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Patient Stories, Podcast, support group

Finding my Purpose while Living with Osteonecrosis and Osteoarthritis: Deb Andio’s Story

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Summary:

In episode 193 of the Arthritis Life Podcast Cheryl and Deb Audio discuss Deb’s long-term experience with osteoarthritis and osteonecrosis. Deb shares her personal journey, including the emotional relief and challenges of receiving a diagnosis at a young age and the importance of movement and lifestyle adaptations.

Beyond her personal battle, Deb has established a global support group for those with osteonecrosis and actively participates in the Arthritis Foundation’s Live Yes! Connect groups. 

Highlighting the power of community support and advocacy, Deb’s story is an inspiring testament to resilience and the importance of helping others navigate similar health challenges.

Episode at a glance:

  • Deb’s Journey: Cheryl and Deb discuss Deb’s journey with osteoarthritis and osteonecrosis.
  • The Power of Community: Deb shares how having a community is important for support and connection in the chronic illness world.
  • Deb’s Support Groups: Cheryl and Deb discuss Deb’s global support groups and the Arthritis Foundation’s Live Yes! Connect groups. 

Medical disclaimer: 

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

Episode Sponsors

Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now! 

Speaker Bios:

Deb Andio bio

I’m a proud  62year-old  Christian grandma, mom, and wife and I founded the and Avascular Necrosis – Osteonecrosis Support International Support Group, with over 1,650 members worldwide. I also volunteer as the Eadt Region Lead and a facilitator for the Arthritis Foundation Connect Groups, including OA National and Central Florida.  Living with OA in my hands, knees, neck, spine, and feet, I’m passionate about supporting others navigating these conditions. I am the creator of the AVN- ON ribbon adopted by thousands of people in many countries and I blog and raise awareness on various social media platform’s. I also blog about my ministry.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for over twenty years. Her life passion is helping others with rheumatoid arthritis figure out how to live a full life despite arthritis, by developing tools to navigate physical, emotional and social challenges. She formed the educational company Arthritis Life in 2019 after seeing a huge need for more engaging, accessible, and (dare I say) FUN patient education and self-management resources.

Episode links:

Full Episode Transcript:

Cheryl Crow: I am so excited today to have Deb Andio and she is gonna be talking about a condition that we actually haven’t covered on the podcast so far which you’ll hear. That’s your little peaking your interest. But Deb, welcome so much to the Arthritis Life Podcast. 

Deb Andio: Oh, thank you. Sure. 

Cheryl Crow: Yay. Thank you. Can you let the audience know where do you live and what is your relationship to arthritis?

Deb Andio: Well, I currently live in central Florida. Just moved here about 18 months ago from Ohio. Originally a northeast Ohio girl up until a year and a half ago, and I have been diagnosed with osteoarthritis at the age of 30. Currently I’m gonna be 63 shortly, so I’ve had it for a long time. And then I was [00:01:00] diagnosed with spondylolisthesis and also osteonecrosis in 2014. 

Cheryl Crow: Wow. And that’s, that’s what I was referring to when I said that you’re discussing a condition that I haven’t had on the podcast yet, which is osteonecrosis. Can you explain a little bit? What is that condition? 

Deb Andio: Well, osteonecrosis basically is also known as avascular necrosis.

And what that is, it’s when you make it either an injury to the bone or it can happen if you have too many steroids over time. There’s a lot of different ways to get osteonecrosis. But what it is it’s when the condition where the bone tissue dies due to a lack of blood supply to that bone, and then of course without blood supply, which is our life, it can cause the bone to collapse and die.

Cheryl Crow: Wow. And is that more common in people with osteoarthritis? 

Deb Andio: Well, [00:02:00] sometimes it’s odd, it’s like a double-edged sword. Because you can get osteoarthritis and osteonecrosis, but if you have osteonecrosis, eventually it can lead to severe secondary osteoarthritis. 

Cheryl Crow: Wow. Okay.

Deb Andio: Yeah, and I think in my case, I had the osteoarthritis first and then injured my knee and it ended up affecting the blood supply. 

Cheryl Crow: So yeah, and when we say a vascular necrosis, it means like necrosis is like the death of a tissue and avascular is like without blood flow. So that makes sense.

And I’m just curious from your own, like personal, subjective or lived experience going back first to, I’m gonna go back in time to when you’ve got your first diagnosis of osteoarthritis at age 30. What were some of your symptoms and what was it like to get that diagnosis at a relatively young age for osteoarthritis?

Deb Andio: Well, I had chronic knee [00:03:00] pain and it was affecting my back as well because it seemed like my gait was off. And when I would go to the doctors back then they’d be like, oh, you’re too young for this. And I’m like, well, I gotta have some type of explanation for the pain. And they’re like, well, maybe you just overdid it or but the pain never seemed to go away.

I had it for years and finally. I got an official diagnosis at about 32 years of age, but I had the symptoms of osteoarthritis from probably age 29, so 

Cheryl Crow: Wow. And yeah, it is. Just like with rheumatoid arthritis, even though, you know I said you were relatively young for osteoarthritis. But does, but I didn’t mean to imply that young people cannot get it. It’s just a little less likely, whereas with rheumatoid it’s you, they’re a lot more likely to get it at in the twenties or thirties. Yes. But what did it feel like to get, like emotionally to get that diagnosis? Were you validated or confused or? 

Deb Andio: I was finally [00:04:00] validated because, sometimes back then, I was almost insulted on a regular basis because I was always in good health. I was in good shape, and they thought I was drug seeking, and it really was very frustrating. It’s i’m here because I have pain. I don’t know what to do about this pain. It’s affecting my everyday life. It’s affecting my job, and I need to figure out what’s going on.

I was so happy and sad at the same time, but I was validated and I was just relieved to know that I had something because I knew something was going on in my bones that I couldn’t explain. There was what they called structural changes on my x-rays, but they never officially diagnosed me until I kept pressing.[00:05:00] 

And I mean, I probably went through four or five different orthopedics before I found someone who would actually listen. 

Cheryl Crow: Wow. And I’m just, sometimes I think back to my former self as well, and thinking back to your former self, and just give a little hug to that person because it is such a frustrating, demoralizing experience to feel pain and be told repeatedly that you’re, and I mean, in your case, you’re, it was implied that you were drug seeking.

Deb Andio: That’s just, yeah. It’s so frustrating. I was like, I don’t even take aspirin. So that’s you. I didn’t take Advil, I didn’t take Tylenol. I was not, I ate healthy. I ate clean even 30 years ago. I was more on the vegetarian side than, eating junk food. And I was just really stunned that a professional could say that to me. And of course, I did report that [00:06:00] professional and I fired them as well and then moved on. So, but I was so happy and relieved honestly, when I found out that I truly had something because I knew at my age there was no way could I stop hiking. I hiked all the time. When I was in junior high, I ran track and things like that, and to find out that I’m having a hard time walking up three flights of stairs at 30 years old, something had to be wrong. 

Cheryl Crow: I mean it’s really, it is such a gut punch when you’ve been used to being so active and you just get this hit with this pain outta nowhere.

And Yes. We’re gonna talk about the osteonecrosis too, but before, since you were, had, sounds like about 20 years, had just quote unquote, not to say just, but you had the osteoarthritis diagnosis, without concurrently having the osteonecrosis. What were some of the treatments, whether that’s [00:07:00] medication or a lifestyle that gave you some relief during that time and helped?

Deb Andio: Well, honestly, I didn’t find much relief except for lifestyle. And for a while there I was feeling sorry for myself and I quit moving around so much and I noticed when I quit moving, I had more pain and I thought, okay, I have to get it together and just keep going. And over the counter, NSAIDs helped somewhat, but I wasn’t a fan of taking things like that. Back then they didn’t have PRP injections like they do today and things like that. I did take a couple pog injections in the knee and honestly that didn’t really do too much. The first one helped, but then the second one left me with more pain than I had originally.

So I chose not to go that route either. I just found that it interfered with my life too much because then my knee [00:08:00] was swollen, I couldn’t work as much and it was always one thing fixing it led to something else being a bother. So I just rolled with it really for years and, just tried to adjust my lifestyle. I quit hiking as much which really was sad because that’s something I love to do. And, any way I could do things to help ease the pain I would, heat was a godsend for me, more than cold. Some people need cold to help them. I couldn’t tolerate the cold. Heat is what really was a great thing for me. So. 

Cheryl Crow: Yeah, no, thank you so much for sharing. And yet it really does seem to be an individual preference when it comes to heat versus cold. I find that with rheumatoid arthritis, there are times my joints feel really hot and inflamed. And in those cases I do want the opposite, like I want to cool them down.

But when my joints are cold and [00:09:00] tender or stiff, I like to do heat and I also just in general enjoy heat, the feeling of heat. So, more than cold, I think. Although, you know what, I’m not, everyone’s like that. People now are doing cold plunges all the time, so who knows, but 

Deb Andio: Oh, I know. I can’t do that.

Cheryl Crow: Yeah. Well, yeah, I think it’s an interesting example for me having rheumatoid arthritis. Just as a little educational tidbit for those listening for rheumatoid arthritis and the other inflammatory autoimmune forms of arthritis, we have what’s called disease modifying, anti rheumatic drugs, or really target, they call ’em targeted treatments because it’s your immune system that’s accidentally or misfiring and attacking the synovial lining of your joints.

And the medications really directly suppress those immune cells that are doing that, whereas with osteoarthritis, still in the year 2025 with over 50 million adults having osteoarthritis, there are none that I’m aware of, direct targeted treatments. I think because it is, it’s a process where something has [00:10:00] gone away, right?

You’ve had an erosion of the cartilage, so you, there isn’t like a medication that I’m aware of that’s gonna put it back in. I mean, I guess there’s joint replacement surgeries, but long story short, it’s just, it is helpful in a way. I sometimes feel like looking at other conditions that don’t have targeted treatments for me, makes me feel more grateful that I at least have access to them, even though they might have side effects or other things.

So, little tidbit I sprinkle in little educational tidbits in addition to your educational story. And I just, I think a lot of people get tired of being told to just keep moving or keep exercising, but the personal stories and examples like yours where exercise helped is just really I think very helpful for people to hear. I know my own mom has osteoarthritis on one of her toes, and she says, she doesn’t do her 45 minute walk to an hour walk every day. She’ll feel it like within that day if she skips it. Is that similar for you? 

Deb Andio: Yes. Yes. And there’s times where you might think you need to do all your [00:11:00] steps at one time.

There might be times I have to space it out into three times in a day. Because if I’m in pain already, even though I can’t say walk a mile right now, I might split it up into two halves in the morning and in the afternoon and so on. So yes, I agree. You have to keep moving for it to. 

Cheryl Crow: Yeah. And I’m gonna share in the links, ’cause now we’re gonna talk about avascular necrosis or osteonecrosis. And I will share some links. I’m a very visual learner, so in the show notes I’ll share some links where you can see the difference between osteoarthritis and osteonecrosis. But if you think about osteoarthritis, I think about the cartilage is the main thing that’s being damaged.

Sounds like with osteonecrosis, from what I’m seeing in reading in my little research is it’s the actual well, and sometimes that over time that cartilage loss can lead to little areas of the [00:12:00] bone eroding over time. But whereas the avascular necrosis seems to be more severe loss of the bone.

And so how did you get diagnosed with that? Or like what were the symptoms you were feeling that led to that additional diagnosis? 

Deb Andio: Well. I was actually exercising one day in the living room. I was doing a video and I felt this very sharp pain in my knee that almost took me to the ground.

And I knew I hurt my knee somehow. I didn’t know how, but I called my primary care doctor. He had me come in, checked it out, told me he wanted me to get an MRI. I got the MRI, and that’s when I was diagnosed. They had seen on that MRI that I had small form of a necrosis in my right knee and the medial femoral condyle, which is on the inner portion of your knee.

Cheryl Crow: Wow. So the imaging was what really definitively? 

Deb Andio: Yeah. 

Cheryl Crow: Okay. That’s [00:13:00] and what were the treatments for that? If there’s anything. 

Deb Andio: There really wasn’t a specific treatment. What they suggest is that, what was suggested to me is if I wanted to save my knee the best thing to do would to be, I’ll use crutches and I am not the most graceful person when it comes crutch. I’d probably hurt myself more if I was using crutches on a daily basis, so that was not an option. So they immobilized my knee with a knee brace, told me to rest it as much as I could, which then in turn left every other area I had osteoarthritis in stiff and sore, so trying to help one area, agitated other areas, but over the course of a couple years, I did my research and I found a company that did PRP injections and I thought, I’m gonna look into it and [00:14:00] see. And because typically, they say that the more corticosteroids that you have, the more likely you can develop osteonecrosis in high doses of course, but at the same time it’s not something I wanted to take because I felt like I was just battling against myself.

I’m trying to heal one way and at the same time, the research I’m reading tells me not to do something. So I chose to go outside the box and found an orthopedic doctor who did PRP injections and it, to me, honestly, was probably the best thing I ever did. Because they told me that my knee would most likely collapse within two to four years.

It’s been 11 years. My osteonecrosis has not changed any further from stage one than it did the day I was diagnosed. Now granted, there’s times the [00:15:00] pain is more, but then there’s times where, you know, I just recently got an MRI not long ago, and they told me I have more severe osteoarthritis versus the osteonecrosis end of it now.

So even though the PRP injections helped, it did save me at this point so far, from having a total knee replacement because the bone has not collapsed, so I’m extremely grateful to jump outside the box and try something different. 

Cheryl Crow: Well, and yeah, it’s a good example of any given treatment, there’s a, there can, there may be a lag between when the treatment is shown to be effective and when it’s considered like an

evidence-based practice because they have to mount a whole bunch of evidence to get, like insurance to cover it and blah, blah, blah. We know our healthcare system, 

Deb Andio: yes, mine was not covered at all. I paid out of pocket now to [00:16:00] have the the blood draw and all that. The PRP itself, where they spin it through the centrifuge and then they separate the platelets that was covered by insurance, but the injections, that portion of it was not so that I paid out of pocket. So 

Cheryl Crow: Well, and I’m gonna put a link in the chat but there’s a, or not chat, I keep saying chat. I mean the show notes on the Arthritis Life website, but it looks like the American Orthopedic Society for Sports Medicine does endorse platelet rich plasma for osteoarthritis, particularly moderate osteoarthritis in the knee joint.

So it could also be that it may not be always used in unless it’s in the right joint. But that’s just an incredible, I mean, I’m so glad for you that it’s been, then, it’s been working so well and allowing you to prevent any further complications 

Deb Andio: Damage Yes, absolutely. And today going back to [00:17:00] osteoarthritis, they have so many new therapies and treatments that they’re doing.

Of course it’s not always covered by insurance because right now they have like low dose radiation therapy to help treat osteoarthritis. A lot of people will try that if they don’t if they’re say not a candidate for, surgery or a joint replacement, they may use that. Either maybe their age or their weight, or for whatever medical reason, they may not be a candidate for surgery.

They may do that. There’s a lot of different things. Stem cell injections, A2M PRP. There’s a lot of different things. It’s down, on, coming through the pike, and not all of them are covered by insurance of course. But for me, I weighed my options and what my copay would’ve been for a knee replacement.

I could have had PRP injections probably three times. So for me, I not only got [00:18:00] to keep my original joint but you know, now i’ve benefited from it. So, and I’m not saying I don’t have pain or I don’t live in pain. Because I do, but, i’m grateful that I haven’t got to the part of collapse to where I needed that total knee replacement, which is what I’m trying to not have to do.

Cheryl Crow: Yeah, totally makes sense. This is really helpful. Well, and I know this is like setting the stage of the background of your own experience, but you’re a very generous person in my experience, and that you do a lot to support others in the arthritis community. And the avascular necrosis osteonecrosis community.

And so I wanna make sure to spend some time talking about, how did you start? Your journey of helping other, supporting other people where did that kind of come out of and what does that look like? Sorry, that’s a very vague question, but however you wanna say 

Deb Andio: yeah, it’s, well, my parents were always, we always gave back to our community, so I was always brought [00:19:00] up to help your community. And when I was diagnosed with osteonecrosis, it was devastating because I looked for support groups and I couldn’t find anything. You can find arthritis support groups, but osteonecrosis was like what’s that? And even when you looked online, there was very little information at that time.

And it falls under the rare condition umbrella and that wasn’t acceptable to me. I wanted people to know about it. And if I was feeling, when somebody says you have bone death, that was very scary for me. I’m thinking, I was 50 years old at the time. I wasn’t planning on having to medically retire at 51 years old and due to all these bone and joint issues, I was still like, this was just not part of my plan.

So, and I thought if I was feeling this confused and scared and fearful, of [00:20:00] what’s gonna happen to my bones because I never really got a clear cut answer, I knew other people had to feel the same way. So I started a support group and over the course of 11 years, it’s grown from about 25 people originally to almost 1700.

And it’s now, instead of locally, it’s worldwide with 22 different countries. I have members from various countries, so, we may not all understand each other, and sometimes we might not communicate as well as we like because we’re all different. But one thing for sure is when it comes to a diagnosis, we’re all in the same platform and everybody wants to find not just a cure for things, but a good treatment option because, I’ve got people in my group who were diagnosed as young adults at 16 years old that had to have a joint replacement. [00:21:00] And, that’s would have to be terrifying. I was terrified at 50.

I can’t imagine how someone 16 years old felt. And so I knew I had to do something. And so, the group started, I was surprised at how fast it grew. And then I ended up making a cause ribbon that everybody seemed to adopt as their own, which was fine. And it’s just been a great, journey that way. And because if I was feeling alone, I knew other people had to be feeling that way too. 

Cheryl Crow: That’s so inspirational, to me and resonates with me as well on a personal level. Even though RA is not a rare condition, it’s like one in a hundred women who are adults have it.

But I still felt like there weren’t enough supports for people with it, which motivated a lot of my work. But I was gonna, just to clarify, your support group, it’s on Facebook, correct? 

Deb Andio: Yes. 

Cheryl Crow: Okay, good. ’cause I found a link to it, which I [00:22:00] wanna put in the, I’ll verify with you before publishing this in the show notes, but yeah, I think it’s, I mean, also just stating the obvious maybe, but it’s a testament to the power of social media as a platform to connect people across the globe with rare, more rare experiences. I have a friend whose son has a genetic disability that only 50 documented people in the world unfortunately don’t, usually, they don’t usually grow to adulthood necessarily, but have, and so she’s, but she’s been able to connect with like half of those families around the world because of social media. So anyway, we, I think people,

Deb Andio: yeah, the power of, of that is one great thing.

Social media is a fantastic tool to get your point across to draw people together and raise awareness and you don’t realize how many people are truly suffering. And in fact I have several doctors in my group and [00:23:00] therapists and things like that, and we were going through this during COVID where we thought, with all the steroids that were being used and it was people were watching and some of the orthopedic doctors are now doing paperwork because those that were on super high doses that were very ill, their chances can increase. So you have to be careful. And some of the treatment options like bisphosphonates certain medications to help stop deterioration of the bone. You have to be careful because if you have dental work that you need to do, it can cause other issues. So you really have to be careful with what you’re doing. So you don’t create one new problem trying to solve another. 

Cheryl Crow: That’s so important, and I think you made a point earlier about that feeling of being newly diagnosed.

Whether you’re 16 or 50 or 90 [00:24:00] and that natural fear it’s almost I don’t know if you felt the same way, but I felt like I really, I treated my body well before my diagnosis. It sounds like similar to you. I was an athlete, I was the captain of my soccer team in college.

But I still took it for granted. Like I thought, well, if I do the right things then my body will be good. How a lot of people are raised or not, we’re not raised, but just assume, and it’s a such a destabilizing experience, but important one to recognize that there’s an element of maybe randomness or things outside of our control that, something happened and you had that bone loss and or that blood flow lost to your bone. And what was, where was I going with that? Oh, just the power of having other people to support you in that period of time. So that’s so helpful. And I was looking up, trying to look up like the incident, or sorry, the prevalence of avascular necrosis.

It sounds like it’s a little, it’s a little hard to find the exact in the United States, it’s about [00:25:00] 10 to 20,000 new cases per year. 

Deb Andio: Yes.

Cheryl Crow: Okay. Is that correct with what you’ve, okay. Yes. So that’s, given the population of the US of 380 million or whatever it is rare. But it’s something to know about, if you have a history of a bone injury, or a joint injury the other thing I wanted to point out, again, there’s just little educational tidbits I know of the people who listen to this podcast tend to be really like into, research and learning and I’m sure you all know how to do your, those listening, know how to do your own research. But I did wanna just point out that the common joints affected in osteoarthritis versus osteonecrosis are a little different.

Like they overlap, the Venn diagram overlaps, but it’s not the same. So, looks like for avascular necrosis, it’s more, it’s the big ones, like the hips and the knees. And then potentially shoulders and ankles. And then, whereas osteoarthritis, I believe it’s most common in the hands and knees, hips, and then potentially spine too.

So, [00:26:00] yeah. But, and that it is a different disease process again, of the bone from osteoarthritis. Your bone’s not gonna like collapse literally, but it can from the avascular necrosis. So 

Deb Andio: Yes.

Cheryl Crow: Yeah. Yeah. I think that’s a little bit more of a, I would imagine that if I had the diagnosis, I would have a, specific fear of this weird idea of like my joint, my bone couldn’t just collapse. Excuse me, yes, this is my body. Like what? 

Deb Andio: Yes. ’cause I wasn’t sure what was going to happen. And when you’re talking with a orthopedic who was giving you as much information as possible, but still quite vague because they don’t have a lot of time to sit there and, go through everything with you.

Which is another thing which I love about having awareness is because you can’t always spend a half hour, 45 minutes with your doctor, and you might need more information. So research is always the key no matter what you’re diagnosed with. But he was just the orthopedic I had at the [00:27:00] time was like, I’ll give you three or four years.

You really wanna consider getting a joint replacement because your knee is going to collapse and that was so scary to me. I’m thinking, how am I gonna do my job? And then the pain just kept like my bones at that time, especially the right knee which had the osteonecrosis in it. Even today, it feels like there’s a tourniquet around the top of my kneecap and below my kneecap.

It is always cold. It could be a hundred degrees out here in central Florida, and my knee feels like it’s about 30 degrees. And then of course when I lived in Ohio and it would get cold, I could barely move. There was just no way could I do it. And that was besides family. That was another reason why we moved here was for the heat factor.

So because I’m a little more mobile. 

Cheryl Crow: Yeah. Yeah. And that’s a huge [00:28:00] factor. A lot of people ask me, well, you live in Seattle, like, how do you deal with the weather there? But it’s actually very mild. So for me I do okay, as long as it’s not the extremes cold or extremes hot. You just have to know your body.

I’m okay with actually the dampness. I don’t do well with hot humidity like Hawaii. But so you have to know your own bodies pattern. And I did wanna, I wanna talk about the Arthritis Foundation groups too, but before I forget, you mentioned, how painful it was to lose your job. Can you talk a little bit about share what that job was and what was the process of retiring early?

Or medical retirement. 

Deb Andio: Sure, yeah, sure. I was a ophthalmolic technician and I was an apprentice optician. And so what I did was I seen and pretested patients all day long before surgeries, after surgeries getting them prepared for eye exams with their optometrist or ophthalmologist. We would see people after surgery, things like that.

I would be helping elderly in and out of the [00:29:00] chair, lifting kids up and you can’t, of course when your knees are bad, you can’t always bend down, pick them up. There were times as I’m helping somebody get in the chair, I’m wondering if I’m going to be injuring myself as well because of my knee and of had osteoarthritis in other areas.

But it was devastating to lose my career, medically it was not in my plan, but at the same time, it’s like, what am I gonna do now? I’m only 51, I have to have something to do. And I never knew that there was a way that, you could continue to work even part-time if you were on disability.

I just recently found that out three years ago. So I’m always learning and if someone is disabled and they once try to work, they can, go to Ticket to work through social Security. And there’s different programs. They can work 1, 2, 3 hours a [00:30:00] day from home a lot of times, which is grateful because sometimes when you’re in pain you can make it across the room to your computer. You can’t always, sometimes make it to the shower, getting ready, putting makeup on, getting to the car, driving a half hour to work, and then working all day or even half a day. So that’s one great thing about, working from home, which I do part-time and it is limited, but it gave me my purpose back.

That and the Arthritis Foundation and also, running a support group for osteonecrosis and raising awareness as well. You find a new purpose. So, so it was a wonderful experience.

Cheryl Crow: That’s thank you for sharing that. And I love talking about finding your purpose. I think that’s just such a universal theme, whether you have a chronic illness or not.

And I’d love to hear a little bit more, or I’d love for you to share a little more about the Arthritis Foundation live yes. Connect groups. I know they’ve it’s gone through iterations over the years and had different [00:31:00] names. Because I’ve had rheumatoid arthritis for 22 years, by the way. So, I’ve been part of some of the, these groups too.

But, can you let everyone know, I wanna also, partly through this podcast, raise awareness of all the great resources out there for people.

Deb Andio: Sure. The Live yes Connect group is part of the Arthritis Foundation and we have several groups. There are in many states and each state may have several different types of connect groups.

We also have groups by topic such as rheumatoid arthritis, newly diagnosed osteoarthritis. We have Hispanic groups. We have African American groups. So we have groups that not just target a condition there’s gout and, specific things versus state as well and connect groups are great because then you know you’re not alone.

And especially if you’re newly diagnosed. You just don’t know where to look and you don’t know where to find the information. You can Google all day long [00:32:00] and you can read 15 different things for the same topic. So you always wanna make sure you get good information from a legitimate source and the Arthritis Foundation is a great organization.

They work with children, adults. We have helplines. Our connect groups, it depends on, like for example, the two connect groups I deal with is one is for Central Florida and deals with the forms of arthritis, and then we have a national osteoarthritis, which me and Patrice, a co-facilitator of mine, we run the osteoarthritis connect group.

And so we meet once a month, sometimes twice a month. We’ll have speakers, we’ll have general meetings, just get togethers. My local group will meet in person or virtually. And it’s a great way to come together, meet people, share a commonality that we all have arthritis, [00:33:00] and even if you’re a caregiver, know that we have support for you as well.

Cheryl Crow: I love that and I’ll definitely be putting links in the notes and yeah, I’ve gone to some of the Seattle area ones, in person and I’ve spoken as an OT spoken about life hacks and other topics virtually. That’s what’s been great about virtual is that, you can speak to people without having to travel all over everywhere, but 

Deb Andio: Absolutely. 

Cheryl Crow: Yeah. 

Deb Andio: And we love you. 

Cheryl Crow: Oh, please. 

Deb Andio: Like we, we watch you all the time. There are so many people with affiliated with the Osteoarthritis and Arthritis Foundation, period. All the members, when we’re talking about hacks, you’re like, Hey, have you gone to Instagram?

And I’m like, yes, we have. We, so we really enjoy all the Instagram posts that you make, we find so many of them, not just informative, but they are so fun too. And some are so impactful. Like the most empowering one I ever saw was when you had the [00:34:00] needles all around. 

Cheryl Crow: Yeah. 

Deb Andio: That was just something, because I don’t, I have a different form of arthritis and when I saw that, it was like, wow, that was just so, so empowering and so impactful to me. Like it really hit home how rheumatoid arthritis could be. 

Cheryl Crow: Yeah. Yeah. Thank you. And, those in the picture you’re referring to, I will put a link in the show notes, and I will say, I wanna give my friend Jessica Keener credit. She’s a professional photographer who I hired to do what I called an invisible illness photo shoot. Which sounds like how can you, that’s impossible. It’s invisible. Yeah, but the idea is I actually got the idea, so it’s all like we’re all paying it forward because I got the idea, I saw a similar thing of a young woman, probably looked like she was in her mid twenties [00:35:00] laying on a couch.

I can remember it clear as day. Unfortunately I did not keep track of it, so I can’t find it exactly. Maybe AI can help me somehow, but she’s laying on a couch, she’s blonde and she looks quote unquote healthy, looks quote unquote normal, and then all on the ground in front of the couch are all her injections and medications.

I don’t even remember what condition it was from, but I remember thinking that immediately it’s pictures worth a thousand words, and so I show that to my friend Jessica, and I was like, that’s the one idea I have going into this photo shoot that’s like a really specific idea. And I had saved all my injections for a couple years and my medication bottles, ’cause I thought I’m gonna use these for an art project at some point. And so anyway, it’s not to ramble about mine, but the response to it has been really incredible. And it was very 

Deb Andio: powerful, very moving. 

Cheryl Crow: And I’ll say even people extremely close to me, like people who understand on many levels what I’ve gone through, even they said, it hit [00:36:00] me differently to see it like that. 

Deb Andio: Yeah. So, because working with people with all forms of arthritis, as a volunteer, with the foundation, it’s you. You talk to so many different people, but to grasp that was just such an empowering statement, and it was just so moving that people that have lived with rheumatoid arthritis and juvenile arthritis for years were just so moved by it.

And, it was just an amazing, it’s very, we are just so grateful that the power that that photo had really 

Cheryl Crow: Well, thank you for taking the time to, to look at it, and it really is, I mean, this is just a example of the overall arthritis community is truly so supportive.

And and I know there can be in like in any place, any pockets of the internet or any pockets of human society, there are gonna be [00:37:00] times when I don’t know if you’ve ever heard of this phrase, the chronic illness Olympics or the disease Olympics where everyone competes to see who has it worse and says, well, you and honestly, I actually have to say, we all have to be humble to say. I honestly think at some point before I became more informed, I think sometime in the early 2010s I said something like, Ugh, like people when they hear arthritis, I think it’s just osteoarthritis. If that’s like not that big of a deal, like compared to rheumatoid and I see now how that’s not a helpful and that’s a very uninformed.

That was an uninformed comment to make. But even like I, it only, it took me learning from other patients that, wait a minute. First of all, there are different things. Osteoarthritis can be just as debilitating as rheumatoid arthritis and so, and b, it’s just not helpful to compare like, who’s had it worse?

And I don’t know. Does that ever happen in some of your groups where you have to 

Deb Andio: It does. [00:38:00] It does. You have just know that everyone is different and there are times to where I feel like, I don’t know if I could go on, if I had some things that I have members that deal with on a daily basis.

Because they are just in so much pain and they’ve been through so much and then they sometimes think the same thing about me. And I’m thinking, well, so we all have that. I feel that when you’re diagnosed with something, you have more empathy for people in general, and I think that’s a good quality.

So, because there’s a lot of that should be going around today. But you know, I think that when we take time to appreciate what other people have, because you don’t know what it could take for someone to come to that support [00:39:00] group. It could take them every bit of energy they have, so they could come in and hear a speaker or share a moment.

That’s why I really am so happy to do it on virtual platforms as well as in person, because you could lose a lot of connection because arthritis and many chronic conditions are isolating and you know they’re already isolated enough. And then if they don’t have access to a support group online, they may not talk to somebody about their condition, who really understands for months.

And so we try to, at the Arthritis Foundation being a Connect Group facilitator always try to reach out to, and that’s why they also have the hell blind and different things as well. So if you need something, you can call them and they’ll connect you with the right people. 

Cheryl Crow: That’s super, super helpful.

I wanted to say, so I’ve, I think I’ve said this in a previous [00:40:00] episode, but I do think it’s important I wanna say that having perspective is good, but things aren’t worse. Like I think sometimes when people say, oh, I could never do what you’re doing, like they wanna recognize that. They, even though I’m suffering, other people might be suffering more.

And that can be something that can be helpful to remind yourself of the big picture. But it’s more, it’s not helpful when you say judge someone or say well, you are not, your pain isn’t as valid because it’s not as bad as mine. So I just wanna clarify that. But I know you know that.

But just for people listening. 

Deb Andio: No, totally understand. Yeah. And I think too, when we volunteer, no matter what part of our life, whether we have a chronic condition or we’re quote normal and don’t have any physical, conditions that we have to deal with, I think volunteering in our community is a great way to stay focused. And if you do have a chronic condition, it’s a great way to help [00:41:00] forget about your own pain because you’re trying to help someone else. And I think that’s, we need a lot more of compassionate people out there today. And I think that whether you’re helping in a support group or a soup kitchen or just, taking phone calls or answering calls for whatever. I think that, making use of your time, helping others definitely takes your focus off of your own condition or your own issues, whatever it could be. And it puts focus on others, which is I think what human beings are supposed to be for.

We’re spiritual beings on a human journey. 

Cheryl Crow: Ooh. I like that. That’s interesting. That’s such a beautiful note to start slowly wrapping up on. I do have the rapid fire questions, which okay, could take a long time. This could be a whole 60 minute episode on these questions, but what are just some of your [00:42:00] best words of wisdom for somebody who might be brand new, diagnosed with osteoarthritis and or osteonecrosis?

Deb Andio: Well, if you’re newly diagnosed, first thing is to do your research. Look up good support groups like the Arthritis Foundation. Talk to your doctor see if maybe your local hospitals have any type of support group, just so you could be connected to others. You could always reach out to me.

If you can’t find something, I will find something for you. 

Cheryl Crow: That’s beautiful. And do you have a favorite quote or inspirational saying for tough days? 

Deb Andio: Well, I have a lot, but Philippians always comes to mind. I can do all things through Christ who strengthens me. 

Cheryl Crow: That’s great. Thank you.

Thank you for sharing that. And what about totally different note on the micro level. Do you have a favorite arthritis gadget or tool in your toolbox? 

Deb Andio: I do. Actually I saw it on your show when you were [00:43:00] posting. It’s the bottle opener because you know when you have arthritis in your hands, like there are days, I mean, I wish the water bottle companies would really just not make them like their super glued on there because Yeah, there’s times to where I can’t turn a bottle to open up, water and or a jar, I used to bang it with the knife around the lip, or hit it. And then of course you have to worry about breaking glass. But you have had some really good tools on there. I also like the rocker knife ’cause when your hands are sore those are great tools as well.

Cheryl Crow: I just have to say as we’re recording this I’m so excited. This is nothing that I’m part of, but I’m excited to be a consumer that Selena Gomez, who lives with lupus and she’s referred to herself as having arthritis affecting her hands. She, so arthritis can occur with, along with [00:44:00] lupus and she has designed, I don’t know if you saw this on social media, if we’re on the same, follow the same people cause I’m not really into necessarily like a lot of beauty products and perfumes or anything. I don’t have perfume, but she’s putting out a signature perfume that was specifically designed with a team of like hand therapists, like occupational therapists and other people who could specialize in the packaging so that the perfume bottle is a long, like a circle that the part where you press down is also a wide circle, so you’re not having to squeeze with your thumb.

Deb Andio: Yeah. Very cool.

There’s a lot of great tools out there, such as, if you’re having a hard time like young girls or my age of putting on makeup. It’s hard to, put the mascara on. There’s a lot of great inventions out there that are just starting in different hacks that you can utilize and, to help with that, so, 

Cheryl Crow: yeah. Yeah. That’s awesome. And I’ll [00:45:00] put links to those items in the show notes as well. Do you have a favorite book or movie or show that you’ve been watching recently or reading? 

Deb Andio: Well, I read all the time. I don’t really have a favorite book because I love all books, so, I do more, life books versus like fiction. I’m not a big fiction person, but I love all books, so I can’t really have a favorite for that. But as far shows. It’s crazy, but I just watched Elf about a week ago and it’s was like 105 degrees here. So, but I just love it, you know what I mean?

When he pours the syrup on the spaghetti and I mean, I just love it. I just love elf, so I love laughter. So any kind of comedy I’m in for, so 

Cheryl Crow: I love that. That was not what I was expecting you to say. Makes me so happy ’cause I love that movie too. And I do I love listening to podcaster watching videos of like how something was made.

And so, I’ve seen the behind some of the, behind the scenes [00:46:00] of Elf and like Will Ferrell, initially they were, he was told like, no one’s gonna think this is interesting like that you’re playing this big, like baby kind of thing. And he’s trust me. And it turned out he, of course he has perfect intuition on what’s gonna work.

He’s pretty, yeah. Amazing. Okay, last one. This is the central question of this podcast that we answer through our conversations, but what does it mean to you to live a good life and thrive with your health conditions? 

Deb Andio: Well, for me, as long as I am able to, wake up every morning and get my walk in. I try to eat healthy. I do indulge on occasion. My guilty pleasure is a mocha frappe and I could probably drink them every day, but I don’t because I could feel it the next day. And so I just really feel that you have to do what’s best for you and it may [00:47:00] not always be what’s best for someone else, but I really believe the more you give to someone else the more, you’ll feel better for yourself as well. So 

Cheryl Crow: yeah, I mean, it sounds like a big part of thriving for you is being able to be part of a community and be a leader, and connect people. Be a guide for them and answer their questions too, which is such a beautiful thing. Like I sometimes say for myself too, I’m like a tour guide for people who are venturing into a new world. The New World. That, yeah, it’s like you’re a tour guide of someone. Someone’s they accidentally landed in the world of having osteoarthritis and osteonecrosis. It’s not like I planned a trip to Paris, it’s like your plane got rerouted and now you’re in, Timbuktu and you’re like, okay, here’s, I’m gonna guide you through this.

And that’s a beautiful thing. So, I mean, I’m biased ’cause that’s what I love too. But yeah. Just very last question. Thank you so much for all your time. Where can people find you online? 

Deb Andio: Well, I am [00:48:00] on Facebook. My name is Debra Andio. You could just look up, actually, if you Google my name, there’s a lot of things we’ll pull up, so.

I have a blog at jointpurpose.com. You could find me on Instagram. Chronically grateful me. Also I have one for just my everyday Debra Andio . And I’m really into social media. We also have a osteoarthritis osteonecrosis, support groups, things like that.

So I’m all over social media. 

Cheryl Crow: Yes. And she’s given me all her links, so they’re all gonna be in the show notes as well. So thank you so, so much. This I learned a lot and I’m so glad that your joints are, relatively speaking, pretty well right now and just crossing my fingers that there’s some new breakthroughs, in in maybe regrowing that tissue or for giving some relief. So thank you so much. 

Deb Andio: Yeah. And if anyone out there with [00:49:00] osteoarthritis or osteonecrosis, please check out the connect groups. A lot of, even if you have, whatever condition you may have, there’s always a connect group or a support group out there for you. Yeah.

Cheryl Crow: Oh, and I don’t know if we said, but they are free, so the Arthritis Foundation is a nonprofit. Well, and I say that to distinguish because I talk about my support group, which is really like a, it’s an educational kind of health coaching, self-management model where it is a paid program, although I offer like sliding scales, including like free thing admission, but it’s just, it’s like a different structure than a nonprofit where they get, grants and stuff like that. So I think I know a lot of people are in multiple groups, you don’t have to only do. But it is a no cost is a factor for a lot of people, so it’s great. I even asked, actually, I got a chance to see the CEO of the Arthritis Foundation in a bunch of stuff at the Pathways conference.

And I even asked or I said, ’cause I saw the five year vision and I said, I’m so happy to see that the support groups are still a big part of this ’cause I was worried when they were over the years that there’s been budget [00:50:00] issues, like there always is with the nonprofits, there’s always hard to find, fundraise enough.

Any nonprofit will tell you that it’s fundraising is a struggle. But he’s no, these are huge priorities. These are never gonna go away. So I was like, yay. 

Deb Andio: Yes. Yes, absolutely. It’s wonderful to see that. 

Cheryl Crow: Well, thank you so much and I hope everyone connects with you offline and we’ll talk to you later, byebye for now.

Deb Andio: Alright, have a great day. 

Cheryl Crow: You too.

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