve tried low dose naltrexone. I’ve tried… I can’t remember everything else, but I’ve tried all those things.
Brianne: The usual suspects, basically, is
Ashanti: what that list is. Yeah, and to no avail. And then, I also am in… so for the autoimmune autonomic neuropathy, you can either do plasmapheresis or IVIg.
Ashanti: So initially my neurologist wanted me… oh, I forgot a hospital admission actually, but I’ll explain it now, so… it just dawned on me like, “Oh, I left one out.” So we… my neurologist and I elected, or decided… it was a joint decision that I would try IVIg.
Ashanti: That I would do it at home. At that point, I didn’t have a port though. My veins were still… I mean, they were a little questionable, but they were still there enough where home health nurses could access me with a regular IV and give me the IVIg. So my first time getting the IVIg I was okay. I had it… I think… how many days… was it three days of IVIg? I think three days. So everything was fine. Then three months later, I had the IVIg again, had a horrible reaction. When I say horrible, I mean hospitalized for a week, horrible. It was bad, so bye bye, IVIg. So then we were like, “Okay, well…” then we just kind of did nothing for several months. And then I ended up in the hospital again, like I said, in September. So at that point we decided to try plasmapheresis. And so, during that hospitalization, I was basically found to have no more veins even with ultrasound guidance, which, with an ultrasound machine you can see the veins that are very deep down into the tissue that are not visible to the naked eye when you just put on a tourniquet. The machines see way down in there. So even with that, they couldn’t find anything.
Brianne: Your veins were hiding.
Ashanti: No, they were done, nothing left. So they were like, “Oh, there’s some kind of connective tissue disorder because she has no veins.” They looked in both of my arms, all the way up to basically almost to my shoulder, like they were looking… it was crazy… everywhere. And there was nothing. They’re like, “Oh, she has to get line.” So they place the central line in my neck on the right side, something called a, it’s called a Mahurker. No one’s gonna probably know what that is, but anyway, it’s a line in my neck with three lumens that hung off of it. Two of the lumens, which are basically like two catheters. I’ll say it like that. Hopefully that makes sense. Two tubes… I don’t know how to explain it for people.
Brianne: This is probably good enough.
Ashanti: Two tubes… two… Yeah. Things. Yeah. Things that they use for the plasmapheresis, and then one, which is called a pigtail that they used for my IV fluids, IV medications, et cetera. So I did get the plasmapheresis, five rounds of that, discharged, whatever, and then we were just kind of in limbo, I guess. Trying to figure out what we’re going to do next, because in order to do plasmapheresis… oh, also during that hospitalization, because I was found to have no veins and I’m chronically ill and at the hospital a lot, the decision was made to place some ports. Also knowing that we would be doing the IV hydration several times a week and just… it’s unsafe when you’re sick, as I am to have no IV access. That could be, you know…
Brianne: Right. In an emergency or something.
Ashanti: Yeah. That could be horrible. So the port is there.
Ashanti: Now the thing is, you can’t do plasmapheresis through the port that I have. The one port on the market that is available for plasmapheresis… it needs to be… they need to do better. Someone needs to come up with something better, but it only works for plasmapheresis, you can’t use it for blood draws, you can’t use it for IV medication.
Brianne: So its like one or the other?
Ashanti: Yeah. And then on top of that, that’s only for them to pull. So with plasmapheresis, it’s basically like a plasma exchange. They pull your blood out, filter out antibodies through this machine, and then they usually put albumin back in to replace the plasma that they took out. So this port will only allow the machine to pull, but then you need somewhere for the return. So you would have to have another port, which would be a regular port, or you would need to be able to have veins where they can put it a regular IV to put the return back.
Brianne: Gotcha. That’s a bunch of problems.
Ashanti: That’a a huge a bunch of problems and no one wants to have two ports. Trust me, one on each side or your chest? No, thank you. One on my chest is enough. Not to mention the plasmapheresis port is apparently double or more the size of my current port.
Ashanti: Yeah. I’m petite with small chest area, so I don’t even… they don’t even know…. we didn’t even try to see because that was not an option for me. Once they told me all that, I’m like, “Oh no, I don’t even want to see it. I don’t even want to try it.”
Brianne: You’re like, “No, thanks.”
Ashanti: Yeah, they were contemplating exchanging out my current port for that, but I’m like “Will it even fit?” Like no, and then when I found out it doesn’t even work cause I use my port for blood draw, everything. I do everything with my part, which is great cause I do have frequent blood draws, et cetera. So it’s a saving grace. So anyway, we were like, “No, well that’s not gonna work.” So, and then the other thing is they can put lines in your neck and stuff, but those are temporary. And potentially every time you use one of those big vessels. It’s potentially what they call vein scarring. So if it’s scarred, then you can’t use it again. And then for a person… for me that’s not 70 or 80 you don’t necessarily want to be scarring your big vessels at a young age.
Brianne: Cause you never know other reasons you might need them. Like you said, about not having IV access.
Ashanti: Right. I mean hopefully some kind of miracle happens and I just get well, but if I don’t, I have many more years to hopefully live and then I need those big vessels. So anyway, but then this hospitalization, because I was in such dire straits and it was an emergency, they did put a line on my left neck, that same Mahurker with three catheters again. And I did get plasmapheresis again, which did seem to help me get a little better. So that was a relief because it was very scary there for a while. In fact, I don’t even remember the first week of my admission that much, I know I had a lot of visitors. But I was so sick. It was like a blur. I was, yeah, it was bad. So anyway, now the plan is to actually try IVIg again. However, what they have found is that in patients who have a bad reaction to one manufacturer, they oftentimes will do okay with another manufacturer.
Brianne: Hmm. Yeah. Is it because… okay, what’s the word that I’m even looking for? I definitely don’t have the technical words, so I’m trying to convert my understanding to what I mean. But basically they have like… are they kind of proprietary cocktails, almost? Like they have slightly different makeups or whatever?
Ashanti: Yes. Because IVIg is actually made from other humans. So each manufacturer does it a little different apparently.
Brianne: Just their process or whatever, their secret sauce.
Ashanti: Right. So, but this time I will have the infusion, instead of at home, it’ll be at the infusion center at the hospital. That way if there… any complication arises, I’m right there. I just get intervention quickly.
Ashanti: So we’ll see. I haven’t done it yet. So that’s coming in a couple of weeks, so we’ll see.
Brianne: Yeah, fingers crossed!
Ashanti: And at least that way, we can use my port, and I don’t have to worry about… there’s no issue with having to get a special port and all that. So, we’re really… my neurologist and I we’re really hopeful that this works. Although, you know, I’m a little anxious about it cause I’m like, “Please.”
Brianne: Yeah, of course!
Ashanti: But I do feel a little better that I’ll be at the infusion center at the hospital. So intervention can happen quickly if something goes awry.
Brianne: Yeah, yeah. And IVIg… no matter what, it’s not super comfortable, right? People typically… or many people will have kind of an IVIg… hangover almost for a couple of days, I think. Which I understand is different. Yeah.
Ashanti: I’ve heard people are wiped out after sometimes. Which, okay, I can handle that.
Brianne: Yeah. That’s not the same as what happened.
Ashanti: No. So we’ll see. And they’ll probably pre-medicate me, which they premedicated me before too, with Benadryl and Tylenol, but that’s still didn’t… so this time I’m not sure, but it’s highly likely that they will pre-medicate me with the Benadryl, the Tylenol, and they might actually add steroids on there as well.
Brianne: Yeah. To just support your body basically.
Ashanti: Yeah. And then also for the myasthenia, they discharged me with two new medications, both of which have caused quite a bit of digestive upset. So one of them we had to back off and now I’m on a baby dose, and we’re going to try to increase the dose every two weeks to see if I tolerate it. If I don’t, then they’ll have to try something different. But with this particular medication. It takes six to 12 months to see the effects. So that’s one of those that you have to just keep taking if your body tolerates it without horrible side effects.
Ashanti: You gotta keep taking it and you know, it’s a marathon, not a sprint.
Brianne: Yeah. Yeah. You just can’t tell… you’re hoping for an upside, but you’re not going to see it for quite a while.
Ashanti: Yeah, exactly. The other med, I was okay in the hospital, they had me on the short-acting, version or formula, and then for my discharge home they put me on the long-acting. Well the long-acting, my body was like, “No, thank you.” So now we’re back to the short-acting, and. I have to try to find the optimal dose between… I think between half a tab, up to two tabs per dose to see where I can feel some benefits but not the horrible side effects.
Brianne: That’s hard math.
Brianne: Yeah. Yeah. And so that’s like brings us up to now basically.
Ashanti: Yeah. I think we’re pretty current now at this point.
Brianne: Yeah. Is there anything about… any of the things about chronic illness, so what your day-to-day life is like, or what it’s been like to work with doctors, or what it’s like as a nurse going through this, that hasn’t come up yet that you think about a lot? Do you know what I mean?
Ashanti: I will say that being a nurse, although I’m disabled and I’m not working anymore, I’m still a nurse. I will always be a nurse. I feel has helped me tremendously through this fight, in terms of being able to advocate for myself in ways that… I really empathize even more with my fellow chronic illness sisters and brothers, because I’m like, “If I wasn’t a nurse, I wouldn’t know to ask for this or to tell him to do this.” You know what I’m saying? My heart breaks for people who don’t have the medical background, so they don’t know necessarily the right things to say or do, and even in terms of helping to find my diagnosis, I was doing tons of research and I was asking for specific doctors for referrals. Specific specialties, so I could get through ruling out everything possible. So, definitely my career has helped me tremendously. I’m able to manage my own port. I don’t need help with that which is great.
Brianne: Yeah, that would be huge.
Ashanti: Yeah. I’m completely independent with that. Including accessing it, de-accessing it, and everything else. Blood draws, all that stuff I handle on my own, which is great. So yeah, I will say that, I mean, day-to-day of course is unpredictable. Which has been one of the many challenges of chronic illness because people don’t understand. People are like, “Oh, well, just, just rest. If you just rest the whole week, then you’ll be okay by Saturday to do so and so.” And I’m like, “I’m sorry. You try to tell that to these illnesses.” They don’t care if I rest for seven days in advance. On the day of, they can still be like, “Aha, just kidding. You’re not doing what you thought you were going to do.” So it’s just, it doesn’t matter. It doesn’t work that way. It’s not like, “Oh, if I sleep tonight, then tomorrow I’ll be good to go.” No, my battery still can be on 5% regardless of if I slept eight or 10 hours a night prior and often, you know, sleeping is a challenge or you do sleep the hours, but then the quality of sleep is poor. I mean, I have an Apple watch. So my Apple watch is consistently telling me how my heart rate at sleep is not optimal.
Brianne: It’s like “Oh, looks like you’re exercising.” You’re like, “No, I’m sitting in the shower.” I guess you wouldn’t have your Apple watch there, but it’s like that.
Ashanti: No, I do. I wear my Apple watch, and it’s waterproof, so that’s how I know and try to keep track because I know if my heart is racing, especially in the 150s for more than a short period of time, I’m going to end up on the floor. So I look and I’m like, “Oh shit, let me hurry up.” Hurry up and do my business, and get outta here. Before I was sick, I took one to two showers a day. Definitely no less than one, mostly two.
Ashanti: And now to be unable to shower. I mean, to be very honest, I’m lucky if I can shower once a week, like actually in the shower. I mean, I do keep baby wipes at my bedside. Sometimes I can just do like a washcloth, you know, like, but that’s not in the shower. That’s sitting on my shower chair, but at the sink, quickly… just the important parts and nothing else.
Brianne: Yeah. Well, it’s like to feel a little bit human without torturing yourself through the shower.
Brianne: Yeah. I definitely, I think when I was working full time and I did shower every day, I don’t think I could have imagined… like maybe on a Sunday, sometimes I wouldn’t shower, but I never would have been like, “Oh, there will be a time in your life where you shower once or twice a week, and that becomes normal for you.”
Ashanti: You could have never told me in a million years that there would ever be a time in my life that I would miss even the one day of showering. I mean, never.
Ashanti: Unheard of, I mean, like, “What?” And for a long time it was very difficult for me to deal with and accept and not be upset with myself. Now I’ve reached acceptance, and I’m like, “You know what? I do the best that I can. When I can do it, I do it, and when I can’t, I just can.” I do have baby wipes and wash cloths to at least get the important parts, but it is what it is. This is the real life of chronic illness. This is what it’s like. People think like, “Oh, you’re just chilling at home. Oh, that’s great.” I mean, I’ve have people say, “Ooh, I wish I could just be in my bed all day.” Well, I don’t. I fucking hate it. Excuse me.
Brianne: Oh no, don’t worry. You’re fine.
Ashanti: I absolutely hate it. Before I was sick, I was never at home. I was only at home basically to sleep. Outside of that, both of my kids were active. I have a daughter that actually just graduated from Penn State last month. But when she was younger, she was a competitive cheerleader. So I was a cheer mom and a baseball mom. I was active in their school activities, because I work nights, so my days were free. If they had award ceremony that was there. Everything, I was working out five days a week. I had a good social life. I was traveling. I was adventurous. I was doing all these things, and to go from that to basically trapped in my room, the majority of the time?
Brianne: It’s not a fun vacation.
Ashanti: No, and you don’t feel good, so you’re not even enjoying it. And there’s a lot of days where I can’t even watch TV. I don’t feel well enough. It’s too much stimulation, whatever the case. So I’m just in here in the quiet.
Ashanti: It’s not… trust me, I would trade this to have my career back and be working overtime, okay?
Brianne: No sleep at all!
Ashanti: Yeah, and being chronically ill is a full time job. People don’t realize the number of phone calls, emails, research, this, that, that you have to do, advocating for yourself. I mean, it’s a nightmare. I’m fortunate now that I do have Medicare, so I have less of the challenges that I had, when I had an HMO because now if I see anyone outside of what was my medical group, I’m fine. I don’t have to pay out-of-pocket or anything. Cause there have been… I have spent tens of thousands of dollars on appointments and this and all these things. People just really don’t realize chronic illness has made a lot of people homeless. I’ve been blessed that that hasn’t been my story, but it has caused a tremendous financial strain. I’m a single mother.
Ashanti: I would not wish this on my worst enemy. No, this is the horrible, no one wants this.
Brianne: Yeah. It’s not… whatever people think or are imagining when they say that they wish that they could lie around sometimes. It’s not like that.
Ashanti: Oh yeah, you want to lie around and feel like shit? I don’t think so.
Brianne: It’s quite boring. The best way to describe it is to say that it’s boring.
Ashanti: And then for people who have excruciating pain, that’s even worse. So you want to lie around in excruciating pain all day? I don’t think so. Where the sheets even hurt you… I mean, I’ve seen people’s stories… the sheets hurt them. They can’t even lay down comfortably. They’re in excruciating pain at all times. No, thanks. Who wants that?
Brianne: Yeah. All of the sensory staff… the sensory overload stuff. It’s a whole world that I definitely did not know about before I got sick, and I think most people have no idea that it’s even happening.
Ashanti: No. Even for me, and I’m a nurse. And I have to be very honest and say like, I know that this… that what I experience is incomprehensible to anyone who has never experienced uncontrollable body failure. Because that’s what this is, it doesn’t matter my willpower. People are like, “Oh, just push through.” I’m going to push through and kill myself. Do you understand my illness? That just made me remember about the post exertional malaise, earlier on when I was talking about the yoga.
Ashanti: I was so sick after every yoga class. Well, I didn’t know until I met with Dr. Chia and was diagnosed and found out that a classic symptom of ME is post exertional malaise, which is also called post exertional neuroimmune exhaustion, which basically means that you have a worsening of your symptoms after… a lot of people, even a minimal activity like cooking a meal for themselves or taking a shower or just walking in their house. Minimal activity. It’s not just exercise, but exercise is one of the ones that’s pretty much guaranteed to get you close to death’s door. Exercise is a no, that is an absolutely no. I didn’t know that, and I’m glad that it was yoga and not something more strenuous, but I will have to say that after those yoga classes, I was sicker and never got better. The yoga made me sicker and I never returned to my pre-yoga baseline, even now. That was over two years ago that that yoga stand happened.
Brianne: Yeah. Yeah, and that’s exactly the kind of thing that, until it happens to you, no one would ever think that going to a yoga class would be… permanently or longterm have negative effects.
Ashanti: Yeah. Yeah. Well, so far it’s been over two years for me, so I’m waiting for… but yeah, people don’t get it. Anyone who knows me knows that I love fitness. I miss fitness so very much. However, I have experienced what even yoga can do to me. I’m not willing to take that risk. Someone told me, “Oh, I saw a documentary about a guy and he was doing salsa to help him with your illness.” I said, “No, he could not have been doing a salsa with my illness.”
Ashanti: And then I thought to myself, “Well, maybe if he has a very, very mild ME.” But then I’m like, “No, because the classic symptom that that separates ME from the other chronic illnesses is the post exertional malaise.” So it’s like “You’re doing salsa?” And salsa isn’t just nothing. I mean, salsa is a pretty good workout. So I’m like, “No.” And so what I did was I sent him several articles about how exercise is detrimental for people with ME and could even kill us. Depending on how much you’re doing and how bad, whatever. So anyway, I was like, “Uh, no.” And plus, Dr. Chia was very, very clear about, “You cannot exercise anymore.”
Brianne: Yeah. Just like, “Don’t push yourself at all.” Yeah
Ashanti: He’s like, “That’s out.” So I’m like, “Okay.” And no, I’m not willing to make myself worse. I’ve already experienced it. And again, anyone who knows me knows I have the type of personality that’s a “push through” personality. I do understand that it’s counterintuitive to hear that activity even minor, minimal can make me sicker, but that’s the reality. Period. It is what it is.
Brianne: Totally. Yeah, and that’s hard. That’s hard for 1.) For… especially like you’re saying, you’re like, “I loved exercise. Exercise was a good part of my life.” And it’s hard to lose that. And it’s hard to convince people who really want to believe that actually, if you just found the right way to fight through it, you’d get better.
Brianne: You’re like, “No thanks. That’s not true. That’s not what’s happening.”
Ashanti: Yeah. Because people are like, “Oh, when people have cancer they say to stay active.” And I’m like, “Yeah, that’s for cancer.” I’m not saying anything negative about people with cancer, but it’s different than chronic illness. We do have some similarities in our experiences. However, yes, for cancer, they do recommend stay as active as possible for as long as possible. But for my illness, it’s the exact polar opposite.
Brianne: Right. Yeah. It’s a bad idea. Period.
Brianne: Yeah, totally. Yeah. Oof, okay. I already asked if there’s anything that we haven’t covered yet, but if anything else has popped into your head, you are welcome to say it.
Ashanti: Not that I can think of, unless there’s anything that you can think of specifically that you want me to touch on.
Brianne: No, I think we’ve covered a whole lot, and everyone’s story is so different that I don’t use a fixed set of questions cause then it just wouldn’t apply half the time.
Brianne: I feel like we’ve covered so much stuff. And I like, cause you have a medical background, you’re able to really talk about that stuff, which is cool. Thank you so much for taking the time to share your story with me. I know that energy is not free and that…
Ashanti: No, it’s not. This will cost me, but it’s worth it though because it’s so important for people to hear. And well this was hear cause it’s a podcast… to hear our stories. And also I do want to just mention that I am a woman of color, which I know we are not often represented in the chronic illness community, but we are here. We are sick as well. And we need to be believed too because there’s a stigma that comes along with not just women being disbelieved, but also women of color, it adds another layer. So I just want to let you guys know that we’re here. We’re sick. We went to be heard, too.
Brianne: Yeah, yeah, definitely. And thank you for saying that.
Thank you for listening to episode 42 of No End In Sight!
You can find Ashanti on twitter and instagram @AshantiRN and you can find me on instagram and twitter @bennessb. And of course you can find this show on instagram @no.end.in.sight.pod. I post each episode as a story but haven’t posted to the main feed in a while because I’m so behind on transcripts – although I finished one last week, yay! But of course, the whole reason that I’ve started a patreon account is to help with transcripts so I’ll go ahead and plug that again: it’s patreon.com/noendinsight.
I’ve got lots more stories in the pipeline, so make sure you subscribe in your podcast app to find out when new episodes are available. And if you’ve been enjoying this show, I would be so grateful if you’d leave a review on Apple Podcasts so that new listeners know what to expect from the show.
As usual, don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s quiet but growing, and you’ll even find a few podcast guests in the group.
This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I love to cross stitch as a way to feel productive during flares when I’m stranded in front of the television. I’ve got a few fall patterns in the shop that are about to be seasonal, so I’d love it if you checked us out at digitalartisanal.com.