Catching Up with Alison

Can you imagine the frustration of battling a chronic illness and not finding the right treatment? On our milestone 100th episode, we reconnect with the remarkable Alison, who was diagnosed with rheumatoid arthritis at the age of 28. Her journey from struggling with an unhelpful specialist to meeting the incredible Dr. Tony is nothing short of inspiring. Despite the bittersweet news of Tony's upcoming retirement, Allison's story is a testament to the impact a dedicated and compassionate doctor can have on a patient's life.

Hair loss can be a devastating side effect of chronic illness, and we tackle this sensitive topic with Allison. She opens up about how hair extensions and toppers have helped her regain confidence. We discuss the life-changing effects of Humira on her condition, and offer practical beauty tips for taming those pesky baby hairs. And because it's not all serious, we share our favorite coffee indulgences and quirky local coffee shop experiences, proving that sometimes, it's the small joys that make the biggest difference.

Our episode underscores the essential role of community in navigating chronic illness. We stress the power of connecting with others who truly understand your challenges, and how sharing stories and support can be more beneficial than any medical advice. The importance of living fully, finding joy in each moment, and persistently seeking the right medical support is highlighted. Whether it's through a supportive network or a beloved doctor like Tony, inspiration and resilience are within reach. Tune in to celebrate our 100th episode and be uplifted by stories of hope and determination.

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

Chapters

• 0:42 Rheumatoid Arthritis Diagnosis and Treatment
• 9:39 Personal Preferences and Comforts
• 21:50 Building a Supportive Chronic Illness Community
• 32:05 Power of Community and Inspiration

Transcript

Jen: 0:42

Hi my Spoonie sisters. It's your host, Gracefully, Jen and I have the pleasure of bringing back one of our guests from oh my gosh, can you believe it two years ago, so excited to catch up with her.

Alison: 0:54

Allison, how are you, hello? Hello, I am super excited to be back on here and super excited that you've reached 100 episodes Congrats to you.

Jen: 1:05

Thank you, it's absolutely crazy, crazy. I didn't even know what to expect with this when starting because you know I'm just little old me, but I think it's thanks to all of you that we've stayed on track and grown into what we are, and and I can't thank all of you enough and it's great that we've all stayed in in contact and we still get to connect and have fun.

Alison: 1:26

Yeah definitely you keep it fun. You're a ringleader of fun. I think I should try.

Jen: 1:32

I should try. I'm so thankful that all of you are up for all my crazy shenanigans. But you know, when I started this, I told everyone I want this to be a community. I want this to be a place of fun and hope and joy and not where we just come and complain. So I think we've done it.

Jen: 1:50

I think we have, definitely, definitely All right. So for all of the new listeners out there, let's kind of give a background about you and your diagnosis story. We don't have to dive into the whole thing, but tell as much as you want.

Alison: 2:05

Okay, we don't have to dive into the whole thing, but tell as much as you want, okay, um, yeah, so I was diagnosed officially back in 2018, um, after like a year or so of like kind of putting it off, like saying, oh, I just need to drink more water or there's nothing wrong with me, you know, type of thing. Um, but I was officially diagnosed with rheumatoid arthritis, um, and at the age of 28. It was an interesting discovery. I had never really heard of it and I just kind of felt alone and didn't understand what's going on. And I got paired with a specialist who she had a practice and she had a couple PAs under her.

Alison: 2:42

I met with one PA and then he left. And then I met with one PA and then he left, and then I met with another one and then he left. And then I met with the primary doctor at this office and they put me on a medication and it was fine and I didn't know what to expect. So I did a little bit better, but I was still in immense amounts of pain and all this horrible stuff, like I wasn't living. I was just barely surviving. Horrible stuff, like I wasn't living. I was just barely surviving. I felt like, after a little bit of craziness at her office, she actually switched to a. I don't know exactly what they call it, but you had to pay to be a patient of hers, like I had to pay a yearly fee.

Alison: 3:19

Yes, it was like an expensive yearly fee to see her as a doctor and I was just like I still feel horrible. I don't have the disposable income at the time to pay this like thousands of dollars a year to see her, on top of co-pays and everything. So I kind of did a little research and found another office downstate. I live in Michigan, so I live up in Northern Michigan, like we get our handy dandy map out, we're up here at the tip and then downstate. I got paired with a doctor and there's always a really funny story about my doctor and how I met him. So before I ever met him or was introduced to him, even knew his name, I just knew I was going to see a new doctor at this Great Lakes Center of Rheumatology.

Alison: 4:04

Three days before it was Labor Day or Memorial Day weekend and I was visiting my friend at a local shop here in town where I live. And these people come in and they're like oh, we're boating from Mackinac or downstate, we're on our boat and our boat broke down so they stopped in the harbor and they came to the shop and they're like oh, we're from East Lansing, we didn't plan to stop here and I came to the shop and they're like oh, we're from East Lansing, you know, we didn't plan to stop here. And I talked to the older gentleman for a little bit and I said, oh, you should stop here, you should go see this place. There's not a lot open on Sunday where I live and he's like oh, thanks for the advice. And then I go down to my doctor's appointment three days later and this gentleman was my doctor and I had no clue and we just have decided ever since then. It was fate. We were supposed to meet. He was supposed to be my doctor. He has been such a blessing in my life. I honestly feel like he gave me my life back, because before I could barely walk, I could barely dress myself, and I just thought that's how I was going to live my life, because I didn't know I could be better.

Alison: 5:04

Tony is his name, he is my savior, I think, and he just told me my last appointment. He is retiring. So I'm so sad because he's ready to retire, he needs to retire, he needs to, like, enjoy his life with his family and stuff like that. But I'm just so sad. But yeah, and then the other thing, like when I met with Tony for the first time. I look he.

Alison: 5:26

One thing has always stuck out with me and when I met with him he looked at me and he's just looks with this really sad look in his eyes like kid, they left you to suffer. You could be doing so much better. You don't have to live like this person. Let you suffer for three years before I got to meet him. I don't know. That just has always stuck with me and ever since then he has fought for me. He has called insurance companies because my meds got denied. He has called pharmacies. He has done everything possible to ensure that I have the best quality of life and I just I know not every story is like that, not every doctor is like that. I know not finding the right medication right away is like that and I just got really lucky. I feel like and I know I'm blessed in that aspect, but I'm still really sad he's retiring, okay.

Jen: 6:17

So, first of all, I'm so glad you brought up that story, because I was prepared to ask you, because it is such a great story. Oh my gosh, so he's retiring, yeah, so does he have someone in mind that he's going to try to hook you up with, or how's this going to work?

Alison: 6:33

So he is technically a PA under the doctor at this practice and I have met with the doctor overseas and he knows my course of treatment and he's actually the one that worked with Tony to make sure I had what I needed. Since I saw him, I added two more medications to what I already take and this doctor is like this is what we're going to keep doing. Tony, I see him one more time in December before he officially retires and then he's matching me up with another PA in the office there's four of them there and he's like this is going to be your best fit. You guys will get along really well.

Alison: 7:08

She's got the same type of energy that you have. She knows she's your lifestyle. I've talked to her about her and this next time we're going to meet together and go over things. He's been very clear about communication and ensuring I feel comfortable and he told me he goes. Maybe, maybe he goes. I think you guys will be a great fit, but maybe you won't be, and then we'll get you back with someone else or we'll get you with the primary doctor at the office. He's like I'm going to make sure you're taken care of kids.

Jen: 7:35

That is wonderful because I think you know so many people fall through the cracks and, to be honest, I think one of the reasons I was so glad that you and I connected, which I still have no idea how we found each other, I know, but you know we we automatically had so much in common, you know, going to a doctor that wasn't really getting you anywhere, and then we both found that that magical one. Although my story was not as cute as yours, I didn't meet mine beforehand somewhere else, and then, of course, mine retired also, but I still see the PA and she's phenomenal. That's awesome Good.

Alison: 8:09

I'm glad that you have that too.

Jen: 8:11

And I think you know also, like you, now I have to drive further because I don't live across town from her anymore, I live on the opposite side of the state. But I was like you know what I'm going to be near Vancouver and Portland, but I still don't want to have to start over again. So I drive the four hours every summer which I'm getting ready to go here in like a week. So I'm super excited to see her. Before I forget to ask you what kind of changes have happened in your meds since we talked last about this two years ago?

Alison: 8:41

So since then I previously, before I even met with my new doctor I was on Plaquenil. The crazy thing they only wanted me to take Plaquenil because I was so young and they thought I was going to want to have children. And I kept telling them I do not want to have children. I know this about myself. And they said, well, you're still so young and like that sticks out to me. I'm telling you I'm not going to do that. Why are you not letting me do? I don't know.

Alison: 9:07

But and then I got put on methotrexate and I have been taking that. And then about a little less than a year, about a year ago, I got put on Humira shots and that was very scary for me. I anytime adding a new medication I feel super scary for anyone, cause you never know the side effects. And like I scared myself and I went online and it looks at all the bad side effects and luckily I have really never had any side effects to any medication, with the exception of when I got put on methotrexate.

Alison: 9:39

My hair thinned incredibly and I have some minor bald spots in the back. I have extensions in because I'm very self-conscious about that and they kind of cover it really well, but that that was my main thing and I was a little self-conscious about that. But I would much rather live with the ability to do things like I can now and maybe not have great hair, than be in constant pain and bedridden like I was for a bit there. So the Humira has helped really well. I have a really bad ulnar drift in my right hand and it has kind of stopped not stopped, but like it was progressively getting worse. The pain was excruciating every single day, no matter what. Like I was taken like four Advil every morning for the evening, like it was so bad Like and being on the Humira has really helped that and like honestly have a lot of pain-free days now. So I just think the good combination of the three really helps me a lot.

Jen: 10:41

That's super exciting and I remember you know you and I have gone back and forth talking about about some of this different stuff, and when my hair started falling out, you were one of the people I talked to, and so my question for you is do you, do you have a lot of like fill in area coming in where you had bald spots?

Alison: 10:59

A lot of it has kind of kind of the grown. It looks like those fine baby hair type things over it. It's not like it's not long by any means. I don't have like huge bald spots. It's a lot of really thin and you can just kind of see the scalp more back there. But it's kind of gotten better. I don't expect it to ever be how it? Was, and I'm okay with that.

Jen: 11:29

And, to be honest, I'm so jealous that you can do extensions. And as soon as this happened to me, I reached out to a local hairdresser and she dove in. She dove into my scalp and was looking everywhere and right away I found out that it was not an option for me. Because of where my hair loss is and how severe some of the spots got. It's just not an option. So I have a hair topper that has worked wonderfully, but sometimes it doesn't want to lay down properly and so you can tell that there's a hair piece in or something or it's all else fills or a hat. You never know.

Jen: 12:06

But I have Well, I don't know how well you can see, For those that can see and not just hear. They're about this long now and so I was kind of curious what yours are like and my hair does not want to lay down because it's all trying to stick up and it's. Yeah, it's been fun, but I've been using hair wax, so I don't know if you've ever tried that for your baby hairs. I've been using hair wax, so I don't know if you ever tried that for your baby hairs, but I have it in a stick and you just kind of swipe it on a little bit and it helps lay those down. Obviously, I did not do that today my hair is a disaster, but I got it on Amazon. I do recommend that if you need to try to lay some of those down give it a shot.

Alison: 12:46

I'll have to have you send me that link, because I definitely have some back here that kind of like poke up and I'm just like. I have nicknames for my co-workers. Bless their hearts. They're like you need to check your hair. They like waltz hanging out that's what I call them call it.

Jen: 12:59

I love that I should give my.

Jen: 13:01

I should give mine some nicknames, yeah try and keep it fun when I can my hairdresser said that I have a cowlick back here and because it's so high up, that's why he's trying to do it Interesting. It is what it is Exactly. So let's see here. Let's dive into some of my suggested questions for you. I'm going to actually skip to the bottom because I think this would be fun. So just for fun, rapid fire questions. I know the answer to some of these, but we're going to have some fun anyway. So tea or coffee rapid fire questions.

Alison: 13:34

I know the answer to some of these, but we're going to have some fun anyway. So your coffee, I am a coffee girl. Like I am ice coffee girl. My community knows I'm the ice coffee girl, like winter, if they, if I haven't had an ice coffee in the day, they're like are you feeling okay? So that is me. I'm addicted and I know Jen and I have bonded over this. We used to send pictures back and forth like. I got a coffee, you get a coffee, it's cute.

Jen: 13:57

Yep, we haven't done that in a while. But yeah, nails and coffee so tell me what is your favorite kind of coffee?

Alison: 14:05

so we have a local coffee shop here and they have what's called northern lights and it's toasted marshmallow and coconut and I put coconut milk in it. I try to avoid dairy, and so I love that. I get that every single day. Love my coffee shop. I walk in there like the usual and I'm like yup and they have it made and ready to go. I come in about the same time every day so they take good care of me there. I love it. I love it. I'm going to have to have you send me that concoction because I need to give it a love it.

Jen: 14:29

I'm gonna have to have you send me that that concoction because I need to give it a try. I am a caramel macchiato kind of girl, or if I do a latte I like to do and of course iced, but if I do a latte it's usually cinnamon and caramel oh, I bet you that would be good. I'll have to try that. It is really good, but something about a macchiato I need to understand or learn how it is people make it, because I love, like the layering beautiful effect that it has.

Jen: 14:56

I can't seem to do it at home, but maybe I have that much time into it, so okay, next one morning person, or are you a night owl?

Alison: 15:05

I'm a night owl. I am up till like one or two o'clock in the morning every single night. And then I struggled to go. I want to be a morning person, so bad Like I tried and I just I'm not the best version of myself in the morning, so I just accepted it and I know I'm a night person.

Jen: 15:21

Yeah, Same same. And do you look at people like Danny, you know, make it count for Danny. And we're like, oh my gosh, she's up at like four already hiking a mountain.

Alison: 15:30

I want your energy in the morning, like I feel great in the evening. I just. In the morning I'm just like my bed is so cozy and toasty. I love my bed and I don't want to get out of it. And especially in like Michigan where it gets so cold in the wintertime, I'm just like I dread getting out of bed in the morning, yeah Well, and I bet nights are, you know, catch up on homework or movies or all the things.

Jen: 15:52

So I can imagine your nights are kind of cozy and you want to just enjoy it. And then in the morning it's like do I have to?

Alison: 16:00

work is making me.

Jen: 16:02

All right, so reading a book or watching a movie.

Alison: 16:06

This is another one of the things. I want to be a book reader so bad and I used to be like I used to read all the time and then I started going back to school and I was like I don't want to look at any type of book. I look at enough textbooks during the day, like I absolutely hate reading. So I'm definitely a movie person, but I am a. I have five movies that I watch on repeat over and over again and that's pretty much it I'm. Which ones are they? Selena love, selena, um, the town suicide squad, um, let's see, those are the three main ones. Like I wrote to Aaron Brockovich, that is another one I watch over and over again. I don't know why. There's no rhyme or reason to that that group of movies, but they're just like comfort movies. I put them on and they make me like feel better. I don't know when I'll have them as background noise while I'm doing homework and I don't know. I just feel those are my comfort.

Jen: 16:59

You know I think a lot of us have that we have a comfort TV show or a comfort movie, and I think for me a comfort movie would be the Holiday with Cameron Diaz.

Alison: 17:08

Oh, that's a good one.

Jen: 17:09

Always gotta love her and it's just I don't know. I like how it ends and everybody's happy. And then you know, friends is always a good TV show to have in the background. It is. I love Friends Now cooking at home or dining out.

Alison: 17:23

I can't cook, so I'm a dine out type of person. Can make really good toast and spaghetti and that's about it, so'm a I'm a dine out person, but I love a good home-cooked meal though, so if someone wants to make me a home-cooked meal, I'm gonna do it or I'm gonna enjoy it but I'm a dine out kind of thing, so does your husband like to cook?

Alison: 17:43

He is a phenomenal cook, so I'm super lucky on that. I'm like I want this and he'll be. He'll whip it right up for me, so I'm pretty blessed in that area. He doesn't always love that he's the only one that cooks, but he accepts me for what I am there you go, there you go.

Jen: 17:58

I don't think my husband would let me cook, even if I begged. He loves to cook, he enjoys it, he's a picky eater and he loves like grilling and smoking things, and so yeah, I, I just I'm kicked out of the kitchen on it. It's not a bad thing, right? Not a bad thing. I don't complain too terribly. Let's see here a beach vacation or a mountain retreat, I guess between the two beach.

Alison: 18:24

I'm the type of person like I want to go someplace and I want to learn the history of the area, like explore the towns, like I'm a big history nerd. I would love to just lay on a beach, but I don't want to do that for multiple days in a row Like I want to do it like for one day, I don't know. I just I'm a go, go go person. So like sitting still for long periods of time is nice, but it's not all I want to do on vacation.

Jen: 18:46

It's like you need a mixture of the two. Is there a place that you have not been yet that you're just dying to go?

Alison: 18:58

Boston just because of all the history there and the vibes and everything like that would be. Italy is another one. I really, really, so maybe we can make those two work in the next couple of years. That'd be a good goal.

Jen: 19:06

Now where's your favorite place? You've been on vacation.

Alison: 19:09

Switzerland. I went to Switzerland. I went on a European trip in high school. We were gone for 14 days and we visited, like France and Switzerland and Prague and Austria, but Switzerland was so clean. You just like felt like you were breathing the cleanest air possible, drinking the cleanest water. It was beautiful, the people were so friendly and I don't know. It was beautiful, the people were so friendly and I don't know. It was just such a amazing place to be. I I fell in love and I'm trying to hope that we can go back next year. So that's a goal?

Jen: 19:42

oh, that would be amazing. And was it cold there? So we went during.

Alison: 19:46

July, so it was colder, like I wore jeans and a t-shirt, but it wasn't like anything, freezing a couple do more shorts, I don't know. It was just like I would say, like a colder spring day. It was nice, though, because everything else was boiling hot. When we were in France, we were sweating, so we're like we'll take the colds because we were like higher up in the mountains. So it was, it was nice.

Jen: 20:08

Oh, I bet you got such stunning photos.

Alison: 20:10

Oh, that'd be so much fun well, I went when I was in high school, which was back in 2007, so camera quality was not as great as it is now. So my photos like were great back then, but they don't look so good now.

Jen: 20:24

That's why I need to go back take better photos absolutely well, I will trade you in heartbeat because I'm going to age myself right here, but I am older than you and so let's see here. I went on a choir trip to. We did Seattle, portland and then went up to Canada, and that was 1997.

Alison: 20:44

Oh yeah, so that was high school for me A little bit ago.

Jen: 20:47

Just a little bit older than you and I'll tell you, I look back on those photos and I'm like, well, first of all we were weird and the things that we did were strange, but the photos, the photos are awful and I don't know. I look back and I'm like we thought that was cool to wear, we liked. I don't know, do you ever feel that?

Alison: 21:07

way. Well, I am in this weird headspace where, like, everything that I wore when I was in high school is coming back right now and I'm just like I hated it then. Why are we bringing it back now? Oh, absolutely, I'm just like it feels like a weird twilight zone. I'm like I don't want to wear that again absolutely.

Jen: 22:32

I went to a store one day and I saw velvet shirts hanging there and I was like, are you freaking, kidding me? Are we back in 1994? Because I didn't like it? Day and I saw velvet shirts hanging there and I was like are you freaking, kidding me? Are we back in 1994? Because I didn't like it then and I don't like it now. Okay, so we could easily talk all these other fun things, but I'm going to take us back and let's see Do you have any resources or support that you would recommend to somebody kind of new in their journey?

Alison: 22:55

So it's actually really interesting. I get DMs two or three times a month from random people and asking questions or just trying to get advice, and I share with them things that I know and I let them know. Everyone's different. What works for me is definitely not going to work for you, but I actually refer people to your community because not only do you provide these funds is definitely not going to work for you, but I actually refer people to your community because not only do you like provide these fun graphics and activities and reels and everything, but like you share helpful information and I just think, like you have such a valuable resource, I like I view you as a hub, like you're the hub, or you go and then you disperse the resources out there and people can kind of go and find.

Alison: 23:40

Like I've had a couple people being like I don't have rheumatoid arthritis, but I got connected with someone who has lupus on there and they were able to help me with other things, or you know it just like is a giant community and we connect and like that's probably my biggest resource is directing people to other people. Like you can read as much as you want online and you can talk to your doctors but like, unless someone is kind of experiencing the same things or can give you some like guidance on what maybe help them, without trying to sell you something or push something down your throat, I feel like that's the best helpful tool. So you're my resource that I send to people or share with people and, of course, like I have people in my community who also have RA, I've directed them to my doctor's office and I've had quite a few people tell me they've gotten in and they've gotten much better quality care there.

Jen: 24:31

So you know, just connecting people when you can with different things Well, and I think you're a little bit like me in this aspect. I think you know when we were going through the beginning stages. I mean, a website is helpful, right, and finding out all the doctor-y things forgive me for my wording here but the doctor-y things that's fine, but sometimes you just want to talk to somebody that gets it and has been there, and so I think that was part of my goal. Like you know, meeting Chelsea from my immune system hates me was amazing and she knew people in all kinds of different illnesses and and situations, right. And then when she said she was going to close down the podcast, I was like no, no, we need something like this. And this was like, okay, I guess I'll do it, but I'm going to take it a little step further and we're going to make it like this community, and I like the way you're calling it a hub, because that really was the goal, and for a few reasons, one of them being sometimes people collect illnesses we don't want to.

Jen: 25:33

But you wake up one day and you start to notice some new side effects and you're talking to your doctor and you're trying to sort out what's going on. Well, if it's something that's not rheumatoid arthritis. Your current community of just rheumatoid arthritis is not going to do it and they might not know. And so to have this area of where we're talking to all these different people, I love that, and so I talked to a lot of people with lupus. I have not a lot of knowledge on it. I know it's similar in some aspects to RA. I don't have it but I like knowing and learning more from them so I can hopefully share their information or share them to other people, if that makes sense.

Alison: 26:13

It makes 100% sense and I think that you do a phenomenal job at that Like well, I know you have rheumatoid arthritis and the other things you do a really good job of highlighting, outside of that, autoimmune diseases and other people's journeys. That, like I kind of said it just like kind of brings the community of autoimmune diseases and chronic issues together. So like like my doctor had talked to me about sojourn syndrome I don't know if I'm saying that correctly Like I'm on the cusp of that and like I kind of reached out and looked for some people that have that within our community and started following them just to kind of like get an idea of like is this something I need to pay attention to right now? Or, you know, just kind of in the future, if I have questions I can reach out to these people and I have that connection already established. So you know it's a great little community.

Jen: 27:09

I agree with you, and there's so many amazing people and I love the fact that most people in our community. It's a place to go where you're not only getting information and support, but it's not full of just negativity, because you can easily join a support group or go to a community of sorts and next thing you know, it's a bunch of people whining and crying about how their life is over. And we still have so much to offer and we still have a beautiful life laid out ahead of us. It's all about how we choose to live it 100%.

Alison: 27:44

That positive mindset can do wonders for you, and it's not always easy to stay positive. But, like, if you just try and like at least for me, if I try and wake up and think of, like what I get to be grateful for today, instead of focusing on like wow, I can't open my hands today, or you know, like that sucks, but I can still walk, so I still have. Or you know, like that sucks, but I can still walk, so I still have, that you know like those positive things. Like you, you find, I think, like a lot of people within um that have these chronic conditions, they do a really good job of looking at the bright side of things and seeing all that they have and all that they're able to do and kind of realizing how often you can take things for granted, like being able to walk without a limp, or you know things like that. So I think that's a really positive aspect of the community too.

Jen: 28:33

So how do you bring yourself back and continue to keep that positive outlook for yourself on a day-to-day basis?

Alison: 28:40

Just kind of like I just said, just kind of focusing on what I get, to be grateful for what I get to do, In the very early on stages I threw a giant pity party for myself and I just was like my life is over, I'm going to be disabled, I'm going to have to quit my dream job, I'm going to have to not do anything. I can't live anymore. I can't run 5Ks, I can't work out. I can't live anymore. I can't run 5Ks, I can't work out, I can't travel. I just started focusing on all the things I'm not going to be able to do and I spiraled. And I spiraled so hard that I got to a really dark place and it was scary there for a little bit with myself and the mental aspect of it. And then I finally started realizing you're self-destructing here. You cannot do this to yourself. You are not going to let this.

Alison: 29:30

My rheumatoid arthritis, while it controls parts of my life, it cannot control my entire life and I need to like fight back and I just started doing one thing a day to like at first, to be like. This is what I get to do. I get to wake up and I get to go to my job while I'm in immense pain, but I still get to go and do that while I still can. And then it kind of just snowballed into I get to go out to lunch with my friends today, I get to do these things, and I just kind of looked at the big picture of I need to live a big life and that's what I want to do. I want to do all the things that I can while I still can and just be grateful and maybe I can't do them today, but maybe I can tomorrow, and just kind of just not brainwashing yourself, but like kind of telling yourself you are grateful, you have lots of things to be grateful for and just keep keep focusing on that and don't let the negative.

Alison: 30:22

The negative still creeps in every now and then I still cry and just kind of you know someone will say like, oh, my God, your hands, what's wrong with them? And then I'll just like break down and I'll be like okay, I am not normal, but it's okay, We'll keep going. And then you know, but it's just trying to focus on the good as opposed to the bad, because very much believe like what you focus on is what you become or what your mentality is. So if I'm going to focus on the bad. Everything's going to be bad. So if I can focus on the good, maybe the good will spread.

Jen: 30:57

I don't know, hands down. I don't think I could agree with you anymore, and I also want to tell people it's okay if you, in the beginning, mourn the life that you had. It's okay if you have some really hard days and if you're in bed and crying about this new life that you're facing, because, yes, it's hard and, yes, it's scary, but don't live there. Yes, because if you live there, you're missing out on the rest of your life. You're missing out on incredible people, incredible experiences, and what fun is that Exactly?

Alison: 31:35

Cause, like in the beginning this was prior to meeting you I just was kind of like this is what it is and I don't even want to think about it. I don't want to like talk about it, I don't want to do anything, I want to ignore it. I would have never met you, I would have never met the community I have and the support and the friends I've made along the way. So you just said you can't live there because if you live there you're going to die there. And I think you just got to get out of that and it's hard but it's necessary. It's hard but it's necessary.

Jen: 32:04

Absolutely. And if that means find a support group, find a support group. If it means find a coach of some sort, find one. Do the mindset work, do the work in general. I mean, I love the fact that if I'm having a hard day, I can log in and and there I see Alison drinking her iced coffee and getting her workout in and doing all the things. I see the squat challenges going on and I'm like, okay, today's a rough day, but I don't have to live here and I'm going to wake up tomorrow. I'm going to try again.

Jen: 32:33

I'm going to start all over again and, if I need to, I'm going to reach out to Allison or somewhere else, someone else, and I'm going to have you guys. Give me a little bit of a pep talk. Maybe I'll send you a picture, maybe I'll go get my nails done, send you a picture of my nails and just be like okay, I need a pep talk, give me something.

Alison: 32:48

Yes, so find your people. That's the best part about a community is you know that, like, you can always reach out to someone and they're not going to be like, oh, this person's bothering me. They're going to be like this person needs a little pep talk or needs to just vent it out or just wants to chat so they can get their mind right.

Jen: 33:05

You know, that's the great thing about this community, you know, and such a small thing can change a person's life. And so, you know, post the thing, post the quote, post the affirmation, post the workout, because I don't know, I think, if we are also getting outside of ourselves and helping, support and motivate others, that turns around and helps us too, because now you have a why, now you have a purpose, yes, and that purpose is going to wake you up every morning and keep you going.

Alison: 33:34

A hundred percent and you never know who's watching. I have had dozens of people in my community that I never know, like my own town, like I live in a small town reach out and say things like because of you, I went and talked to my doctor about the things that are going on, or because of you I have the motivation to do this, Like you never know who's truly watching you and being inspired by you or needed your kindness or your motivation, or just I post quotes all the time and people like I needed to hear this today and I'm not posting them for reactions, sometimes for myself or because I think people forget that they need to appreciate and respect and cheer themselves on. You know different things, so you just never know who's watching and you're helping people. You have no idea you're helping and some people will never reach out and tell you that. But just keep doing what you're doing. Keep sharing what you're sharing Definitely.

Jen: 34:31

Definitely Okay. So my last big question for you actually it's not even really that big, but do you have a favorite quote?

Alison: 34:40

Okay, so I have two, and the one prior to RA has always been be the change you wish to see in the world. I love that quote for many different reasons. Like I feel like if you can make a difference in your community, make a difference in your community. If you can give back, you know, give back. If you don't see something you like happening, make that change, you can do it. And then the second one is live a big life. I so often people get scared to celebrate themselves and share their happiness or their struggles or anything like that, because they're afraid of what people, how people react. You know, the internet can be a wonderful and horrible place at the same time. And I just think, if you can celebrate your life and live a big life, do all the things. Who cares? If people don't like a certain thing, you know, just share it anyways. It's your life, post it for yourself, share it for yourself, live a big life and, you know, just celebrate as many things as you can.

Jen: 35:36

I'm writing this down right now because I don't want to forget, although I'm trying to look at you and type at the same time. So it came out saying live a bug life. Although I'm trying to look at you and type at the same time, so it came out saying live a bug life I love it, I think that needs to be your new tagline Live a big life.

Alison: 35:51

Yeah, I use that hashtag all the time on a bunch of my stuff and I just think that life is so short and so precious, you should just go for it. If you can Just do the things, eat the food, talk to the people, the shows you know, travel wherever, just live, live big life, yeah, and if tomorrow is a hard one, get up tomorrow, dust yourself off, start all over again and live a big life.

Jen: 36:16

Yes, I love it. I love it. All right. Is there anything that we did not talk about or go over that you think is important we should add? No, we kind of hit everything.

Alison: 36:25

I just my big thing that I always like to share, because my story is if you are not happy with the doctor you're seeing, do not be afraid to get a second, third, fourth, fifth, however long it takes. There are doctors and physicians and PAs out there that want you to feel better and live your best life, and I hope that everyone has a Tony someday in their life or someone who cares about them and fights for them and advocates them like my doctor does. That is what I want for everyone. But don't be afraid, You're not stuck with that doctor because you were referred to them.

Jen: 37:02

It's not the end, all be all.

Alison: 37:04

Keep going until you can find someone who wants you to live your best life.

Jen: 37:09

Definitely Okay. Well, keep us updated. I'm anxious to find out how this goes as you switch over to someone new and, oh gosh, I can only imagine that the day that you say goodbye is going to be a hard one.

Alison: 37:21

I almost cried when he told me he was retiring. I was just like I'm like Tony, he's like. I know, kid, I know he's like. But my wife retired three years ago and she wants me to retire and I'm like, okay, she deserves that, and they probably have a family and want to do all the big things and travel.

Jen: 37:37

And yeah, yeah, unfortunately, we, we have to get it. Yeah, darn it. Well gosh. I hope you have a really, really good vacation. Thank you. Well, my spoonie sisters, until next time, don't forget your spoon, but make sure you live a big life while doing it All right. Bye everyone, bye.