My Spoonie Sisters
Welcome to My Spoonie Sisters! If you're wondering what a "Spoonie" is, it’s a term lovingly embraced by those living with chronic illnesses, based on the Spoon Theory. It’s all about managing our limited energy (or “spoons”) while navigating life’s challenges.
Each week, join us to hear from your "Spoonie Sisters" host, co-hosts, and our inspiring special guests as we share real-life stories, tips, and encouragement. Whether you're here to learn, connect, or feel less alone, you’ll find a supportive space filled with understanding, laughter, and strength. Let’s journey through chronic illness together!
Tune in and join the sisterhood!
All guests featured or mentioned in this podcast will be listed for your convenience. Don't forget to rate and subscribe to My Spoonie Sisters and follow @MySpoonieSisters on Instagram for updates on new episodes and more. If you have a story to share or want to be featured on My Spoonie Sisters, please email MySpoonieSisters@gmail.com. We eagerly look forward to speaking and hearing from all our Spoonies!
Disclaimer: While we are not doctors or healthcare Practitioners, we want to assure you that this podcast is a credible source of information. It's based on our guests' personal experiences and the strategies we've found effective for ourselves. However, everyone's body is unique, and what works for one person may not work for another. If you have any health-related questions, it's always best to consult your Primary Doctor or Rheumatologist.
Remember, our goal at My Spoonie Sisters is to connect people and provide them with the support and tools they need to live better lives.
My Spoonie Sisters
Unsolicited Chronic Illness Advice
Have you ever been told that celery juice could cure your autoimmune disease? Or perhaps someone suggested that your joints aren't actually inflamed—they're just dehydrated? Welcome to the world of unsolicited health advice that every person with a chronic illness knows all too well.
In this candid and often hilarious conversation, four women (Alison, Jen, Jewel, Linnea) with various chronic conditions share the weirdest, wildest, and most bewildering "cures" they've been offered by well-meaning friends, family members, and strangers. From the childhood friend who messaged after 20 years to suggest "eating right and exercising" would solve everything, to the truly outlandish experience of being led to a stranger's basement, given an apple, and anointed with oil to "pray away" rheumatoid arthritis—these stories will have you nodding in recognition or picking your jaw up off the floor.
Why do people feel compelled to offer solutions rather than support? How does "medicine shaming" affect those who need medication to function? The conversation delves into how chronic illness becomes a masterclass in setting boundaries, educating others, and sometimes finding the humor in absurd situations.
Experiences are validated, medical gaslighting is acknowledged, and fellow "spoonies" understand that wellness often requires multiple approaches working together, not miracle cures or quick fixes. Whether you live with chronic illness or love someone who does, this episode offers insight, comfort, and permission to respond to the next person who suggests dancing under the full moon with a smile, a boundary, or perhaps a witty comeback.
- Jen: https://www.instagram.com/gracefully_jen?igsh=MW9iMTl0ZXMwZ2dleg==
- Linnea: https://www.instagram.com/perfectlyimperfectlinnea?igsh=bGFyZzJqcGc0eG5m
- Alison: https://www.instagram.com/alisons1616?utm_source=ig_web_button_share_sheet&igsh=ZDNlZDc0MzIxNw==
- Jewel: https://www.instagram.com/thelipedemacushie?utm_source=ig_web_button
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Today we are diving into something every spoonie has heard at least once Unsolicited health advice. Yep, you got it. We're talking about the weirdest, the wildest and the most wonderful bizarre remedies people have suggested to help us fix our chronic illnesses, from celery juice miracles to dancing under the full moon. Our listeners and co-hosts spill it all in this judgment-free but totally Google-prone zone. Well, hello, ladies, welcome to the show.
Speaker 2:Hello, hello.
Speaker 1:Wow, I'm so excited about this one, and I feel like we are the right group for this. If your chronic illness was a cartoon show, what would it be? Linnea, I'm starting with you.
Speaker 3:Wile E Coyote he's never. He's never can get it right. He never gets the bomb or whatever it is to blow up, right the TNT. Whatever he blows, he never does it right. I feel like with my medication I never get it right. It took me forever.
Speaker 2:I'm going to go with American Dad. There's a bunch going on. There's a little alien in the corner who knows what's gonna happen with the kids. Like it's just all over the place that that's my kind of feeling, I.
Speaker 4:so I don't know if it necessarily encompasses the whole tv show, but, um, if you've ever watched the jetsons and robot and how she was always breaking down and they were trying to fix her, and just kind of like you think it's in the future, it's really constantly breaking down. You were trying to fix her and just kind of like you think it's in the future, it's really constantly breaking down, you're trying to figure out how to fix yourself.
Speaker 1:Oh, I like that. What's yours, jen? I'm thinking outside the box on this one, so bear with me. But I'm going to dive right back into my childhood and say the Smurfs. And my reasoning is because they're blue, but I love them, and so I'm kind of thinking I've had all these allergic reactions, so how am I not blue? I don't know. So maybe I'm just going to go with Smurfs because of that. That's cute.
Speaker 3:I like that thought process there Jen.
Speaker 1:It was the best I could come up with on the fly. So what is the weirdest piece of health advice that you have ever received?
Speaker 2:that you have ever received. No, I have a message that I received from a childhood friend that I hadn't seen since I was like 18. And that's 20 years ago, and she sends me a message. She says WTF, Jules, are you okay? I want you to get dedicated about your health. Eat right and exercise and all those health problems will go away.
Speaker 1:Just randomly out of the blue. She said that to you.
Speaker 2:Randomly out of the blue. So if I eat right and I exercise, all of my health issues will go away? How did you respond? I didn't curse. I was very nice. Let me tell you why, because she probably just has no idea about anything chronic illness related. I felt like if I'm an advocate, I have to say something like to advocate and not just curse her out. I did respond and I said hey, that is so, not true. Eating healthy and exercising actually exacerbated my health issues and I said I'm going to take this opportunity to educate you. You should not send people messages like this when you have no idea what is going on with them. I have Cushing disease, which causes weight gain. Working out caused my cortisol to rise, which actually caused weight gain. All of these issues in my body were caused by high cortisol, not the lack of eating healthy and exercise. You know what's funny? She responded back and said so you are offended at my message, I see, but look, no harm intended, wish you nothing but the best. And I'm just like wait what?
Speaker 3:How did she think you would take it that you were saving, that she was saving you yeah.
Speaker 2:Yeah, I was like if you, if I knew you were going to think I was offended, maybe I would cuss a little bit.
Speaker 1:My goodness, well, I think you responded. Lovely, I think I did you were very kind. Obviously, I don't know the person. My gut reaction is a big screw you.
Speaker 2:Exactly that's what I could have said.
Speaker 1:But also it's because it's someone I don't know. It's not me and I'm protective about the people I love. I think if it would have been myself and someone I knew, I would obviously react differently, actually.
Speaker 4:I was posting about my rheumatoid arthritis and I got a comment that said you actually don't have rheumatoid arthritis, your joints are just dehydrated. If you drank more water you would be okay. I just like stared at the comment when it popped up for like I don't know 10 minutes and I'm just like what, like I don't, I didn't know what to think, but I was just like, okay, that's bold, thank you. Thank you for telling me it's all in my head and gaslighting me that I actually don't have this issue that I've been dealing with for years. Did you know them? I didn't, and they've never commented or said anything after that but I was just like okay goodbye.
Speaker 4:That is weird. I yeah. So it wasn't necessarily advice or anything, but it was just like I don't know. It's a water you need, like if that was the cure, you know, just drink lots of water and we'd all be fine.
Speaker 2:You need the water. You need? Yes, I'm a plant.
Speaker 1:apparently, this can make some extremely comical content. I would love to see a reel of you with a watering can watering your knees.
Speaker 4:I could be standing in a bucket and just like. Oh, I'm a plant.
Speaker 2:Thank you.
Speaker 1:I think what we need to start doing is, when we get this weird kind of stuff coming at us from people, we need to take it and run with it. I love that idea. Bring out the humor, bring out the dark humor We'll see here. When I was first diagnosed, I made a new friend and was the minister's wife at our church. They were fairly new and she was convinced that if I started juicing with her that I would do better. I think we touched on it in support group this morning. Some of these things they can help, but it's collectively. It could be diet and exercise, it could be hydration, it could be juicing, it could be you know. I mean it can be all the things, but that's not an end, all cure all. A lot of us need medications or surgeries or whatever. It all works together collectively. And I think she was absolutely convinced that if I did this juicing with her, I was going to feel so great and it was like my RA was just going to shake right off of me. It doesn't work that way. But here's my good one. And, mom, if you're listening, I work that way. But here's my good one. And, mom, if you're listening, I'm sorry, I'm throwing you under the bus. It was not even my mom that said it. It was my mom that took me to this experience.
Speaker 1:So this is what happened. I went to visit my mom. She lives in a tiny town in Washington State near the Canadian border, and she said I have this friend that I want you to meet from church, and so we're going to go over to visit her. I kind of thought, okay, my mom just wants to take me to meet one of her friends or something no big deal. She took me to this lady's house. We walk in, the lady hands us both an apple and a water bottle and walks us down this creepy stairway into the basement where she wanted to anoint me with oil and pray over me. She was going to pray away my RA, and don't get me wrong, I'm a Christian. I believe in the power of prayer. I believe in God, yes, but this apple, this water, this anointing of whatever oil she put on my head and her prayers were not going to take away my RA.
Speaker 2:All you need is an apple and a little bit of beet juice. Jen, I know.
Speaker 1:Eventually this lady was talking about I don't remember what country she was trying to get everyone to go to that the sea was going to part and they were going to go from one country to the next. I can't even make this stuff up. My mom met a crazy lady. I have no words, no words. I see you all holding in this laughter. It's okay, let it out. Let it out. Were there other?
Speaker 4:people in the. I have so many questions.
Speaker 3:I have so many questions?
Speaker 1:Thank God there were not. It was just me and my mom. I thought we were just going to visit her friend that lives near the prayer house, because there's also a prayer house there that people like to go to. It's this random building that you can climb up the stairs and go into and people use it to go and pray, meditate, whatever there's instruments up there. You can see the stars really well. It's in the middle of nowhere. Apparently, this lady has been drinking too much Kool-Aid.
Speaker 2:I don't know A little bit more than Kool-Aid.
Speaker 3:All I can picture is an altar with all these candles and going into this basement. That's how I pictured this.
Speaker 1:I watched too many crimes Like a shrine at the the father would have stared, you guys, if it was not summer daylight and I was not with my mom, I would have thought I was going to do a horror movie, that's all I could think about.
Speaker 4:I was just like you're lucky A sacrifice.
Speaker 1:Yeah, my throat was going to be slit. The blood was going to be used to bring a dog back to life.
Speaker 3:I don't know.
Speaker 1:Oh my god, they were gonna eradicate ra all together by sacrificing you you were gonna be the ra sacrifice, aren't you glad you decided to come today holy smokes nothing else, just for that. All right, lenny. Uh, now that I've brought us all, for tears and laughter.
Speaker 3:What is the weirdest piece of health advice you've ever received? I've had all those and they come out of the woodwork. I will tell you, I feel guilty for ever dismissing those things because they are part of my health regimen. Now they thought it was going to just heal me and it's not All of those pieces together with medication.
Speaker 1:That's exactly it. It brings us back to what we were talking about before. This stuff needs to work together. Allison, I love watching you work out and doing all your things, but that's not your end. All cheer, all you do multiple things to take care of your body.
Speaker 4:Yeah, it's like Glennie was saying I work out every single day, but I found on the days I don't work out, my stiffness just overcomes me more, and so I know I have to do that. I'm on multiple different forms of medication. I was going to touch on this in another question, but I had to change my entire diet. I try and avoid as much as possible gluten and dairy because it really messes with me, but all the good things have gluten and dairy in them, so it's really hard to not want to eat those things. It all plays a factor into it for me, kind of like what you said.
Speaker 1:And you say this as I'm over here chowing down on the cheese.
Speaker 4:Right, and I'm like my Coca-Cola. The one thing I will not give up is coffee. Though my doctor's like, oh, if you give up coffee it might help with some of the, I'm like, no, I'm sorry, I just can't. I have a point of addiction with it. It'll probably cause me to go into withdrawals if I don't.
Speaker 1:That's exactly it. I don't know if you have seen the sequencing testing on Instagram. It's like genetic testing and stuff. I did that recently. I already thought I had a lactose issue, but it came back that I actually do. I'm actually lactose intolerant and I'm still eating cheese, just so good. So I do know if I were to change some of my habits, my inflammation might be a little better. But do I want to give them up? No, not really. So our next question goes along with the first one what was your reaction when someone suggested this to you, and did you do it? So, jewel, we're going to start with you. You told your reaction, of what your response was. I'm assuming you didn't do it because you don't want to cause more problems.
Speaker 2:Well, I just about six months ago got off a cane, so I don't think exercising is. I don't have a big balance, so I'm not sure what type of exercise I do. Walk in a pool, I like that, but yeah. And also when I get hot and sweaty my cortisol acts up, so that might be a reason not to do it.
Speaker 1:Well, and you know there's nothing wrong with people that do like chair yoga or water aerobics. You know we do what we can and we do what works best for our body, our health and our situation.
Speaker 2:So, allison, Obviously, she watered her knees yeah.
Speaker 4:I mean you really need to Always struggled with drinking water. That has always been like an ongoing thing. My mom as a kid would be like you need to drink, I would. I sometimes would go like a whole month without having any water. I'm just like iced coffee and diet soda are my kryptonite and um, but I have I mean not at their advice to drink more water, but I have incorporated it more because I'm like, oh my gosh, I do feel better when I drink water. Go figure, you know, but I don't think it's water, go figure.
Speaker 2:But I don't think it's going to cure your RA. Yeah no, I don't think that's going to happen.
Speaker 1:I still think you need a video of you watering your knees. I'm probably going to say that until you do it.
Speaker 4:You know what, maybe I will, especially today. It's 100 out there. I'll stand outside, have my hubby help me.
Speaker 1:I think it would be priceless.
Speaker 4:If I could find that comment, maybe I'd tag that person in it and be like look, I'm cured. That would be so awful, oh my gosh Savage.
Speaker 1:My answer to the question is obviously I was not pro. What about you?
Speaker 3:Linnea, when they, you know, suggested even like yoga. At the time I was on a walker and just moving was hard and they thought I should be able to do the downward dog and all the poses. I'm like, do you understand I'm using a, the poses I'm like, do you understand, I'm using a walker because I'm falling. Like those poses would not be safe for someone like me. But now I'm learning. There is chair yoga, there's chair exercises I can do when my balance is off With essential oils. I just I honestly laughed at one of them. I laughed, I just I couldn't help it. It was just like I laughed and they're like what's wrong? And I'm like you don't understand, I can't. If I stop my medication, the disease will keep progressing. Yes, those essential oils are helping me now be more alert. It's helping. You know the. You know there's different ones you can use for different stuff. They help. But I had to explain. I can't go without my medication.
Speaker 1:Do you ever feel like you spend so much time just explaining your illness till you're blue in the face and kind of wanting to hit your head against a wall because people are not fully listening or getting it A hundred percent?
Speaker 4:I think, and I'm sure you can understand, that when people hear the word arthritis they have this preconceived idea of what it is.
Speaker 4:I get told so many times you're too young for that. I wish I wish I was too young for this. Or they just associate it with the wear and tear of arthritis as you get older and like having to explain to them that it's so much more and like it affects the tissue. It affects so many things, like within your body, not just the joints, and like from wear and tear on your body. And like I actually have a lot of people who reach out to me in my own community just because I share so much about it in my area. Like I live in a smaller area so not a lot of people, I think, are exposed and understand all of the things that go along with rheumatoid arthritis and they're like I had no idea that's actually what's been going on with me. I thought it was just because I'm older or you know things like that. But like I definitely think that part is hard and like having to kind of educate people along the way about it.
Speaker 1:I agree and I think an issue that happens is sometimes, as people are aging, they just assume it's normal and not all forms of arthritis are normal and even if you're in your 40s or 50s, it isn't normal. It isn't, and it's worth talking to your doctor and expressing what's going on, because there's so many different forms and maybe you've had's on meds and it's changed so much for him because he had the right treatment plan based on what's actually going on.
Speaker 4:And then there was another lady in town. They told her she just had a slipped disc in her back. Now it was rheumatoid arthritis that had come in and, I don't know, infiltrated her whole body practically and she was meeting with the doctor in a couple months and she's just like because of your post that I saw you talking about it. It gave me the idea to ask my doctor about it instead of the just you have back pain type of thing, and I really hope she gets some relief because that her story is so sad.
Speaker 1:Yeah, and Allison, you have the cutest. You have the cutest town town ever. I feel like if they ever have a parade, you need to be in your own car or or something decorated up, and Allison is like the arthritis princess of the parade we always call it the little hallmark town here.
Speaker 4:we just got um done doing our annual flower festival and I actually was the grand marshal of the flower festival parade, so I got to decorate my bike all cute and I led us through a bike path. It was so cute.
Speaker 2:Have on like a flower or something.
Speaker 4:A flower crown, and.
Speaker 2:I think you need to put that on when you water your days, yes, and have your hubby take some photos.
Speaker 1:I swear he's really talented at all that he takes the best photos of you he does. He's lucky.
Speaker 2:So for a very long time I have been having issues with my knees. I was getting cortisol shots. I was getting what is the stuff? The gel, hyaluronic acid injections, and I tell you those are painful and I have to get three once a week for three weeks and it's the most painful thing ever. When my doctor, when my rheumatologist, finally started me on hydroxychloroquine, I no longer had to go get those shots. They still don't know what type of inflammatory arthritis, but I'm glad we found something and it wasn't just oh, you're overweight, your knees hurt.
Speaker 1:It's a good start and they're monitoring you and you have a community that can help, support you and answer all your questions, but it's good that they finally have you on a regimen. Do you feel like the regimen's working so far? Yeah, Pretty good for you.
Speaker 2:Yeah, okay, I love it. I do feel my eyes changing, which is probably not the best, but they get your eyes checked on that medication.
Speaker 3:That's a biggie.
Speaker 1:So I actually recommend getting your eyes checked twice a year when you're on the hydroxychloroquine.
Speaker 4:I am also on that and, yeah, I go see my eye doctor regularly and he monitors it really well. If you don't go see your eye doctor, I would encourage that.
Speaker 2:I usually see him once a year, but I have noticed changes since the last time I've seen them. When did you start it? Goodness, I don't know. Jen, do you know when I started?
Speaker 1:I feel like it's been. I feel like it's been maybe six months. Okay, it's been a while, okay. Okay, maybe it has been. I mean, everything seems it really does. It was some time ago. Jewel texted me and she's like, so I might have RA, I don't know. And I was like, okay, well, keep me posted.
Speaker 3:I can't take that one anymore, really. Yeah, it was causing a reaction with another medication, some medication side effects, allergic reaction type things going on with it.
Speaker 1:One of the first ones they tried me on and I had an allergic reaction right off the bat. It caused me to have a C.
Speaker 2:It has saved my life.
Speaker 3:I've heard great things from other people but, like Jen and I, we both were on it, we both can't take it. We both were on Remicade. Remicade yes, we both had Remicade. We both got the psoriasis from that Pest and psoriasis.
Speaker 1:When I started the podcast, she was my guest. Maybe you were my second. Yeah, amy was my first, and right off the bat we both found out that that first meeting, that the two of us had had the same allergic reaction to Remicade. It was crazy because we were told we were in the 1%. Yeah, so I mean it's proof that social media and making these long distance friends really does work. Yes, because you can really find your 1% even on a random Tuesday.
Speaker 2:I would literally be dead, had it not been for people online. When I first had my surgery for Cushing, my doctor she's like, oh well, just take some of the steroids. She's like take 20 here, 20 there, whatever you need it. I'm like what? That is not how this is supposed to go. And so come to find out I wasn't on enough steroids and I only found that out from being online, like Facebook groups, to learn about my disease and my doctor. I'm like, oh no, she's going to kill me. I had surgery in October. By December I was in the hospital within adrenal crisis and at that moment I was like I'm never going to that doctor again.
Speaker 3:That's where our community comes in. It's not just these weird advice we get. We also have weird doctors or doctor trauma. From what doctors have caused that. I think talking to each other goes okay. My doctor's not the only lunatic, it's not me, it's not in my head. I had a doctor tell me if you would just lose weight and quit hiding oh, this one quit hiding food in your nightstand and in your purse and eating it all day long.
Speaker 3:Nice assumption mister, first time I'd met this orthopedic, first time I lost it. My husband goes. How do you know? She does that? Because I sleep right next to her and I don't have those.
Speaker 3:So I think I held that trauma in until I met this community to go. Other doctors have done this to others. This isn't. I have to really pay attention to my doctor and be okay to fire him. I will say my primary doctor actually fired that orthopedic doctor because he was running an office from him and he actually was no longer there a week later.
Speaker 3:One of the office ladies called and said if you want to come back because I said I'll never come back to this office and so they called me.
Speaker 3:When he was gone, he goes I'm not going to have anybody because I know how hard you're working to lose weight and he's only just going to set you back because and I did because now everybody's telling me we'll do yoga. So I started doing all these things people suggested and I only made myself worse because I wasn't doing it properly. I wasn't doing things the right way for me, for my body, because nobody was telling me take it slower, hold a chair, sit on a chair, do yoga, you can do all these things without killing yourself, and I think that's what's so important about our community is. Talking about a weird advice is funny and hilarious, but I also in a way. There's people out there that aren't getting medication and going to doctors because somebody told them that an essential oil would cure them. Have you guys come across anybody that isn't trying medication or going to the doctor because they think they can cure it themselves?
Speaker 2:I see a lot of people in the lipoedema community like that. They don't know that they have it because their doctors don't know that they have it and they don't know why they can't lose weight. And my legs are just swollen and they don't want to hear that you might have a chronic condition. They don't want to hear that you might have a chronic condition. They don't want to hear that because their doctors told them that they're just fat and they need to lose weight.
Speaker 4:So it bothers the hell out of me. I would have I've switched gyms, actually just because my employer will pay for this other one for me to go to. So I'm like free gym membership Heck, yes. But I would have a gentleman that would constantly try and correct my form on different things. And I get that I'm trying to be helpful and I would repeatedly tell them I'm doing it this way because it's my limitation with my joints and things like that. So they would. And finally, after a while I had to set that boundary. I said please do not come up to me and talk to me anymore. I've told you enough. This is what I have going on. If you can't respect that, just keep your comments to yourself. And he never talked to me again. But I don't see him anymore.
Speaker 4:But I was going to comment. Julie, you mentioned something about how people don't want to believe they have something wrong with them or a condition, and that's where I was with myself. I was in denial. I let myself go a whole year of essentially not being okay, Like I was almost to the point where I thought I was going to have to go and be in a wheelchair for the rest of my life because I could not dress myself, I could not practically feed myself. I was in like a bad state and I just was like you know, if I just sleep more, if I just change my diet, like all these things that you know you think might be wrong with you, I think denial is a big part of why people also don't seek out care for themselves and or don't want to go to the doctor because they don't really want to find out that there is something going on with them.
Speaker 4:It wasn't for my husband being like, looking at me and being like this is not normal. You do not live like this. We're getting this taken care of that. I probably would have even longer gone on and just suffered through that.
Speaker 2:I had the opposite experience. I'm like, hey, there's something wrong with me. Everybody's like, no, you're fine. I'm like, no, there's something wrong. And I'm going to the doctors and everybody's telling me I'm fine. And I'm like, no, there's something wrong. And I'm going to the doctors and everybody's telling me I'm fine. And I'm like, no, there's something wrong. My family now thinks I'm a hypochondriac, and my friends now think I'm a hypochondriac because there's something wrong, and it's like I'm like there's something wrong, nobody. The blood work is fine, though. It's fine until it's not.
Speaker 1:It's fine until you actually know what to look for. I think it took me years to realize that sometimes some of the blood work will show things, but sometimes it just takes time and that's why they couldn't diagnose me right away is because I didn't have enough showing up in the blood work. I was just in the beginning stages and now everything's showing up in my blood work and I wish it wasn't, and that's okay. Do you think people feel the need to offer these cures?
Speaker 2:They feel uncomfortable. When people don't know what to say, they just kind of word vomit. I think sometimes they feel uncomfortable with your situation and they feel like maybe I can help or there's something I can do, or what should I say or what can I say, and it's like don't say anything. Don't say anything, you don't have to say anything at all.
Speaker 1:Just be there. It's OK to be quiet. We don't always have the answers, we can't always help. It's okay to shut our mouths and just listen right.
Speaker 4:I like to think that people or at least I would hope people come at it with good intention, and we all know that they sometimes don't. Sometimes it's ignorance, but I feel pretty fortunate that I don't get unsolicited advice very often, so I can't say too much on that. But outside of you know the one water yourself comment that I experienced. But I do see it a lot, though, on like posts and things like that, or commenting and agree like a comment doesn't need to be made. I really liked your point because it's they're uncomfortable with your situation. When you said that, jewel, I was just like what a statement that is. That is 100% true and I didn't really ever look at it from that perspective that maybe that person is making that comment because of that. So that was really eye-opening that you said that. I agree.
Speaker 1:Have you ever had to set a boundary around unsolicited advice?
Speaker 3:When I worked at the school district I had to. I had one of the somebody that was another secretary that was under me and she kept telling me you shouldn't take that medicine, it's just killing you. I was on methotrexate at the time but it would make me sick, so I would be sick for several days on it, and so on Mondays I would spend a lot of time in the bathroom puking, but my boss was cool. My boss didn't care. He understood I got my work done, but she would come up to me every single week. That drug's just killing you. I said no, it's actually letting me work a few more years than I thought I was going to get to.
Speaker 1:Would she say the same thing to a chemo patient?
Speaker 3:No, she wouldn't, Because there was somebody in the office that was going through chemo. I'm like, do you understand that methotrexate, even though it's a lower dose, for me it's still a form of chemo. So when you see me sick and so I no longer take it because I just it didn't matter, I was sick all the time, I just have a bad reaction to medication and so, but that was hard, that was hurtful, that she said I'm going to, I'm killing myself.
Speaker 1:It's not helpful at all.
Speaker 3:No messes with your brain, it messes with your head.
Speaker 1:Especially because you need people around you to encourage you and support you, not people to criticize your choices.
Speaker 3:Every week. I was so glad when I left because of disability, my doctors told me I had to quit. I was not doing well enough to work. I was so glad. That might be the only thing I don't miss is all the criticism, but the teachers were awesome. They would bring me snacks. They would bring me ginger ale. They bring me, you know, ginger snap cookies, like one brought me salsa one time because I had a craving for salsa the week before and she her husband owned a Mexican restaurant, so it was homemade like authentic salsa, and so it's just. I miss those things. But in the trade-off I got all of you that really could see me for me and not my illness like everybody at work. So that was my experience.
Speaker 2:To be honest, people don't ask me about my illness. I get the random person that'll say something stupid, like what I read earlier, but people don't ask me what's going on. They'll just see me Like. For a long time I was on my walker. Nobody asked.
Speaker 4:Nobody, I kind of, can relate to that, unless they can physically see something going on with you. Sometimes I walk with a limp or sometimes I'm just really slow, and you can just read it on people's face when they're in pain, like you know, when they're. That's the only time I genuinely get asked are you okay? Outside of that, it's 100% what. It is an invisible illness, you can't see it, so people don't think there's anything wrong, and then it'll just be like what's wrong with you? I hate, I hate that saying what's wrong with you, but I try and think that they're coming from a place of care and that they care. But you know, at the same time it just was like well, there's nothing wrong with me, I'm just dealing with something.
Speaker 1:Okay, what I think is I thought it was hard when people couldn't see my illness, when I was able to disguise it better, but then when I had the pustular psoriasis breakout, that's when it got more difficult for me, because then suddenly I got all the pity looks and that just lifted me in. I got tired of people looking at me with the pity of what I was going through. And it was good friends that did it. It was in a loving way. It was like oh my gosh, your poor hands are getting worse, aren't they? I'm so sorry. Is there anything more they can do for you? I'm worried for you. Have you made sure it's not infected? I mean all great intentions and all protective people. But it was a rude awakening for me to say to people wow, I kind of liked it better when you couldn't see what was going on with me and I could just kind of fade into the crowd.
Speaker 3:I will have to say I was very fortunate when mine started, jen. It was 2020. Nobody could see me and mine was all over my face, like it was all like on my face, on my scalp. Like I was so glad I never been so glad of like a shutdown, because that meant I didn't. Nobody had to see me. I shaved my head. There's pictures of me with only like a faux mohawk, like out there, because it gave my scalp a relief not to have that hair there. But I couldn't imagine having to go out in public with my face the way it was or on my hands. I had it on my arm Like I'm so sorry you had to do that, jen.
Speaker 1:Thank you. I feel extremely fortunate that it was never on my face. It was all over my scalp. I remember going in desperately asking the hairdresser for help and terrified to even show them what was going on. But there were sores all over my scalp and it hurt so bad and then, of course, it would flake off into my hair and so I was embarrassed. I wanted to know if there was any option of what we could do for it, any option of what we could do for it.
Speaker 1:But most of all, my rheumatologist was working on trying to get my hands and my feet under control, because the rest of my body under my chest, on my stomach, my arms, my legs, those were starting to go away. But my hands and my feet had a hard time healing. I think part of it is you're wearing socks and wearing shoes and you're walking, and then your hands. You're doing things and you're washing. You're walking and then your hands. You're doing things and you're washing your hands all the time. And so constantly having things touching my hands and my feet all the time made it harder for it to heal and they really were worried they were going to have to send me to wound care for my feet because they were that bad. I just feel really fortunate that they tried me on Otezla and it worked until it didn't, but at least it worked for a while.
Speaker 3:I feel like we're getting good information out there and they're hearing true life. They're hearing raw moments from all of us that isn't scripted and I almost think sometimes people like us need to hear people talk the way we are today.
Speaker 1:Exactly.
Speaker 2:I'll tell you all a story. What was it about two years ago? I still have very much so back pain, all the pain, and I was on a walker and we went out of town. We flew to Chicago and my husband tore his Achilles and so we were coming back to Atlanta and he was in a wheelchair. I was in a wheelchair, my kids had my walker and we were going down, but people would see him catering to me. They're like well, why is he helping her? Shouldn't she be helping him?
Speaker 2:And people give us weird looks, and that's the thing about invisible illness. You don't know what's wrong with me. You have no idea. You just see that I have a hard time walking. You see that I'm obese and you think that she's just fat. She can't walk because I look perfectly normal. So that was a situation I had and I didn't like it because it started to make me feel like well, maybe I am the one that needs to be helping him, or maybe I am the one that, or or I feel bad because he is helping me well and and let's back up here it sometimes it's both people that are having things going on.
Speaker 1:That's not an ideal situation, but there's nothing we can do about it. There might be a couple where they're both struggling just to get by.
Speaker 3:Just need to be kinder people, because everybody is fighting something. Depression is invisible, anxiety is invisible. It's dependent on how yours reacts. But there's so many diseases. There's people that have cancer treatments that you would never know they're having a cancer treatment because they put on their face. We're actors and actresses. I mean we all deserve. We need a Spoonie trophy for all this crap that we went through. I want the trophy. I deserve something.
Speaker 1:What is the most common but completely unhelpful tip that you have?
Speaker 3:ever heard. That was in newscast. Am I going to say it right? Conovart Conovore Diet. Conovart Corner. That one just made no sense to me when people would suggest it to me because of the meat they're suggesting I buy at the store has so much in it. That's not clean, do you not understand? That's not clean. Those are the people that I struggle. Yes, the diet, full-blown keto. Now, don't get me wrong. Some of us are on those because of gluten, yes, triggers or diet triggers, but they think it's a live-by for everybody. But the corner, yeah, you know that one troubled me, like I could do it, but I eat clean. I don't eat clean meat, but have you guys?
Speaker 1:what have you guys thought? Here's the problem. There is such thing as the meat sweats.
Speaker 4:No, thank you I didn't like they bring that up in a friend's episode. Joey was just like I've got the meat sweats or something yes, and it's a.
Speaker 1:It's a thing. My son has done that the keto thing and and, and he does these meat diets and i'm'm telling you, you see them getting the sweats.
Speaker 2:It's gross. And here's the thing I have high cholesterol and high blood pressure, so I don't think any of that is really good for me. That'd be dangerous.
Speaker 1:No, yeah, I have high cholesterol from medication, but without it, like if somebody were just to be like, oh, you don't need that in your life. Well, that's another one of my examples of yes, we do. There are times we need medicine for diabetes, cholesterol, all the things. So mind your own business. If you want to do you, you do you.
Speaker 4:I had someone kind of passively say to me and it kind of falls into this if you can tolerate your pain, then you don't need treatment anymore. I was just like they're like oh, you've reached a plateau where you can tolerate it, so you can go off your meds and you don't need that anymore. And I was just like no, I'm there because of my meds and I think a lot of people they think the goal is to get yourself better so you can get off of medication and they don't look at it as I need to be on medication so I can function like you. Like I would love to not be on three different medications right now, but that's my reality and it's so I can function even at a fraction of what you are as normally functioning it makes no sense.
Speaker 3:It's that medicine shaming people do. They think you're even with your blood work. Oh, how's your blood work look? Oh, it looks good. How do you get to come off your medicine? No, no, it's not like other diseases, where you take the medicine and you're cured, but there's a lot of diseases that don't. There's cancer patients that are taking chemo long term for life, so why is it okay? You don't shame them, and no shame to any person battling cancer, like my mom battled it and had RA. So there's no shame. I don't want anybody to think I'm, but I wish people understood that People did that.
Speaker 2:More People did that to me when they would find out I was on pain meds. It's like, oh, you're on pain meds, you don't need that, or you're going to get addicted, or you're going to this. I kid you not. I called my doctor and I said it was maybe it was sometime after my spine surgery and I said I don't think I need the pain medication anymore. I think it's working with the Tylenol. And he says you don't need it. I said no and I went cold turkey off of my pain medication and people be like, oh, you get addicted. I'm like, I'm not addicted to pain medication. I went cold turkey and people just look at me like how'd you do that?
Speaker 3:I stopped taking it, like not saying that doesn't happen for everyone Right In the same way.
Speaker 2:Not everyone gets addicted to pain medication because they're on it. I was on pain medication to help with my pain. Once my pain was gone, I no longer needed pain medication. What happens is people like the feeling of that high and they use that as an excuse to say I'm addicted to pain medication. No, you're addicted to the feeling that that pain medication gave you.
Speaker 3:I don't feel that high. I don't know why they think that Really.
Speaker 2:I hated it. So I was on hydrocodone 7.5 and I hated it because I felt so and it's not like I hit my pen, you know, high, it's like a medication, high and I just don't. I don't like the feeling of it. But it helped with my pain so I took it, yeah.
Speaker 3:If you're afraid, tell your doctor. Let them figure out what's going to work for you. Now I would love to do another episode I think we're going to do it talking about cannabis and how it can help pain. But I think people need to understand it's okay to use what you need to use for pain as long as you're not abusing it. But don't sit in silence and suffer like you're not enjoying life. Take a pain pill so you can go do something with your kids or your husband or your dogs or whatever Like're not enjoying life. Take a pain pill so you can go do something with your kids or your husband or your dogs or whatever Like take a pain pill.
Speaker 2:I'll tell you, like when I first got sick, there were a few things that I in my head didn't want to happen. So before I started pain medication, it was oh, I don't want to be on pain medication because I don't want to become addicted. Then, when I figured out that I can't walk by myself, it was like, well, I don't want to be on a walker because a walker is for old people. Right, I'm too young for that. And then it was like, well, now I got to be on a cane. Well, a cane is for old people, I don't want to do that. So it's like we put these judgments in our head that we don't want to do this because of this reason, when we actually in fact need those things. I needed the pain medication. I was not okay, I needed the walker. I did not need to fall. I have osteoporosis. Who knows what's going to break. I needed the cane because it kept me stable and it is okay to need those things if you need those things.
Speaker 3:Yes, and don't shame people that need a cane and a walker, no matter their age, like I got shamed so much because I was in my on a walker, like and I'm sure the rest of you have had that, and I am 48 and had to go back on my cane recently and I'm telling you, as Jen, I've struggled with using it because I gave it up and I'm realizing it's okay to use it, it's only temporary, it's only temporary, it's always there.
Speaker 1:If you were a midget like me, I would send you my cool cane. I want your cool cane, yeah, but you guys are too tall Because I'm 5'2. On a really good day, really good day.
Speaker 3:How tall are you, allison? I'm right there with you 5'3. Okay, so see, look, if Allison ever needs a cane, there you go, she gets the cool cane. But we better all get pictures.
Speaker 1:Yeah, fashionable canes Over there doing a happy dance and sent me a really cool cane to show people and I was like cool, I might need this someday. I don't need it now, but cool beans and I'll show my community. And it's cool, it's pink, it has light up bubbles inside of it.
Speaker 4:I'm a pink girl and it glows in the dark, so it lights up and glows when I saw um Selma Blair walking at the award show and she had the cane, I said if I ever need one, I want to look like her and be a diva with a fashionable cane. He goes I will buy you the best cane there is. If that is the case, I showed my husband a picture of her.
Speaker 3:Yeah, I have a purple one. I went camping recently and my, my granddaughter, decorated with for me with really cute paw patrol stickers that don't go with my purple cake. That's so cute. I left them on there till that's okay, though, anything for them exactly, I did find it.
Speaker 1:I have a coupon for 15 off. If anyone needs it, ever and with fashionable canes, you can use the coupon code gen for 15 off. Listeners until next time. Don't forget your spoon.
