Exploring New Paths to Healing

 *Trigger Warning*

What if your lifelong pain was dismissed as mere imagination? Join us as we explore Riane's powerful narrative of self-advocacy and perseverance in the face of medical doubt. As a Hawaii native, Riane offers an intimate look into her life with juvenile rheumatoid arthritis and chronic migraines, shedding light on how these experiences, along with her grandmother's wisdom, have shaped her path in health and advocacy. Her story is a testament to the resilience needed to overcome the emotional and physical hurdles of chronic illness, emphasizing the importance of community support in this journey.

Riane’s candid recount of navigating the healthcare system during the tumultuous times of the COVID-19 pandemic offers a poignant perspective on the challenges of securing an accurate diagnosis. The episode uncovers the often-dismissive nature of medical professionals towards those with rare conditions, and Riane’s persistence in finding a compassionate healthcare team, leading to the discovery of an uncommon autoimmune disease, Ankaculitis. Her journey underscores the critical role of self-advocacy and the collaborative effort required between patient and practitioner to achieve effective care.

We then shift focus to Riane's experiences with medication management and alternative treatments, highlighting the nuanced use of cannabis microdosing and Eastern medicine. Discussions range from the drawbacks of traditional pain management methods to the promising benefits of acupuncture and cupping, offering listeners a broadened perspective on personalizing treatment options. As Riane passionately shares her journey, we explore her literary venture, "Blurred Vision," a poetry book inspired by her experiences with trauma, offering a dual narrative of healing from both survivor and perpetrator perspectives. This episode is a heartfelt call to explore and embrace diverse healing paths on one’s journey to wellness.

https://www.instagram.com/rianescorner?igsh=MW9rdDBwM3NsZ3JseA==

Hi, Jen here! We are so glad to have you back. I want to personally thank those that have signed up with Rare Patient Voice recently. We love your support of the podcast, and this is another way that you can by signing up with Rare Patient Voice through our referral link. Remember, we're here to support you every step of the way. 

Chapters

• 0:00 Chronic Illness Warrior Shares Journey
• 11:19 Navigating Autoimmune Diagnosis and Treatment
• 19:27 Navigating Medication and Insurance Battles
• 34:35 Exploring Cannabis Microdosing and Medication Management
• 44:30 Healing Journey and Eastern Medicine Insights

Transcript

Jen: 0:08

Welcome back to my Spoonie Sisters podcast, where we amplify the voices of chronic illness warriors and advocates who inspire us to keep pushing forward. Today, I am thrilled to welcome Riane. Ashley, I'm going to butcher your last name. Do you want to say it for me? Curtis, that's not even that hard, but I was going to butcher it anyway, I am thrilled to welcome you.

Jen: 0:31

She is a Hawaii native trauma survivor, a poet, and a passionate advocate for marginalized communities and those living with rare autoimmune diseases. Riane's journey from navigating juvenile rheumatoid arthritis and chronic migraines as a child to her current advocacy work with vasculitis has been both challenging and inspiring. She's here to share her story, her mission to educate others about rare diseases, and, of course, her upcoming projects, including her book Let's dive into for publication in 2025. Riane's powerful story and learn how she's turning adversity into action. Hello, I'm also excited to introduce our co-host today, Ali.

Ali: 1:18

Hello there. Yes, I am so excited to be here.

Jen: 1:21

Babies- I'm excited to be able to talk to the two of you First. We're going to dive into your story and your advocacy. Rianne, do you mind can you share more about your journey growing up with juvenile rheumatoid arthritis and how those early experiences shaped your perspective on health and advocacy?

Riane: 1:38

Yes, I was six years old when I was diagnosed with asthma. In Hawaii the doctors like to call it the dangerous triad, because allergies run rampant in the islands Not just allergies but asthma. The triad is asthma, eczema, chronic rhinitis. It's normal when you have allergies all the time. I was diagnosed with chronic asthma at six and around the age of eight or nine I started experiencing inflammation in my joints, waking up with very stiff joints. You know just pain in my hands and my feet particularly. And the pediatric hospital here told my parents that I had juvenile rheumatoid arthritis and in the 90s that is what they called what is known today as GIA, juvenile idiopathic arthritis. So my parents wanted to manage at home and with my PCP, not with a rheumatologist, because my mom was in healthcare and she still is and she knows about the dangers and has known about the dangers with steroids. So I am grateful for that because I wasn't thrown prednisone right away, my PCP. At the time my family's doctor gave me Celebrex, like you know, just muscle relaxants just to calm down the muscles.

Riane: 3:00

But I kept getting sick with bouts of pneumonia and the cold. My longest bout with pneumonia was about five to six months. I was in fourth grade. Goodness, yes, I was out of school that whole time, but I was able to do my work at home. I had a very understanding teacher. I was on the nebulizer like 24-7. It was really bad and doctors still couldn't figure out what was going on with my lungs. They just said chronic asthma, take your inhalers. I was getting sick of it and fast forward. I got chronic migraines in the mix and then really bad periods when I became in high school. All throughout my childhood because of my grandmother. She implemented a lot of the indigenous medicines into my journey and I'm so grateful for her because she always said things like if you stay in bed all day, you're welcoming death.

Riane: 3:52

If you stay in your room all day, you're welcoming death. If you stay in your room all day, you're welcoming sickness. If you sleep too long, you're only going to get sicker. Okay, grandma, she sounds very wise.

Ali: 4:00

She sounds very, very wise. We love grandma. Yes.

Riane: 4:04

She was very wise. I'm so grateful for her because when I kept getting pneumonia and sickness in the, you know, my high school years and my college years, she would make me soups. What is known and studied today by researchers is called the moringa plant In Filipinos. For Filipinos it's called morongay and this, when we make it into a soup, it's packed with antioxidants, it's packed with super nutrition, and every time I got sick, my grandma would always make that soup. And in the future, you know, fast forward to today, before she passed away, she did tell me that the murungai plant is specific to your blood, so that's interesting it is it really influenced how I approached my care.

Riane: 4:54

it really influenced how I approached my care. It really influenced how I approached my health journey as a whole In 2009, when I had a really bad bout. I was allergic to everything under the sun. Literally, I could barely eat anything. I had to do allergy shot treatment, so I had to inject myself with the things that I was becoming allergic to just to stop my immune system from attacking my body further.

Ali: 5:20

And this was out of the blue, like sorry, you just started getting allergic to things that you weren't previously allergic to. No, wow, okay.

Jen: 5:29

And then, how long did you have to inject yourself with?

Riane: 5:31

those oh, it was two shots. I had to pull the vials myself. It wasn't pre-injections, pre-filled injections. I did that for about nine months and then I got sick of it Because those needles were not short needles, like. You can see how long those needles were, and even though they were skinny needles, it was becoming more and more traumatized having to inject myself with them.

Jen: 5:56

I don't think what people realize either is the side effect of having to give those to yourself too, my gosh, because my mom had to do it. She's allergic to bees and everything and she gets all nasty. She would have to get those because she lives in the middle of nowhere and they were wanting to make her deal with them better, and the reactions that you guys get because of giving yourself these injections are horrific.

Riane: 6:17

They're painful, so painful. I remember my very last shot. I was like so sick of it. My mind wasn't even there. I was away at college and I was on the phone with my mom and I told her I don't think I can do this anymore. She's like, what's going on? I said I was sitting in the toilet you know, in my bathroom, because I was shared dorm I was about to inject myself. And when I did you know when you're just so distracted mentally and you're not really paying attention to your injection oh yeah, so I let go too soon before I pulled out the needle and in that split second I told my mom yep, I'm done.

Ali: 6:55

It was a sign. I believe in signs Like it's just no, we're done.

Riane: 7:00

Yes, and I was bleeding and I told myself, okay, we're going to have to figure this out because I'm not doing this anymore. That was my very first really bad medical burnout and it lasted 10 years you went away for college.

Jen: 7:15

Was that in Washington?

Riane: 7:17

Mm, hmm.

Jen: 7:18

I had a feeling, because you and I have talked about it before when were you going to college at the time, st?

Riane: 7:22

Martin's, where's that? At Lacey, so it's right next to Tacoma, okay okay, yeah, I call it the old people town because everything closes early. There's a lot of those. Oh yes, I completely stopped. I went on this. I hate healthcare spiel for like the longest time.

Riane: 7:40

I hated medical doctors. I hated going to the hospital. I hated having to deal with everything because it was just so bad. Even when I was having eczema flares, I didn't even use their steroid ointment. I was like I'm not doing that. I've always known from middle school not to use them, so I mitigated other ways. Fast forward to now because of my big break in those 10 years. Actually, it was longer than that, maybe 11, 12 years, which was very dangerous. By the way, if you've experienced medical burnout, do not do what I did. I completely ignored all of my doctors. I hated going to the hospital. I didn't follow any of their treatment plans. I said forget it to the medicines and I followed and I'm going to be honest with you guys being the complete holistic route and I am not dogging on anybody that decides to try this route. I'm just saying that it will catch up to you in the future and if you don't find the balance with Western allopathic medicine, you can harm yourself further by going this route.

Ali: 8:44

Absolutely, but I think people don't like. Well, they might understand, but medical burnout when you said that it was just, I've never worded it that way. I love that and medical burnout is a real thing. So I a hundred per it is. I a hundred percent understand why you did that. Like I've had medical burnout trying to get answers for something that's never been diagnosed and I wanted to just give up at the end I was like that's it, I don't want to see a doctor ever again and I still feel like that. So just want to say if any of the listeners have experienced medical burnout, they would understand why you took this break. But please continue.

Jen: 10:20

It's very interesting able to help turn our mind frame back around because, yes, we do have these feelings of medical burnout, but it can be dangerous and so somebody can just kind of help us along, get back on track in a healthy way. Then hopefully we can find a balance, which I think you're going to get into the balance right, I'm so excited to hear yes, yes, it was 2020 and 11 years after my complete burnout.

Riane: 11:00

This is why I'm telling everybody it's so dangerous. I mean, if you're going to go this route, don't make it that long A couple months to a year. Talk to somebody, surround yourself with people who understand, because I woke up one morning and I looked at my wife and I said I can't move, I can't rotate my hip, said I can't move, I can't rotate my hip, I can't move. This was in the middle of COVID.

Jen: 11:22

Now October 2020 like worst time ever worst time to go to the doctor worst time you could ever experience this.

Riane: 11:30

Um, I told her you're gonna need to find a blanket, put it under me. I'm going to rotate towards the wall because our bed was, you know, kitted up next to the wall. I said I'm going to roll towards the wall because I can rotate onto my right. You need to stuff the blanket under me and then I'll pull it when I roll back. So she's like OK, now what do you want me to do? I'm like, then you're going to pull me off the bed to sitting. Then you have to get me to stand so we can go to the emergency room, because I cannot do this. She got me standing, she got me into the car and she said why don't we just go to urgent care first and see what they say? Because it was COVID and we didn't want to go to the emergency room for no reason.

Riane: 12:14

I got into urgent care. They gave me a shot in the butt, a pin shot. Now you know one of those steroid shots. I looked at him and I said it ain't gonna work. I'm telling you right now it's not gonna work. He's like well, let's just try and we'll call the emergency room. And I said okay, I mean if you want to waste your supply. I know my body. He gave me the injection. It didn't work. I waited 30 minutes and I told him. I told you. So Now can I just go to the emergency room because this isn't working.

Riane: 12:39

So I ended up at the emergency room. They did their whole triage. Whatever the CBC panels, the comprehensive panels, everything showed up almost completely normal, except for my SED rate, my CRP and my ale semaphilic. The doctor in the trauma center told me you know what? We'll admit you for a couple of days to see if it's an infection. We'll run through the gambit with you. I said, okay, fine, it was day two. I had the doctor tell me you're fine, nothing is wrong with you, it's all in your head.

Ali: 13:13

Go home. Can you explain to us, like, how you felt, like how you say you couldn't move? Was it like muscular? Could you let us tell us how you felt it?

Riane: 13:21

was bone.

Riane: 13:22

It was bone, deep pain. So when you just imagine waking up in the morning with arthritic pain and then it's completely stuck, then you have the mixing of neuropathy pain shooting down your hip so you couldn't even put, I couldn't even put pressure on it. It was that sore, it was so sensitive to the touch and when this doctor told me that, I looked her straight in the face and I said I hope you don't practice healthcare anymore, because what you are doing to me is breaking me down and people like me don't deserve doctors like you and doctors like you do not deserve doctors like you and doctors like you do not deserve patients like me.

Ali: 13:59

I'm too good for that. Snaps God, yes, yes.

Jen: 14:02

I am so glad that you said that for yourself and said that, because how many of us have gone into situations and been treated like that or even worse and we just sit there and we take it and the moment they walk out of the room. We bawl our eyes out, so I'm so, so proud of you.

Ali: 14:17

Thank you.

Riane: 14:18

I think you know so many years under my belt and just dealing with this since childhood there comes a point where you just enough is enough. You know you get sick of hearing the same things over and over and over again that speaking up for yourself is actually. It feels a lot better because you don't go home, you don't cry, you take action and you're taking action for yourself, and I believe that that is the first thing to advocacy If you can't stand up for yourself in that patient room, you have no business helping other sisters going through the same thing.

Riane: 14:52

Yes because that is a huge component to who we are it's advocating for itself first before we can advocate for others. And in that moment I just have to say it was the mentality of the administration at that time that really pushed medical doctors like her into that direction. It took an orthopedic surgeon to sit me down local boy from Hawaii and look me straight in the face and he said, sister, this isn't orthopedic related, this isn't something that we're going to fix overnight. This is autoimmune in nature and you need to find yourself a good routine. I said, okay.

Riane: 15:33

He looked at my chart and he said you need to find yourself a new PCP. But because your PCP has been your family doctor, ask him for a referral to a rheumatologist. Then you go from there. I truly believe that when you keep advocating for yourself and you keep pushing through those barriers, you will find your A-team. We'll find the team that is for you. When I went to my PCP in November of that year, I told him I thank you for taking care of me all the way up until this point, but I think it's time that I move on. He found me a new PCP and a rheumatologist. It was his parting gift to me. That's so good.

Ali: 16:13

Yes, that's a good doctor.

Riane: 16:14

I remember meeting my rheumatologist for the first time. She looked me dead in the face and said I'm not a bitch, I'm not mean, I'm just trying to not to get connected to you on a personal level until I understand what is truly going on.

Ali: 16:30

Yeah, yeah, very upfront, love it.

Riane: 16:33

Very. I was grateful because in February of 2021, she told me you've already met with pulmonology, allergy and immunology. Everybody is on the same page about your condition, so let's talk about your results. So she said you have what is called a rare autoimmune disease, c Ankaculitis. My c-anchor results came back positive and she said it truly makes sense as to why you're dealing with this because of your whole medical history. I, I kind of like, sat back and I told her okay, now what's next?

Jen: 17:15

exactly. So what is next? What? What does that mean?

Riane: 17:17

right said now, we treat the symptoms.

Riane: 17:21

We don't treat the condition. We treat the symptoms. Great, what do we do? She said I don't believe in giving you more steroids, because you've been through a prednisone your whole life. We're not doing that. If I need to give you prednisone, it's going to be in a dose pack. And I said okay, that's great, I believe in that. She said no steroids, no opiates for pain relief. What are you doing now? That is working and I'm going to put that in your chart. So I told her I have a Chinese doctor that I go and see. So he's my really good friend. I do acupuncture, cupping, massage, work, all with him. I have my 329 card, which is my cannabis card. She said great. Then, on top of all of that, she sent me to a pain specialist.

Riane: 18:06

Good, I never in my whole entire medical journey have ever sat with a pain specialist. This is my very first time meeting one. I remember meeting him and he handed me a waiver the very first time I met him. He didn't even say anything to me. He handed me a waiver and on this waiver he handed me a waiver and I was like what in the world is going on? I sat there and I read this waiver and it said I am not the pain doctor for you if you are looking for opiates and steroids as your main mode of pain relief treatments.

Ali: 18:43

Good.

Riane: 18:44

I'm impressed.

Ali: 18:44

Yeah.

Riane: 18:45

Please sign here if you're okay with it.

Jen: 18:48

Now, rhiann, didn't you and I recently talk and we never even got to dive deep into this about opioids and what I had learned when I was at ACR?

Riane: 18:57

We didn't, we didn't dive deep.

Jen: 18:58

Okay, we still don't have the time to dive deep, but I can tell you a little bit of what I learned. And what they were learning is that, especially for certain autoimmune diseases, by handing out prescriptions for opioids, they can actually be causing you to get worse. That was an interesting topic to be hearing about with the rheumatologist. I think my jaw went to the ground. It was like, okay, good, I'm glad we're actually talking about this. This is not always the answer. There's got to be something else. So what did you end up finding?

Riane: 19:26

out this specific doctor. My pain doctor told me that opioids alters your brain response and your body's response to pain. On top of that, you're coupling the chances of you getting addicted to the pain medicine. So you're not only dealing with the body's after effects to taking opioids, but you're also dealing with oh my gosh it could get addicted because it's altering your brain chemistry on how it responds to pain, altering your brain chemistry on how it responds to pain.

Riane: 20:02

I was honestly really happy because I have never been the type of patient to just willingly take opioids, even in high school. I have never. I've always been one to roll up a joint and smoke it when it wasn't legal. Yes, because it helped. It was the only thing that didn't give me the downward spiral spiral that you know opiates do. So, yeah, um, in my medical chart there is a note now that says please do not give this patient steroids if she doesn't ask for them and please do not give opiates as a main mode of pain relief if she hasn't asked for it.

Riane: 20:41

I believe the amount of time that I've been to the emergency room specifically for pain, I haven't been given anything because I told them do not give me pain meds if you don't want to. Please do not give me steroids if you don't want to, and please do not give me prednisone just because you think it's going to work. I don't want it and I just want to know what's going on with X, y and Z, you know, because I can't go to the. You know I can't go to anywhere else right now. It's in the middle.

Jen: 21:09

I have the same thing written in my chart because it's okay if they offer or ask if I feel that I need it. But I want them to be aware that if you can say prednisone, but I'm probably going to tell you no, please be okay with that and be warned. What about you, allie? How do you feel about that one?

Ali: 21:24

Prednisone doesn't work for me so there's no reason for me to take it. I think the longest I took it for was a month and I was so excited because everybody was like, oh, you're going to feel such relief. I felt nothing, so I was like this is a waste, so my doctors don't even bring it up because they know it doesn't do anything for me. I do sometimes take a methylprednisolone which is like kind of the same thing um pack, like you know, the seven day pack, um, if I'm having a really bad flare but even then it doesn't really do much.

Jen: 21:59

So I I don't really take steroids just because I'm not affected by it for some reason. No, I feel the same way because when I was first diagnosed actually before I was even diagnosed when they first started me on prednisone, it did absolutely nothing. It put 40 pounds on me and that was it. I just began hurting even more. So why give us something that we don't want or is not working?

Ali: 22:13

None of us like it. None of us want prednisone. I know some of us don't have a choice if we're in a really bad flare, but it's just awful. It's an awful drug. It sucks. But yeah, unless we really, really really have to take it. A lot of us don't want it.

Jen: 22:26

And I think there's a list of things out there that, unless we are absolutely desperate, we're going to say no, we don't want it. That's awesome that it's in your chart like that.

Riane: 22:34

Yeah, it is with the rituximab treatment I'm taking now because my insurance wants to be. I'm selfish. They denied my rituximab this last treatment round and I'm on a biosimilar trachyma. It didn't work. It didn't do anything. I had the worst reaction I've ever experienced a couple hours after treatment now I have to do two rounds before I have to wait six months again.

Riane: 22:59

I had chest tightness. I felt like my throat were closing up All the things. Now, mind you, I'm on the lowest dose for pre-med because these things are considered immunotherapy drugs, so like chemotype level drugs, right, and they had to increase my methylprednisolone. They do it through IV. They have to increase it. On rituximab, I only needed 40 milligrams of methylprednisolone At the lowest, the lowest you can go on the pre-med dose.

Riane: 23:27

I was at that lowest dose but my rheumatologist told me I'm forewarning you, if you really want to go down this route, we're going to have to increase it at least three times. So we're going to go from 40 to 120. I just remembered the heat, the hives, because prednisone, methylprednisone, can do that to you. You can get hives, you can feel warm, you can get nauseous, you feel like you want to throw up.

Ali: 23:55

Yep, okay.

Riane: 23:57

So they asked me do you want Zofran, do you want antinodium meds? I'm like, please do not pump me with more meds. Like, are you kidding me? Do you understand that Zofran, too, has side effects? Give me a rubbing alcohol wipe and I have my essential oils with me. Do not give me any more.

Ali: 24:14

And a cold pack behind your neck. They always did that with me for my infusions because I would get so nauseous.

Riane: 24:19

Yes, Place it on your head or right by your, where your neck meets your back it really helps.

Ali: 24:25

So when you got sorry, when you got side effects the first time, were you home or were you at the infusion center Like, did you already go home and experience those side effects?

Riane: 24:34

I was home when I started Scary.

Ali: 24:37

That's scary.

Jen: 24:37

And you had the chest tightness and my God it the same day or like it was the same day, it was the same day and the thing that sucks is when I go home.

Riane: 24:50

I normally have this thing where I smoke my weed because it helps me, you know, relax and go to sleep. But this time around I couldn't do it because I looked at my partner and I said I'm afraid if I do this it's going to exacerbate what I'm feeling. So I had to do other things. I took a cold shower, I laid down flat on the floor, I tried to do everything that I could muster in my head before going to the emergency room. I called my rheumatologist before and I told her what was going on and she just wanted me to go to the emergency room to be observed. So when I did, I mean we were able to take care of it. That second round of treatment having to increase that steroid dose.

Ali: 25:31

And then get another reaction on top of it, like you're doing it to prevent another reaction, and then you get a reaction, you know, like the hives and the heat and the nausea.

Jen: 25:38

Yes's, yes are they taking you off of the biosimilar or are they trying to have you continue doing it?

Riane: 25:45

because I did the two rounds and I've been keeping track and keeping notes. Everything went haywire. My neuropathy pain got worse, my chronic migraines got worse. I went from having to do you know, I do my nerve blocks and my Botox, as prescribed by my doctor, and I had experienced, I would say, three to five migraine breakthroughs since this Truxema dose per month. Three to five breakthroughs per month. On the Rituximab I was only having one to two.

Ali: 26:15

Insurance needs to hear this. I hate them so much Like they need to hear this. So have you spoken to your insurance and said all this and they're still like we're not going to?

Riane: 26:23

One thing that I've learned with my rheumatologist and I'm so grateful and this is the reason why I'm saying you have to have an 18 because my rheumatologist told me you let me know if I need to put in a new referral, a new prescription for the rituximab. I spoke to Infusion Center. I do have to put in a new one. So she actually got on the phone with my insurance company and she said if you guys don't approve this, I'm going to have a peer-to-peer review as to the reason why she needs to be on rituximab, because it wasn't just a neuropathy pain that got worse and the chronic migraines, it was my radiculopathy in my spine, it was my lumbar decompression on the bottom of my spine, it was the pelvic pain that I've been experiencing, the neuropathy pain in my feet, and I told her everything was just going haywire and I'm having like dry coughs again and dry eyes. And I told her my skin is 10 times drier. It's not worth it. It really isn't. It's not worth it.

Riane: 27:28

And I was just really grateful that I stuck my appointments to where it's in between treatment time. So I tell all of the doctors I'm meeting with what is flaring and what is going on that way, if it's in their notes and they refer back to my rheumatologist, she can just pull from those notes when she has to do the peer-to-peer review or the peer-to-peer, and we already have the proof. She doesn't have to scramble, she doesn't have to do extra work, she can just pull the notes and be done with it. She even had to fight to get me on the Rituximab, the first.

Ali: 28:03

Of course.

Riane: 28:04

That's ridiculous.

Ali: 28:05

It's just so annoying.

Riane: 28:07

We went through azathioprine, methotrexate and Enbro and none of it was working Like it would work and then it would stop working. So it was just. It was crazy.

Ali: 28:22

That's crazy. Can you tell us what the rare disease you have is again and what it does, like what it does to you?

Riane: 28:24

So the type of rare disease I have is EGPA vasculitis. It stands for eosinophilic granulomatosis, polyangitis vasculitis. So vasculitis is made up of different categories. So you have the large blood vessels, the medium blood vessels and then the medium to small blood vessels With anything under the C-ANCA, p-anca categories. There are specific conditions under them and what the C-ANCA stands for is your neutrophils in your blood system. And so, with the type of vasculitis I have, it affects my lungs, nose, skin and I believe, if I remember correctly, it has three stages. So the very first one is having to deal with asthma and some sort of allergies so I've always been allergic to dust and mold and then, when it gets into the second stage, really you're dealing with worsening of what's in stage one of your symptoms. And then, um, the very last stage, from what I understand, is granulomas appearing in your blood vessels. What exactly is that? The best way I was explained granulomas is um, they look like blood clots.

Riane: 29:42

Oh my gosh. They can end up in your tissue. They can get as big as like, um, you know, like adhesions in your uterus and the polyps. It can become like that. But it's kind of like endometriosis.

Ali: 29:56

You know how like that gets on your, or is that something different?

Riane: 29:59

it's something different okay with vasculitis. It weakens and destroys your blood vessels.

Ali: 30:06

Your blood vessels will weaken and narrow until you can no longer, I guess, use function with them yeah, it says a granuloma is a collection of immune cells that forms when the body's immune system attempts to isolate a harmful substance it can't eliminate yeah, so it could have.

Riane: 30:23

It can be in your lungs and your kidneys, the way my rheumatologist put a gpa to me.

Ali: 30:30

It's the little brother to gpa that's rarely paid attention to and studied is this why you had pneumonia for like six months, because it the your lungs yeah as a kid, yeah on top of all of this, does it cause any like inflammation or arthritis type stuff too what?

Riane: 30:48

does, because I have no idea the etiology as to how it affects the joints. But um, I've had multiple cases where doctors told me oh, it's inflammatory arthritis, it's multiple joints, you have polyarthritis. They went back and did a rheumatoid arthritis panel on me. They realized that I had bone remodeling in my x-rays and they can't understand why. The only thing that has been consistent with everything that I've done is cannabis use. My doctors and I have been looking at what organizations have been doing cannabis research with rheumatoid arthritis, autoimmune type arthritis. There are studies in mice that show bone remodeling in the mice who have rheumatoid arthritis.

Ali: 31:41

What is bone remodeling? Sorry, you guys need to ask me so when there's bone, I don't know either.

Riane: 31:47

You know, when your joints pound against each other like this and they're constantly rubbing and there's no more of that soft tissue and it starts eating away at your bones, bone remodeling on the x-ray shows as new bone growth. Okay, so that's what they call bone remodeling. When I was told I had in my feet and in my hands, I said the only thing that I'm doing differently and it's been consistent is the cannabis use. So many of my doctors told me, just stay on it because we don't know how it's helping your body. And it was this time last year. I had four of my doctors two of the neurologists, my rheumatologist and my pulmonologist tell me why don't we pull back on the cannabis and see how well your body responds to just the allopathic medicines? And you know you pause everything else. And they said, okay, so we did it. We did a controlled experiment.

Riane: 32:42

So what happened? I did have one or two more migraine breakthroughs that month. A month after I stopped I had a lot of gi issues. My nausea was worsening, lack of appetite you couldn't really hold down. Food happened in month two and then in month three I noticed I my brain works so differently. I compartmentalize my pain and my symptoms, so that I don't have to deal with everything else yeah I believe in month three, was when I noticed that my joints were getting more and more inflamed.

Riane: 33:20

That's when I started feeling the neuropathy pain, the burning, the tingling, the pins and needles. With neuropathy pain you can't, you really don't know where your feet are peripherally. I went to turn one day and I didn't see the table in front of me and I clipped my toe and I had to report all of this back. I have notes on my phone, okay, um, I don't even use an app, I just use my notes and I just write everything down that's all you need, yeah yeah, I sent it to my doctors and they said, okay, um, let's taper you back onto the cannabis, but let's just do it.

Riane: 34:00

No, well, you'll dose this amount for this amount of time and then we'll see how long it lasts. So my doctors have been instrumental in teaching me how to use cannabis to relieve.

Ali: 34:11

That's great that is great.

Riane: 34:13

That's great that they're doing that they told me can you find the rest of your journal so we can scientifically look at everything and discuss how we can move forward with cannabis use in your treatment plans? When we did, it was actually really exciting to see that I just take a dose of cannabis and I let it be for like two or three days and then I see if my body needs more and then I'll dose again. But it's not like every single day I'm taking cannabis. No, it's not like that. There's a whole process that goes behind it.

Ali: 34:44

So yeah, and what is your favorite way to take it?

Riane: 34:47

Edibles, edibles, okay, yeah, yeah, edibles. And then we have this thing called cannabis drinks here in Hawaii.

Ali: 34:54

Yeah, yeah, have some up here too.

Riane: 34:57

That's my second favorite way of doing that. My favorite mix is actually the Rick Simpson oil. So I do the Rick Simpson oil, I rub it onto my gums and I take hash chocolate and I couple it with that. The reason being is because it titrates your pain relief within over a span of an hour Because of the edible. You're feeling it right away, within minutes, versus having to wait 30 minutes to two hours for the RSO to kick in.

Ali: 35:24

Yeah, I went down this path earlier this year and then I stopped, but I was thinking of getting back in. But what do you recommend to those who are thinking of using cannabis to help? What would your recommendations for that be, especially if they're like me they're nervous to get high, but we would love to relieve the pain, like. What is your recommendation on that?

Riane: 35:44

It's really funny that you're mentioning this, because I'm working on a sheet. I have a PDF form that I'm working on Canva right now. It'll be done by the end of this week, hopefully. I'm excited that teaches people the different acronyms behind cannabis. It teaches you how to microdose. So I have my chocolates here I'm going to show you. Sometimes it looks like this it's like a ball ball.

Ali: 36:10

Yeah, it's like the size of a ball ball. I love it.

Riane: 36:13

What I do is I cut it in half and half again. You have four pieces of this chocolate and when you do that you're going from okay, it's 10 milligrams of thc. So when you cut it in fours, it's 10 divided by four. You get the amount of milligrams that you're ingesting. And I suggest that if you're starting off on edibles, always start with a microdose. That's the very lowest dose of thc you can start and see what part of your body is being helped.

Ali: 36:43

Is it the?

Riane: 36:43

arthritis? Is it your anxiety? Is it both? Is it insomnia? Have you not eaten today? If so, is it helping with your appetite? If you haven't felt anything in an hour, take another one. And that's the reason why it's microdosing, because microdosing actually helps you pinpoint. It's helping with my arthritis pain. It's helping with my neurop. Actually helps you pinpoint. It's helping with my arthritis pain. It's helping with my neuropathy pain, or it's helping with my insomnia, like I can't sleep.

Jen: 37:09

So you know, basically it's going to. It's going to help pinpoint how much you need to take to help that particular area that you need to help. Yeah, yeah. So that's kind of neat.

Ali: 37:19

I like microdosing. I like that a lot. That sounds great.

Jen: 37:21

I think that's a really good way of explaining it, cause you know, I, I yeah, this is not about me, but I grew up in this weird, weird life and family of like I grew up Mormon y'all until I was 12. And so you, you know, to go from that point in my life to where I am now, it's it's been an interesting experience and challenge. There's people like me out there that are like I don't know, is it okay for me to do CBD? I don't even know what is microdosing. Is that okay for me to do? I mean, there are people out there that are curious but they're not sure, but they want to know and they don't know how to ask. I think something like this and hearing what you have to say is probably helpful.

Ali: 37:58

Yeah.

Jen: 37:59

Thank you.

Ali: 38:03

Yeah, absolutely, because I wanted to try and I was really nervous because I don't like feeling out of control, because I have anxiety. So I kind of did the microdosing. I started small. I had a tincture and it was only 19 to 1. So like 1 THC, 19 CBD, but yeah, I just like kind of worked my way up with the tincture and it wasn't scary, so yeah.

Jen: 38:20

My mom brought me an oil to use on my skin when I was first diagnosed with pustular psoriasis. I was terrified to use it because I didn't know anything about that kind of stuff. I think I took like a cotton ball and barely dabbed it on there and then just kind of barely dabbed it on my skin and then I was like it's not going to do anything and I was so afraid and I ended up throwing it away.

Jen: 38:41

I never used it, Sorry mom, but I have had the creams and things that I've used. Now, like I you guys probably hear me talk about budding botanicals all the time they have this face lotion that I use that smells like chocolate or something. I asked her what she uses and she's like you're never going to believe it.

Ali: 39:00

It's scented with monkey farts. That's the name of it.

Jen: 39:01

That's the name of it. I'm like ooh well, whatever monkey farts is, I'm into it. I'm in love. I want it all over my face. I have been finally willing to try some things on my skin and it's helpful, but you know, some of us were a little scared. Okay, I'm looking at the fact that we have not even asked you any of the questions, but you've been so great about just talking about all this stuff without us even having to bring it up I love it.

Ali: 39:29

I could talk all day.

Jen: 39:30

My goodness, I'm so interested I know I'm trying to look like. Are there any of these questions we should be asking?

Riane: 39:35

uh, we kind of asked these. I'm so happy we just had a conversation.

Ali: 39:39

Yeah, all of this yeah, yeah, I think it's really needed.

Jen: 39:43

Yes, oftentimes we get so caught up in the interview process, but really a lot of times it's nice just to have a conversation with your Spoonie sisters and talk about what it's like living with what we live with.

Ali: 39:55

And, yeah, honestly, everybody goes through the medical well, they might not go through medical burnout, but everybody that I know goes through the whole. I want to go off medication Like we've all I've done it, like everyone I talked to has done it where we're just sick of it. We want to get over it. Like it. We kind of feel I don't know if all of us I felt like a lab rat in the beginning of my diagnosis journey, where my rheumatologist just she didn't have the bedside manner, which is fine, but that's like what I need, that's what I crave, that's my personality and I just felt like she was giving one drug and it didn't work.

Ali: 40:25

The next drug it didn't work Like I've been over on over eight drugs infusions, injections, pills, like and it got to the point where I'm like I just feel like a lab rat and then I completely went off everything. Cause're now advocating that people shouldn't do that 10 year break or you should at least talk to someone before you do it, or maybe to balance both natural remedies and medicine. So yeah, it's really interesting.

Riane: 40:57

I mean the balance is so important because all of my doctors have told me the less pills that you are on, the better it is for you. I told them, ok, so you really want me to do targeted therapy. That's basically what my goal with all of my doctors have been since the get. It's targeted therapy. I'm so grateful for that because you know you're just targeting not just the symptoms, you're targeting the condition itself.

Riane: 41:27

With eGPA, I'm not just on rituximab, I'm on Trilogy to control the isonophilic asthma. I'm on Nucala to help me with my immune response and with my skin problems, to help with the Trilogy on the back end so that I don't get sick. And you know, I think I've reduced a whole bunch of my meds. I went from 15 to maybe six now because I kept saying, okay, I don't need that one, we don't need this, I'm fine without it. We've actually talked about reducing the hydrocortisone for my secondary adrenal insufficiency. My doctor literally told me over the phone before surgery in November Rianne, you know what you're doing. Just, if you're going to taper down to 15 in the morning, then do 10 or 5 in the afternoon, she's like I want you to tell me and she's like I don't need. I want you to tell me what you've done. I don't need to hold your hand to do that.

Riane: 42:26

Because you understand your body better than I do, so you need to figure out throughout this healing process what you have a great care team.

Ali: 42:33

I love that.

Riane: 42:34

You know, don't be afraid to fire your care team.

Ali: 42:38

Yes.

Riane: 42:39

Fire them If they don't listen. Listen to you. They're not answering your questions and they're giving you crap about your symptoms.

Jen: 42:46

Walk out that's right rianne have I given you that sticker yet which one? It's okay to fire your doctor? No, you haven't I haven't. Okay, don't let me forget, I'm gonna mail you one because you need one I love that I should make an, I should make it into a magnet now everyone can have it on their fridge.

Ali: 43:02

Yes, don't be afraid.

Jen: 43:04

I think what you're talking about, too, is bringing up what I'm seeing at a lot of the conferences. They're talking a lot about patient centered care, and they want us to work with them. They don't want to just boss us around on what to do. They want us to be just as invested.

Jen: 43:21

They want us to do just as much research, because it is our body at the end of the day, it's incredible that you've got this care team and that you're already doing exactly what it is they're all telling us to do.

Jen: 43:33

And I'm seeing this in the community so much lately and I'm proud of everyone that's getting more on board because, okay, I am a product of 1980s. Okay, this was a time growing up in the eighties and nineties as a child and teenager. We grew up thinking, okay, you go to the doctor and you get your vaccine. You go to the doctor because you have something and they diagnose you with something and they prescribe it. Then you go home and you take that something and then you get better. That's what we always believed. I think that's why I had such a hard time when I was dealing with my RA in the beginning, because I was like, why don't you just give me a pill and fix me? It doesn't work that way, people. We need to learn about what's going on with us, and we have to be invested in helping ourselves.

Ali: 44:16

Yes, that's so true it is, and listening to episodes like this and learning how we can incorporate natural remedies into the mix, because there are doctors who won't mention anything natural. I learned all about my natural remedies via my friends online. But, rianne, would you recommend, do you still go to your Chinese medicine doctor? Do you recommend that, maybe to Spoonies?

Riane: 44:38

I do. My really good friend is who I go to. He's a chinese acupuncture doctor here in hawaii. He's helped me with my nerve pain and the pain itself. I get to a point with cannabis sometimes where it stops working as effectively as it always has because I'm at the highest tolerance. I can go and do a huge dose of RSO and chocolate and go the whole day feeling fine, but it will take my body a while to feel the full effect. So I do recommend acupuncture and cupping More acupuncture than anything.

Riane: 45:14

You know your symptoms, especially if you deal with nausea and lack of appetite. Those are the things that actually help. I know, before my rituximab treatment I get, I asked for the accutabs and he puts it on the nausea line and, um, I press it when I'm getting my treatments done so I don't barely feel the nausea. There are so many things out there. But always be careful on who you go to, because you never know who has good intentions and who doesn't. Especially when you're walking into the realm of Eastern medicine. Energies are so important. So if you don't feel right around that person, just leave and go.

Jen: 45:52

Look for somebody else For our listeners that are in Hawaii. Yes, you're in Oahu, correct? Yes, okay. And so how would they get in contact and find this amazing? Person that you're going to.

Riane: 46:05

Go to my page. Okay, he's all over my page. Enter Chi. Hawaii is his business. He's a really great person overall and just a great doctor. Does he have a website? Yeah, I think he does. I think he does.

Jen: 46:18

I'm also selfishly asking because we're coming back in June he has a best way is Instagram.

Riane: 46:25

Go look for the Instagram. It's energy Hawaii. You can't mix it.

Jen: 46:28

I mean, I don't know if I want to get cupping done while I'm in Hawaii, because then I'd have to wear a swimming suit and look ridiculous.

Ali: 46:34

I look amazing. I love showing off the cupping.

Jen: 46:38

I've done it before. I came home and my husband was like, oh my gosh, what did you just allow them to do to your body? I was like you have no idea how great I feel.

Ali: 46:45

I want to do this again.

Jen: 46:46

My husband thought I was nuts. But if you haven't experienced it and haven't- felt the benefits.

Ali: 46:51

It's going to be hard to understand.

Jen: 46:53

Maybe this time, when I come in June, I can actually see you. Yes, we're going to be there for six days. I'm going to have my entire family, even my grandson.

Ali: 47:03

Oh my God, I'm jealous.

Jen: 47:04

You should go, Allie.

Ali: 47:05

I know, oh my God, that sounds amazing. I'll go to Guam and then I'll come.

Jen: 47:10

Although I'm thinking for Allie. It would be a really long flight because you are on the opposite side of the United States.

Ali: 47:15

I am. I'm in New York, it would be far.

Jen: 47:18

That would be a very, very long day of travel. For me it's only like five hours Wow.

Ali: 47:24

I'm jealous. Oh, my goodness, I wish.

Jen: 47:26

But then again, think of all the amazing places you can go. That would be really far from me, or Rihanna.

Ali: 47:31

I mean what? The East Coast? I mean? There are the islands down there, I know.

Jen: 47:35

Just for me to fly to DC took the whole freaking day.

Ali: 47:37

Yeah, yeah, I could drive and be there in five hours, I think, or four hours.

Jen: 47:41

Before I forget, let's let's talk about your poetry book. It's called Blurred Vision and it captures raw and personal side of your experiences. What inspired you to write it and what impact do you hope it has?

Riane: 47:54

on readers. Well, blurred Vision was my very first publication. Blurred Vision came out because I just came out of a domestically violent relationship with my childhood best friend. I was going through all the fields. I was going through all the emotions. My new book that's coming out. It's called Bouncing Between Two Titles right now and it has something to do with me and the moon and it's either gonna be called moonlit love or conversations with the moon do we, do we get to help you vote?

Riane: 48:28

yes, I will put it out later okay, I like conversations with the moon.

Riane: 48:31

That like really gets me it's gonna have about three to four chapters in there that talks about blurred vision and um, I have been a big, big person on. There is so many sides to the truth and you can have your version of the truth. The person you're talking to can have their version of the truth and it's always the duality of life that happens that way. My book is going to be specifically about my journey post trauma.

Riane: 49:00

A lot of the dv advocates and a lot of the advocates in the trauma realm they talk about trauma itself. Right, they don't. They talk about the action and maybe a month after, but what they don't talk about is the lifelong journey that the survivor has to go through for the rest of her life or the rest of his life. That's a really good point. I know I'm going to make a lot of people uncomfortable with this book because I don't just talk about the survivor's point of view. My ex, who was very abusive, grew up in an abusive household. He never got the help that he needed to prevent him from becoming that.

Jen: 49:44

So my guess is you talk about it from his perspective as well?

Riane: 49:48

From a perpetrator's perspective. Because when I was doing DV advocacy with my mentor, we didn't just talk to the women who were survivors of DV, we talked to the men too, who suffer from just this God complex that they know that they need to work on but they don't have the mental capacity to work on it and they get left in the dark, they get left behind. And even women women, we have that too. And you know, when we're assertive and we're laying down our boundaries, we're considered aggressive. But when we snap and we start throwing things, we're looked at as abusive. But we see it easily in women that way. We don't see it easily when it comes to men.

Riane: 50:35

I think with my book it's just all around healing, because I went through a moment I'm not going to lie where I snapped and I had aggressive tendencies. I had tendencies that borderline abuse, because I was so used to it, my brain was so wired that way. With my new book I'm hoping my readers can read it and, you know, relate I hope it can relate to whatever part of their life they're going through with with this.

Riane: 51:04

I talk a little bit about abuse in the beginning. I talk a little bit about, you know, essay, but I also talk about the after. I really talk about the journey on how every night I go to bed now and I don't even take that heavy book and I look at my past. I only bring it out every once in a while to remind myself how far I've come, and I'm translating that into a book for everybody.

Ali: 51:27

Oh my gosh, I want to get it the minute it comes out. You need to keep me updated, please.

Jen: 51:31

Okay, is there a timeline for it?

Riane: 51:34

Well, I'm looking at middle to end of summer next year.

Jen: 51:38

Okay, keep us in the know and when it comes out, we can do another episode and we can add it to the show notes here. Oh, that'd be awesome.

Ali: 51:45

And I want to read it too, first and then hop on the call. Oh my gosh.

Jen: 51:48

Yeah, thank you. By the way, we, we, uh. Well, I'm in their book club, but I haven't actually attended one yet, but I'm in the book club.

Ali: 51:56

Oh no, I forgot about our book club. Well, ryan, we'll read your book when it comes out, because I need to get back to. Oh my God, I forgot about it. So, yes, I'll start a new book club.

Jen: 52:10

All right. What is the best way for people to get in touch with you? My IG page.

Riane: 52:15

It's evolving. My wife and I are starting our own podcast.

Ali: 52:20

I'm getting excited, that's awesome.

Riane: 52:23

Yes, it's perspective from caregiver and patient, from wife to wife. It's really just about conversations and talking about the things that we have to deal with and what we go through. I'm excited.

Ali: 52:39

I'm so excited. I would love to hear your wife's perspective on when she had to take you to the ER because you couldn't move, and I would just like I'm sure a lot of people's caregivers like my mom was my caregiver would love to hear like her side of the story and see what was going through her mind during that time and what tips and tricks she can give to our caregivers during this time. So I'm very excited for your podcast.

Jen: 53:00

If you need people to come ask you questions, Allie and I will be able to ask you questions.

Ali: 53:06

Yeah, we'll come on your show and ask you questions, you and your wife questions.

Riane: 53:12

Yeah, I'm really excited for it, because there's not enough Brown people in this world.

Ali: 53:18

None.

Riane: 53:18

Our mentalities are built different you know, we, we got to get up, we got to move. We're taught differently. You know we're pushed and challenged at a young age to you know you're sick, okay, but get up, do you have a fever, are you coughing up blood? But if you can still move, you can still do chores.

Jen: 53:37

It's just not talked about.

Riane: 53:39

You're told to hide it act like you're fine, keep moving, you've got it. It's not talked about and with us doing a podcast like this, I really hope that more people who look like me, who look like my wife, come forward and they start talking about. You know their problems and you know the things that they go through. In our, in my culture and in my wife's culture, it's hard to talk about it because it's not necessarily swept under the rug, it's not necessarily not talked about, but it's um taboo to do, taboo to actually talk about it on platforms like this yeah and going about it has to have some sort of sensitivity.

Riane: 54:22

So that's the reason why I'm taking my time evolving Rianne's Corner into something more personal, and when I start the second IG page for the podcast, it's going to be more sensitized for the specific audience we're talking about.

Jen: 54:36

I think I know two people that have your back on this.

Ali: 54:39

Yes, yeah, I'm ready to help in any way that I can.

Jen: 54:43

Anything you need, we've got you. Thank you, we have gone way over.

Ali: 54:47

Oh my goodness, we have. Oh my God, it's so fun.

Jen: 54:51

I have to thank both of you for your time. This has been such a joy. Of course, we can't wait to have you back on.

Ali: 54:57

Oh my gosh, it was so nice to meet you and chat with you, I can't wait. Yes, yes, we're definitely going to keep chatting in the future.

Jen: 55:03

Yes, Until next time don't forget your spoon.