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Navigating College and Chronic Illness: Tips from Gabi’s Spondyloarthritis Journey

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51 min read
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Summary:

In this episode, Gabi shares her journey of navigating life with spondyloarthritis and palatal tremor as a young adult in her 20s. She opens up about the challenges of getting a diagnosis after months of being dismissed and details her treatment journey, including having to stop methotrexate due to side effects. 

Gabi highlights the accommodations that have been instrumental during her college experience, including adaptive tools and flexible scheduling. She shares how other young people with chronic illness can advocate for the accommodations they need to succeed in school.

Cheryl and Gabi also discuss the vital role of peer support groups, such as Cheryl’s Rheum to THRIVE program, and emphasize the importance of self-advocacy and maintaining a positive outlook. 

For those newly diagnosed, Gabi offers invaluable advice: seek reputable resources, stay informed, and embrace the mindset that thriving with a chronic illness requires adapting, planning, and finding joy amidst challenges. This inspiring conversation celebrates resilience, community, and the power of living well with a chronic illness.

Episode at a glance:

  • Navigating Life with Spondyloarthritis and palatal tremor: Gabi shares her personal journey and how she manages the challenges of living with inflammatory arthritis. She also shares what it was like to try different medications and switch due to side effects.
  • Key Tips and Tools for School and Work: Cheryl and Gabi discuss accommodations available through organizations like the Arthritis Foundation and adaptive tools and strategies for daily life.
  • The Power of Self-Advocacy: Gabi highlights the importance of advocating for yourself in medical and personal settings.
  • Creating a Supportive Environment: Gabi shares about finding community and encouragement through groups like Rheum to THRIVE and about the importance of building a network of understanding family, friends, and peers..
  • Advice for the Newly Diagnosed: Lean on trustworthy resources, Stay informed and learn to adapt, and Focus on maintaining joy and living life fully despite the diagnosis.

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:

Gabrielle (Gabi) Vaccaro – Hi! My name is Gabi. I have lived with autoimmune arthritis for three (ish) years now ( right now it’s called Psoriatic Arthritis/ ankylosing spondylitis, but that can always change!). I’ve also lived with Palatal tremor for over 6 years.  I am a college student heading to Occupational Therapy school next year, and I’m passionate about accessibility, anthropology ( especially, and ironically, bones!), and Star Trek.

Cheryl Crow

Cheryl is an occupational therapist who has lived with rheumatoid arthritis for nineteen 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:

[00:00:00] Cheryl:

I’m so excited today to have Gabi Vaccaro on The Arthritis Life podcast. Welcome! 

[00:00:07] Gabi:

Hi!

[00:00:08] Cheryl:

Sorry. My voice is like a tiny bit scratchy today, but anyway, back to you. So, can you let the listeners know where do you live and what is your relationship to arthritis, and in your case, rare disease? 

[00:00:23] Gabi:

My name is Gabi. I live in central New Jersey, although I’m in college in Ohio right now. I’m finishing up my senior year of undergrad. So, my relationship with arthritis is I’ve been living with what we’re calling psoriatic arthritis/ankylosing spondylitis. It’s currently what we’re calling it for the last three years now. I’ve also been living with a rare disorder, a movement disorder, called palato-pharyngo-laryngeal myoclonus for a little over six years now. 

[00:00:56] Cheryl:

Wow. And I would love to know — well, first of all, for people listening, psoriatic arthritis and ankylosing spondylitis kind of fall under this umbrella of the umbrella of spondyloarthropathies or spondyloarthritis. So, yes, sometimes they’re not sure yet which one that you have. But how did you get diagnosed with palato-pharyngo-laryngeal myoclonus? Oh no, I already messed it up. How do you say that? 

[00:01:27] Gabi:

Monoclonus. It’s okay. 

[00:01:27] Cheryl:

Okay. 

[00:01:28] Gabi:

Some people call it palatal tremor, too. Both terms are pretty well used. If that’s easier. I know it’s like a whole mouthful. So, I woke up with a clicking sound in both ears one morning, sophomore year of high school. And it was really loud and it was really affecting like sleep and concentration. Told me I had a cold, I had Eustachian tube dysfunction, to take allergy meds until it went away. Didn’t go away. I ended up going to like ten different doctors, and they all told me varying levels of medical gaslighting that I was making it up and that it was actually not real, and I was just totally being a dramatic teenager. And then, yeah, it was interesting. Like, when I look back on it, I’m like, how did they just totally, how did you say a neurological disorder was allergies in hindsight? I’m just like, doesn’t make sense. 

But, one day, I was working on an essay and my little sister went and put her head next to me to look over my shoulder, and she heard this clicking sound that I had been hearing 24/7 for years. And she’s like, “Gabi, are you blinking really loudly?” And I’m like, no? And then, we, figured out that she was hearing it. And from there, I went back to my doctor, who didn’t believe that she could hear it. So, I ended up putting voice memos on my phone and recording up to my ear, and then pressing play in front of him. And then, he was like, “Oh, that’s weird.” So, then I ended up going down a whole rabbit hole. And then, I ended up researching myself, figuring out what it was based on my symptoms, and then trying to find a doctor who specialized in that. I ended up going to a doctor at Temple in Philadelphia who had a specialty in that. I’m like, I feel like that way she could tell me one way or the other, if this is what I think it is. 

And then, she did like a scope, and she was able to diagnose me in ten minutes. She’s like, “Oh, yeah, this is really obvious.” So, basically, it can happen essentially, which is what we think is my case. It’s a little unclear. Or it can happen like post stroke symptomatically. I have features of both. So, we’ve said it’s probably essentially because my brain MRI is good, but with all the other stuff I have going on, who knows? Basically the muscles in your soft palate — so, your soft palate is if you put your tongue under the roof of your mouth and move backwards, that soft and squishy part is your soft palate. So, the muscles in your soft palate, either the tensor vali palatini or the levator palatini, I have it in the levator which is usually the symptomatic kind. Sorry if I’m getting a little technical. I actually am in a dysphagia lab and I —

[00:04:27] Cheryl:

This is so fascinating. No, and it’s, there’s a saying that patients become experts in their own conditions, right? And so, you’ve learned all these names of the muscles of the human, you know, mouth and neck. And it’s actually so — I just know from being an occupational therapist, swallowing and oral motor coordination is extremely complex. It’s one of the first things we learn as humans when we come out of, you know, the womb. So, anyway, so yeah, this is great. 

[00:04:59] Gabi:

Yeah. So, basically, when what are the muscles in your soft palate, usually the tensor tympani, if it’s essential, if it’s not caused by anything; or the levator palatini, if it’s symptomatic. I have it in the levator palatini, and then I also have it in my pharyngeal muscles. So, the back of your throat, straight back. And then, in your larynx, which is your voice box. So, if you actually, if I were to stop talking for a second, you can see my voice box spasming hundreds of times a minute. 

[00:05:30] Cheryl:

Is that what was causing the clicking? 

[00:05:32] Gabi:

Yes. So, basically, it makes this sound. When every time the muscles contract, it’s pulling on my Eustachian tube, which is the thing that pops when you’re on a plane. So, it’s opening and closing that tube hundreds of times a minute. Which is just, it’s more of a, nowadays, it’s more of a nuisance. It can have effects on swallowing, it can have effects on a lot of things. I’ve been pretty lucky thus far. Although I did have to do — I did, there’s two recommended treatments. It’s out there for polymyoclonus. You can try like anti-seizure medications — oh, lol, balloons. 

[00:06:13] Cheryl:

Sorry, Zoom is making — for those watching the video recording — Zoom has recently decided to give random emotions when people are talking. The other day, I was in a meeting with somebody who’s It kept giving the thumbs down emoji. And she was like, “I’m not saying anything bad.” Sorry. So, anyway, continue. 

[00:06:33] Gabi:

No, I love that, that it’s like, oh, fun. I tried to do it again, I didn’t do it. But there’s two treatment options. You can try anti-seizure meds, which I tried, and they didn’t work. Or you can do Botox injections to paralyze the muscle, which Botox injections in the back of your throat are not pleasant. And I tried that twice, and it didn’t really help enough. And I had difficulty swallowing for a couple months after, which, senior year of high school, not being able to swallow liquid without a straw was just like, not the experience you want to have. But so, now I just live with it because I’ve done the two treatment options. So, it’s just part of my life. I kind of forget that people, like, experience quiet as a thing. I’m like, that’s wild. 

[00:07:27] Cheryl:

Wow. I don’t know how rare it is to experience this completely randomly, but I have had times where I swallow and I hear a click. I can hear a click, and sometimes, that’s why when you’re, like, on the airplane, and then you’re coming down and the air pressure is changing and you chew gum or like swallow that can help. So, maybe that’s, I’m not saying that I have what you have, I’m just saying, I’m like trying to think of ways that people listening could like try to empathize or imagine what that’s like.

[00:07:58] Gabi:

It’s basically, it’s that, it’s the same, it’s the eustachian tube the same. It’s just that, and how your ears pop on an airplane, mine pop 120 times a minute, 24/7.

[00:08:12] Cheryl:

Yeah. Wow. Wow. And then, so on top of that, so that was, you were in senior year of high school when you got that diagnosis. What about the spondyloarthritis? What were you — what symptoms did you have and how did that diagnosis process go? 

[00:08:27] Gabi:

So, all through high school, I had weird medical issues. My knees hurt all the time. I was constantly so much more tired than my friends. I was having these random rashes. And my pediatrician was like, “Something’s weird with you. I don’t know what, but something’s weird.” But we were like, let’s keep an eye on it. Maybe you just, you have flat feet, so maybe that’s why your knees hurt. Oh, you’re a little anemic, maybe that’s why. Nothing really concrete. And then, freshman year of college. I went on a mock trial trip my spring semester. So, mock trial is basically lawyer cosplay, where you pretend to be a lawyer and you do arguments, and you stay up all night prepping. 

[00:09:08] Cheryl:

I’ve never done it, but it sounds so fun. 

[00:09:11] Gabi:

Oh no, it is very fun. And I went on a trip where I had not slept for two days and ate nothing but McDonald’s fries. So, clearly the best for your body. I’m being sarcastic. But, and I woke up the next morning, and my fingers — I don’t remember which fingers, but these four, I don’t know what they’re called. 

[00:09:32] Cheryl:

Wait, which part of your fingers? 

[00:09:34] Gabi:

These four fingers, the bottom joint, and then the middle joint. 

[00:09:38] Cheryl:

Oh yeah, the MCP and the PIP. The metacarpophalangeal and proximal interphalangeal joints. So, like knuckles and then the one between your knuckle and the very last one, the distal one. Yeah. 

[00:09:54] Gabi:

Well, I woke up and my fingers were super swollen on both sides. And those hurt so bad. it was, like, totally fine. Next morning, like, ah. I was like, oh, maybe it’s something, maybe I slept wrong on both hands simultaneously, and took some Ibuprofen. Didn’t get better after a week or two. I called my pediatrician from college and she’s like, “Nope, not normal, Let’s go get blood work.” And like my CRP was super high So, I did Ibuprofen around the clock for a little bit longer. I really couldn’t write or type for more than 5 or 10 minutes at that point. I ended up failing all of my finals because I was just really bad, I couldn’t finish them because they were so long, and they were writing. And I didn’t know about accommodations at the time. I didn’t connect that that was something that I could, ask for help with. 

But about a week before I left for the summer, I went and I saw a rheumatologist near my school, and then she’s like, “You have some kind of inflammatory arthritis, I don’t know if it’ll, it might just go away on its own, let’s try and do NSAIDs for another month.” I did NSAIDs, didn’t get better. Started me on Plaquenil, and then that kind of started the whole arthritis journey. It wasn’t until this summer, actually, where I started having — I had the finger involvement, the knee involvement, and then I ended up having feet involvement over the last couple years. But this summer, I got COVID and my back started really hurting, my lower back. And that, plus my family history. And then, I did an X-ay of my lower back, I guess that makes more sense, which showed a little bit of joint damage. So, that, plus I have some family history of psoriasis that kind of put me in this diagnostic bubble three years later. 

[00:11:50] Cheryl:

Yeah, well, and just for people listening as like a teachable moment, psoriatic arthritis can present with either like distal symptoms like the fingers, like the distal means like furthest away from the core of your body, so like fingers and toes. But the other spondyloarthropathy, sorry, like axial spondyloarthritis, or ankylosing spondylitis, or non-radiographic axial spondyloarthritis present in the spine and pelvis. But psoriatic arthritis can present either with spine, or distal involvement, or both. So, so it is very hard. This is why I’m glad I’m not a rheumatologist in charge of diagnosing these. But it’s often this little detective process of knowing or paying attention to where it’s, where the inflammation is taking place, and then looking at the imaging and seeing what kind, whether it’s the tendons versus inside the joint. 

But long story short, so you’ve had this kind of preliminary, this preliminary diagnosis of inflammatory arthritis, and then basically some combo of psoriatic arthritis, for, three years? Is that right? Yeah. Okay. And what kind of, I know you mentioned treatments for the palatal monoclonus. What about your treatment journey kind of highlights and lowlights? And that’s always a frequently asked question for the newly diagnosed people. 

[00:13:17] Gabi:

So, I was on just Plaquenil for six months and that kind of worked, but not really. Then I added methotrexate, which worked really, really well. And then, it just made me so nauseous. But I stuck with it for a very long time. I’ve only just stopped it. I was on that for a year and a half, two years. I don’t even know. And then, I ended up going on an archaeological dig a year ago and I flared super badly while abroad. 

So, I ended up, I was on steroids for a while and back on steroids for a while again. This seems to be a recurring theme, prednisone for my fall semester, but it’s okay. But basically, that flare, I ended up starting a biologic. I tried Humira, didn’t work at all. Tried Enbrel, worked super well until it didn’t. And now I’m on Cosentyx and sulfasalazine and hydroxychloroquine, which we just added, so.

[00:14:22] Cheryl:

Yeah. Well, and so this is just a — this is, your experience is an example of how a treatment is not always straightforward, right? As much as we would like there to be just one clear best treatment, it’s often an iterative trial and error process. I want to, you know, I want to talk about your experience on methotrexate if you’re okay with that, because I feel like I want to counterbalance my own story. Because I often just tell people about the fact that I have been on methotrexate for over 20 years, except for pregnancy and postpartum, and I don’t have any side effects of methotrexate like fatigue or nausea often. I very occasionally will get fatigued the day after, but long story short, I share this story because it seems like there’s a lot of people online who talk about the side effects. 

And sometimes I’ll say, just remember, not everyone has these side effects. But I realized this is — sorry, it’s like a window into my thought process that maybe I don’t ever want to come across as minimizing the reality of these side effects. I think doctors don’t know why some people have these side effects. I’ve, ironically for me, every other medicine that has nausea listed as a side effect, I will experience that. For some reason, I just don’t on methotrexate. I also don’t experience hair loss. I have so much hair. Even my hairdresser’s like, “Your hair is so thick,” and people are like, “How come your hair doesn’t fall out?” I don’t know. I’m a freak. 

But anyway, so back to you, what — not only can you paint a little picture, if you would like to walk down like terrible memory lane, I’m sorry to make you do this, of what it felt what your body felt like after you took methotrexate, just for educational purposes and also validation purposes to people experiencing the same. And then, I want to talk about your thought process and how you came to the conclusion that it was time to break up with methotrexate, because I think that’s a really hard decision. Just like a breakup with a relationship. 

[00:16:18] Gabi:

So, it was definitely hard because methotrexate worked really well for me. It’s not that it didn’t, it was like my joints would always feel the best the day after I ate the methotrexate. I took the methotrexate, I don’t even know. But I was on the pill form of methotrexate for, I think, eight months, maybe a year, I don’t know, times. And I was so nauseous the day after, I could not be around food. I lived with my roommates, and they needed to pre-warn me that they were cooking in the kitchen, because otherwise I would just be, like, gagging. Like, it was just so nauseous. I wouldn’t eat at all. And then, I would be like, I was like, oh, if I just don’t eat, I don’t have to go out. 

And then, I switched to injections after a couple of months because I finally built up the courage to say to my rheumatologist, “Hey, am I supposed to be so nauseous that I can’t eat the day after?” And they’re like, no. And I’m like, but it said nausea. How was I supposed to know that there was a level of nausea which was acceptable? I don’t know. I’m one of those people who needs to be told something explicitly. And sometimes I don’t come to the conclusion on my own. Like, oh, I don’t, have to do this. I don’t know. I was that kid who got myself — 

[00:17:39] Cheryl:
Oh, I — No, go on. Go ahead. 

[00:17:43] Gabi:

I was that kid who got my braces off two years early because they’re like, wow, we didn’t expect you to follow the instructions so exactly. And I’m like, but you told me to do this. So, I’m doing it. I don’t know. 

[00:17:55] Cheryl:

Well, and it falls under the umbrella. Like I often say, it’s such a cruel irony that so many people with chronic invisible conditions and especially inflammatory arthritis that are they are accused of faking or exaggerating their symptoms when really, the majority of people I encounter with these conditions are vastly underreporting their pain and underreporting, meaning not telling people and not making a big deal about how much pain or suffering that they have. So, your example is a perfect one of that. Like, you’re not, you know, you’re not even bringing it up to your doctor because you just said, well, it says on the side effect list that nausea could be a side effect. So, I guess this is what the tradeoff I have to make, you know. So, yeah, so you switched to, a lot of studies do show that injectable methotrexate is associated with much less likelihood of nausea and stomach GI upset than the oral pills. 

[00:18:57] Gabi:

Yeah. So, I switched to the injectable. Which worked pretty well, I didn’t have a lot of side effects for, I would say, the first couple of months of taking it. I’m like, life is good, everything’s wonderful, I just take it easy the one day. I would do it on, I used to do my methotrexate on a Friday night, so then I would have Saturday, and then I ended up switching, so that way I would do it on a Thursday night and have Friday. Because I didn’t have classes on a Friday, and then I could still have a weekend with my friends. Like, that was just something that was important to my mental health, to be able to have a weekend. But eventually it got to a point where I was still nauseous. Not enough that, like, I could be around food, and I could maybe eat a piece of toast. 

But I was also quite dizzy, and then I was like, if I have a meeting or something, I can’t go, because I’m, like, dizzy. And so, it’s being nauseous and dizzy and just having a whole day of the week where I was just totally down for the count. It just wasn’t worth it in my lifestyle anymore. I guess because I was also actively flaring for like months at this point. And so, I was like, it’s not like this is preventing me from flaring right now. Like, I can try something else. 

[00:20:13] Cheryl:

Yeah. Yeah. And we’re going to talk a little bit more about the Rheum to THRIVE support group or the alumni group later, but that is something that, you know, that is discussed often in the group is like, when is it — thinking, helping each other think through, really, what you’re having to do is perform like a cost benefit analysis, right, of methotrexate. And when you’re on multiple meds and you have multiple conditions, you can’t — it’s very hard, right? Because you can’t completely separate out the variables, right. But I think your point was extremely well taken that methotrexate isn’t the sole driver of controlling your flares because you’re still flaring on methotrexate. And there are other medications to try. So, tell me about what it was like when you told the doctor that you wanted to maybe break up with methotrexate. 

[00:21:04] Gabi:

She was like, “Oh, that makes perfect sense.” It was like a no brainer thing. She’s like, I messaged her this long message explaining all of my reasons. And it was like, I feel bad for the, my chart soliloquy that happened there. And then, she’s like, “Oh, let’s do a virtual visit this week so I could switch you to something else.” And then, we did it. And then, I switched and it was not a big deal. And I was like, wow, I was expecting you to fight me for this or something. I don’t know. 

[00:21:32] Cheryl: 

Yeah. And that’s so — I just, I love this example because so often we do, we gear ourselves up for things to be a fight, right. And, and sometimes they are. But in your case, it’s like a great example of you don’t know how your doctor is going to respond until you ask. So, I think if for people listening, I’m always thinking like, what are the main, what are going to be the takeaways from this episode, right? And one of them is, it’s okay — if you’re having a lot of side effects on a medication or even you’re just feeling bad and you’re not sure is it the medication or is it something else, it’s always good to bring that up. It’s okay to bring that up to your doctor. 

You don’t have to tough it out. And I’ve had to have, I’m very similar to you, I’ve had to have that same conversation, or my doctors had to have that conversation with me, and it reminds me of that meme where it’s one guy looks at the other guy and goes, “How much pain are you in?” And he’s like, “Oh, just the normal amount.” And then, the other guy goes, “The normal amount is zero.” And the first guy who was, looks like, what? whoa, I never thought of that. Like, that’s not possible to be in zero, right. So, it’s hard to know what normal is, right? 

[00:22:43] Gabi:

Yeah, I had said, “The normal amount of pain,” to a medical assistant once when they asked walking in, and she, and they’re like, “What does that mean?” And I’m like, “I don’t know. The normal amount.”

[00:22:56] Cheryl:

Yeah. Yeah, it’s really hard to put pain into words. You mentioned a little bit about how this was affecting you mentally, like you were saying with the methotrexate side effects, how you were having to choose to not have your side effects on the weekend so that you could still have a weekend, which was important for your mental health. Being a young person, being in college and managing these conditions is such a unique experience. Like, what helped you, what else helped you cope during that time?

[00:23:33] Gabi:

So, a couple of things. One, being Rheum to THRIVE, because I, no one had ever told me explicitly that this was a chronic condition up until, like, I was, like, a year in, and I was still waiting for the magic pill that was going to make me all better. And having the group, like, I wasn’t even gonna do the group originally, but I’m like, oh, I follow this lady on Instagram. She seems nice. Let me try it. And then, it was like, honestly, the biggest game changer for my emotional well-being to be empowered. And then, to know what was happening and have all the details. And then, also having people that I could talk about things with, because I’m in my early twenties. I don’t know what I’m doing with anything in life. Usually, I can call my mom and ask her how to fix my dishwasher, but you can’t do that with chronic illness, but now you can, cause you have a group of people.

[00:24:32] Cheryl:

I’m like, that’s such a great analogy. Yeah. Like, having access to — and I think a small group is nice because I think sometimes if, I don’t know, when I joined those big, huge Facebook groups, it’s like, for me, sometimes it’s too many voices. Like that, I can’t take it all in. It’s so nice to have a small, manageable number. 

That’s just my personal opinion, but, and yeah, the multi-generational group, I so agree with you that having people in different stages of life to share wisdom. When we talk about in the groups, talk about dating, talk about family, friendships, jobs, accommodations and stuff like that. So, I’m really glad. I didn’t realize that you weren’t sure about the group at first that you were thinking you were going to maybe just do the self-paced, which the self-paced is great, but I’m glad that, I’m glad that you joined the group as well. 

[00:25:22] Gabi:

Yeah, it was like, honestly, the biggest thing for me, like, emotional well-being wise. It was like, crazy. And then, in terms of general life coping, I think school and accommodations was a big thing. I have a whole laundry list of accommodations, and I literally would not still be in college without them. 

[00:25:44] Gabi:

Yeah, how did you learn about accommodations? 

[00:25:48] Gabi:

Okay, so I did — I had non-formal accommodations in high school for the palatal monoclonus that I could wear headphones when I was taking the test and listening to music. And that was like, I went to a Catholic school, so 504 plans weren’t really a thing. And so, it was like very unclear. And then, I went to college and I was like, should I ask for accommodations? How do I do that? And then, I ended up finding the Disability Services Office. And then, I just had a conversation with them, these are all my issues. And then, they’re like, “Okay, go to your doctor, get documentation, and then I’ll put all these things in your chart, and you can get all these accommodations.” 

So, it was definitely like a learning process on my own, because I realized, later on, I realized that you can just ask for more accommodations later on if you need them. This is a very silly example that really changed my quality of life. So, I have the lower back involvement, and then also I have the knee involvement. So, being able to change positions in class is really important to me, like, just to reduce pain and stiffness. I asked for a nice office chair in all my classes instead of the little tiny desks. Which is not something that they thought to bring up to me, but I’m like, can I get a different kind of chair? And that was just, like, the easiest thing that now I’m not in pain at the end of an hour lecture, if I could move around and change position. 

[00:27:22] Cheryl:

That’s so great. And let me just, I just want to define what accommodations mean in this context. So, accommodations in the United States, it’s part of Americans with Disabilities Act. And then, when talking about educational environments, it’s the Individuals with Disabilities and Education Act, which say that, you know, people have the right — well, IDEA states people have the right to a free and appropriate public education with reasonable accommodations. That’s like the law language. So, now, the devil in the details is who gets to define what is a reasonable accommodation, you know, but the classic case is with ADHD gets extra time on a test to accommodate for that. Or someone who uses a wheelchair for mobility gets a ramp so that they can physically access the school. 

And the ADA, it’s, anyway, it’s all, it’s part of all these disability laws that are meant to give you access to physical and educational environments, right, in the United States. And so, you have the right, every college and every university that is, has any public funding, as far as I understand, has a office of disability services or some entity in the college or school that is in charge of ensuring that it takes these people’s — people, disabled people will say that these are the, this is my condition, this is the accommodations I need, and then the college works with you to determine, yes, these are reasonable. The chair gives you access to your education because without the chair you are in a lot of pain and that interferes with your ability to learn. So, you just, anyone listening knows that you have the right — it doesn’t have to just be like a, something as obvious as like a wheelchair user, right? 

I think a lot of people think, “Well, I’m not really disabled because I have arthritis, but I can walk,” and stuff. But no, it’s disability is this gigantic spectrum, right? Like another common accommodation, I’m not sure if you’ve used this one, is like using speech-to-text or voice dictation software so you don’t have to handwrite. Handwriting is really hard when your hands hurt. Obviously, right? And despite the year, the fact that it’s the year 2024, a lot of colleges and high schools still do a lot of stuff with pencil paper. So, I think it’s a really, I think it’s really important that you identified accommodations as a coping tool. ‘Cause I was thinking more like, when I asked the question in my head, I was thinking more like mental coping tools, like mindfulness or something. But you’re right that having those accommodations, it’s, I’m guessing it eliminated some stress from your life, right?  

[00:30:18] Gabi:

Yeah. Like, one accommodation that I have is, well, they go together. I have flexible attendance and extensions on out-of-class assignments. So, if I’m flaring and I’m having a rough week, I can email my professor and get an extension or flexible, or like an excused absence. And it has the same weight as like a doctor’s note because I’ve done that previous documentation. So, then my professor can’t get into a whole arguing battle. Do you really need it? And I don’t need to tell them my whole life story in order to get an extension. And it just gives me the flexibility that if I’m having a bad day, I can just rest and focus on recovering and doing what I need to do to both like heating pad, just chill out, taking a little stretch, and not worry about being in class. 

[00:31:09] Cheryl:

Yeah. Oh, flexible attendance is so huge. It’s like there’s a lot of corollaries, I think is the right word, for accommodations on the job. Now jobs tend to be, just my experience just off the top of my head, jobs are often a little more difficult to get the accommodations for depending on the employer than schools. But things like flexible attendance, being able to reschedule meetings without some sort of like demerit or something. And yeah, and having access to those ergonomic tools is huge. Any other accommodations you wanted to highlight for maybe other college students listening, or maybe college professors listening?

[00:31:54] Gabi:

Don’t be afraid to ask for everything, is what I’m going to say. If it’s not appropriate, they will say no. But sometimes if you don’t ask, they won’t bring it up. Like, I have the ability, for exams, I can dictate exams, so I can voice to speech to them. I can take breaks during the exams. I have a little bit of extra time in exams just to account for the fact that I can take a break or dictate. I have responsive transport, which basically means I have an app and I can get a car, pick me up from my apartment, and take me directly to the door of all of my classes. If it’s like a really snowy day out and I’m like, my joints are just not feeling this whole walking thing, I can still go to class.

[00:32:40] Cheryl:

That’s so cool. I hadn’t heard of that as accommodation, but it makes perfect sense. I’m imagining my college campus, which there weren’t roads to all the buildings, but there were little sidewalks, and there’s the maintenance people were always in the little golf carts driving around. Or they’re little electronic carts. I think they would probably end up using that. I don’t know about your school. Do they use those little golf carts? This is just a silly question. I don’t know. 

[00:33:05] Gabi:

My school doesn’t, but I know a lot of schools that do. I guess cause all of the buildings are like accessible from the back entrance by the road, so it’s just — so, they used to have where they would actually drive onto the quad in these minivans, but then they stopped doing that. 

[00:33:24] Cheryl:

Yeah. Yeah. Okay. Yeah. My school I went to undergrad is founded in like 1860s. So, it’s like very old and they did not think of accommodations remotely when they designed anything there. But that’s a story for another day. So, this is really great. So, did you have — this is a common thing people bring up in the support groups is fear around asking for the accommodations and just feeling emotional. Emotions are okay, but feeling negative emotions around and fear around that process. What was your experience like? 

[00:33:58] Gabi:

I was super, like, I guess I was nervous that they were going to be like, because of my past experiences with the palatal myoclonus diagnosis, I assumed that they were gonna call me a liar and not give me anything, which was not the case. They were actually really good. I will say, with accommodations, when you talk to your doctor to get documentation, sometimes you have to be really specific about what kind of accommodations you want, and you have to do free research, and ask your doctor to specifically write those accommodations in the letter. Because sometimes, especially with I went straight to adult rheumatological care, and I guess they weren’t really experienced with accommodations in an academic sense. 

So, I had to tell them what I wanted. I also had my primary, my pediatrician — who I still see, I will see until she kicks me out, because I love her — I had her do a lot of my documentation, because we could just have a conversation, because she had access to all those records. So, being really specific was important, and I had to do a lot of the first work. Most of the time, they’re very nice. I have had, I’ve taken classes as like a visiting student, and they’ve not been super supportive, but it’s when you just have to be specific.

[00:35:15] Cheryl:

Are there any websites that helped you? For example, Ask JAN, and I’m gonna put this in the chat, the Job Accommodations Network, it has a great bank of possible job accommodations, and you can look it up by either symptom or diagnosis. So, that’s a website I often recommend to people for job accommodations. Did you use any like resources that you remember for school?  

[00:35:41] Gabi:

I remember the Arthritis Foundation has a lot of resources for like kids with JIA who are transitioning to college, which I didn’t have a JIA diagnosis. I didn’t get diagnosed until I was 19, but it was still pretty applicable to me. And so, I kind of pulled from that to ask for things.

[00:36:01] Cheryl:

Okay, yeah, I see this know your workplace rights, know your testing and accommodations rights. Okay, I’ll put some of these in — College Access and Success, from the Arthritis Foundation. I will definitely put those, some links in the show notes. I’m just always trying to give people more resources. And you’ll, you know, you don’t always have to have a formal process where you have like, these job, a job or work accommodation, job or school accommodations can be something that’s formally documented and approved through school. That’s the way to make sure that you get it, but you also, like, I’ve had jobs where I kind of, just especially really small employers, like when I worked for a small outpatient OT clinic, you just can talk to your coworkers and be like, “Hey, can you help me with this thing?” 

Like, there was this one thing when my joints were flying postpartum where I was in a pediatric clinic, and we had these swings, and we had to pinch this, what are those things called? Like, hooks that are like carabiner hooks, and to get the swing up to the ceiling. And I had a really hard time pinching it, and so I would just ask for a hand from anyone in the room, and if it was safe, obviously, for them, with the kids that they were watching. And I didn’t have to document that anywhere. It just was something that they just knew I needed. My thumb was sore and I needed a little help with that. So, just know it doesn’t always have to be, like, a documented thing, but if you want to — but it’s better to document it and not need it. So, I hope that you’re, I hope that your experience and your tips, thank you for giving people these tips because, again, it’s something that a lot of people either don’t realize that they have the legal right to, or they’re scared, or they gaslight themselves because they think it’s not that bad.

[00:37:50] Gabi:

I definitely was like, “Oh, it’s not that bad.” But then I was like, I guess what’s the harm in asking? Like they’ll say no, it’s not appropriate. 

[00:38:01] Cheryl:

That’s a great, yeah, that’s a great outlook. Sorry. So, I was just, yeah, that’s like a good outlook for a lot of things in life, I think, actually. Is there anything else, coping wise, like any specific, I think about Acceptance and Commitment Therapy for me and reading the Happiness Trap and going to therapy, like those were like some of my highlights for what helps me cope on a daily basis; friend and family support. Obviously, the support groups, too. Anything else, just while we’re on the topic of, we’re on the topic of accommodations and also coping?

[00:38:39] Gabi:

I have like awesome family and friends that support me. I have — my parents are great. My mom has driven the eight hours to my college campus every time I started a new medicine. So, that way she can just be next to me. That’s quite funny. Every time I start a new medicine, I’ll wake up in the middle of the night and she’ll be like staring at me, making sure I’m okay.

[00:39:02] Cheryl:

Oh, that’s so sweet. 

[00:39:05] Gabi:

I know. She’s wonderful. And then, my roommates are, I have three roommates and they are awesome, like, especially with being on like immunosuppressive medication and not getting sick. They have what they’ve playfully called the ‘Don’t kill Gabi’ plan where they’ll be like, I woke up with a slight sore throat this morning, already COVID tested negative, will be wearing a mask in the kitchen. And I’ll be like, cool. And so, they’ve always just been, I think, having people in your life, people are usually very nice if you are direct and explain things well. 

Then, generally, people will be nice and reciprocal. But yeah, I have a great, I have great family support, and I have great friend support, even though I wouldn’t say they get chronic illness 100% of the time, or get arthritis specifically, because it’s not like I have anyone close to me in my life who has, autoimmune arthritis, but they were just always really willing to listen and respond appropriately.

[00:40:19] Cheryl:

That’s amazing. Did you — are these people that you sought out or were you randomly assigned to them as your roommates? 

[00:40:28] Gabi:

They were honestly, I was close friends with one of them and then two of them were friends of a friend and so we just all grouped together. Sophomore year, we got all grouped together. So, I like, I only knew one of them well, like initially, and then the other two just stepped in. 

[00:40:46] Cheryl:

That’s amazing. That’s amazing. One more question before we get to the rapid-fire questions, which is going by, it’s going by so fast, but you’ve already painted a picture and in many ways of what a day in your life would be. But that’s one of my favorite questions, actually. I don’t, I always ask it. What is, what’s a day in your life like in terms of are there things that you do? What are the things that you might do to manage your condition? Like, you know, putting on compression gloves if the fingers are hurting, or a heating pad or, and anything you want to share about like your day in the life?

[00:41:23] Gabi:

I would say setting up my day for success. I’m in college, so my schedule is flexible. I do better with a slow morning. Just like having time, especially since like morning stiffness can be long, to just have time to slowly wake up in the morning. So, I do my classes, my classes I usually schedule more in the afternoon. I’ve set up my environment, like my apartment. So, like I have pump bottles on my shampoo and conditioner, like little things like that, a chopper, just so that things are easier for me. I sleep with compression gloves on, which I like, and I have thumb braces that I sleep with, that my occupational therapist gave me. I call them thumb jail, because with the compression gloves, I’m like, my hands are like in jail when I go to bed. But it’s good, and just, honestly, taking things at my own pace, and knowing that I’m not building my time and my schedule so that I’m not in a rush. And I —

[00:42:31] Cheryl:

What’s that like? I need to learn from you. 

[00:42:36] Gabi:

Yeah, I like to structure my assignments where I put them in my planner to be due earlier. And so, I can have the ‘I don’t feel well, I’m not doing this today’ conversion factor, and still just be ahead of everything. 

[00:42:50] Cheryl:

I love that. I love that. Yeah, that’s definitely a chronic illness pro tip, is getting things done, attempting to get things done in advance so that you don’t have that pressure in the last minute, especially because you don’t know how you’re going to be feeling at the last minute, so I love that. One of my other favorite questions to ask is what are your best words of wisdom or advice for newly diagnosed patients?

[00:43:18] Gabi:

I guess I would say, seek out resources and research on your own, cause with my whole rare disorder, I ended up doing research and figuring out my diagnosis and then going to a doctor who could confirm it. And with arthritis, if I didn’t have outside support resources, like the group, I would have been, like, so lost. No clue what’s going on. Doctors will not tell you everything explicitly. I didn’t even get a pamphlet, and I’m a very data driven person. And so, don’t go down Google rabbit holes. And I guess it’s who you are as a person, if you’re, like, an anxious Googler, maybe that’s not the words of advice for you, but for me, I find that knowledge is power, and knowledge is very reassuring. And so, don’t be afraid to do research from reputable sources that are not gonna — don’t go on WebMD and Google everything. Yeah.

[00:44:17] Cheryl:

Yeah, I think that’s great. Great. Know that, especially with a chronic illness, you’re the one living with it 24/7, so it’s completely appropriate to become as well-informed as you can about your condition and just check your sources. Actually, strangely enough, I will say, a quick plug for WebMD, but I actually think that they do pretty good fact checking. I know they got a bad rep initially. But they’re, most of their posts I see nowadays are like medically reviewed and everything. But it’s more the wellness industrial complex that I think gets people into a bit of a dark or dangerous place that is extremely dangerous because it doesn’t seem dangerous, you know, it seems very nice. So, that’s as much as I’m gonna say. But anyway, I asked you your advice, so that’s your advice. Do you have a favorite like mantra or inspirational saying, something that you repeat to yourself on tough days? 

[00:45:17] Gabi:

I guess something for my journey is I’ve failed a lot of things. Like, I failed classes, I’ve had to change majors, and do all these different things differently academically because of arthritis. And I’m also a huge Star Trek fan. So, there’s this Captain Picard quote that I love, like, “It’s possible to commit no errors and still lose. That’s not weakness, that’s life.” And so, just understanding that sometimes you could be doing everything right. You could take all the meds and exercise and drink all the water and it’s still not your fault. And you might have to do things differently. That’s okay. 

[00:45:58] Cheryl:

Well, I am totally gonna use that quote. I hadn’t heard it before. I, the one that I quote a lot is about, from Star Trek, it’s, “Do not mistake composure with ease.” ‘Cause I saw someone did a meme where it was like, “You have anxiety. I never would have thought you have anxiety. You seem so, you seem so positive,” or whatever. It’s do not mistake composure with ease. I just love that. But that’s not like an inspirational saying. That’s just like a saying that I say. Do you have a favorite arthritis, we already mentioned a bunch of tools, but do you have a favorite arthritis related gadget or tool in your toolbox?

[00:46:41] Gabi:

I’m like thinking of like physical tools. I’m a big heating pad girlie. And I love my compression gloves. I love compression gloves. And get cute compression gloves that match your outfits. I like buy the Grace & Able ones and I’ll have them in all the colors so then I can match to my outfit, although I’m a big green person and there’s nothing in green yet. So, I’m still on the hunt for a cute green.

[00:47:04] Cheryl:

I can tell Sarah. I know her. She’s been on the podcast twice actually. She was my very first, did you know she’s my very first guest, the founder of Grace & Able? And if you listen to Episode One of the Arthritis Life podcast, Grace & Able was just an idea at that time. That was 2019. And same with Arthritis Life. I just started it as like a YouTube channel. I didn’t even know it was going to become, like, bigger and have Rheum to THRIVE and programs and stuff like that. So, it’s really neat. And then, we just did a catch up. So, I’ll put links to those. 

Sorry, I just got excited because I love Sarah and I love Grace & Able. So, yeah, those are great. She, as a patient, formed this company along with, she co-founded it with a hand therapist, an occupational therapist. Because she was like, why are all these compression gloves ugly and uncomfortable? What is going on here? So, of course, it took a patient, right, to design a better one. So, anyway, but I can’t be, I’m not really 100% biased because I already knew her through Arthritis Foundation, a flashback to Arthritis Foundation or call back, through volunteering with them. So, anyway, so compression gloves, cute ones, matching your outfits. Perfect. You can even bedazzle them. I have my bedazzled ones from the Taylor Swift concert that I still wear to like other events now. Although, once you’ve bedazzled them, you can’t wash them. Okay, do you have a favorite book, movie, or show that you’ve watched/read recently?

[00:48:28] Gabi:

I don’t know. I like, I’ve been reading, I’m a big Star Trek fan, so my new thing now is I’ve watched all the Star Trek series like a bajillion times, and now I’m trying to read through the novels, because there’s like hundreds of the novels. And so, I think that’s what I’m, yeah, the Star Trek universe is ever expanding. You need something to get into if you have a lot of free time. Just watch Star Trek and read all the books. So, I don’t know. I guess that. 

[00:48:51] Cheryl:

Okay, Star Trek, definitely. I’m putting that up. I have Star Trek settler themed, the Settlers of Catan. That’s as much as I get. Okay, what is it — this is like kind of the 100,000$ question that this entire podcast is trying to answer. So, it’s a hard one. But what does it mean to you to live a good life and thrive with inflammatory arthritis? 

[00:49:15] Gabi:

I guess, to me, it means knowing that everything’s not going to be perfect all the time. And it’s not like I’m going to be pain free and have no fatigue all the time, but just doing the things I want to and figuring out the tools I need to and just having like my coping and my support like my family, my friends. Like, my faith is very important to me. And just like using all of that together to just live with it. Like, it’s part of me. It’s not all of me. And I don’t know, just vibing. 

[00:49:49] Cheryl:

Yeah. You’re so chill. I just love it. I love it. Yeah, and, yeah, like it’s, I love that. It’s living alongside it. Living in — what would you call it? I keep wanting to say the word peace, but it’s not even that. Living in harmony, that’s the word, with your condition versus, and I think that’s a very healthy outlook. Is there anything else you want to share with the audience? this is your platform. I’m joking to myself. This is your soapbox. And anything else you want to share or with the universe, you totally don’t have to. 

[00:50:26] Gabi:

I just, I love the group. It was like the biggest thing in terms of education and support for me. And I love the graduates group. I look forward to it every week. It’s funny because my roommates are like, “Are you going to hang out with your arthritis friends?” And I’m like, yes, I am. 

[00:50:41] Cheryl:

I love it. Oh, yes. I need to do a better job of explaining. So, there’s the initial smaller cohorts of the Rheumatoid Arthritis groups that are like anywhere from 8 to 14 people. I’m usually like around 8 to 10. And that they go, you go through the program over the course of 3 or 4 months. And then, if you want to keep connecting, because a lot of times people like, wait, I want to still — like, now I love these meetings, and I want to see these people. There’s an alumni group that meets also every week. And that’s not as much of an educational support group in the sense. I’m not, we don’t have predetermined topics of the week. 

And it doesn’t have the course materials along with it. It’s just pure, like you mentioned, friendship. And I’m still facilitating that where we have guest facilitators. But, and we do sometimes talk about, right. We talk about like questions people have, updates. And it’s also, yeah, a lot of bonding. And you’ve been there a little while and it’s some of the people there have been there since 2021 now, so that’s three years. So, it really is — sorry, I’m talking more about it, but it’s really a chance to form like longer lasting bonds and friendships. What are some of your favorite things about the group? 

[00:51:59] Gabi:

I don’t know. I feel like I have a bunch of — I think I’m the baby of the group right now. the graduate group. I feel like I have a bunch of aunts. And like I have like chronic illness aunts and I can just ask things, and be like, have humans who get it. And like just talk and I look forward to hearing about everyone’s week. I’m like, oh, what’s happening in their life? I’m like thinking about it. I’m like, oh they had this appointment this week. Like, I wonder how that went. Like, throughout my week and just having that group. 

[00:52:29] Cheryl:

Yeah, you know, this is gonna sound like a really strange analogy. But it just occurred to me that like my mom once said she got a housekeeper for the first time and she was like, you know, what I realized it’s not just having — it’s every other week — it’s not just the fact that they come every other week. It’s that throughout those two weeks, you’re not stressed about the state of the house because you know that there’s going to be this appointment where things are going to get cleaned up. And I feel like, not in the same exact way, but the group is more like you have this thing that you’re looking forward to each week that you know is — same with therapy, right — but where you’re like, okay, this is where, you know, if something’s stressing me out, this is where I can bring that. 

Or if this is a huge, a major win, like in your case, you shared in the group, about the methotrexate, which you just shared to the podcast, too, right, and it’s like, everyone was like celebrating with you. Okay, you made the decision to break up with methotrexate, we’re celebrating you. And people celebrate all the major life events, too, like graduating college, going to, yeah, going on a trip, we just celebrate those things. So, yeah, thank you for sharing about that. Yeah, I just really, I just want people to know about it. I still don’t know the best way to get the word out, you know what I mean? I use social media, and the podcast, and videos to just make sure people know, because I think it is a — obviously, I’m biased — but I think it’s a pretty special experience. 

So, thank you for being part of it because it is a group is only as strong as the members, right? So, it seems to attract some pretty wise, pretty cool people. So, if you are listening and interested, the show notes always have like links to the latest, the pages that will tell you like when the next groups are starting because right now, I run them, I start the cohorts twice a year, and then the alumni group runs continuously. So, thank you so much for sharing that. And then, where can people find you online if you are amenable to people finding you online?

[00:54:35] Gabi:

I’m not super active on social media, but you are more than welcome to follow me on my Instagram, @GabiGraceVaccaro. It’s my name. It’s not hard, but yeah. 

[00:54:45] Cheryl:

Yay! Awesome. Awesome. Yeah, thank you so much again, and I, this conversation, for those of you listening on the audio format, this will be Also on YouTube on the Arthritis Life YouTube channel, and detailed show notes and a transcription are always found on my website for each episode on the episode page, arthritis.theenthusiasticlife.com. So, thank you so much, Gabby. Seriously, this is so great. I hope people find this story, you know, comforting and relatable and also informative as to the, especially the college accommodation process. So, have a great day. We’ll talk to you later. 

[00:55:23] Gabi:

All right. 

[00:55:24] Cheryl:

Bye!

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