Unraveling the Threads of Invisible Illnesses with Olivia

As your host, Jen, I've witnessed firsthand the transformative power of getting the right diagnosis - it's a journey that can be as tumultuous as it is enlightening. That's why I invited Olivia Dennis to the show, where she bravely recounts her quest through the tangled healthcare system, grappling with the often invisible web of IBS, anxiety, OCD, and autism. Olivia's candid narrative strikes a chord, revealing the emotional toll of being misunderstood and the subsequent liberation of understanding her true self after an autism diagnosis at 19. Her resilience is a beacon for anyone feeling lost in the labyrinth of healthcare.

Our exploration of chronic illness doesn't stop there. Olivia courageously steps into the spotlight, shedding light on her life with a spectrum of genetic and chronic health conditions, including POTS, CMT, fibromyalgia, and gastroparesis. Her story is a testament to the relentless pursuit of balance between treatments and lifestyle changes, which includes a daily regimen of managing symptoms that could easily overwhelm the strongest among us. Our guest's insights into the genetic intricacies of CMT and the pervasive influence of fibromyalgia offer a poignant reminder of the complex battles fought behind the smiles of those with invisible illnesses.

Wrapping up with a touch of warmth and compassion, Olivia opened up about the joy she found in assembling spoonie boxes for fellow chronically ill young adults, a project that has seen 58 care packages spread light across the country. These acts of kindness, along with the steadfast support of therapy, family, and the unwavering love of pets, have become a cornerstone of her personal journey. Through stories of validation, laughter, and faith, this episode celebrates the indomitable spirit that unites us in the face of life's greatest health challenges. Join us for an episode filled with raw emotion, unwavering courage, and the healing power of community.

Instagram accounts: @oliviardennis
@yourpainhasapurpose

Info & Funding for Spoonie Boxes: https://www.gofundme.com/f/fund-care-boxes-for-chronically-ill-teens

Mental health resources: https://linktr.ee/mental.health.support

Olivia’s favorite ice packs: https://www.releafpack.com

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 Olivia's Health Diagnosis Journey
• 18:25 Living With Multiple Chronic Illnesses
• 23:32 Managing Chronic Health Conditions
• 30:12 Creating Spoonie Boxes for Chronic Illness

Transcript

Jen: 0:42

Hi, my Spoonie sisters, it's your Gr acefully Jen, . I am so thrilled I'm sitting here with Olivia Dennis and I cannot wait to tell you all about the many things that this girl is up to. But who better to talk about what she does than Olivia herself? So, hi, olivia, how are you? Hi, I'm doing good. Ah, okay, I want to jump in with so many things, but I want you to start walking us through your diagnosis journey, where it started and how it began.

Olivia: 1:15

Yeah, so it started around age nine when problems like stomach pain daily and headaches started like stomach pain daily and headaches started, and so of course we went to doctors and did some testings, like endoscopies, and that didn't show anything. So within time I was just diagnosed with iterable bowel syndrome, ibs, and so that just continued. I was also dealing with undiagnosed anxiety, ocd and autism around the same time, and I don't think younger me had no idea that this was just start of a rough and crazy journey.

Jen: 2:00

So that was how things started and you know, I think you brought up a really valid point. I think a lot of times when this starts, we don't realize what's going to happen and we don't know that there's even a bigger journey ahead. So this started for you around the age of nine. I'm assuming you had a good support system with your family. Between them and the doctors, were they able to describe and explain what was going on with you to a way that little you could understand?

Olivia: 2:34

Um, not really, to be honest. I I don't remember as much back then, but I just remember being so scared and alone and not understanding what was going on.

Jen: 2:56

So I feel like they didn't do much for me or didn't look further into my health to figure things out. Well, and you know, honestly, I think a lot of times when it's a child, they think that sometimes a child is overreacting or trying to get attention. You know all the slew of things. Right, the doctors run through and explain to the parents. And so they are taking you seriously.

Olivia: 3:18

The way that you should be. Yeah and to be honest, yeah, go ahead. I even remember like, besides the stomach issues, like I would have a lot of growing pains, like in my legs, and just a lot of things that point to the diagnoses I have now. So it's just kind of strange looking back and seeing how things kind of matched up but no one really cared to do more about it.

Jen: 3:41

Absolutely and, to be honest, it doesn't surprise me dealing with anxiety with all of that. I think if you look back, a lot of us will say that same thing. Anxiety is extremely prevalent in our lives because when you're dealing with a chronic pain, it's scary, it's like it awakens something within your body. Yeah for sure. Did you talk to your parents about the feelings that you had and the anxiety?

Olivia: 4:10

um, I didn't. I didn't really know what it was, I didn't realize it was anxiety, and so within some years I started dealing with OCD as well and I figured out, like like in my early teens, that like something was not right to have this much anxiety and so I wanted to speak up and get help. But I was honestly too afraid to and so I kept it a secret for a while. Too afraid to, and so I kept it a secret for a while, and that was really hard to deal with on my own. But it wasn't until, like, my depression got worse that I finally got help, and for my anxiety and OCD and things like that. So it felt like it had to get to the worst point to then get help which is frustrating.

Jen: 5:05

That is frustrating. What kind of symptoms were you having?

Olivia: 5:08

Yeah, I was having high heart rate, sweating dizziness and then a lot of stuff in my mind just overthinking and worrying constantly and just having these obsessive fears that were going on, so my mind would just not be calm.

Jen: 5:35

I think that's a really good way of explaining it. It's almost like we can't even turn off our brains. Yeah for sure. So once you talked to your family about it, what did they think?

Olivia: 5:46

I remember them not taking it seriously, like they are really good parents, but I don't think they were aware of mental health as much and how bad I was struggling on the inside. So it was kind of dismissed a little. But, um, after some time they were, um, willing to get me help and um, I think over the years it's definitely taken time for them to understand and accept it and um, which is okay.

Jen: 6:21

And um, yeah, that's just been a process to go through Absolutely and probably having you talk about it and be open with them about what you're feeling inside. That probably helped them a lot, too, to better understand you. Yeah, okay. So you're having all these stomach problems. Now you're having anxiety, ocd. You even said you later were diagnosed with some autism. Is that correct? Yes, what were the symptoms of that? Yeah, so autism.

Olivia: 6:54

You're born with it, so technically I've had it my whole life and I wasn't diagnosed till I was 19, almost 20. So late diagnosed and just when I learned about it I would felt so like connected to what autism was and how you feel with that and like it's like you see the world differently, like through a different lens, and you comprehend differently and it's it's um different than normal. And so I had problems with um like emotional regulation, sensory issues stemming Like I, I rock back and forth a lot um as a way to stem and stuff, and then um other things like um, oh, struggling with like social interactions and communications. So it was really hard to make friends and to do small talk. Like giving eye to contact is not easy for me, which is frustrating. But I also had a hard time regulating emotions and just a lot of social anxiety and repetitive behaviors and routines. I mean, there's so much to autism.

Jen: 8:27

Absolutely yeah, do you feel? Do you feel like, with the diagnosis, that it almost made things a little easier now that you know what you're dealing with and why you're feeling the way you're feeling?

Olivia: 8:42

Oh, yeah, I agree. Like when I figured it out I felt so much relief, like I was with my mom watching some videos and I literally started sobbing because I couldn't relate who I am. And just it's been a life-changing experience getting that diagnosis.

Jen: 9:18

That's fantastic, and I bet it's also opened up the door to give you some tools as well. Oh yeah, for sure. The door to give you some tools as well? Oh yeah, for sure, that's wonderful. Okay, so we're talking about stomach problems and anxiety and some OCD and autism. So what comes next?

Olivia: 9:38

Yeah, so, uh, all of that just um continued through the years but, um, at age 12, I started developing more physical health issues, started dealing with these intense migraines that really started interrupting my life, and so my headaches were now constant and the smallest activities and triggers started sending me into these migraines, and so I just really dealt with that and thinking that that was like hard enough and I really didn't see coming like so much more. But that was rough having to deal with at the beginning of my teens.

Jen: 11:29

Oh, absolutely. Was there anything that gave you relief?

Olivia: 11:33

Um, I mean I went through about every medication they had and nothing gave relief. I'm, over the past few years, have been doing Botox for my migraines and that actually does give me some relief. So I'm still doing that and I'm grateful that that does help. Yeah.

Jen: 11:57

And that's in the back of the head, correct?

Olivia: 12:00

It depends. It can be the front of your head, the side, the back. I usually kind of feel it everywhere and it always Is it.

Jen: 12:15

Is it with the injection it's? Is it painful? The?

Olivia: 12:17

injections, um, I mean, they do cause a little pain, but it's, it's not bad at all like I'm. I feel like I'm kind of a pro at it now. So it's, it's no's, no trouble for me, just a small like pinch.

Jen: 12:32

Okay, and about how many? Do you know how many they typically give you?

Olivia: 12:37

Oh, the needles Um. I believe it's 31 for Botox.

Jen: 12:44

Oh wow, that's a lot of little pricks. I feel like I would get really wiggly and uncomfortable sitting there for that. Yeah, they have me laid down and I'm like trying not to tense up and yeah, absolutely Well, you know anything where there's a needle involved, especially if you can see it right Exactly. Especially if you can see it right Exactly.

Olivia: 13:09

Like I even still get nervous to this day about needles, even though I've been used to them for so long.

Jen: 13:17

You know, I think that's a lot of us. I would like to say that it would get easier, but I don't know. You know, I'm 44 years old, I've gone through infusions, I've gone through rejections, you name it. I probably experienced it at some point and it's like I keep telling myself, okay, this is going to get easier at some point. But you know, no, not really. Some days. Some days maybe it's not so bad, yeah.

Olivia: 13:43

I think it's the same, like with appointments, like I'm still anxious every time I go to appointment, like I like don't understand why, I'm not used to it, but it's just always happens nerves.

Jen: 13:55

I almost wonder if it's just because we're anxious people. Probably Okay. So I think there was another thing that you had touched on before Well, not during the recording, but before so you were later diagnosed with POTS as well, correct?

Olivia: 14:12

Yeah, after age 12, like the next couple of years, I started getting more symptoms and pain throughout my body, and I felt a lot sick when I was 15.

Olivia: 14:27

And so I went through a lot of testings and figuring things out, and so I was eventually diagnosed with several other chronic illnesses when I was 16, and one of them is POTS Postural Orthostatic Tachycardia Syndrome.

Olivia: 14:43

It is a dysfunction of the autonomic nervous system, so that means things that are automatically supposed to work in your body, like your heart rate, your breathing or your GI system they just aren't doing their job or functioning the way that they need to. And I think the big thing with POTS is that our blood is not circulating enough in our body, and so the blood pulls to the bottom of our feet, and when we're going from sitting to standing or any upright position, the blood just doesn't come up through the body to reach the brain and give it the option to do that task, and that's what causes us a lot of dizziness and high heart rate. Like my, heart rate used to go up to like 170 sometimes, which is a lot, and thankfully I'm on some medication now that helps control my heart rate and blood pressure, but I still deal with a lot of the symptoms, like just going from my room to the kitchen to grab something. I'm sometimes so out of breath and I have this feeling like I'm going to pass out.

Jen: 15:59

So that's definitely been a hard diagnosis to live with and I still struggle with it a lot, wow, and you know to be in your teen years getting diagnosis, diagnoses like that. How scary was that for you.

Olivia: 16:16

Yeah, it was very scary. I had, like those previous health issues, but it didn't really hit me till I was 16. And a lot more things are coming and I was definitely anxious and scared and didn't really know what was happening. I was glad to be getting answers but, like my life completely changed and it's like my teen years were taken away from me and I feel like I lost so much because it was all consumed by my health struggles and so it definitely took time to accept and learn how to cope with it Most definitely and looking back.

Olivia: 17:06

Do you feel like all of this is somehow connected? Yeah, I definitely think so connected yeah, I definitely think so. Most recently, I've been diagnosed with hypermobile Ehlers-Danlos syndrome EDS and so that's a connective tissue disorder that affects the body's functions, and it's also genetic and it could very well be the reason no-transcript, so that could be the reason why I have all these issues, but it's definitely a bunch of puzzle pieces, not understanding where things came from, and so, yeah, that's kind of unknown and just yeah.

Jen: 18:03

Okay. So what does a typical day look like for you?

Olivia: 18:08

Yeah, Would you want me to share like about the last few diagnoses I got first? Oh, yeah, absolutely Okay, I didn't want to get it mixed up.

Jen: 18:20

That's okay. Thank you for holding me accountable on that one.

Olivia: 18:26

Yeah, so around the same time I got diagnosed with POTS, I started dealing with nerve pain and so I got back doing other testings. I got a genetic testing that showed I have CMT, charcot-marie-tooth, which is a genetic neuromuscular disease. So this disease affects the peripheral nerves in my body, which is the hands, the arms, the feet and the legs, and so I have a lot of weakness because of that and that leads to issues like balance and walking, dealing with foot drop and other things and, like I said, it's also genetic.

Jen: 19:08

So my mom also lives with the condition as well. I mean, basically you're getting attacked from head to toe.

Olivia: 19:13

Yeah, it did feel like that.

Jen: 19:16

So okay. So back to what I was trying to ask before. Now that we've talked about everything that you deal with, what does a typical day look like? What is your treatment care plan?

Olivia: 19:26

like, I hate to cut you off again, but like sadly.

Jen: 19:30

There's one more thing oh my gosh honey, I'm so sorry oh, it's okay.

Olivia: 19:38

The last one at that age was just a diagnosis of fibromyalgia, which is basically widespread body pain and aching, and so the fatigue of all that was really hard and on top of that my sleep was just really awful. I think that happens to most of us with chronic illness, like the one time my body rests and it can't even do that job. So that was really difficult for me. And then that's when I started dealing with a lot of depression because of getting those diagnoses and so. But like, the last other diagnosis I got was when I was seven, no 18. They had me do a delayed gastric emptying scan which showed I have gastroparesis, which is a stomach condition, that where your stomach does not digest properly or fast enough, and so that kind of explained better my stomach issues. That started from the beginning and I think getting all these diagnoses was very helpful and validating to me, invalidating to me, but it was also very overwhelming and frustrating and just a lot to deal with. So it's definitely been a journey for sure.

Jen: 21:16

Yeah, absolutely, because you're finally getting the answers that you need and you deserve. But at the same time it's like, wow, okay, that you need and you deserve. But at the same time it's like, wow, okay, this is a lot, but that probably, I would assume that would make you feel a little better to finally get an answer to the stomach issues that you've been dealing with since you were so little. Yeah, for sure, I think there's something wonderful about finally getting the answers and being like see, I'm not crazy, it was really there all along.

Jen: 21:47

You just had to look deeper.

Olivia: 21:49

Yes, like not having a reason. It really bothered me because I felt like it wasn't real if I didn't have a reason or diagnosis for it, and so it's very relieving to finally have that answer. And it has its. It has its goods and bads, but definitely such a validating thing, absolutely.

Jen: 22:17

Absolutely. Thank you for sharing all of that. Yeah, of course. Okay, I think we're finally going to talk about it. What is a typical day and your treatment care plan look like?

Olivia: 22:29

Yeah, so my care plan right now for my stomach. They like at the beginning they had me like try the FODMAP diet and do more fiber and those things didn't really work and so right now, managing it, I am just working with my GI doctor, seeing a nutritionist and just really focusing on smaller meals and just really focusing on smaller meals. And if I'm struggling to get solid food down, I will sometimes drink protein shakes to try to get the nutrients I need in my body, and so my favorite brand of protein shakes are Ensure and those are really good and helpful on the days that my stomach feels sicker. And, like I said, for migraines I do Botox. I've also tried nerve blocks but those didn't help.

Olivia: 23:33

For pots, fluids and salts are huge things. So definitely having enough to drink and ways I can get salt, like I take these bitassium salt pills they're like any other medication and so they give me more salt in my body and I also can add electrolyte powders to my drinks. I like doing liquid IV or element tea and so those help as well for getting salt in my body. And I'm also on some medications for my POTS to help out, and so I think for my pain conditions, no-transcript and then also for CMT, which is the nerve disease, I had AFOs made for me, which are just leg braces that are trying to stretch my feet in the right direction because the way I'm walking isn't correct and it causes problems. So I've worn those a lot but, to be honest, lately I haven't been doing a good job with that. It's something I need to work on and really get back into wearing them.

Jen: 25:16

And how are they? Are they, are they comfortable? Are they painful? What do those feel like?

Olivia: 25:23

Probably a mix of both of those. Okay, yeah, so they shaped it like out of my feet, they made a mold and everything, and so it is comfortable and made for my feet, but it does hurt sometimes because of certain way it's just walking on it and stuff, but it's really supposed to help, um, my CMT and my walking, so yeah, Okay, okay, sorry to interrupt you on that.

Jen: 25:57

I just really wanted to find out if that was comfortable or not.

Olivia: 26:02

Yeah, it definitely takes some getting used to. And another thing for my CMT I've tried nerve blocks and Botox in my lower legs for my feet because of how tight they were, but sadly the doctor said that didn't really do anything or help. But I also did like an intensive outpatient robotics therapy program, two separate times actually and they were both for two weeks. And I just want to say like shout out to Ronald McDonald House, because that's actually where me and my mom stayed all those weeks that I was doing treatment in Atlanta, which is two hours away from where I live, and so that was really helpful. And so I've just done a lot of PT and OT through the years, a little aquatic therapy and most recently going to get IV fluids to help with my POTS or my other symptoms, and so I've been getting those occasionally as well.

Jen: 27:10

Okay, so how many specialists do you see to help treat all of this?

Olivia: 27:17

Yeah, so the amount of doctors I've seen are a lot, the amount of doctors I've seen new stomach doctor, um, and so I um I think having to go from like children health services to adult health services in the past few years has been hard because I had to say goodbye to all those doctors and some of them I really liked and like being in the adult system. It's like it's like completely different, and that was definitely overwhelming and to deal with.

Jen: 28:21

I imagine that would be a little scary, because you've grown to to trust your care team. Yeah, exactly, they're helping you to to probably feel the best that you can. You know and and they they've gotten to know you and so they know, okay, well, this is not going to work. And this will work, and, granted, they can send their files on to the next specialist or doctor that you're going to see, but it might not be the same, they might not treat you the same.

Olivia: 28:50

I can only imagine.

Jen: 28:51

That would be pretty terrifying. Yeah, it was. Do you feel like the new ones that you're seeing? Have they been pretty supportive or have there been any that you've had to say goodbye to? I think the main ones.

Olivia: 29:06

I have right now. They're good doctors, like I mean, they're not my favorite, to be honest, but they are supportive, and I think of so many of my doctors. Like, when I have an appointment, they're just so focused on medication changes that that's basically all we talk about, and so that's frustrating, because sometimes I want like them to engage and like talk to me like a human instead of a test subject, and so I'm grateful for the doctors I have I really am but then it's just also sad to not be able to talk about them as much with doctors who just aren't willing to give that time?

Jen: 29:59

Absolutely, Because, to be honest, you know some of them their bedside manner might not be as great or they might feel like they're more limited on time, and that's hard. Yeah Well, thank you for sharing that with us. I think one of the most exciting things I'm wanting to talk to you about is your spoonie boxes.

Olivia: 30:20

Yes, absolutely.

Jen: 30:23

So tell us more about that.

Olivia: 30:27

Yeah, so I started last August making spoonie boxes. I had the idea for like the past few months and stuff, the idea for like the past few months and stuff and um, I just um sorry brain fog.

Jen: 30:47

Hey, that's okay, you're in good company. I am the queen of brain fog. I think we all go through it, so take your time thank you.

Olivia: 30:55

Yeah, so I make them for chronically ill teens or young adults, and so they're just care packages that I make and I send out to people struggling and it honestly gives me so much joy to know that I'm giving joy to someone else. And it can be hard work at times Like I have my mom help me package them and stuff but it's such a worth it thing for me and it's so rewarding because it just makes me so happy and I love giving and helping others and encouraging them. And so at this point I've sent out, I think, about 58 packages so far. I literally just sent out 20 more, like a week ago, and so that's just been a really fun thing and exciting thing that I've gotten to do and I'm grateful for that opportunity and, yeah, it's been fun so how many people have you been able to do this for um?

Olivia: 32:06

well, I've sent out 58 packages, so I guess 58 people um wow wow.

Jen: 32:14

So are there any other fun things that you have up your sleeve that you plan to do? Um?

Olivia: 32:21

I don't think so. Um, I feel like that's already enough. It's so much like so much to do oh absolutely, oh, absolutely.

Jen: 32:33

I just figured I had to ask because you never know. Some people are like I'm going to do all the things. Just figured I had to ask because you never know.

Olivia: 32:38

Some people are like I'm going to do all the things. Yeah, I would love to like find other ways to advocate and just support others, because it's really a passion of mine.

Jen: 32:50

I love that. I love that and I think you know this is a great step. You know sharing your story and and people that are struggling with the same things as you they can come chat with you and you can support them through what they're going through? Yeah, definitely, and so where would be the best place for people to find and follow you?

Olivia: 33:10

Yeah, so my personal account is at Olivia R Dennis. Um, if you want to get in contact with me, that's the best place. I'm like. I'm always there if you need a friend to talk to or if you need support or tips or encouragement or anything. I love meeting fellow Spoonies, so definitely feel free to reach out. And then I also have a faith-based Instagram called your Pain has a Purpose, and so there I share about my faith in God and also share about my chronic illness journey, and that's also where I do my Spoonie boxes too.

Jen: 33:53

Oh my gosh, I love it. Okay, so I have a couple more questions. I mean, I know we've been going for a while, but I'm hoping people are hanging in there with us, because I have so many things I want to ask you. So how do you keep your sunny disposition with everything that life has thrown at you?

Olivia: 34:09

Yeah, it definitely has not been all sunny, for sure, definitely a lot of dark clouds, but I think a few things. Therapy going to therapy has been a helpful thing, definitely like seeking out help from someone who can work with you and help you find coping skills and ways to best manage situations is definitely a big thing, and so I've been doing therapy since I was 16, when I got help, and so that's been a journey for sure, and I'm grateful for what I've learned. And also my family and my pets my family. We spend time together, like playing a game or watching a show together, and just laughing with them brings me so much joy and I'm appreciative of them and all they do to try to get me to smile, even when I'm not feeling good, and so that's always nice.

Olivia: 35:18

And I also have two dogs, a Schnauzer mix and a Chihuahua mix. Their names are Scruffy and Poncho, and they are both rescue dogs. They even have their own Instagram. But though we rescued them, I honestly feel like they have also rescued me, because they have given such a huge comfort when I'm struggling and give joy to me when I'm feeling down, and it's it's weird. It's like somehow they know when I don't feel good and that they're there to support me, and it's so relieving to have a pet like that, for sure.

Jen: 35:58

I could not agree with you more. It's like they're intuitive.

Olivia: 36:02

They know when you need the extra hugs and love, and I love that yeah um, I would say, though, the biggest thing for me that keeps me going, though, would be my faith. Um, I think there's a lot. I didn't think I would survive or make it through on this journey, um, with chronic illness and mental illness, um, but God really gave me the strength to get through, and so my faith is really important to me, and, through my ups and downs of my health, I I've had to hold on to God, because, though things in my life change, god doesn't. He is my rock, he is my firm foundation. He understands my pain like no other, and it's really comforted me during the hardest time, and so His help is what I rely on to get through each day, and it motivates me to keep fighting, knowing that God has a purpose for my pain and suffering. You know that it's not being wasted and it's for good, and so that really helps me, um, in this important part of my life too. Oh my gosh, that's absolutely beautiful.

Jen: 37:19

Thank you, I don't think I could say it any better. Okay, I think I have one last one for you. Are there any resources you would recommend to anyone that's maybe on the more beginning part of a journey similar to yours?

Olivia: 37:33

Yeah, advice, I guess I would give for spoonies. Yeah, advice, I guess I would give for spoonies. I would say take it one day at a time. I think there's a lot of encouragement you can give to people with chronic illness, but that one just sticks with me a lot. Looking at the whole picture can be very overwhelming, and so it's important to be present and mindful where you are right now, so like if you're really struggling to get through, just take it even one hour at a time. It doesn't have to be one day or one step. You just do what you got to do to get through.

Olivia: 38:18

And I would also say, celebrate the small wins, because I know, with chronic illness, trying to accomplish things that normal people do are extremely hard. Now, like simple things like showering, getting out of bed or eating or walking is a big accomplishment, and so be proud of yourself and have compassion and grace on yourselves. Also, keep looking for answers on your journey. I think it's so easy to give up after trying things and failing, but really keep going. It is worth it, because getting second opinions is sometimes what you need to do, um, and that that has helped me getting second opinions and just finding someone else to talk to about it and, um, because you really deserve the help you need. So I would just say advocate for yourselves. Sometimes having someone with you to help advocate is really important. So, like I have my mom or my dad with me at appointments and they help explain things because, honestly, doing it on my own can be really hard. Honestly doing it on my own can be really hard.

Jen: 39:43

So I guess that would be the encouragement I give to someone on a similar journey. It's wonderful advice, you know. Take a person with you, ask all the questions, write down, you know, all of the notes. It's never too much and if it is, that doctor is not maybe the one for you. If they're annoyed with all the questions and all the people and all the notes you know move on find someone that's okay with it, because your health is your health, it's not theirs.

Jen: 40:10

Yes, so true. Well, thank you for sharing all of that advice. I love it.

Olivia: 40:16

Yeah, I think I also wanted to mention, um, something else that has really helped me with chronic illness um, uh, mobility aids.

Olivia: 40:28

So, like, I am an ambulatory wheelchair user and so that means I can walk, but only for shorter distances. I also use a cane to help me walk as well, and so I just want to say to anyone out there who wants to get a mobility aid whether it's a cane or a wheelchair, a walker or a rollator I would say go for it, because it's really helpful. And I know it's really scary to first start out and try, and having to do it in front of people is so nerve wracking, and I definitely still relate to that at times but it's really helped me function better and helped reduce my symptoms, and so you know, if you need that extra help, then you should do it because you deserve to be given support, and so that's something I'm grateful for that I've been using as mobility aids, absolutely, and I think that's a really good point because you know you might not need it all the time, but it's okay to use it when you need it.

Jen: 41:37

Good point because you know you might not eat it all the time, but it's okay to use it when you need it. And you know the people that are looking at you. It's not their life and it's not their body. They don't know what you feel like, so it can be scary, but but do the thing. Yes, exactly, oh, my gosh. Well, thank you so much. I feel like we've covered a wide variety of things. I hope this really helps other listeners and I genuinely I encourage everyone to reach out to you because you know you've been such a joy to talk to and I could only only say you know, I think you would be a great person to talk to if someone is struggling with any of the things that you've mentioned.

Jen: 42:17

Thank you, I've enjoyed talking to you. Thank you, it's been my honor. All right, well, until next time, my spoonie sisters, don't forget your spoon.