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Living with an Invisible Disease - The Hard Truth

Dwan Bent-Twyford Season 7 Episode 406

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The world of invisible illness is a lonely place where "you look fine" becomes a painful refrain from well-meaning friends and family who can't see the war raging inside your body. For six years, I've navigated life with rheumatoid arthritis—an autoimmune disease where my body attacks my joints, causing inflammation, pain, and progressive damage from my fingers to my hips.

This deeply personal episode peels back the curtain on what it's truly like living with chronic pain that others can't see. I share my diagnosis story, the countless medications and supplements that fill my daily routine, and how I've had to completely reimagine my identity. From the steroid shots that provide temporary relief to the heated blankets that have become my constant companions, I walk you through the practical realities of managing an autoimmune disease.

But beyond the physical challenges lies a profound psychological journey. I've discovered what I call the "migraine hack"—how people readily show empathy for conditions they understand while dismissing autoimmune flares with a casual "can't you just suck it up?" I share the valuable Column A, B, C exercise from the Mayo Clinic that's helping me accept my new reality: Column A represents who I was before, Column C reflects my worst days, and Column B is the new identity I'm creating between those extremes.

Whether you're battling an invisible illness yourself or love someone who is, this conversation offers both practical insights and emotional validation. For those suffering, you're not alone in this struggle. For those supporting someone with chronic illness, understanding is the greatest gift you can offer. Because when someone says they're in pain, believing them costs nothing—but dismissing their experience costs them everything.

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Dwan Bent-Twyford:

Hey everybody, welcome to another episode of The Most Dwanderful Real estate Podcast Ever. I'm Dwan Bent-Twyford, I'm your host. I took my name Dwan and wonderful and made a new word Dwanderful. So this is the most Dwanderful Real Estate Podcast ever. And today we're going to talk about something completely different, excuse me. We're going to talk about people that live with autoimmune diseases. Do you live with ... Sorry, I got a frog in my throat Do you live with an autoimmune disease? Well, I do so. Do you live with an autoimmune disease? Well, I do so.

Dwan Bent-Twyford:

I'm going to be very vulnerable with you today. I'm sorry it's so hard to talk about this. I'm going to be very vulnerable with you today. I'm going to talk to you about what it's like living with rheumatoid arthritis. Now, I know many, many, many, many, many of us suffer with autoimmune diseases. I was diagnosed six years ago with rheumatoid arthritis, so today I want to talk to you about the struggles that I know that we all have that have any autoimmune whether it's rheumatoid arthritis, lupus, sjogren's, fibromyalgia, they all fall under the same umbrella of autoimmune. So I want to talk to you today about what I go through. I'm going to show you all the things that I take and I'm going to try to see if I can offer some words of wisdom or some comfort or something. So, because I'm going to talk about myself so much, I'm feeling really emotional even doing this. However, I'm in a flare-up today, so I thought today would be a good day.

Dwan Bent-Twyford:

Now you look at me and you go gosh Dwan, you look beautiful. Look at your hair. Look how perfect your eye makeup is today. You're dressed nice. Look at your beautiful background you look fine. You look fine. How many of you here? Oh, you look fine. I don't understand. You don't look sick. I gotta tell you. I swear to God, if one more person tells me I look fine, I think I'm gonna start strangling people. It's like yeah, I look fine, I look great. I look great today. I feel like shit, so bad. But I've been wanting to make this video for a while.

Dwan Bent-Twyford:

I started recently following a few people on TikTok that talk about living with autoimmunes and how everybody from the outside world looks at you and says oh, you look fine, you look fine. What's wrong with you? Why don't you feel good today? You look great. I don't understand. Can't you just suck it up so we can go do this thing and you know what? No, we can't freaking suck it up. We're tired of sucking it up. I am tired of other people not understanding and me having to constantly make excuses for things. When I say to somebody oh, I'm having a flare, they're like you look good. I mean, can't you just go do this eight-hour day with me with this, what we had planned, you look fine? It's like no, I can't, because you know what, if I go off on this eight-hour day, I'm going to be in bed for the next two days. So I want to talk about this and I'm just going to give you advice from my personal experience. Take it for whatever it's worth. Hopefully this will help a few of you, and maybe it won't, but at least I think it will give people a better understanding about me.

Dwan Bent-Twyford:

So I was diagnosed six years ago, when I turned 60. I am now 66 years old and for the first couple of years I was just like oh, I don't understand why I feel that. I feel my joints, everything hurts my body and the doctor think you are making it up. We'll start from the beginning. So I got diagnosed when I was 60 with rheumatoid arthritis.

Dwan Bent-Twyford:

Now, one thing I do know for a fact. I don't ever tell people I have rheumatoid arthritis. I say to people I've been diagnosed with this Because the Bible does say your words have power. And the words you speak, your mind believes whatever you tell it. So if every day I go, oh, I have RA, I have RA, oh oh oh, my mind is like, oh, she's got RA. Oh my gosh, we better do something. So I never claim the disease. That's number one. I don't claim the disease. If you ever meet me out, like at a workshop we do lots of workshops all over the country or anyone that knows me, I always say I've been diagnosed, I'm never going to claim this disease. I'm never going to claim I have RA, I have RA. Now do I have it? Yeah, do I claim it? Hell No!

Dwan Bent-Twyford:

No, I tell myself every day I feel great, like this morning, actually, this very morning, I woke up and I thought, wow, I feel really good, but I'm in Colorado and it's in the 50s so it's really cold outside. So as I got up, started moving, I was like, oh god, my hands, my wrists, my joints, my body, everything is hurting'm like okay. So today's one of those days, so. But I do want you to claim every day out loud my body is well, my body is well, my body is well. God has healed me from this. I am well. I am well. I am well Because I do know the word.

Dwan Bent-Twyford:

The Bible says speak things into existence as if they already are. And I know a lot of you like manifest from the universe or whatever you do. I am a Christian. I do not manifest. I do what the Bible says and I speak into existence. Every day, I say I do not have an autoimmune disease. I feel amazing. Today I'm going to have a great day.

Dwan Bent-Twyford:

I woke up this morning. I was laying in bed. I thought, oh God, I feel really good today. It's a good day to podcast about this. But within an hour of being up, I was like oh, my body, my joints, especially my hands. I was like, oh my God, I'm in so much pain today. So do even though I know you don't feel like it just every day just claim I am healed, god has healed me, I have a healing, I do not have this disease, I don't have it. I don't have it. And when you're talking to people about it. I think if you will just say I was diagnosed with this, instead of I have this because we don't want to claim it, we don't want to claim that we have this disease, we don't want to claim this is who we are. We don't want to claim that, so I don't You'll never hear me say, oh yeah, I have RA. You'll hear me say I was diagnosed with RA because, mentally, I'm never going to claim it, now do I have it. I'm never going to claim it, now do I have it.

Dwan Bent-Twyford:

Do I feel like crap a lot? Definitely Do I have all the symptoms All the time, every day. There's never one day where I feel like wow, I feel amazing today, ah, this is amazing. I have no days like that. I function, I take supplements and medication to get through the days, but I never wake up going ah, my body is completely pain-free, I'm healed. I have no days like that, not ever, not even one. Why can't I take that back?

Dwan Bent-Twyford:

I get a steroid shot every 90 days and for about four weeks after the steroid shot, I feel really good because the steroid shot reduces all my inflammation and I feel really good. I only get one every 90 days because that's the most my doctor will allow me to have one every 90 days. So what I have found is, normally I get them in my butt. It's a let me see. I'll tell you exactly what it is that I get. Hold on a minute. Okay, I get a steroid shot. That is let me find it. I should have pulled this up before I get on this. Okay, y'all just hang with me for a second. Okay, I get a Depo Metro 80 milligram shot in the muscle. So they do them in my butt.

Dwan Bent-Twyford:

But what started happening a couple years ago is my hips were hurting just off the chart. So I have already had a hip replacement on my right hip Because between rheumatoid arthritis, arthritis and osteoarthritis my right hip just crumbled. So I got a hip replacement. That changed my life. Honestly, it did change my life. So I do a Depo Metro 80 milligram in the butt.

Dwan Bent-Twyford:

Now I also recently had my shoulders have been hurting, like sometimes I can't lift my right arm. So this last time I told my RA doctor I said I want you to give me a steroid shot in my shoulder, cause even when I get it in my butt, my shoulder and my hip never quit hurting. So I'm going to say this is I feel like I made a discovery for myself. I got my last steroid shot in my shoulder, which is what hurts the most, like some days, some days I can like, oh, I can't even lift it up, can't even like brush my teeth. It's like, oh, my shoulder. I got it in my shoulder joint and I'm going to tell you that is the best I've felt in the whole entire last six years. Getting it in that shoulder and getting that pain in that shoulder to stop made the whole rest of my body feel a lot better. Now I'm coming up on about three weeks from getting another steroid shot and I'm already back into a flare up. So it did help. I mean, honestly, I probably had the best six weeks I've ever had in the last six years from the shot in my shoulder, because even the one in my butt it takes the inflammation out of my body and I feel better, but it never takes enough of it out of my shoulder.

Dwan Bent-Twyford:

So if my shoulder constantly hurting, then my body's going there, all my little things are going. Because autoimmune is your body attacks itself. So if you don't know what that is, that's what that is. That's what that means. So you have autoimmune, meaning like if you get a cold, all the little things in your body go oh, let's go fight that cold, we're going to kill it and get rid of it. Autoimmune is your body basically turns on you.

Dwan Bent-Twyford:

So when my shoulder hurts, all my little fighters go to my shoulder and try to fix it, but they cause a flare-up. So flare-up is like when all of your body I'm talking from my skull to the bottom of my feet everything hurts, every joint. When I say every joint, I mean this joint, this joint, this joint, this joint, my wrists, especially these joints my feet, my shoulders, my hips, my knees, the bottom of my feet, the top of my head. I'm just like oh, so a flare up is for RA anyway is your body attacks your joints because it misreads it and it reads your joints as the enemy. A cold, whatever. Your body reads the joints, my god, the joints, they're attacking us, let's go tap back.

Dwan Bent-Twyford:

And then you're just like oh, and if you have like fibromyalgia which I think I have a little bit of that too, but I'm not going to claim that for sure your muscles, all your muscles, they hurt. There are days where I feel like my arm. I'm like my arm feels like it weighs 100 pounds today, and then I can't get out of bed. Then my husband's like oh honey, you look fine. Can you suck it up? I'm like, oh my God, if you tell me to suck it one more time.

Dwan Bent-Twyford:

So with an autoimmune, your body misreads symptoms and attacks your body from the inside. So if you have lupus or like fibromyalgia or Sjogren's or RA or all there's just so, there's so many, there's so many. And you know we're the lucky ones. Only like one out of a million have it. So look at us being in the 1%. We're in the 1%ers. I want to be in the 1%ers financially, not in the 1%ers with my health. So not everybody has it and obviously not everybody understands.

Dwan Bent-Twyford:

And if you're listening, I can guarantee you you're so tired of having to tell people you don't feel good. I don't feel good today. My muscles hurt, my joints hurt, this hurts, that hurts, blah, blah, blah. And then people go you look, okay. I was like stop. So I am going to say that. Getting that shot in my shoulder joints, I went for six straight weeks and I felt amazing, like I did before, and I was like, oh, I discovered something new. This is amazing. I'm not going to get them in my butt anymore, I'm going to get them in the joint. That's hurting. So I don't know that has helped me.

Dwan Bent-Twyford:

I also made a whole list of foods. So if you look, I have a list of foods that are good for RA Salmon, avocados, sweet potatoes with honey, spinach, watermelon, edamame, eggs, anti-inflammatory things, pineapple and coconut water, salmon, avocados, all berries, all grapes, all apples, all cantaloupe, prunes, broccoli, dark grapes, olive oil, ginger, carrots, couscous, coconut meats that are okay. Salmon, chicken, buffalo, tuna, shrimp, super lean beef. The things I drink water mostly. I do make a live enzyme, drink every day Cherry juice, beet juice, coconut water, all things that help you. So I have a whole list and sometimes I go to a restaurant I'm like, oh, let me look through my food list and there's like nothing, things that are bad, anything fried, just I don't know. There's so much. Ezekiel bread is good, walnut oil is a good thing to take, coconut oil is a good thing to take and basically you have to try to cut out sugar, carbs and dairy to help your body. So do I do that all the time? No, do I try every day. And so that's just that part, that's the food.

Dwan Bent-Twyford:

So anyone with autoimmune you probably have a list of food. You haven't made a list. I actually did make a list. I read it all the time and I think, okay, I'm gonna go out, we're gonna go someplace, I'm gonna have some salmon and some fresh broccoli and you know I'll feel good. The other days I'll go like, oh, I'm craving Wendy's, like so bad, I'll get Wendy's and fries and a Pepsi and then Dr Pepper and then I'm just like, why did I eat that? Why did I eat that? So food helps. Obviously, sleeping good helps, resting helps, there's all these things that help. But I'm going to show you all this stuff I take. Okay, so, prescribed by my doctor, I take sulfazolazine. So sulfazolazine is a disease-modifying drug.

Dwan Bent-Twyford:

Some of you may be on a biologic like I can't think of a biologic right now or methotrexate or something like that. My doctor started me on sulphosadazine. They have since asked me to move to methotrexate and I got to tell you I tell my doctor, I'm like I'm 66 years old, my aunt is 86. My mom is 89. And my other aunt is 98. My other aunt, dora, was 102. I said I have a lot of longevity in my life.

Dwan Bent-Twyford:

So for me mentally, when my doctor was like, hey, we should start your methotrexate, it's stronger, I'm like, yeah, but listen, methotrexate is like the last defense. For RA, for a lot of autoimmune diseases, methotrexate is like the last defense. And then you're giving yourself a shot every week and it's got chemo in the shot. And I told my doctor I said, listen, I am telling you mentally I cannot take that. In my mind I'm like, okay, I'm on this sulfazalazine, which is a disease modifying whatever the DMARD stands for. And then the next thing would be like to take a biologic like humera or something along those lines, and then like the last line of defense is methotrexate.

Dwan Bent-Twyford:

But I have already met people that are my age or younger. I met two people recently in their 30s that are already on methotrexate. Well, at some point you take it for so long it stops working. So it's like, okay, but when that stops working, what else is there to take? And they're like there's nothing. That's the strongest thing I guess currently. So I just told my RA doctor. I said, listen, I have been a very vibrant person. I've been very active. I built a giant real estate career. I travel all the time. I have kids, I have grandkids. I'm that woman that's always like let's go wherever you want to go. I want to go too.

Dwan Bent-Twyford:

And I said if I mentally start taking methotrexate and I know I'm taking chemo I said I feel like mentally I'll lose the battle. And my doctor's like, yeah, you know, people can be on methotrexate for 30 years. I'm like yeah, they can. But I'm just telling you for me mentally to give myself a shot with a low dose of chemo, I will mentally feel like I have lost the battle. And when I mentally feel like I've lost the battle, I don't know where to go from there. So I told my doctor I said no, we're not doing that. I know you want to. I said I'm open to starting a biologic. But then you read about them and it's like I know a lot of you probably already take methotrexate and if you do, god bless you really. But I just know how I am.

Dwan Bent-Twyford:

Like it took me three or four years to even accept the fact that my body just doesn't function the way I want it to. I go to bed at night, I feel fine. I wake up in the morning after sleeping and I feel like a bus hit me and I mean like whoosh, like I can't move, I can't get out of bed. And I mean like whoosh, like I can't move, I can't get out of bed. And I used to feel guilty about days where I would just stay in bed all day, and so finally I was like you know what, listen, I have to stop beating myself up mentally. So I call them movie days. So I went to bed last night and I felt fine.

Dwan Bent-Twyford:

I woke up today, I feel like I got hit by a bus, like just like whap. I felt fine. I woke up today I feel like I got hit by a bus, like just like whap. Everything I have. It's been so much pain today. It's like God, I am in so much pain today and I was like you know what? This is a good day. I'm going to force myself to do my hair and makeup. I'm going to get on. I'm going to talk about this Because I on. I'm going to talk about this because I've been wanting to do a podcast about this for a long time, because I see you, I get it, I understand you.

Dwan Bent-Twyford:

I have so many of my students that have RA and they've had it since they were in their 30s and 40s. And I have people I know that have had both hips replaced and both knees, and they have so many surgeries. I'm just like, oh, please, don't let me be one of those people, please, please, please. So I do every day mentally tell myself I feel great, I feel great, I feel great, even though I feel, like today, like I got hit by a bus. In fact, I feel so bad.

Dwan Bent-Twyford:

Today I decided to make myself a little drink, which is not good, but I'm having a vodka and cranberry juice, which is not good, but I'm having a vodka and cranberry juice. It doesn't help, it probably hurts, but it'll make me feel better for a few hours. So today, at like noon, I made myself a vodka and cranberries. Well, cranberries on my list of things, so we'll start with that.

Dwan Bent-Twyford:

So my doctor gives me the sulfasalazine and then they give me these hydrocodones, and I'm not a big fan of taking any kind of a narcotic Because honestly in my mind, my God, I don't want to be a drug addict. But then when I have these days that are so painful, I'm so thankful I'll just take these, I don't even care. And then some days when I have these days that are so painful, I'm so thankful I'll just take these, I don't even care. And then some days when I'm really like off the edge, the pain is really heavy, the humidity, all of it, and I'm just, I'm strung out and my stomach's in a knot and my chest, my heart's pounding out of my chest. Sometimes I'll take a Xanax.

Dwan Bent-Twyford:

So I am not recommending you to take any drugs, but I am telling you, without having hydrocodones, um, and having the xanax option, I honestly I mean some days, gosh, I don't even know. I just I'm just like lord, can you just please take me in my sleep? But I'm 66, so in my mind, after watching my dad and my mom and my aunts and how much they travel and what they do, I'm like why am I the one? And my first cousin also has been diagnosed with rheumatoid arthritis and unfortunately, every single medication she's taken has put her in the hospital. So she lives with no medication of any kind, no steroid. No, nothing, nothing, nothing, nothing just lives with it. And when I see her I'm justid no, nothing, nothing, nothing, nothing, just lives with it. And when I see her I'm just like golly girl, I don't even know.

Dwan Bent-Twyford:

So I do take these, the sulfazanazines, every day, 2 in the morning, 1 at night. I can still go up to 2 in the morning, 2 at night. I'm trying to hold there because I don't want to. I just don't want to take the final thing, the hydrocodones on days when I feel like crap which today would be a day the Xanax. Those are only days where I'm just like, I'm just so overwhelmed mentally and I'm like crying, I'm like, oh, just like. So they do help. But here are some things that have happened to me.

Dwan Bent-Twyford:

I also want to tell you a little trick. Not saying for you to use it, and just saying this helped me a lot. I have all these people in my family, like close family, that will say things to me like well, you look fine. I don't understand, why are you in so much pain? Can't you just take some time at all? Then I have people tell me and this one, I swear to God, it makes you just want to shoot somebody time at all. They say, well, if you would just stop thinking about it, it would go away. And I'm like, oh my gosh. So I have the people really super close, like my husband, not even all three of my kids two of them, I don't think they get it. My daughter, she sees it, so she understands me. But well, you look good.

Dwan Bent-Twyford:

If you, just if you wouldn't think about it so much, you just put it out of your mind, the pain would go away. And I was like, listen, if I could put it out of my mind, I would, if I could put it out of my mind and the pain would go away. I would, if I could like, look at my hands right now. Look at these joints Like these fingers are curving. So now I'm getting these funky little curved fingers. These joints are getting big. These joints are getting big. This joints, my fingers, my fingers, are curving all over the place. These giant joints on my hands right here. I was like these are not my hands, these are not the hands I had when I was 55. These are the hands I have now. So I've got crooked little fingers, I've got these giant joints rolling in. I've got these big giant thumb joints.

Dwan Bent-Twyford:

So one thing I'd start doing is I started buying CBD. So we're in Colorado so you can get CBD, that is. This one is like 200 CBDs. Let me see, this is 400 CBDs, 800 CBDs with 800 THCs. So because it's a cream, it's not like smoking pot or you get high from it or anything like that. But I have found that when you are able to have a cbd with some thc in it, it like kicks. It kicks it in stronger and so, um, this one is, uh, rosemary. It smells beautiful, but but I take like I mean I take giant hunks with this stuff and I am sitting around my house all the time.

Dwan Bent-Twyford:

I'm always rubbing my hands, mostly my hands, because my wrists hurt so bad, my fingers hurt so bad. There's days I can't even hold my phone in my hand to text or do videos or do anything. So when I rub my joints, I rub them and I, I like, push them back where they used to be. I don't know if it's good or not my little curvy finger look at that little finger. I twist them back the other way and I do that and I rub and rub. So I probably use CBD on my hands 10 times a day and I just rub it and I rub it and I try to like that joint just cracked. I try to push the joint back where it used to be and I push them that way and the doctor's like, well, it's probably not going to help, but if it makes you feel better and mentally it does, that smells delicious. So I think you can buy CBD in every state, but I buy the CBD with the THC because it makes the CBD work harder.

Dwan Bent-Twyford:

Now I did legalize pot. I thought, well, maybe you know people take that pot marijuana for it makes them, help them with their pain and stuff. So I did try that only once. But I'm telling you I am not a pot smoker. I get so high, I get paranoid, I hear everything. So I'm like this I'm looking all over the house Cause like I hear everything, what it does is that song, the sounds of silence. The silence becomes so loud that everything is so loud that I'm just like looking around, like, oh, I heard a bird, oh, I heard this, I heard, and I'm just a crazy paranoid. So I tried it a second time. I thought, well, I'll try it a second time and low dose, and it just makes me crazy. So I cannot use that as an option.

Dwan Bent-Twyford:

I know you can get medical marijuana in a lot of states. I know you can get pills and stuff, but none of that works for me. I just, I mean, I smoked pot in the 70s because everybody did in high school, but I never liked it. I was like the person that would get invited to keg parties and I didn't like beer and I didn't like weed. So I'd go there with, just like you know, soda. I just I don't like it. So, but I thought you know what it's people say. My doctor, like I can't describe you medical marijuana. I was like no, I don't want to take medical marijuana. I already tried to smoke it twice and it made me crazy.

Dwan Bent-Twyford:

And then you're high for like eight hours and the whole eight hours I'm so freaked out and so paranoid. I'd rather just honestly have the pain I feel like, and I know that's terrible. But I'm telling you some good CBD. This does help. This helps a lot and I get the strongest one they make and I rub it. And I rub it and like, even right now, like I feel like a little better. It's like oh yeah, my fingers feel good, but in a few minutes it'll all absorb into my skin. Then my hands will be back like ah.

Dwan Bent-Twyford:

So these are some supplements that I take. I've talked to my doctor, my family doctor and my RA doctor. They're fine with all the supplements. So I do take these. These help. This is called a perfect amino and the company is it just says body health. I got it from Gary Brekka. So if you look up Gary Brekka online, these aminos are supposed to fix your gut health.

Dwan Bent-Twyford:

Now, if you don't know about autoimmune, they start in your gut and they also can start from extended stress. So when my sister was sick and she was dying from cancer for like five years I went into her house. I'd go like six weeks there and six weeks off and during that five-year time I had obviously a lot of stress because I'm watching my dad have to bury his daughter, I'm watching my mom have to bury, I'm losing my only sibling and she had twins and I'm watching everybody fall apart. So then I'm the one that's like, oh, let me step in, let me help everybody. And I did that and I only recently learned that an autoimmune disease can come from an extended period of stress.

Dwan Bent-Twyford:

So from 50 to 55, I helped my sister a lot, and then around 56, 57, 58, I started noticing days where I just like being a lot of pain all over. But it would be like a day I thought, well, okay, I don't know, maybe I worked out too hard or something. But by the time I was like 59, I was like, okay, something is really wrong with me, because I would wake up in so much pain, like I couldn't even move, and, and the thing that clenched it, as we went to New York city for my 60th birthday so me and my husband, all three of my kids and all three of their spouses Manhattan's my favorite place in the world we went for 10 days. I love Manhattan and we run like street rats. We get 25,000 steps a day when we're there. And I remember about the third day in I woke up one day I was like, oh my gosh, I'm so sore, why am I hurting so bad? Like it's not, like we even did anything besides walking and shopping. So I spent two days in my hotel room in like crazy amount of pain, had room service, had some wine, took all the Tylenol, every muscle relaxer, anything I could take over the counter.

Dwan Bent-Twyford:

And I remember thinking that moment and my 60th birthday, like something is wrong with me, because this pain, when it comes out, it's coming more often and it's everywhere and I don't understand what's happening. So we happen to be in Iowa. If you've listened to me, you know we own a bunch of buildings in Iowa and I was, so my birthday was in February, so it's like six years ago. Then in March we were in Iowa and I woke up a couple times in Iowa and I was just like Bill, something's wrong, I can't move. Today I couldn't move. I was just like I don't know my body's like blowing up, blowing up.

Dwan Bent-Twyford:

So I started Googling, like what kind of a doctor should I see if I have pain all over my body? And Google said find an internal medicine doctor. Now, clinton and I was a very small town but they have a good little hospital and Dr Anwar is an internal medicine doctor. So I made an appointment. I went to him. I said listen, I don't know what's wrong. I just wake up some days and everything I have hurts and I can't move. I can't open. I can't like open Liz, oh, okay, I can't open things. I can't, I don't know.

Dwan Bent-Twyford:

So he is very thorough. He spent like two months he ran a thousand blood tests and then he would take like fluid out of a joint and run a test and take fluid out of another joint and run a test. Then he'd give me this shot and I'd wait one hour and he'd do blood work again. And this went on and finally he said you have rheumatoid arthritis. So now me? I was like, oh, thank God, I know what is wrong with me. Now I can fix it, because you can't fix it if you don't know.

Dwan Bent-Twyford:

So the day I found out, I was so relieved. I was like, oh, thank God, rheumatoid arthritis. Okay, I have a diagnosis. Now what do I need to do to fix this? Well, then I start Googling and I'm like I start looking at pictures of all these people that are all crunched up and I'm like, oh, my God, this is terrible.

Dwan Bent-Twyford:

So he put me on steroids just right out of the gate and then I blew up. My face got round. I got that thing called the moon face. My face got that round. I gained weight everywhere. I didn't feel good on steroids. My heart would pound out of my chest, I couldn't sleep, but my joint pain went away. So I thought, okay, well.

Dwan Bent-Twyford:

So then, a few months later, bill and I are in Florida during COVID. So Dr Anwar is like listen, I cannot prescribe you drugs from Iowa because you have to do blood work to see if these drugs are affecting your liver. So now it's the height of COVID. The lockdown just started in March and I have no more medication. So I thought, okay, I got to find a doctor. So I found the Hirsch Center. If you are, I thought, even if you don't live in the state, I fly back every three months to this doctor because he, Evan, saved my life. I really feel like he saved my life. We're going to run all of our own tests. We're going to see. You know, we're not going to take another doctor, we're going to run everything from scratch.

Dwan Bent-Twyford:

They did the same thing taking fluid out of my joints and giving me shots and doing this and blood work, and blood work, and blood work. And he says you have rheumatoid arthritis. Then he said to me he said I gotta tell you something, Dwan.... He goes. You're really lucky and I'm like why? He said the average person and I know this is a lot of you because I follow people on tiktok because the average person it takes them five years and four different doctors to get any kind of diagnosis, especially as women. We go to the doctor, we say we don't feel good, we hurt, we're tired, our muscles are hurting, we ache everywhere and they're just like oh, you're fine, take this. And they just they blow you off. And I know this because I know other people who have since been diagnosed. They're like, listen, it took me like seven years to get a diagnosis. So I feel like, okay, I have this disease. I got it Not claiming it Diagnosed with it. My first doctor properly diagnosed me. My second doctor properly diagnosed me.

Dwan Bent-Twyford:

Now, within the first year or so of my doctor in Florida, I started having all these other crazy symptoms, like really crazy symptoms, like I thought I had. Dementia is actually I thought I had dementia. I remember driving over to the doctor which is one mile from my house in florida and I did not know. I came out and I did not know where I was, took me an hour to figure out how to get back home, live a mile and a half away, mile and a half, and and I started like not being able to sleep and having like all this just signs of dementia really, and that doctor had done a bunch of blood work and he said, hey, listen, you have parathyroid disease. So that's my little, this is my little pirate scar. So, and it's not your thyroid. And people go oh, I had thyroid surgery.

Dwan Bent-Twyford:

I feel like, just like, listen, you don't know what I'm talking about. It's not my thyroid, it's called parathyroid. So you have these four little nodules in here and what happens is one of them goes bad and it starts dumping calcium into your blood. Now my doctor, my family doctor for like three years up, I said well, your calcium is a little high, we're going to keep an eye on it. And then I found out that many women they said well, your calcium is a little high, we're going to keep an eye on it. And I'm here to tell you don't keep an eye on it. If your calcium is 10 points or higher, you need to go to an internal doctor and you need to get tested for a for your parathyroid. So I had a, I did an mri, I did all the stuff and my my account and I don't remember my numbers. But my calcium was like I don't know the exact numbers, it was like 90 and some other number was like 300 and something.

Dwan Bent-Twyford:

And Evan calls up listen, you have parathyroid disease. He goes you got to get surgery. We got to take, yeah, four little parathyroid diseases. One of them has gone bad and it's dumping calcium into your body and the doctors call it stones, bones and emotional overtones. So when I go to a doctor and I say that, they always giggle, they go how do you know that? So that's what my surgeon said. It's called stones, bones and emotional overtones. So typically if you have a parathyroid you start getting kidney stones. First, your bones start getting brittle and then somewhere along the way, your mental overtones. It presents itself as dementia. So I was lucky in the fact that I didn't get kidney stones, it didn't damage my bones, it went straight to dementia.

Dwan Bent-Twyford:

So I can remember sitting there and just like not knowing where I was at, not knowing what I was talking about, being really confused all the time. And you know, my husband and I we travel, we teach these workshops and I'm I'm public speaker, I'm doing these two-day workshops all over the country. I get there some days and be like, listen, where are we? Like what's happening right now? And he'd be like, well, we're in Atlanta. And I was like, but like where are we? So we're in this hotel, we're here and there. I'm like, but why are we here? And he was getting concerned because I started having these symptoms that presented like dementia.

Dwan Bent-Twyford:

So they sent me to a doctor. I did, uh, some kind of mri, where you do like the green fluid or something that shows up, and it showed that one of my parathyroids are back. So they did this little incision. They go in there with a little like a metal detector. When it finds the bad one, it goes and it blows up. So my surgeon, dr Warner I don't even know, I forgot he said he told me. He said you know what? He goes. I'm getting ready to retire, but he goes.

Dwan Bent-Twyford:

This is my favorite surgery in the world. He's just like hunting for gold. We get in there, we find the parathyroid, we find the bad one. We're all like, hey, they're all high-fiving in the operating room and we take it out and you can live without one or even two of them. We take out the bad one, he goes. It's very rare A second one will go bad, probably never the rest of your life. And so they did the surgery and when they woke up I'm like, hey, did you guys strike gold? He's like we struck gold, we found it. So I took it out and then they gave me I had to take really heavy calcium for a week because my body stopped making calcium. He goes. You'll just feel a wave will come over you and you'll be like oh.

Dwan Bent-Twyford:

So about five days after my surgery, I'm in Florida. My daughter Ayla's with me. We're sitting there watching TV and I felt, I swear to God, I felt like someone poured warm honey, like a healing, like I hear people talk about healings Over my whole body. This wave came over my body and I looked over at Ayla and I was like hey, and I go um, what's happening? Right now she's going Florida. You just had surgery and I was like what? So I look at them and I'm like, oh my God, look at my neck, I look like a pirate, like what happened? So it's like everything came flooding back, which I was so grateful because I honestly, I thought for about a year I had dementia, which was scary. So when I see people talk about dementia and Alzheimer's and although I just had like a year of that, I feel for those people because it is scary to even be sitting in like.

Dwan Bent-Twyford:

I remember being in bed at night here in my house in Colorado with Bill and being like hey, where are we right now? He's like well, we're at home, I'm like, but where are we? He's like we're at home, I'm like, but where are we? He's like we're in the house, I might know. Where in the world are we? He's like we're in bailey, like, do we live here? So my husband, he's got a good sense of humor. He wrote this big giant note and he hung it off of my nightshade. It said my name is duan bent tw Bent Twyford. I am very married, very, very married to Bill Twyford. I live here. I live there. My husband loves me and I would just laugh like seriously. But then there was a day that I thought that note's actually kind of helpful. So I got that done.

Dwan Bent-Twyford:

So having that done helps my body, like my overall entire body, helped my body a lot. And it's not a thyroid problem, it's your parathyroids. The only mineral that our body makes on its own is calcium. So what happens is it dumps calcium in too much and your body poisons you. So I have RA which is eating up my joints and my body is poisoning me and making me think I have dementia with all that. But that surgery I'm telling you that's one reason I will never give up, that I am never getting another RA doctor. I'm never giving up those doctors because it took me in during COVID.

Dwan Bent-Twyford:

They got me on some good medication. They got me off steroids daily. They found the parathyroid and just those things right there tremendously increase my quality of life. But now it's six years later and things are progressing. I'm just like, oh my God. So I started taking these perfect aminos. Now I don't have anything to do with this company, but it says they have I can't probably read half this l-leucine, l-valine, just a whole bunch of l things and it's supposed to um, try to bring your gut health back to normal, because most of the autoimmune diseases they start in your gut. So getting your gut health back where you don't have leaky gut and all that other stuff, it helps. So they do actually help. They do help.

Dwan Bent-Twyford:

Now I take I was taking so many supplements. I got tired of swallowing pills all the time, so I take these Nordic Vitamin D2. So I started buying the ones that are in gummies vitamin D2. So I started buying the ones that are in gummies. But these are just like little gummies and they're yummy, because I can't stand swallowing pills all day. So my doctor said take double, because you need vitamin D, same brand vitamin C. So I take double vitamin D's. Same brand vitamin C. So I take double vitamin Ds, double vitamin Cs every day. Then I take DK and K2. I take these every day double. I take magnesium that has the triple magnesium, also gummies. I take these at night because I have a hard time sleeping. The magnesium actually helps you sleep, so you're supposed to take two a day. I take six at night when I go to bed. That's actually helping school. Then I take B12. This little brand is Superior Source Try to make sure you guys can see these and they just look like this.

Dwan Bent-Twyford:

They're these inky, teeny little pills. I'm going to just put it on there. I'll take a couple, I'm going to just melt. Then you look like remember we had kids and we had zazzles and then you turn red. I don't know, but they dissolve. It's got B12 and B6 and folic acid things that also help.

Dwan Bent-Twyford:

And then I take this is Nordic, I think it's. Yeah, it's the same brand as these gummies. It's omega D3s. So the omega 3s help with your heart, your brain, your immune health and D3 for your bones. So I take these. They do not come in gummies, but they're fairly small pills and they've got like the omega and saponin, so the omega. So I know that the omegas, the omega threes, help with like joints and they help with your heart and your brain. They help with your immune system. So, like, this is my, this is my, all of this, all of this every day, a couple of times a day. I mean this is honestly having an autoimmune disease. It's like a full-time job. I take all those and then if I find myself in a flare-up, oh, and I start taking this too.

Dwan Bent-Twyford:

I got this from Dr Brekka too. It's methylene blue. It does something to oxygenate your water and fix your gut health, and so it's just drops you like five drops in um a bottle of water. With 10 drops a whole vial. You take a whole bottle in a bottle of water and I started just only doing this recently. So it's methylene blue, so you just drop it in. Be careful, because it's blue, it stains everything. Shake it out. Then you drink one of these. So this, you'd have to read about it. But I started taking this. I started following Dr Gary Brekka and if you don't follow him, check him out.

Dwan Bent-Twyford:

I did take the test. It's a DNA test that tells you the five major DNA points in your body. So I have two reds, two yellows and one green. So the two reds are things with my gut. So it's five DNA points of things that you were not born with. Like, you get half your stuff from your mom, half your stuff from your dad, but sometimes you don't have things. So I can't remember what all five are. I'm going to do another video after I do my health consult with them. But I got my results back. I watched all the videos. I understood it. So two of my things are. So you have green, yellow and red. I have two reds and both of the two red things are all to do with my gut Things and red. I have two reds and both of the two red things are all to do with my gut things I don't have in my body. The two yellows were more kind of gut health and organs and stuff, and then the green the one green was all the stuff mentally. So I was like okay, so I got my mind. So that's a pretty good start, I think.

Dwan Bent-Twyford:

And then rheumatoid arthritis and probably some other autoimmune diseases too can affect your organs. It can affect your kidneys. I've had UTIs I've never had in my whole life. The last couple of years I've had like six. I've never even had one. I didn't even know what that was about.

Dwan Bent-Twyford:

I take medication for that. I feel short of breath a lot. So, um, I started using this it's boost. But they sell this everywhere in Colorado because people come to the altitude. So it's got 200 hits of pure oxygen, so you just take a deep in. I buy the one that's peppermint. They have menthol, peppermint, grapefruit and just plain. I don't like the plain ones because you can't tell when it runs out. This is peppermint, so when it gets low it doesn't have any flavor. So I do these. They give you a big burst of oxygen, and so that and this together actually gives you a pretty good boost of energy for a while. And then this is my dreaded thing In between steroid shots, if I get a flare up, I have a methamphetamine.

Dwan Bent-Twyford:

Methamphetamine and this is my worst nightmare. I hate taking these. It's a SteriPak where you take six one day, five, four, three, two, one. Now for that whole six or seven days. I'm so cracked out. My heart pounds out of my chest. I can't sleep. I have so much anxiety. I feel like I'm going to have a heart attack, but it will. It. It will get you out of a flare up.

Dwan Bent-Twyford:

So when I travel, I take one of these with me. Um, I already am like and I don't take it like on the first day Like if I get like I'm in a flare today, but if I get in a flare, if it lasts longer than 10 days, I will take this, I'll take this. I don't like to take this. I feel better at the end of it, but during it I'm just so like steroids, just they, just for me. They just affect me terribly. I feel terrible, I can't sleep, I eat like a mountain lion, I don't feel good, but my joints feel better, so I'm like okay, well, my joints feel better, so, um, so this is my last resort. I don't take these. Like I said, if I'm like seven to ten days with non-stop out of break, I'll take this.

Dwan Bent-Twyford:

Now, my favorite thing is this this is a heated blanket. I now travel with a. I have this on high today and I got to tell you, of all the things I take, the thing that makes me feel the best is having this heated blanket on high, because it like relaxes my joints and then, at night, I roll my hands up like a mummy and lay them on my chest and I roll my hands up and I sleep with my hands in this heated blanket the entire night. So now when I travel, I have a suitcase that's got my blanket. It's got all those prescriptions and things I take. It's just so much stuff. I have a whole suitcase for RA. It's ridiculous, but I wrap my hands two or three times around and then so I rub the CBD on my hands, turn the blanket on high and if I don't use it on my whole body, I just roll it up and my hands are in there and I just sleep on my back like a mummy. Honestly, this helps me more than anything. Like right now, I'm just like, oh, I put the heat on and I just immediately I feel better and when I have days with like high fatigue and things like that, I'll put on two of these and I'll watch movies and stuff for the day. But I still have this wrapped around my waist and my legs right now. So the heated blanket is on. So those are the things.

Dwan Bent-Twyford:

Now, some other things that have happened. I had the parathyroid. I had to have my hip replaced. Since then, my other hip is showing some signs of deterioration. This shoulder is showing some signs of deterioration.

Dwan Bent-Twyford:

And a few months back I started getting blinding migraines. And I don't mean like a headache, I mean blinding migraines Like I't mean like a headache, I mean blinding migraines like I could never sit in front of these lights. I would just be in my room with like an eye mask on and sometimes have the tv on just on the voice. I couldn't look at it because I can't. I can't the lights, I can't do the lights. And being new to migraines, I was like, oh my God, what fresh hell is this? And I've had a few migraines over the last six years, but a few months back I had like 30 entire full days blinding. I had ice pack on my neck, ice pack on my head, a little sleep mask. I'm in a dark room. I'm just like, oh my God, Bill, I don't know what's happening. I can't even. My room's like a bat cave, I can't even have the lights.

Dwan Bent-Twyford:

So I went to him and I thought you know what, maybe I'll go to my eye doctor that's what I should do to see if something's wrong with my eyes. Well, fun fact, the RA has caused me to get two cataracts in this eye and in this eye I have a spot that goes all the way through my eye that's just completely dry, just a dry spot, like if you took a needle and went through your whole eye. There's a spot all the way through that's bone dry from the RA attacking my organs, which is my eyes. I got two cataracts on this side. So I'm like, oh my God. So my eye doctor's like no, so he gave me new glasses. These are my new glasses there. So this side is different than this side.

Dwan Bent-Twyford:

And he said well, ra, the steroids, the steroids, he goes, the steroids have caused you to have cataracts. So we got two pretty good ones on this side and on this one I have a whole piece just all the way through. That's just dead. There's just a dead spot in my eyeball. I was like what is that? He's like that won't go away.

Dwan Bent-Twyford:

So then he said to start using refreshed tears and sleep with an eye mask so it keeps my eyes shut. I got to tell you something. I put those tears in. I put on a sleep mask that keeps my eyes closed at night, because all of us open our eyes a little bit at night, and so it was causing my eyes to get dried out. I'm like, okay, so I already had a hip replace, I already have problems with my eyes, I definitely don't want to lose my vision.

Dwan Bent-Twyford:

And now I got a dry spot and it's like in my shoulders. Like now I got a dry spot and it's like in my shoulders like oh my gosh, and I'm 66 and like in my mind I'm like I'm gonna live to be 90 like everybody else in my family. So I've got. And I'm like, oh my gosh, I have so many years left to have all these issues. But let me tell you something that happened and I do a lot of podcasting and I make, make plans to go do everything With my kids, my grandkids. I always say, yeah, I'm going to go, because in my mind I want to go, I want to go and I want to do all of the things. And then I wake up and I feel like I got hit by a bus. So I noticed over the last six years people are like, oh, but you look fine and someone.

Dwan Bent-Twyford:

I took a trip with someone in my family. They're like you know, dawn, she just seemed fine and she laid in bed all weekend. I just don't know what was wrong. She just didn't want to do anything. It's like because I was in a flare up, like how do you not freaking understand that after all these years? But something odd happened I had to cancel a bunch of podcasts because I had a migraine. So I called my podcast guy and said listen, tell them I can't do it because I've got a terrible migraine. Do you know that? Every person wrote back and said oh my gosh, dwan, I know migraines, I've had them. My mom, my sister, they have migraines. It's so debilitating. You just take your time, you stay in bed, you rest. When your migraine goes away and you're ready to do it, you just let me know.

Dwan Bent-Twyford:

And I was like, seriously, if I say, oh, I can't do today, have a flare-up, they're like okay, well, can you not? I booked my time off my calendar. Can you not like take a time at all? Because people don't understand. Like we all know, a flare-up sucks. Like you don't even want to get and go to the bathroom. You don't want to eat, like my jaw sometimes it hurts to food. The last thing I want to do is take a piping hot shower and wash my hair. I'm like no, I don't want to do anything. And all of a sudden people were like my poor thing, you have a migraine. So I thought you know what? I cannot believe the difference. And so now, if I?

Dwan Bent-Twyford:

So now, when I cancel stuff, I just tell people I woke up with a blinding migraine. You know I don't have it. So if I'm in a flare right now, someone says, hey, let's go do something. I say, oh, let's not get a blinding migraine. Everybody's like, oh, you poor thing, you take care of yourself, do whatever you need to do, just let me know when you feel better.

Dwan Bent-Twyford:

So all of a out, after six years, if I tell someone I have a migraine, they're sympathy, sympathizing and being like, oh, sending love and prayers. And if I say I'm going to flare up, they're like okay, well, can't you just suck it out for a little bit? So now I lie. I'm not saying don't lie, I'm not saying lie. I think it's one of 10 commandments I don't do that. But I find that for other people around me that don't get it if I tell them, oh, my gosh, I woke up with a blinding migraine, they're like oh, honey. So now when I'm having a really bad flare, I don't want to go anywhere, I just tell people. I say I woke up with the most blinding migraine too. I'm going to have to spend the day in bed today. I say I woke up with the most blinding migraine today. I'm going to have to spend the day in bed today. And everyone's okay with it. No one tells me to suck it up, no one tells me to take Tylenol, no one says can you just make it through? They all go, oh my gosh. So I'm thinking that for some of us with these autoimmune diseases, especially that like the well, all of it, the RAs, the lupuses, the fibromyalgia Fibromyalgia is bad too. I have a friend that's got that and it's just everything hurts your muscles. Like you pick up your arm, like, oh, my arm weighs 200 pounds today and but again, you look fine.

Dwan Bent-Twyford:

When I had my hip done, I had to use a walker for like six weeks and people would move out of the way and hold the door oh, my poor thing, are you all right? And I was like, oh, okay, I had a cane about two months before my surgery. Then I used the walker and then I used the cane for a while again and I was like, oh, everybody in the world is like so sympathetic because you look injured, because you have a cane or a walker, and they go oh my gosh, you poor thing, what can I do? You don't need to drive Let me. Oh, no, no, no, no, no, I'll whatever, I'll come to you whatever you need. And I was like, okay.

Dwan Bent-Twyford:

So the problem with autoimmune diseases is we look fine, I look fine, everybody looks fine. You got a cane or a walker or a migraine. And people are like, oh, poor thing. So, and I understand, I mean I get it. I have a friend that has like three autoimmunes and she looks great, but I know how bad she feels. So when she was like, hey, I can't make it, I'm like, hey, don't even think twice about it, don't worry, no worries at all.

Dwan Bent-Twyford:

So I still make plans. My husband and I will travel. We'll go do a workshop, say. We just did one recently in Atlanta. Now I go there with every intention. I'm going to teach for the whole two days. I'm going to be there, I'm going to be everybody, and then I teach a half a day and then I've traveled first, first of all. So I have to go a day early, because a day of traveling actually like throws me into that, hit by a bus syndrome, not a full flare, but just like, oh, so I go a day early so I can rest a day.

Dwan Bent-Twyford:

Then I go down with my bill with bell on Saturday and I teach like a half a day. I'm like, oh honey, I'm, I'm gonna go lay, like Sunday morning. I'm like, no, I don't feel like going down. And then the people in the room are like, oh, tell Dwan to come down. We just want to say hi, we just want to give her a hug. I was like, dude, you can't hug me. Every joint I have hurts. I don't even shake hands with people anymore Now. I mean, I had been brought to my knees by handshaking Before I was actually diagnosed and my joints were hurt and I didn't know what was happening.

Dwan Bent-Twyford:

I was at a huge event and throughout that day I probably shook hands with like 20 people. I went to my husband. I was bawling. I said listen, my hand hurts so bad If one person shakes my hands. I feel like I'm going to die. Right now I can't shake any more hands.

Dwan Bent-Twyford:

So I did buy they're in my suitcase. I bought these little compression gloves, like the tips of your fingers stick out and they come down to here and they're tight, they're compression gloves. Those help a lot too. So then I would wear those little compression gloves and just say, oh yeah, no, I can't shake. And people are like, oh okay. But then you know, people meet you, they've always seen your podcast. I want to take a picture, I want to shake your hand. So now I just fist bump people. I'm like now I just go poo, like that poo, and then they look and then I do that and then they go, oh, so then it's like fun, like poo. Um, because I can't stand when people shake my hands, they, my fingers, my from here to here, never, not ever, ever does it hurt? Ever, every day. Steroids are not in here, I'm just like.

Dwan Bent-Twyford:

So even before I got diagnosed, I told bill. I said man, I think I get carpal tunnels. I was googling some of my symptoms. I'm on my phone, I do a lot of videos, I do a lot of typing. So I think I have have carpal tunnel, maybe that. So you know, I started using things and so we think we have all these things that are symptoms of whatever the thing is. So now I told Bill.

Dwan Bent-Twyford:

I said listen when we go to a speaking event if I wake up on Sunday after the traveling and teaching this Saturday, on Sunday, if I get hit by a bus, start telling people I have a migraine because they'll be like oh, but we want to say goodbye to Dwan, we want a picture with Dwan, we love Dwan, we want to hug Dwan, we want to help her feel better. When he says she's in a flare or she has RH and doesn't feel good, they don't understand. They want me to come down. I was like listen, if I come downstairs I'm having no makeup, no hair, I'm going to have on sweatpants, my hair in a ponytail and I'm going to look like death because I feel like death. So now I'm like and I understand people want to see me Like I get it and I love it and I appreciate it and I value all of you so much.

Dwan Bent-Twyford:

But at these live events I'm like listen, just tell people I woke up with a migraine the first time. He did that. They're like oh my gosh, tell her to get better. It's like okay. So if I lie on the Sunday and say Dwan woke up with a migraine, everyone in the room is like oh, we're praying for Dwan prayers, hope her migraine goes away and she feels better and Bill says, hey, she's in a flare-up. They're like, oh, we'll have her come down anyway. We want to see her and say goodbye to her.

Dwan Bent-Twyford:

And it's like the last thing I want is people hugging me and handshaking me and taking pictures. When I have my hair in a ponytail, I got my sleep mask half on anyway, I'm in my sweats, but I've got my heated blanket. It's like, listen, I want to just walk down like in a blanket and my hair and some sloppy sweatpants say this how I feel. You sure you want to hug me, but I understand people don't get it and I know that you know people don't get it.

Dwan Bent-Twyford:

So I tell people I have migraines sometimes when I don't, because no one ever says suck it up, they're like oh. And then if I say I'm in a flare, they're like, oh, well, you look fine, can you just take some time off? And then people say, well, just don't think about it. If you just don't think about it, it'll go away. It's like, oh, my god. So I absolutely feel your pain and 99% of the people that I know they don't know I've been diagnosed with rheumatoid arthritis. They don't know. And even the people that do will say like oh, my grandma had arthritis. I'm like it's not the same thing, it's an autoimmune disease. My body is attacking my joints. It is not the same thing. It is not the same thing.

Dwan Bent-Twyford:

So I started following a few of these people on TikTok recently and as I hear them all talk, I'm like God, I feel everything they say. It's like I feel you so much. I feel the days where we don't want to get out of bed and take a shower. It's too much work to wash our hair. It's too much work to dry off your body with a towel when your whole body hurts. I have days where my skin is so sensitive I'm just like I took it on a nose and don't touch me today.

Dwan Bent-Twyford:

Even just him like wanting to, because he always like let me rub your hands. Well, he rubs hands like he's a freaking weightlifter. I'm like dude, tone that down to like a child's level and just rub my hands and I really and I know he wants to and he's sweet but I'm like listen, I love you, but you can't rub my hands anymore because you are too strong. You don't recognize your own strength and when you're rubbing my hands to try to make me feel better. I'm screaming on the inside. I do let him rub my feet. I'm not there with my feet yet, but I'm there with my hands, and so I rub my own hands. He'll let me do it. I'm like, no, you're too strong. You rub too hard and I'll go lighter. And he's like I'm barely touching, I'm like lighter. And then my arms, my skin, you know how it is.

Dwan Bent-Twyford:

You guys know that every day you're just like everything, oh gosh, everything hurts. Today I don't want to do anything, I don't want to face people, I don't want to make phone calls. And people will call and I'll see my phone. I'll be like, oh, I'd love to talk to that person, but no, not today. So I get it when you have days that you just want to stay in bed, days where you don't want to take a shower, days where you, honestly, you can't even imagine having to cook food.

Dwan Bent-Twyford:

Now, living up in the mountains, we have no door dash up here, we have nothing. So I either have to make something or, if Bill's here, I'm like, hey, will you make something for me? I do sometimes go upstairs and get on the couch. I have a couch that's got a heated seat. I'll have on two blankets and a heated seat which is like my face sticking out, and that's really all I can do. And if it's really bright, I can't even do that because we have so many windows, because we live in the mountains. So I get it, I get you, I feel you, I understand it so much.

Dwan Bent-Twyford:

And you know, I'm always praying for healing. I'm like you know, god can heal anyone at any time. And then I say the things like God, why did you do this to me? I'm so active, I'm a speaker, and then I read the Bible and I think about Job. If you've never read the book of Job, read the book of Job. That man lost his cattle, his family, his kids, his wife. He had boils and scars and everything. God had put him through, everything known to man except for death, and he still praised God all the time. And then, when the test was over, he was completely restored, double everything he had happy, wonderful and amazing. So I always read that and I'm like, okay, well, job went through a million times more than I'm going through. He never cursed God, he never got mad at God. And then sometimes I'm like, well, okay, maybe I'm supposed to help other people Because you know, when you see someone up on stage, you're like they're fine, they're on stage, they look great.

Dwan Bent-Twyford:

No, Inside dying all the time. And, like I said, I start following a few people and I see some of these girls that are like five days in a row. They're like oh, I've been on my couch for five days. My family thinks I'm lazy. They don't understand why are you like that, you're fine, suck it up. Suck it up. I'm telling you.

Dwan Bent-Twyford:

So if you do not have an autoimmune disease and you know someone that does, let me give you a couple of rules. First of all, stop telling people to suck it up Because we want to chop off your head. Stop telling yourself to suck it up. Stop telling people they look fine, because it doesn't matter how we look on the inside, we literally feel like we could die today, like there's some days I actually thought like I could almost feel the life leaving my body. A few times I was like, oh, I'm going to die today. Stop just being like oh, you're fine, you look good, you know you'll be fine. Just rest for an hour or two, let's go do something. Stop doing that Because, honestly, those of us that are struggling with this stuff, we don't want to suck it up.

Dwan Bent-Twyford:

We don't want to have to explain in detail to every single person why we haven't been out of bed for three days. We don't want to explain why we haven't even brushed our teeth or brushed our hair. I I keep my hair. I sleep with my hair up in like a silk bonnet, a sleeping bonnet. So thank you to the sisters out there.

Dwan Bent-Twyford:

I started following a couple of girls. I'm like, hey, listen, all you white girls, you need to get yourself a sleeping bonnet. Oh, they're so great. So I put all my hair up at night in the silk sleeping bonnet and I have left that bonnet on my head for three or four days because I didn't want to brush my hair. I walk around sometimes with my bonnet and my sleep mask right here so I can just pull it over my eyes and Bill's like what is wrong with you? I'm like I know, but he knows. Yeah, but you know, honestly, even being married it's been six years and he's only in the last year really recognizing like how bad I actually feel.

Dwan Bent-Twyford:

And that's because he went through cancer three years ago. He got diagnosed with an ultra rare cancer and had to have a full, entire bone marrow transplant. He had to have chemo, five days of chemo. They take you to the death door. They say they give you five million stem cells from a donor and you have to build your whole body back. And that has been three years since that happened. In the first two years he could barely move, he hurt, he ached and he's like do you feel like this? I'm like, yes, I feel like that and I hate to say I never want to say I'm glad that he got cancer. I never want to say that. But he had had symptoms for a decade. He'd been on some low-dose chemo pills for a decade He'd been on all this different stuff.

Dwan Bent-Twyford:

Then it advanced into this thing called myelofibrosis, which has no cure whatsoever. And you've got a couple years adenomol. So what happens is your bone marrow inside becomes like a slide. So instead of your body absorbing the bone, your red blood cells, they just slide through. So you can't absorb red blood cells. So you choke out, basically, and the only cure, the only possible cure, was a full bone marrow transplant. So we found a donor through the company called BeTheMatchorg. If you're under 42, please donate, please. There are people like Bill that would be dead if it wasn't for people like you, and he had everything wiped out and then they give you 5 million stem cells or an IV and then your body starts rebuilding.

Dwan Bent-Twyford:

Well, during that time he had no energy, he was on crazy amounts of steroids, he was on crazy amounts of medication. He had days where he couldn't get off of the bed because he was so wiped out and I was like that's how I feel. So thankfully he's 100%. They said he's got 100 and has a 25 year old female. So he's got 25 year old female DNA. We call her Doris the donor. So we've got 25 year old female DNA. He's back. He's 100% back.

Dwan Bent-Twyford:

But he went through that while I also was in the newer beginning stages of the RA and I was having to care for him and try to care for myself and he had so many days where he was just so wiped out and so exhausted and he couldn't even move a muscle and I'm like that's how I feel, I'm in a flare up. So because of that, he is much more understanding as to how I feel. You see, now he lost all his hair. He looked like he had cancer. People are like, oh my God, poor Bill, praying, praying, praying. And if I come on and go oh yeah, I'm going to flare up. They're like, oh, you look fine, what's wrong with you? So he looked sick. So people were really tolerant because he was really sick. But on the other hand, I have so many of the same things and it's like throw me a little sympathy over here, people.

Dwan Bent-Twyford:

So it helped our relationship dramatically because he understands the steroids and how they make you feel. He understands the fatigue, heavy fatigue. I mean. There was a six month period where I had to help him just walk to the bathroom. He was so weak and so just depleted of everything. And thank god, thank you jesus, he got through it. He's better. He's completely on the other side. No more bone marrow biopsies, no more nothing. He's 100% doris the donor. He's got 25 year old, old DNA which gives him all kinds of crazy new energy. He's got this soft baby skin. I touch his skin. I'm like how do you have a skin like that as a 67 year old man? That is not right. And he's amazing. And so he is more understanding and helpful with me because he didn't get it before and now he gets it, enough that he gets it. So I'm thankful for that. So I am thankful for that.

Dwan Bent-Twyford:

But even, like you know, even my parents and some of my kids are like I don't understand. Why is mom always laying down? It's like, oh my god, you guys read up. I send things to my kids and my nieces and nephews and people in my family and like read up, learn a little bit more about what's happening. If someone in my family had something like that, like my cousin, I read up everything about it and then ended up with it too. So it's like, okay, we have this whole family of all these super healthy people that live to be 100 and me and my cousin have RA. It's like what? What gene are we missing? So I don't know.

Dwan Bent-Twyford:

So I just wanted to come on here and talk about anyone that has an autoimmune. I totally get you. I get you so much. You have no idea how much I get you and I'm going to do a few podcasts once in a while just talking about health and supplements and our mental mindset. It's really, it is hard, I can tell you. It is hard to keep your mindset up when you're having those days like that. I mean some days I'll even, like I said, I'll put on a movie and I'm like I can't even stand the noise. I'm just laying in my room with all the curtains drawn, it's like a bat cave and there's no noise whatsoever. I got my humidifier rolling, putting a warm air into the air, and I got my blanket and I got my oxygen, all my stuff and I and you know it took me gosh darn.

Dwan Bent-Twyford:

It took me like four years to give myself permission to just stay in bed all day, because I was always like no, I should get up, I'm active. I've been active my whole life. I was a full-time rehabber for 20 years. I should be up, I should be moving. I was like, why am I doing that? I can't just lay around. And so we have to give ourselves permission. You have to say, like you know what, I'm going to have a movie day. I don't care what anybody else says, I'm staying in bed, I'm staying on the couch, I'm going to put on some movies. I'm giving myself permission. We have to give ourselves permission to have bad days. We have to say it's okay, you're not a failure if you have a flare-up that lasts for a month. You're not a failure, You're not any of those things. You're just a person that has an unfortunate disease and that we allegedly were diagnosed with, but we're not going to claim that we have it.

Dwan Bent-Twyford:

And my hardest thing for me mentally was giving myself permission to just lay around for days on end, and one time it was like 10 straight days. I don't think I even got off the couch and I was just like no, I can't get up, I can't, I'm in too much pain. Everything hurt my skin, everything, even the blankets, like on me. It was like, oh God, the blankets are too heavy. And it's only been in this last year I'm turning 55 to 65, to 66 is only in this last year that I have fully, just given myself 100% permission to do nothing for however long it takes, doesn't matter if it's a day, if it's a week, if it's a month, I'm not doing it, I don't need to, I'm not doing it, I just can't. I can't and I'm not going to. And I'm not going to make excuses to people, I'm not going to suck it up for other people.

Dwan Bent-Twyford:

I always will say yes to plans. I'm like, yep, I'll go to that. Yep, I'll go to a day. Yep, I'll go to a movie. Yep, I'll go out If I wake up that day. I'm like, nope, I have a blinding migraine. So if you hear me say that I don't have word migraine better. So if you ever hear me say, oh my God, I got such a migraine I'm speaking at an event, just know, I'm upstairs in my hotel room feeling like death and I pray, I pray for healings. I ask God to heal me.

Dwan Bent-Twyford:

All the time I am very careful to say I was diagnosed, not I have, because your body believes what your mind says. And even when I'm having a bad day, I just in my mind, I'm like nope, I'm not in pain, I'm not in pain. And I am. I'm like, nope, I'm not in pain, not in pain, not in pain Because I don't. Because the days I really like like some days, you just can't not think about it because it's so bad, and I think the more I think about it, worse. So. And also, when all else fails, make yourself a drink. I drank so much wine in the last year. It's like yeah, it's 11 in the morning. I'm having a glass of wine. I'm like cause, everything in my body hurts so bad. And I feel like this will help me relax a little bit, does it? Probably not, because it's got sugar and sugar is on my list of things on my phone not to have. But I feel better. So just know, just know that I hear you, I see you.

Dwan Bent-Twyford:

If you have someone in your family that suffers with an autoimmune, please show them some mercy. I mean, honestly, we all get so tired of trying to suck it up for you. You have no idea the kind of pressure a family member can put on you when you feel like we feel so on you, all of you that have something. You know what I'm talking about. If you don't have a really supportive spouse or whoever lives in your house with you, if they don't really get it, you know it's like people almost make you feel like you're lazy. Oh, you're just faking sick to get out of doing stuff. It's like, listen, I don't ever fake sick, ever. I don't ever want to get out of something.

Dwan Bent-Twyford:

I made a plan to do something. My grandson had a birthday party a few weeks ago and I was in so much pain that day I thought he's my boy. I can't, I just can't not go. I'm going to go. So I told Bill. I said now, listen, we're going to go there, I'm going to stay one hour and you're going to bring me home. I went, showed my face, hugged everyone, told them I love them. I left in an hour. He stayed over there the rest of the day. He said you don't need to come back with me, just driving back home and driving Like, when my hands are really sore, I can't even drive, I'm just like, oh, I can't even like, oh, it's like, oh, I can't grasp the steering wheel.

Dwan Bent-Twyford:

My hands, my hands, my hands, it's always my hands. So I think if you have an autoimmune or are diagnosed, I will certainly pray for you. And if you have someone in your family that has one, seriously freaking, give us a break. Just give us a break. Give us a break. We're so tired of sucking things up for other people and we're so tired of people making us feel lazy and we're so tired of people making us feel bad about it when we feel terrible. Like every one of us with an autoimmune, we want to get up, we want to go to the movies, we want to go out to eat, we want to go. We do, but you just can't. And when you force us and push us through it, then we're worse.

Dwan Bent-Twyford:

So the few the times I have just sucked it up for like five days afterwards I'm literally hit by a bus then. So now I'm like so my life basically is like two or three days of feeling good, a movie day. I just call it a movie day. Now, movie day Two or three days, I'm all right. Then I have a movie day. I just do that because if I go every day six or seven or eight or 10 days in a row, then I'm like 10 days I'm out, then I'm taking these stupid steroid packs and then I'm cracked out because I can't sleep and I feel terrible and I just then I'm emotional wreck, I'm crying, because steroids make me cry all the time. So I'm crying and carrying on and it's really just a lot. It's just a lot. So I don't know if this helped anybody.

Dwan Bent-Twyford:

Today I feel better sharing it. If you see me or meet me out, if I'm fist bumping you, that means my hands hurt. Don't even hug me that day, because you're just going to crush my bones. I hate that. My eyes have gotten worse. Oh, and I use this thing, this little oxygen thing with the balls, because RA causes scarring inside your lungs and I have noticed in the last two years I don't have the same lung capacity. So I'm getting ready to go to a new doctor and have some kind of lung test done. So I'm in bed at night. I'm, like you know, doing the thing with the balls, and then I'm taking this and I'm taking this and I'm taking this and I'm taking this and I'm taking those and I'm taking those, I'm taking this, I'm rubbing my hands on that and taking this, and then I'm taking this and then I'm taking this and then I'm taking these and then I'm taking these.

Dwan Bent-Twyford:

I'm telling you an autoimmune disease is a full-time job. It is a full-time job. I spend two hours in my morning just trying to get unstiff and up and out to do things. So even now when I schedule podcasts, I used to do them in the morning. I'm like noon at best, so I schedule them from like noon to three. If I get like in a talk like this for three hours, I'm exhausted. I'm in bed by four, laying back down with my heated blanket. So I hope this helped. I feel better.

Dwan Bent-Twyford:

If you have an autoimmune disease, show this to somebody else. That doesn't, that doesn't understand you. And for all of you that keep telling us we're like fine, suck it up. I don't understand. Why do you sit in bed for a week, you need a shower. You know what? We don't care, like we really don't give a shit. I've gone like eight days and I've washed my hair because I can't lift my hands up. It's like oh, the shoulders, oh, I can't do it, we don't care, we really don't care. We just want to live.

Dwan Bent-Twyford:

We honestly, I think every single one of us would just rather live alone, so we never have to face people or deal with people, because we're so tired of all the. You're fine, you're fine, you look fine. We're just so exhausted. We're, honestly, we're so exhausted. So just give us a break. If you love us, give us a break. Please, for the love of God, give us a break. And if you have something, I'll pray for you too. And it's progressive. So I've not even had people say, well, at least you don't have cancer. And I'm like, yeah, with cancer I'd either be cured or I'd die. At least with this, this is forever. I don't even get a break. I have no way to even get a break. There's no day where there's a break. It's like I'm also like I'd rather have cancer and just drop over dead and be done with it. But not really, you know what I mean. Like I don't want to die. I'm only 66.

Dwan Bent-Twyford:

That's part of why I keep my hair pink, because my hair being vibrant makes me feel more vibrant. So that's part of the reason I have pink hair. I got a little gray, I got gray, but it's like you know what, this makes me feel more fun and it makes me feel more alive. So that's part of the pinkness. So you know what? Dye your hair some crazy color, do something crazy, make yourself feel better.

Dwan Bent-Twyford:

I even stopped getting my nails done because that stuff they put on your nails now it burns my nail beds. Whatever that chemical is, it burns my nail beds. So now I've got these little short, tiny nails and every year or so I'll try it again and then my nails just burn like fire. So it's like I don't even care, I don't need my nails done. I get my hair done and sometimes I don't even shave my legs for a month. It's like I don't care, I don't care, I don't feel good, I'm not doing it. So let's all just claim it. Let's claim what we have, not claiming like the disease, but like just claim like hey, this is who we are, this is, oh, I'm going to say one last thing. My mom had some really bad dental work. I don't even know how long I've been podcasting right now, but my mom had some really bad dental work and her trigeminal nerve was permanently damaged. So she lives with chronic pain from bad dental work. So she went to the Mayo Clinic. They have a 30-day pain clinic.

Dwan Bent-Twyford:

So I did want to show you guys this. I've been working on this myself. So you make three columns and you put A and B and C. Okay, so I'm going to assign all of you this homework. I have been working on this for the last month because I finally realized I can't just keep doing everything for everybody else anymore.

Dwan Bent-Twyford:

So in column A you put everything you used to do, everything you love. You put the person that you were before in column A. Then in column C you put who you are now, all the things that you have that are wrong and unfixable and that. And then what you do is you make column B. So what column B is is letting go of who you used to be.

Dwan Bent-Twyford:

Like I always say oh my God, I used to travel, drive across country, didn't even get a back ache. Okay, well, that would be in column A did I? Drive across country, didn't get a back ache? Okay, well, that would be on the column a. So one of the hardest things for me I know for a lot of you is accepting who we are now, because we don't want to be who we are. But the one thing in the Mayo Clinic because I went, my mom was there for 30 days. I stayed with her up there. I went not to all the sessions, but I went to the family sessions and I thought this was the most helpful thing and I remembered this about a month ago. And so right now I'm working on this project and this is like mentally destroying me. I cry every day when I work on this. So column A is like the old you, the before autoimmune.

Dwan Bent-Twyford:

Column C is all the bad days, and then what you do is you take a few things from column A and put them in B, take some things from column C and put them in B, and B is who you are able to be. Now we're never going to be column A, ever again, ever again. We don't need to live in column C, every waking moment of our lives consumed by it. So my sheet I'm working on I have like 100 things in column A and I look at that and go, gosh Dwan, I can't really do any of those things anymore. So column A is who you were, who you saw yourself as, whatever you did traveling, biking, skiing, whatever, going for walks, jogging, I don't know, whatever, whatever raising kids, just whatever.

Dwan Bent-Twyford:

Column C is how you feel on your worst days. On your worst days. Then you take some things from A and go can I do this now? And if you can do it and you want to do it, put it in column B. I took a lot of things off my list over here. I can't go skiing anymore. I don't want to ski. My joints hurt too much. I can't stand to be cold when I get cold and I get like really cold, I'm screwed for a week when I get really cold. So 90% of the things in my column A are things I really just can't do. I don't want to, I don't want to. I don't want to because I don't like how I feel afterwards.

Dwan Bent-Twyford:

Column C is your worst days. I don't want to live in my mind in my worst day. So you make B and then you just read B and read B and read B and that is the person that you are now. So you have to let go of the old you. You don't want to live 100% in the new you. So you find a happy medium and put things in that you can actually do so.

Dwan Bent-Twyford:

Like my husband, we love to take road trips. You know what? I can't take a road trip, a long one. We drove to Iowa it's only a 13 hour drive and we stayed at a hotel because the whole 13 hour drive I'm screwed for three days. I can't do that. I love to do that. I'll go on a road trip, but I'm going to drive in a car for about six or seven hours. I'm getting out, I'm getting a meal, I'm getting a hotel, putting on my heated blanket and putting on a movie.

Dwan Bent-Twyford:

So A is old you, c is on your worst day and then you take a few and make B and B is the new you and you just look at that and go. You know what? This is my reality now. Do I want that to be my reality? No, do any of you, hell. No, we don't want this to be our new reality, but it is, and that's one thing I have struggled with the whole time is like accepting the new reality, because I'm like I don't want that to be me, but the reality of it is it is me.

Dwan Bent-Twyford:

So I'm working on my column B. I've been working on this for like the last three or four weeks and every time I work on it I cry, oh, I feel bad, I feel like this and what can I do in the middle and I'm just making it really realistic, like really realistic, because column B is the new you. Now, if your disease progresses, you may have to do it again, but I think we have to stop going. Well, I used to be able to do all these things, because when I think about the past and all the things I could do so easily, it upsets me worse on the days when I feel bad that I can't do that. Now, this is me. It's like no, that's not me. My disease is not me. Your disease is not you. We are column B. B is for best, this is our best.

Dwan Bent-Twyford:

So make a column A all the things you loved that you could do without even flinching. C all your worst days, all the things you can't do at all, and then make B and then look at B and go. You know what. I accept this. I accept this. This is who I am right now. Will I be this way forever? No, maybe not. You might get healed, they might come up with a cure, something could happen, but this is who you are today.

Dwan Bent-Twyford:

And the hardest part for me is accepting who I am today, because I still want to be who I used to be and I can't. I mean, I just can't. You know, like when Bill and I go speak, I'm like, yeah, I want to go, but sometimes I get there and I don't even come out of the room the whole weekend because I literally can't do it. I just can't. And I'm not forcing myself anymore. I'm not letting anybody make me feel bad anymore. I'm not forcing myself anymore, not letting anybody make me feel bad anymore. I'm not letting anybody pressure me anymore and if someone does, I just lie and say I have a blinding migraine. Because people are like, oh you, poor thing, I'm not. And, on the good side, since I got my new glasses uh, with the cataract and whatever and started using my sleep mask and stuff, I've not had a single migraine, even a headache or anything. It all went away with new glasses.

Dwan Bent-Twyford:

So that might help somebody out there and my doctor's like no, we're going to wait two years before we do cataract surgery because the steroids might give you more cataracts. It's like, oh my God, joy, happy, happy, joy, joy. So you know what? You're okay, you're going to be okay, we're going to live through it, we're going to make it to see another day. We're going to stop letting people pressure us. If you have someone in your family that has an autoimmune and you're listening to this, no-transcript, just let us be who we are right then, so we can feel better about things. So, anyway, if you want to learn more about real estate investing, follow me at dwonderfulcom. Leave a side star review. Start following my podcast.

Dwan Bent-Twyford:

I am going to periodically talk about some health issues Because you know that's a big part of my life, real estate's a big part, my family's a big part, and my health is a freaking all-day job right now and I don't want it and I would get rid of it for anything. But you know I wouldn't wish it on my worst enemy because it's a terrible thing. So join me in column B. Let's be our best that we can be, and when you're not able to be your best, just be you. Just be who you gotta be for that day, all right, okay, we'll be back next week. Same bat time, same bat, channel, channel. And remember that the truth is in the red letters. All right, I love you guys. Bye.