Summary:
Have you ever struggled to find your “new normal” after a diagnosis like rheumatoid arthritis? Have you ever found it difficult to advocate for yourself when interacting with doctors, friends, and even family members? If so, this episode is for you!
Jenni shares how her symptoms were initially dismissed before she got diagnosed with rheumatoid arthritis. She then got her diagnosis and experiences a rare side effect of a medication: medically induced pustular psoriasis. Through it all, she also balances being a mom and wife. In this episode Jenni shares how she learned the importance of social-support, self-advocacy, humor and an unashamed embracing of her “new normal.”
Video of Conversation
Episode at a glance:
- Diagnosis and treatment Saga: After experiencing knee pain, fatigue, and fevers, Jenni is first diagnosed with an “infection in her knee” and then told she needs to “just lose weight; after advocating for herself Jenni gets a second opinion and a preliminary RA diagnosis, then has many complications with treatments including medically induced pustular psoriasis.
- Learning Self-Advocacy: Jenni talks about the importance of finding a doctor who is the right fit for you, listens to your story, and explains their treatment clearly – while avoiding medical gaslighting and weight blame
- The importance of social support: Jenni shares how she lost some friendships, but also found amazing people to keep her going. Jenni started “My Spoonie Sisters” to help others feel less alone.
- Jenni’s Coping Tools: She works to lean hard into the mindset of embracing her reality and not feeling shame about her health.
- Finding a “New Normal:” Be honest with the people in your life – including finding ways to talk about it to your children if you have any. Don’t be afraid to ask for help and be specific! Be open to trying new things and sharing/connecting with others.
- Best Advice for Newly Diagnosed Patients: When things feel out of control – you matter, you’re enough, your life matters; use what you’re going through to help others.
- Favorite Mantra: Don’t forget your spoon – save one for yourself!
- Thriving with Rheumatic Disease: Thriving with rheumatic disease means not giving up! Have hope that you will still live a wonderful life, even if it’s not exactly how you may have once envisioned it.
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:
Jennifer Weaver
I am a Rheumatoid Arthritis and medically induced Palmoplantar Pustulosis Psoriasis patient advocate striving to listen and support other women newly diagnosed as they find their “new normal.” I’m also the leader of the My Spoonie Sisters website and social media account, where I help others with chronic illness feel less alone.
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:
- Links to things mentioned in episode or additional listening
- Mamas facing forward – Mariah episode of the Arthritis Life Podcast
- Man’s Search for Meaning – book
- ACT – Acceptance and Commitment Therapy
- Crying in H Mart;
- Speaker links
- @Gracefully_Jen
- @My_Spoonie_Sisters My Spoonie Sisters
- My Spoonie Sisters Blog Page… – My Spoonie Sisters
- Cheryl’s Arthritis Life Pages:
- Arthritis Life website
- Youtube channel
- Instagram @arthritis_life_cheryl
- TikTok @arthritislife
- Arthritis Life Facebook Page
- Cheryl on Twitter: @realcc
- Arthritis Life Podcast Facebook Group
Full Episode Transcript:
Cheryl: 00:00
I’m so excited to have my social media friend and fellow Washington State resident, Jenni Weaver here today. Welcome!
Jennifer: 00:07
Hey, how are you? Thank you for having me.
Cheryl: 00:10
Thank you for coming. If you could just start by letting the audience know, the listeners know, you know, where — well, I already gave it away. You’re in Washington State. But where do you live, and what is your relationship to arthritis?
Jennifer: 00:22
Okay, yeah, so I am — the best way of describing it, I’m near Vancouver and Portland. I’m north of there in a tiny town in Washington not far from the ocean. I love it. It’s amazing. But my relationship with arthritis is I was actually diagnosed with rheumatoid arthritis in 2012. December, actually, of 2012. So, it’s been a little bit.
Cheryl: 00:45
Wow. And how old were you then, if you don’t mind?
Jennifer: 00:48
I was 32.
Cheryl: 00:49
Okay, perfect. Not perfect, but I mean, perfect for me to know that information. Yeah, so, we always kind of — I always like to hear people’s diagnosis, quote unquote, ‘sagas’ or ‘stories’. Sometimes it’s more of a story, sometimes it’s more of a saga. So, how did you get diagnosed? What were some of your first, you know, symptoms?
Jennifer: 01:12
Yeah, so mine, of course, it’s definitely a saga. And, yeah, you know, it honestly, it started with a pain in my left knee. And it wasn’t widespread. It was just the knee. And it got to the point where it didn’t matter. Everywhere I went, I was limping. I was complaining. My husband was worried about me. And I talked to my family doctor, and at the time, he thought that I had a strep infection hiding in my knee.
Cheryl: 01:43
Oh, wow.
Jennifer: 01:44
And I guess it’s a thing. I didn’t know it was. Yeah. And he was like, “Well, have you ever had it?” Yeah, like years ago, right. So, yeah, so he had me on antibiotics for geez, I think it was at least three months, and didn’t get better. And next thing we know, it’s my shoulders are starting to hurt. My hands are starting to hurt. And everything’s inflamed and hurt. It’s just so painful. And even my gut started acting strange, and I didn’t want to eat. I rapidly lost — yeah, I rapidly lost like 45 pounds. I was under 100 pounds.
Cheryl: 02:22
Wow.
Jennifer: 02:24
Yeah. And I’m five two, so I’m short. But still, I felt like I should weigh a little more than that.
Cheryl: 02:29
Yeah, no, no, no. I was down to 105. And I’m five, four, and I had been like, 130, 135, like, mostly muscle as an athlete. So, it’s really uncomfortable losing that much weight so fast when you’re not trying to. Yeah, I’m so sorry. Yeah, so, okay, so you had these systemic symptoms, like the weight, unintended weight loss, plus the joint pain symptoms. Were you fatigued also?
Jennifer: 02:59
Yeah. Well, and at the time, I didn’t even realize that you can get the low-grade fevers, and I was getting them all the time. And I was like, well, I’m not sick. Like, what? Why is all this happening? This doesn’t make sense. Just finally, the doctor said, “You know, I think you have some sort of rheumatism, but I can’t place my finger on it. It’s not my specialty. And it’s time we get you seeing someone else.” And I knew someone fairly close to my family that also has rheumatoid arthritis. And he was going to a specialist in Spokane. And so, she recommended it. And it was at the time where we lived, I was only two and a half hours away, only two and a half. And that wasn’t bad. But I hated the doctor. I absolutely hated him.
Cheryl: 03:45
Oh, no. What were some of the things that made it a hate relationship?
Jennifer: 03:51
Yeah. So, my very first time that I met him, he was more focused on my weight than on my pain.
Cheryl: 03:59
Oh, like, in the sense of what was he attributing your weight loss to?
Jennifer: 04:06
It wasn’t like he really attributed it to anything. He was so focused on, “Well, prednisone is the answer, you really need to put some weight back on you. And that should help with your pain and inflammation. And we’ll go from there.” And looking back on it, I really wish I would have just stood up for myself. I was so new into it, and I was so scared because, I don’t know, I guess I didn’t know what was going on with me. And I didn’t feel strong enough to ask all the questions and to stand up for myself.
Cheryl: 04:35
Yeah. And, you know, I feel — I don’t know if you’ve felt this way — but I felt like once I lost a certain amount of my body weight, it almost felt like I was in a real brain fog. Like, I don’t know if there’s some medical term for that experience. But like, I just couldn’t think clearly. And I mean, it could have been the autoimmune brain fog from the rheumatoid arthritis but it’s just, it’s — and you don’t know better. If you haven’t been a chronic illness patient before, you don’t know that you can even ask questions, and yeah, yeah.
Jennifer: 05:07
Yeah, to me, it was like, I’m here waiting for you to just tell me what’s wrong with me. Give me something, make it better. And I had no idea that that’s not how it works.
Cheryl: 05:18
Well, in 2012, there were so many good treatments already available, though. Do they put you on anything other than prednisone?
Jennifer: 05:25
So, they finally did. It took some time. But the next time I went back to see him, and I actually wrote all this down, because I have a complicated story. So, that’s when we decided to start doing the disease modifiers. So, of course, the first one was Plaquenil. And I actually had a seizure on it.
Cheryl: 05:45
Oh, no. Oh, I’m so sorry.
Jennifer: 05:49
And at the time, I was also on medication for migraines. And I contacted the office and said, “This is what happened. You know, researched, my husband doesn’t feel comfortable with me on this. And it looks like this is something that sometimes, in rare cases, happens to people on his medication.” And he was like, “Oh, no, no, no, you already have seizures. I want you to stay on this medication.”
Cheryl: 06:15
Oh, dear.
Jennifer: 06:16
I have seizures? Since when have I ever had a seizure in my entire life? What are you talking about?
Cheryl: 06:22
No. Oh, my gosh.
Jennifer: 06:25
He assumed because of the medication that I was on that treats migraines and seizures, he assumed, I had epilepsy or something.
Cheryl: 06:35
Oh, wow.
Jennifer: 06:36
And so, this was an over the phone conversation where he was really pushing me to stay on a medication that I did not feel comfortable staying on. And that was the first time I did stand up for myself. And I said, “No, I’m not taking it.”
Cheryl: 06:52
Mm-hmm. Mm-hmm. Good.
Jennifer: 06:53
Yeah.
Cheryl: 06:53
I mean, it’s not like it’s, there’s no other treatments, you know?
Jennifer: 06:58
I know. And I wish, I just wish I could go back in time and shake myself because there’s so much more I know.
Cheryl: 07:05
Oh, totally. I have to tell myself every day, like, know better, do better. Like, if you know, better, you can do better. But the time you didn’t know. So, you did the best you could, you know.
Jennifer: 07:14
And I think it’s why it’s so important why we have things like these podcasts and groups that people can go and ask questions and support each other. Because people don’t need to feel alone like that. They need other people to stand up and say, “No, no, no. Go back and ask this.”
Cheryl: 07:32
Yeah. A hundred percent. A hundred percent. So, then, what was the next, what was the next step on the treatment journey?
Jennifer: 07:39
Okay, so after that one, we tried sulfasalazine. I had hives on that one.
Cheryl: 07:44
Yeah, that’s one of the few that I’ve ever had a reaction to, that my body did not like it. Yes.
Jennifer: 07:50
What happened to you on that one?
Cheryl: 07:53
This is where I wish I had — this is another thing if anyone listening is like, newly diagnosed, like, know better, do better. I wish I had kept better records. My mom did keep some records. We don’t seem to have like a completely comprehensive list. Because, you know, each facility keeps their own records. And then, I requested them one year, but had been too long. Anyway, keep them yourself. That’s advice. But according to what my doctor just recalled; it was just that I had a stomach upset on sulfasalazine. I guess some people are just sensitive to sulfa drugs. So, it’s on my chart now. Like, don’t give her sulfa meds because I guess some antibiotics are sulfa, like, are sulfa-based. So, I don’t recall. Again, I was so out of it. I felt like I was — I just wish, I kept thinking I’m dying of like stomach cancer or some sort of GI cancer because of the unintended weight loss that I was so shocked when I got diagnosed with RA. But then, like, I just felt, like, I just felt — and when looking back, I just felt like it was a little bit of like a dream-like state. Like, okay, try this. Try that. And then, all of a sudden, things kicked in when I was on Enbrel and methotrexate, like, well, I’m back. She’s back! Anyway, but back to you.
Jennifer: 09:05
Yeah, exactly. Well, no, I love hearing from other people. Because a lot of times we do have similar things or, I don’t know, it’s just encouraging to hear what other people have to say, too.
Cheryl: 09:15
Yeah, the advocacy is so important. And whenever I hear about someone else advocating for themselves, it reminds me to advocate for myself. Like, for some reason, I’m like, “Yeah, she should advocate for herself.” But then when it’s me in that scenario, I’m like, “Oh, but I don’t want to like make, I don’t want to cause trouble. I don’t,” you know, so. Okay, so then, sulfasalazine didn’t agree with you very well. Okay.
Jennifer: 09:39
And I don’t know about you, but Meloxicam was another one they tried me on.
Cheryl: 09:43
Yeah, that’s like a painkiller. Sorry, I keep on wanting to say SSRI. It’s a non-steroidal anti-inflammatory, I thought.
Jennifer: 09:53
Yeah, yeah. So, they tried that one and they thought, “Okay, let’s try this. Maybe this will be a little more gentle.” Oh, no. So much GI upset. It was horrible.
Cheryl: 10:01
Oh no.
Jennifer: 10:02
And so, I was like the list just kept growing. Okay, this one’s not working. This one’s not working. Methotrexate was the next one. And I did the pills; that made me so sick. Eventually I had to do the injections. And I was so, so terrified. And I’ll tell you the first time I saw you in a video injecting yourself, I wish I would have seen that way back then. Because I think that would have made it a lot less scary for me.
Cheryl: 10:29
I’m sorry. I am, yeah, I honestly didn’t know how common needle phobia was until I started doing videos of myself doing my injections. And then, I realized I wasn’t being very sensitive by not giving any sort of warning to people who are like true, you know, like very, because I’m claustrophobic so I understand phobias. Like, it’s not just a cute little thing. Like, it’s like an actual, like, a horrifying experience if you have a bad phobia. But anyway, but a lot of people are just not, just maybe phobic, but maybe not clinically phobic, like a psychologist would diagnose you, but just like, like you said, terrified or scared to do it.
Jennifer: 11:06
Yeah. And you know, what I finally noticed was about a year ago, I started recording myself doing them. And something about it forces me to get over being scared.
Cheryl: 11:18
Ah, wow.
Jennifer: 11:20
So, it’s almost like, I feel like I have to record it. And then, I’ll delete it. But something about recording it, it’s like that pressure of you gotta just get it in there. Just get it over with and do it.
Cheryl: 11:30
Wow. So, do you share them on social media or they’re just for you?
Jennifer: 11:34
I have. I haven’t shared one in a while. But there for a while, I was sharing them. And I even, I showed the first time showing myself crying about it. Because I want people to understand that like, sometimes, this is super scary. It’s intimidating. Who wants to jab themselves? Nobody.
Cheryl: 11:50
Right, right. Yeah, yeah. But do you think it has gotten easier over time?
Jennifer: 11:56
I definitely think so. I have just stopped doing that for a while because they moved on to biologics, and that’s when life got even more crazy. So, I’m trying to keep a timeline, but it’s so crazy.
Cheryl: 12:11
Oh, no, no, and I’m the worst at like interrupting and being like, wait, what about this? Yeah. Okay. So, you did the methotrexate. And then first, the pills, then the injection.
Jennifer: 12:21
So, yeah, so it was probably still 2012 when we introduced biologics because she was just was not happy with the methotrexate. She’s like, you know — because at this point, I switched rheumatologists, because I would not deal with that first one anymore. And because honestly, the second time I went in to see him, he handed me three pamphlets. And he said, “I think you have one of these. I’m not sure which one. But take them, take them home and read them over.”
Cheryl: 12:50
What were the pamphlets titled, or what were they about? Like RA, PSA? And —?
Jennifer: 12:55
So, one was lupus. One was RA. I don’t remember what the third one was. I wish we would have kept them.
Cheryl: 13:05
Maybe spondyloarthritis or psoriatic? Or maybe —
Jennifer: 13:09
I don’t really remember them.
Cheryl: 13:12
Wow, that’s a lot to not, to be in that and swimming in that kind of unknown territory. Like, I guess I can’t even wrap my head around this because it might be lupus and might be RA.
Jennifer: 13:22
Yeah, I know. And then, it wasn’t like he was explaining why he thought that it could be. And I remember going home because my husband wasn’t able to go with me to that appointment. I remember going home and being and telling him what the doctor said. And he was like, “Well, why didn’t you ask him this? And why didn’t you ask him that?” I just didn’t even think about it. And I was to the point where, okay, maybe I should not be trusted to go alone.
Cheryl: 13:46
And not trust, it’s just it’s a lot for one person to handle.
Jennifer: 13:49
Exactly. And my husband was like, “So, he wants to give you all these medications. And he wants to keep having you try them when they’re constantly having really bad reactions for you, but also not totally working. And you don’t even have a diagnosis. Like, why are you taking meds for this mystery thing?” And, yeah, so that is —
Cheryl: 14:13
Just for people listening. It’s a somewhat common practice in rheumatology, if you don’t know the diagnosis, to use response to medication as a diagnostic, like, factor, right. So, it’s like if the classic case is prednisone as the first one, because if someone doesn’t respond at all to prednisone, then typically, they don’t have an inflammatory or autoimmune condition because they tend to do rapidly better. Like, psoriatic arthritis, rheumatoid, do a lot, people do a lot better on prednisone. So, if you hadn’t done well on prednisone, then that could have been a little signifier that oh, maybe this is something else. And then, like a little bit same with methotrexate. Like, if you don’t respond at all the methotrexate — so, usually what makes people stop methotrexate is the side effects, but they still usually have a positive effect, like of reducing the joint pain and inflammation. So, that’s not necessarily a bad practice in and of itself. But the doctor should, in my opinion, if I ruled the world, they would explain very clearly to you like, “Look, this is what we do. In your case, it’s like, this is not like you’re being some lab rat that’s being experimented on. Like, this is a typical thing we do, like these diagnoses aren’t — there’s no gold, or there’s no silver bullet for the diagnosis.” It’s not like diabetes, where if your blood sugar’s over X, you have diabetes; if it’s under X, under something else, it’s like pre-diabetes. And then, if it’s under something else, you don’t have it. Like, that’s it. It’s one test. But anyway, but they — so, I’m not saying that you shouldn’t have felt bad, that they should have explained it to you a lot better.
Jennifer: 15:47
Well, that’s just exactly it. And that’s what I try to tell people now is like, this is common, but it’s okay to ask them questions. It’s okay to be concerned, and to not feel like things are right. And I look back on it now, and I don’t think he’s necessarily a bad rheumatologist. I think that he could have dealt with things a lot better. When he saw that I was visibly scared, absolutely terrified and emotional, where was the compassion there? Where was the —
Cheryl: 16:20
That is not too much to ask.
Jennifer: 16:21
Where was the five minutes to better explain things and try to help me not be so scared? Huh?
Cheryl: 16:28
Yeah, absolutely. It’s soft skills. That some people are really great at taking the tests that allow you to get into medical school, you know, taking the MCAT, taking, you know, understanding biology and the science, but if they don’t have the soft skills to go along with it, then their effectiveness as a practitioner is really diminished. And it’s just not a good experience for the patient either. So, yeah.
Jennifer: 16:54
And, you know, I thought that by going to the big city, that this could be the perfect doctor for me. And I had kept hearing not so good things about the ones in Tri-Cities. And finally, I was like, you know what, forget what they’re saying, I need to try the ones in Tri-Cities. I need to find out for myself. And I actually found one that was wonderful. And the very first time that I went in, he looked over my chart, he looked over the meds that we had been trying. And he’s like, “You have rheumatoid arthritis. Why don’t you have the diagnosis? I don’t understand. But I’m giving it to you now,” this is what’s wrong with you. And let’s hit this harder, because your body is super attacking itself right now. And what they’re doing is helping, but we can do better.
Cheryl: 17:46
That and I would have to say that that’s a little more of the standard of care, is early, aggressive intervention versus slower. Not that your doctor was doing nothing. Like, they weren’t just being like, “Take a Tylenol,” but, and again, it’s an art and a science. But I’m so glad to even — so many patients don’t know, I actually didn’t know for so long. Because why doesn’t anyone talk about it? What’s second opinion? Like, what does that even mean? Like I have a doctor.
Jennifer: 18:12
And is that okay? And if I don’t like the second one, can it go back to the first one?
Cheryl: 18:16
Yeah, there’s so much confusion. It’s like, literally we all need a handbook. And like, that’s part of my Rheum to THRIVE like, self-paced course is like the, how to be a patient, how to talk to providers, how to understand this convoluted healthcare system, not even just even touch the topic of insurance because that’s its own PhD; everyone needs to navigate insurance. But anyway, okay, so you’ve got the new doctor in the Tri-Cities which, just for those listening, Spokane has a much bigger city than what’s called the Tri-Cities in Washington State. So, that’s a great, it’s a great example of like, just because you would assume like maybe you live in Houston, like a mecca for health care, you might still find an amazing doctor in like rural or less urban Texas, you know, same thing.
Jennifer: 19:01
Absolutely. Yeah. And this one was fantastic. And so, that’s when we added in Orencia, and I was on that one for quite a while, but they just still didn’t feel like that was the one. They were like, nope, I still think we can do better. And so, after that, we tried Actemra. An actual camera for me was like, gold. That was the happy sweet spot.
Cheryl: 19:24
That’s awesome.
Jennifer: 19:25
And I felt like true remission. I, oh, my gosh, I was able to lose the weight again. I was able to do all the fun things, rollerblading, activities with my family. And then, my white blood count just kept getting at a bad level. So, eventually they took me off of it.
Cheryl: 19:46
Oh, I’m sorry.
Jennifer: 19:50
Well, I didn’t know that was a thing either.
Cheryl: 19:52
Yeah, yeah. It can be, for sure. Like, the medications are — it’s hard for them to predict who’s gonna respond what way. Like, I was on Actemra and my white blood cells didn’t get low. Like, why is it that? Like, no one can tell me why that happened to me or didn’t, or did happen to you, and I didn’t have it? You know what I mean? It’s sometimes can be really, yeah, sorry. It’s so hard if you get, you get a taste of that like, remission, and then it gets taken away from you.
Jennifer: 20:23
Yeah. And to be honest, I’m to the point where I’m considering asking to try it again. Because it was so wonderful. And I look back on those years. Actually, it was only a year. It was one year. And it was wonderful.
Cheryl: 20:37
It felt like years.
Jennifer: 20:38
And I want to feel like that again. And so, I really am contemplating saying, hey, can we at least give this a shot one more time and see how I do? Is there something I can do to maybe not have that happen again?
Cheryl: 20:49
Or maybe, I know sometimes when the counts are getting low, I’ve seen providers space out longer between injections or infusions depending on how the meds are administered or pills, if it’s like Xeljanz. So, there is some wiggle room sometimes.
Jennifer: 21:08
Yeah. And to me, it’s worth a shot. Because it’s better than feeling like I’m just kind of making it through the day as best I can. And I want to do better than make it.
Cheryl: 21:20
Well, and I think you coming to the question that I call it like the $100,000 question, but with inflation, maybe it’s the million-dollar question, which is like, how do you know when this is as good as it gets, you know? Like, how do you know when to say, I’m gonna — this medicine is working as well as anything that’s going to work, most likely. And I’m going to focus on adapting and adjusting, versus continuing to try to like, get back into that perfect remission. Is that kind of a question you’ve come up with or confront, too?
Jennifer: 21:53
I think so. And I think part of it — I hope you’re ready for the next one.
Cheryl: 21:59
Oh, yeah. Yeah.
Jennifer: 22:00
So, it’ll make more sense when once I explain this. So, the next one they tried me on — because I feel like I’ve been on just about everything at this point — they tried me on Remicade. And I was on Remicade for quite a while. And once again, it felt like I was in remission again. And then, one day, I woke up. And I had these little round red sores on my legs. And I went to the to the doctor, like, an urgent care doctor, and they thought that somehow, I’d gotten like a skin infection from the gym pool or the gym hot tub or something. And so, they put me on an antibiotic. Okay. Well, before my next infusion date, the sores kept getting bigger, and then they were on the palms of my hands, then they were on the balls of my feet, then they were in my scalp. I had them in my ears. And they were getting bigger, and they were getting full of pus, and then popping, and bleeding, and peeling. I cannot even begin to express how scary it was. The day I walked in there, and my rheumatologist said, “Hold on one second. I’m gonna get the other two rheumatologists. I’m pretty sure I know what this is. But I want to get their opinion too.” I’m like, shaking even talking about this because it was scary. The three of them walk in. And they had to gently try to explain to me what medically induced pustular psoriasis is. It was not a skin infection. It was from my Remicade.
Cheryl: 23:42
Oh, my gosh. I didn’t even know it was possible. And I was on Remicade for like, six years.
Jennifer: 23:47
It’s so rare. They said it happens to like 0.1% of people.
Cheryl: 23:51
Oh, my gosh. I’m so sorry. You never want to be that rare case, do you?
Jennifer: 23:57
Apparently, I am that weird rare case. So, at the time, they didn’t think it was because of them being an allergic reaction to TNF inhibitors in general. They thought it was just that particular one. That’s when they tried me on Simponi, which is also a TNF inhibitor. It came back.
Cheryl: 24:21
Oh, no. Oh, can you get some luck over here?
Jennifer: 24:30
So, evidently, if you have a reaction like this more than once, it’s like it does a weird reaction to your body. And what they explained to me is I now have a secondary lifelong diagnosis.
Cheryl: 24:47
Oh. And is it called the pustular medically induced pustular psoriasis? Oh, okay.
Jennifer: 24:53
Yeah, so, what we’ve had to do is figure out how to treat both now. And so, they just took me off everything all at once to try to get my skin clear up. And they sent me to a dermatologist to try different things. But they’re so used to treating just regular psoriasis.
Cheryl: 25:13
Yeah.
Jennifer: 25:15
That all the topical treatments they were giving me just burned. It just burns. It almost looks like a burn from the inside out.
Cheryl: 25:24
Oh, geez.
Jennifer: 25:25
If you really want to get grossed out, Google pictures, but I don’t recommend it.
Cheryl: 25:30
No, no, I thought what you were gonna say is that it was there’s something that I’ve seen a few patients talk about before where it’s like a really rare allergic reaction that starts with pustules. And that can like, grow into your mouth and your throat, and were like, super scary. This is still, this is super scary, too. I’m sorry to anyone listening, because I feel like a lot of times, I’ll tell people, “Oh, don’t be scared of the meds,” or, you know, or, “The majority of people do okay,” but it’s important to confront, I feel pretty strongly, it’s important to confront all the parts of the potential reality, right. Like, we can’t run away from the fact that these rare events can occur, you know, and that’s important to be aware of that.
Jennifer: 26:12
Well, and that’s why they give us all the warnings. And that’s why they give us all the information. And a lot of it is saying it’s potential side effects, because they are potential. And it doesn’t mean it’s going to happen to everyone. And I always tell everyone, just because this happened to me, does not mean it’s going to happen to you. You still do your work and talk to your doctor and ask the questions. But don’t be, don’t be too afraid. Because you want to try to find the right combination that’s going to work for you. And it’s still possible, and it’s still possible even after what happened to me. And so, you know, I tried Cosentyx. That one was one that they treat, I guess, for both rheumatoid arthritis and psoriasis, or PsA. It didn’t work for me. It didn’t help. Otezla, I don’t know if you’ve heard of that one. But Otezla was like the magic pill. It actually mostly cleared up my skin. And so, now when I get it, it’s only on the palms of my hands and the bottom of my feet. Once in a while my ears, but not really, not too bad.
Cheryl: 27:14
Okay, okay. Well, I’m glad you have that cleared up a bit. But I’m just sorry you have to go through that. That’s so scary.
Jennifer: 27:24
It is scary. But I try to stay optimistic and encourage people to just keep fighting, don’t give up. You’re going to find that combination. And, you know, we brought methotrexate back in with the Otezla. It seems to be going okay, but I still keep kind of going back to Actemra going, well, it helped me.
Cheryl: 27:42
Yeah, and, you know, it used to be — when I was first on my first remission med, which was Enbrel, and then then my body make antibodies to it — they used to think that if one medicine failed you, you can’t go back on it because your body permanently has this antibodies. But now the latest is that in some cases, it can be okay to go back on. So, obviously talk to your doctor about your specific case, you know, if you’re listening, and you’re interested in restarting an old medication, but it is something that is done sometimes. So, I’m just gently, arthritis-friendly finger-crossing for you. I mean, I’m just wondering how emotionally, like, how did you cope with all these ups and downs? That’s a big question.
Jennifer: 28:29
Well, so in the beginning, it was really hard, because I think a lot of the people in my circle didn’t really understand what was going on. And sometimes people think you’re just a hypochondriac, or you’re just having aches and pains. You’re young, there’s nothing wrong with you. Because there’s so many people out there that don’t realize you can have arthritis and all kinds of different arthritis’ at any age.
Cheryl: 28:57
Yeah. Yeah.
Jennifer: 28:59
And so, the way I was treated and how many friendships I lost, that was painful. But somehow, I still found amazing people. And I think that’s what kept me going. And that’s kind of why I created my little corner of the space on social media was to support other people, because I don’t want people to feel alone. And I want to feel encouraged and know that, you know, sometimes it’s our mindset. We can choose to keep fighting and find people that understand us.
Cheryl: 29:39
Totally, and it’s called My Spoonie Sisters, right.
Jennifer: 29:43
It is My Spoonie Sisters.
Cheryl: 29:45
I love that. Can you explain what a spoonie is to somebody listening who might not know?
Jennifer: 29:49
Yeah. So, you know, there’s that famous blogger, Christine Miserandino. Amazing. I don’t even know how many years ago she wrote this, but —
Cheryl: 29:58
She was at least 15.
Jennifer: 30:00
Yeah, she was having coffee one day with a friend. Or maybe it was lunch, I don’t even remember. And she was trying to explain her lupus and she just started grabbing spoons. And she explained, this is my energy. And my energy might not be the same as yours. And I think that’s genius. And so, when I don’t know how to explain it to people, I’ll grab plastic spoons and say, “Okay, what was the first thing you did today? Okay, here’s your first spoon,” and so on. And I think that was, you know, she, I’m so glad she did that.
Cheryl: 30:36
Yeah, and spoonie has come to me, and in the community online of people with chronic illness has come to me, and somebody who has a chronic illness, you know, any chronic illness, whether it’s multiple sclerosis. Now, you know, long COVID, Ehlers Danlos Syndrome, rheumatoid arthritis, anything. It’s like a way to signify, hey, this is like a little community, you know, that get’s that. That understands what it means to have to, you know, think of your energy in all your life decisions, right. How much spoons will this cost me? How much emotional spoons? How much physical spoons? How much mental spoons? You know, it’s a lot to think about all the time.
Jennifer: 31:17
It’s different every day. How much energy I have today, how many spoons I have on hand; it’s not going to be the same as tomorrow. Maybe I didn’t sleep very good tonight. You know, maybe it was an injection night, and my body just needs a little bit of time to recuperate, you just never know. And yeah, it’s a great way of explaining to people what we go through.
Cheryl: 31:39
Absolutely. And, you know, one of the things we had talked about a little bit before recording is that you love sharing about how to come to a place where you embrace your new normal, or kind of how to adjust to your new normal. And that’s one of my favorite things to talk about, too, right/ So, I’m sure when you were 32, or 30, or 28, you had kind of a plan for your life or a vision for how it might go and getting a diagnosis like maybe lupus, maybe RA, maybe something else slash eventually actually RA, can really feel like, thwarts that. And what are some, just what are your thoughts on how you adjusted to the new normal and how others can adjust with less — I don’t want to say less, I suppose, discomfort, because discomfort is part of life. But, you know, the less discomfort the better in those initial days, I think.
Jennifer: 32:34
Yeah, I definitely would say, number one, be honest with everyone around you. And that means all your family, your children. And of course, there’s different levels and ways of explaining it to your children. How I would talk to a five-year-old is not the same way I’m going to talk to an 18-year-old. And at the time, my children were 12, 13, and 14. Now I have these young adults that they kind of got to watch what I went through. And I had to figure out how to explain it to them.
Cheryl: 33:06
Yeah, those are, those are really unique ages. I think there’s a lot of story books out there. Like, I know Mariah, who’s been on the podcast before from Mama’s Facing Forward has some great ideas. But there’s like, for little kids, like, “Mommy hurts today. Or, like, why does this hurt or that hurt?” But for preteen and teenagers, yeah, I guess, I would love to hear more about how you explained it to them. Did you just kind of sit them down or —?
Jennifer: 33:32
You know, I was totally, completely honest with them. Because it was obvious to them that something was not right. And we look back on it. And we kind of laugh now because I was honest, but they understand it better now.
Cheryl: 33:49
Oh, yeah.
Jennifer: 33:50
And at the time, they almost would joke around about it. We went to the Portland Zoo one time. And I think they were probably late junior high, you know, early high school years. And I have this funny picture. I mean, it’s funny to me looking back on it. I was having a really bad pain day. And I was struggling to keep up. But I was limping really bad behind the rest of the family walking around the zoo. And finally, my husband was like, that’s it. There’s got to be a wheelchair here somewhere. And he got a wheelchair. And I’ve got all these pictures of the kids pushing me around and they made it into a game. They thought it was hilarious. Let’s make fun of her a little bit. And they would like, get me all ready, and pushed me. And pushed me towards a hill.
Cheryl: 34:41
Teenagers do be like that.
Jennifer: 34:43
Oh, yeah. And then, they’d get all excited and run up and grab me and pull me back. You know, to them, it was a way of lightening up the mood because they didn’t really — they worried. They could not help me and kids, they want to help their parents. They don’t want to see you in pain.
Cheryl: 35:01
Right. Yeah, I can totally see that. Like, and I think one of the things I’ve heard from others and I’ve experienced a little myself is that it can be hard to explain fluctuations, right? It’d be one thing if Mom needs a wheelchair every single day, then you could kind of wrap your head around that, like, this is what she needs. But to say today, she does tomorrow, she might not. And she might not for a week or a year, and then she might need it again. And then, that kind of uncertainty can be hard to wrap your head around.
Jennifer: 35:32
Well, yeah, and explaining it in a way that helps them understand but doesn’t scare them. Because that was my concern. I didn’t want them to think I was dying.
Cheryl: 35:41
Yeah. Yeah, yeah. What how do they respond, if you don’t mind me asking?
Jennifer: 35:47
They did pretty well. They would go out of their way to most of the time be really helpful. Do the dishes, vacuuming. We would, I would basically make a list for my kids, especially during the summers. And I would say, okay, these are the chores that need to be done. Each of you pick one. And it was hilarious to see what my kids would pick. Kids are funny. To see a child choose to clean toilets.
Cheryl: 36:14
It’s very random what they love. My son loves wash — anything with a spray bottle. So, spraying the counters, spraying the windows, anything with, spraying the shower, the you know, any counters, he likes to spray.
Jennifer: 36:27
Yeah, one of my daughters. She hates to fold laundry. She hates it. Oh, and to me, that’s like the easiest thing.
Cheryl: 36:33
That’s the easy one. Yeah.
Jennifer: 36:35
And towels. Forget about it. You tell her to fold towels. And she’s like, no, no, no, keep those towels away from me.
Cheryl: 36:42
That’s hilarious.
Jennifer: 36:43
Easiest thing on the planet. And she’s like, no, no, I’d rather clean the toilet.
Cheryl: 36:47
Whoa.
Jennifer: 36:48
Okay.
Cheryl: 36:49
Don’t question that. Just allow.
Jennifer: 36:53
Yeah. So, that’s kind of the things that I would do. I would just say, you know, today’s kind of a high pain day. I don’t know why; I can’t really explain it well to you. But it is. So, here’s a list of things that need to be done. Each of you pick one, please help me. Let’s get this figured out.
Cheryl: 37:08
But — oh, sorry. I just didn’t want to interject that the fact that you said, “I don’t know why. But it just is,” that’s something I see a lot of people get stuck on, because they feel like they have to justify, like, why they need help. Or I’m talking about myself, too. To overly explain it, like, well, because this happened yesterday, that today I’m more tired. It’s like, sometimes people don’t need to know the whole story. They just need to know what’s the end point. The end point is that you’re in pain and you need help. And you’re telling them not just vaguely, “I need help,” like, here’s a list of things we can do. That’s a really helpful strategy.
Jennifer: 37:45
Yeah, and it’s funny to look back on the ways that we would talk to our kids back in the day and how we don’t now. You know, now, okay, so I had shoulder surgery just over a month ago. Now, it’d be just simply, hey — my kids come to visit and they’re like, “Hey, how can I help? I know that, so what can I do for you?” So, why do I feel okay not explaining it? Because it was surgery. I’d struggle to explain it because I appear okay.
Cheryl: 38:16
Yes, that’s — you really got into like, the invisible aspect which can be so hard. And so, your number one tip for embracing a new normal is to be honest with everyone around you with what you need. I love that. And any others? Any other things that have helped you embrace your new normal or help others in the Spoonie Sisters community?
Jennifer: 38:39
I definitely am really into trying things. And so, I started doing these fun videos over on my other account, where I called them Perfect Pairings Monday, and every Monday I was trying to show a new thing that I found that was helping me. And I’ve kind of taken a break from them right now. Especially because I can’t lift. So, yeah, I’ll come back when I can. But I love to share things like, oh, gosh, why is my mind blanking on this one?
Cheryl: 39:18
Like life hack type things?
Jennifer: 39:19
My can opener. Why can I think of my can?
Cheryl: 39:24
Oh, I have a whole video of bloopers of me calling my can opener a jar opener, like, 16 times before I can remember to call it a can opener.
Jennifer: 39:35
I’m glad I’m not the only one. It’s a Kitchen Mama.
Cheryl: 39:38
Oh, Kitchen Mama. Yeah, that’s the one I love.
Jennifer: 39:40
I love Kitchen Mama. And so, I have all kinds of little videos I’ve made sharing my Kitchen Mama. And so, I’ve got all these kitchen gadgets and things I use to rub on my fingers or my Grace & Able compression gloves, you know, all those things. And I think once you find some thing, share the heck out of it, because people want to know. And that’s what I love about our community, is we’re all willing to just say, “Hey, this helped me for this thing. This is what you’re struggling with. Go get it. Maybe I can find you a coupon code. Here you go.”
Cheryl: 40:16
Yeah. But that’s part of embracing the new normal is saying, “Hey, I might have to do things differently now. And I’m not going to, I’m going to commit to saying, this is my life. And I’m leaning into it,” as opposed to thinking, “Oh, it’s so depressing. I’m only 40. Or I’m only 30. And I have to use a jar opener. Or I’m only 20.” And if that’s where you’re at emotionally, like, I just want to validate that that’s a phase a lot of people go through. But it can be really empowering to say, no, I’m not going to let this ableist culture make me think that I’m less than because I am using these compression gloves or using this, you know, gadget. Like, and that was one of the really surprising things to me when I started sharing my life hacks. I was doing it just because like, honestly, from a content perspective, it felt like the low hanging fruit. Like, the easiest things to demonstrate, right, in a visual medium is things that you can see. Like, here are gloves, I put them on my hands, as opposed to what I really love talking about the most is the mental health and the emotional coping aspect, but that’s hardest to see. Because you can’t see it. It’s in your, you know, it’s in your mind. So, but I was floored at the response, like, “Oh, you look like you’re like not ashamed of using them?” And I’m like, yes, because I’m not. And they’re like, “Wait, how did you get there?” You know, like, did you ever I’m curious for you, did you ever have shame or embarrassment around using them? Or are you kind of no shame like me?
Jennifer: 41:38
I have no shame. I’m like, you know what, you take me as I am. I’m a little bit crazy fun, and you just take it or leave it. And if you don’t like it, walk away. I’m not the person for you. I’m not the account for you. But, you know, I also, I, you know, talking about leaning in, I lean in hard to that mindset. And so, people might see me constantly posting about mindset, because it is crucial that we pay attention to it. And that we take care of it because it is so easy to just say, you know what? It’s raining today. My joints hurt. My favorite kitchen tool, my Kitchen Mama broke today for whatever reason. And now I have order a new one. My kid threw it on the floor. It’s easy to take all those things, and just say, you know what, I’m staying in bed today. And we really have to focus on that mindset of like, we have so much to offer just as we are. We are enough just as we are. I don’t need to impress anyone. I don’t need to look a hundred percent. It’s okay.
Cheryl: 42:46
Did you ever, out of curiosity, go to therapy to help with all this? Or did you — how did you become mentally strong? I went to therapy, and I had a really strong foundation in my childhood and parents, and stuff.
Jennifer: 42:59
I did I did therapy before I was diagnosed for anxiety because I’ve had anxiety my whole life. I never did — I never did a kind of therapy or counseling during my chronic illness journey. I think I just really lucked out with great people in my life. And once I finally joined this whole Instagram world, I feel so lucky that I found all the people that I did, because there’s so many of us; we have such a huge community of amazing people.
Cheryl: 43:34
Yeah, yeah, that has been a huge blessing for me, too, as the social media community. I really didn’t dive deep into it until 2020 in the pandemic, you know. I was sharing things occasionally I started but I started Arthritis Life as what I envisioned as primarily a YouTube channel in 2019. And with maybe an associated Instagram and Facebook just to kind of promote what I was doing on YouTube, you know. And then it was like, well, wait a minute now everything’s on social media, everything’s, you know, and I just found the community. It was a little more back and forth on Instagram, as opposed to YouTube, even though I still do. By the way, all these recordings, I should say — I keep forgetting to say this on the podcast — that these are all recorded to be put on YouTube as well on the Arthritis Life YouTube channel. But speaking of social media, there’s one more thing I want to ask you about before we get to the rapid-fire questions. But you and I both, really, I think, seem to love using a humor as like either a educational tool or a coping tool. Like, it’s one of the — I actually want to do like a whole podcast and panel discussion maybe sometime in the future about just about humor and the role of humor.
Jennifer: 44:42
I would love that.
Cheryl: 44:43
Yeah, I think you and, what’s her name? She’s Autoimmune Adventures, I think. She’s so freaking hilarious.
Jennifer: 44:51
Laura.
Cheryl: 44:52
Laura. Yeah, yeah.
Jennifer: 44:53
I love her. She’s hilarious.
Cheryl: 44:56
Everything she does cracks me up. Okay, so what, how has humor helped you? Or tell me about your experiences being hilarious on social media?
Jennifer: 45:08
I think it goes a little bit with that mindset, you know, on those days, I mean, especially now that I have young adult, out of the house kids, a husband at work, I don’t have a day job anymore since we moved. So, now I have all this freedom. Freedom to lay in bed; I can feel sorry for myself if I want to. So, instead, I choose to get up and make something funny, because there’s other people that are feeling the way that we are. And I want to make them laugh, just like others make me laugh. And so, I’m gonna dance like an idiot. I want to think of all these funny things. And sometimes I go into this total pit of I can’t think of anything funny right now. And that’s okay. That’s okay. It’ll come back when it does and then it always does. I don’t know if I answered your question, though.
Cheryl: 45:57
No, what it sounds like, you’ve touched initially, you tied it in perfectly. I didn’t even think about this. Humor is part of that mindset. I know that there’s this great quote by Viktor Frankl that he survived the concentration camps. He wrote a great book called ‘Man’s Search for Meaning’, which I’ll put that in the show notes. But he said like, humor gives the soul a sense of aloofness over — like, I’m butchering this quote, but it was something like, humor allows you to get, to transcend and get a sense of aloofness and an above perspective on what you’re facing, you know. And he says humor was one of the souls weapons for self-preservation. I’m going to find this quote. Yeah, of the souls weapons, of self-preserving… I think that I’m pretty sure that was the phrase here. Okay. Oh, my gosh. Good job memory. It’s weird what stays on there with a brain fog. “Humor was another of the souls weapons in the fight for self-preservation.” I mean, isn’t that beautiful?
Jennifer: 47:00
It is perfect.
Cheryl: 47:01
Yeah, it makes you — he said something else earlier in the book about aloofness, like, it gives you a sense of like — if you can make fun of something, you’re not in it anymore. You’re looking at it like what they would call in Acceptance and Commitment Therapy, they would call it like, the observing self. Like, there’s the self that’s like you’re the main character in your life, and you’re living your life. And then, there’s the observing self, which is making sense of what they see that the person is going through, right. And so, to be funny about a situation, you have to take a step back from it. And that in and of itself is like a, what they would call, again, in Acceptance and Commitment Therapy or ACT which is the therapeutic technique I find the most helpful, is a cognitive distancing technique or causative diffusion technique. So, yeah, I think you’ve definitely answered that. To me, that’s what that, when we talk about it being helping with a mindset. And then, and then using it as a social tool. So, you’re not just doing it for yourself, but you’re doing it — and that’s the big motivation for me, too. Making others laugh, making others feel less alone, you know?
Jennifer: 48:04
Yeah. Because, you know, we’re going through enough as it is. We don’t, you don’t need to feel any worse.
Cheryl: 48:10
Oh, a thousand percent. Yeah. And I do think, I do want — this is something that we’ll do a separate panel talk on humor, because one of the only times I feel really, really bad about a negative comment on social media is when it’s usually on a video that I’ve made. Usually, the only negative comments I get that actually bother me are from other people who have the same diagnosis and just aren’t finding what I’m saying either helpful, or they feel like I’m making light of the situation, like saying, “Well, it’s fine that you have RA and you’re able to dance around and point at things and be silly, but I can’t,” you know, “You don’t know what it’s like for me,” you know. And that kind of can put me — first of all, I feel empathetic, and I feel sad for that person. Then I feel defensive for myself. Well, you don’t know what it was like, I couldn’t always do this. So, maybe in two hours, I’m passed out on the couch because I’m so fatigued, but I’m able to do this. So, do you ever have those?
Jennifer: 49:06
Yeah. Well, I think that’s such a dangerous situation for people to start comparing.
Cheryl: 49:11
Yeah.
Jennifer: 49:13
Because we’re all in it. We’re all in it. And we’re all struggling. And what today looks like, tomorrow night might not look like. Although maybe, this person, maybe they’re wheelchair bound. And so, they’re, they’re not able to think outside the box. I’ve met people that can, you know. They’re still, they’re in a wheelchair and they’re still having fun, and they’re still rocking it out. It constantly goes back to that mindset. Do you want to choose to sit in that pity for yourself? Or do you want to find a way to get outside the box, have some fun, make some friends, and do some silly? We need more silly.
Cheryl: 49:57
We do need more silliness and I get — and that’s yours and my personality type. Other people might — or I don’t. I don’t know you that well, but so, I should say, but there is a subset of people, right, who that is meaningful for us. For someone else, that might not be meaningful, you know. For them, they may find that focusing on the serious or the sad parts is a form of advocacy for them to say, like, “Hey, this is not just arthritis,” or, “Just because, you know, 80% of people do well with a modern meds, there’s that 20% that don’t do well, and like, we deserve our voice to be heard, too.” And I think that’s all valid. It’s just, it’s hard. Like, I’m a people pleaser, like maybe you’re not quite as much because you were saying earlier that you kind of didn’t worry about that people think. That’s taken me a long time to not be, to not worry so much what other people think and want to make everyone happy. Are you — do you struggle with that, too? Or are you a little bit more —
Jennifer: 50:47
Oh, I do.
Cheryl: 50:48
Oh, okay.
Jennifer: 50:49
Like, I try really hard to constantly remind myself to not care what people think. And there’s times I let it creep in. I mean, we all can’t help it.
Cheryl: 50:58
It’s true. We’re social animals.
Jennifer: 51:00
You gotta try to grow some thick skin. But sometimes, it’s hard to do. Especially there are those comments that every once in a while, you know, someone looks at something that you’re doing, and they’re like, “You’re not really sick. How are you doing that?”
Cheryl: 51:13
Yeah, yeah, “You must not really have it.” Oh, well, this, okay. We’ll save the rest of that analysis for the humor panel. I’m so excited. ‘Cause I’ve been wanting to do it for forever now. I’m going to manifest it. No, I’m going to make it happen through my own hard work. So, I’m okay. Rapid-fire. What are your best words of wisdom for newly diagnosed people?
Jennifer: 51:35
Okay. So, I actually have this written down, because I just feel like I have to constantly remind myself and this to others. So, I say this a lot. But when things feel out of control and at their worst, you matter. You are enough, and you need to be careful not to mourn the life you once had. Because this life that we have, is still so important. And you still have so much to offer. And so, your life is worth living and thriving, it just looks a little different. And that different is what’s going to help someone else. So, I always go back to the same thing. Lik,e use what you’re going through to help other people. Don’t sit and self-pity, it’s not worth it. It doesn’t feel good, it’s not going to help you. It’s not gonna help anyone else.
Cheryl: 52:24
Or you can put a timer on. That’s why I recommend. So, I’m gonna give myself five minutes to wallow in this because it sucks. And then, I can kind of then say, okay, and the next five minutes after that, what can I still do that’s meaningful and important to me,
Jennifer: 52:37
You know, and maybe today was a really bad RA day. And so, maybe I need to allow myself to wallow in that for the day. And my husband’s really good at saying like, “Okay, time is up, you gotta get back up.” And I think that’s what kind of helps me, too, is he encourages me.
Cheryl: 52:54
I want to talk to you more about him, but I’m trying to be good about time management.
Jennifer: 52:59
I know, I’m sorry.
Cheryl: 53:00
No, this is great.
Jennifer: 53:01
Two really chatty people.
Cheryl: 53:03
I know. And well, I have another idea of like, maybe like a spouse panel, too. Because, to see like, I know a lot of spouses struggle to know what to do and I think we’re all so different. But there are some themes.
Jennifer: 53:17
That can be a dangerous one. My husband, he has no filter.
Cheryl: 53:21
Uh-oh. Don’t get him with me because I, yeah, I don’t either. What’s your —
Jennifer: 53:26
I keep telling him he needs its own Tik Tok just to entertain people.
Cheryl: 53:31
Oh, sorry. I just clapped. That’s gonna make a big noise in the audio. That’s okay. No, I’m recording this on separate tracks. So, I’ll use your audio from that. What is your favorite arthritis gadget or tool in your toolbox? Is it the Kitchen Mama?
Jennifer: 53:43
It really is. I mean, I’m torn because Grace & Able, those gloves feel so good.
Cheryl: 53:50
We’ll do both.
Jennifer: 53:52
Yeah. Well, and then, BeWell. I don’t know if you’re familiar with BeWell, but she’s got some amazing stuff, too. I mean, I know it’s geared more towards like Crohn’s and Colitis and all that kind of stuff. But she has those great little pill holders that I take with me everywhere. And I could go on. There’s so many amazing companies out there.
Cheryl: 54:10
Yeah, it’s great to support the small creaters like the Grace & Able and BeWell. Do you have a favorite book or movie or show you’ve been digging recently?
Jennifer: 54:24
Okay, so my favorite show or movie, actually, we’ll go with my favorite movie. In our family, at least for my husband and I, is Blended. And that partially is because we are a blended family. So, it’s funny to me because my kids are my kids. But when I tell people that my kids are 22, 23, and 24. I get those big large eyes going, “You had a baby every year?” No honey, I had one of them. Someone else did all the hard work for me and so, I’m lucky in that. And so, we love the movie Blended. It’s hilarious. It’s funny. The guy dancing on there, it’s so much fun. If you haven’t seen the movie —
Cheryl: 55:05
I haven’t seen it. Oh, I can’t wait.
Jennifer: 55:07
Oh, oh my gosh, you’re in for a treat. There’s this big, strong, muscular guy doing all the dancing. Picture kind of like, watching Dwayne The Rock Johnson.
Cheryl: 55:18
Oh, yeah.
Jennifer: 55:19
And pec popping?
Cheryl: 55:21
Oh, my gosh.
Jennifer: 55:22
Picture kind of that. But through a whole movie with — oh, gosh.
Cheryl: 55:27
Oh, Adam Sandler, and Drew Barrymore. Yeah. Yeah.
Jennifer: 55:31
The two of them together are always —
Cheryl: 55:33
They’re goals, they’re goals. Oh, that’s awesome. I love it. And do you have a favorite mantra or inspirational saying?
Jennifer: 55:44
Wow. Probably the one thing I always say to everyone is, “Don’t forget your spoon.” Always, always save that one spoon for something that day for yourself. There’s something you might need to do to just take care of your own, take care of you. So, don’t forget your spoon.
Cheryl: 56:06
I love that. I’m reading a memoir called ‘Crying in H Mart’. I don’t know if you’ve heard of that. It’s by the singer, Michelle, of Japanese Breakfast, the band. And she, her mom was Korean. And she, her mom said, “Always save 10% of you for yourself.” She was talking about like, her marriage. But I was like, that’s really interesting. Because I’m the kind of person that wants to spend all my spoons on everyone else. But what I’ve learned with chronic illness that’s the biggest thing it’s taught me is the self-care, for sure. And that I’m worth saving that spoon for, right. You have to have that self-love, too. Sorry. What’s bringing you joy right now? This is not very rapid. That’s how I am.
Jennifer: 56:47
Okay, so the biggest joy is actually I have a almost two-year-old grandson.
Cheryl: 56:52
Oh, my gosh!
Jennifer: 56:54
I FaceTime him and my daughter almost every single day.
Cheryl: 56:58
Oh, two is such a fun year.
Jennifer: 57:01
Yeah.
Cheryl: 57:02
I mean, it’s exhausting when it’s your own.
Jennifer: 57:05
Oh, yeah. And you know, every single night — like, I’ll use last night as an example. He gets his Spiderman stuffy. And then, he’s got his — he’s really into monkeys. And so, he’s got his monkey. And what was the other thing he had? He was struggling with how to say it properly. and it really sounds like an inappropriate word. I can’t think of what it was.
Cheryl: 57:28
I can’t think either.
Jennifer: 57:30
It doesn’t matter. But anyway, so he has all this stuff and he’s like, “Okay, song, Song. I want a song.” And so, we have this routine of usually three songs every day. Kind of teach him to join in and sing with me. And so, that’s really, that’s my biggest story. My grandson.
Cheryl: 57:46
That’s so sweet. And then, last one but it’s it’s a biggie, what does it mean for you to live a good life and thrive with rheumatic disease?
Jennifer: 58:00
It means for me to not to give up. Because in the beginning, I really did. I pictured that I was going to be a crippled person, just not living what I envisioned as a fulfilling life. And I now understand that crippled or not, it doesn’t matter. I can still have a wonderful life. We all can. We have so much to offer. It’s just a matter of figuring out what it is that we are good at and can serve a purpose to help others.
Cheryl: 58:38
Love it. I love it. I really resonate with that. And thank you so much. This has been so great. It went by so fast. I was not — I was expecting that. I could tell we were just on the same vibes, wavelength, but where can people find you online? I will put all your links in the show notes, but.
Jennifer: 58:57
Okay, yeah, I mean the two best — sorry I’m hitting my microphone. The two best places to find me is my main account that I’m always on, is @Gracefully_Jen, and that’s where you’re gonna find a lot of really ridiculous stuff for me. Sometimes, there is quite a lot of ridiculous. And then, of course, there’s @My_Spoonie_Sisters, and that is also a podcast and it’s kind of a community of crazy fun. We make reels where we throw spoons to each other and dance and laugh. We have little chat groups of support for each other. We sent happy mail to each other. Those are the two best places to find me. I am on Facebook. I just really don’t get on there a lot. I don’t enjoy it.
Cheryl: 59:46
Yeah. Yeah, everyone finds the right platform for them. You know, some love Twitter. I’m on all of them. But I do spend the most time on Instagram these days, sometimes.
Jennifer: 59:56
And I do have YouTube. I think I have a whole three followers.
Cheryl: 59:59
Oh, well, we can triple that. It’s, we can follow you.
Jennifer: 1:00:03
I really need to get better about posting everything over on there.
Cheryl: 1:00:06
I know, I’m the same. It’s very sporadic, but the podcasts I am posting all along interviews on there, it’s just the reels, I don’t know what — it’s because you have to be careful with the audio rights. So, Tik Tok has rights to a lot of the same songs that reels has, but YouTube is much more restricted. So, you can’t, you have to like make sure that you have the rights to the song, or that YouTube has the rights to the songs. That’s something I live in constant fear of, like, breaking some rules around audio copyrights. But anyway, on that note, thank you so much. It’s really, I’m sure there are people listening who just are resonating with your story. And there are a lot of people especially who have had multiple experiences with medications either not working or having reactions or having rare side effects that they feel so alone, because sometimes on social media, it can feel like everyone else just had this blissful, easy experience, kind of like I did when I first went to Enbrel, and I was like, this is great. It just works. You know, like, sulfasalazine. Oh, I had an upset tummy. Okay, well, then try the next one, worked amazing. And it can feel really isolating. Like, first, you’re isolated from your friends because they don’t have RA. And then, you’re isolated from the RA community because it seems like they’re all doing fine on the meds and you’re not. So, I know that people listening are going to really resonate, those who’ve been through some of what you’ve been through. And I appreciate your positive attitude and mindset after everything you’ve been through. It was freaking a lot.
Jennifer: 1:01:37
It’s crazy. I can’t, I couldn’t even make it up if I tried. It’s so crazy.
Cheryl: 1:01:41
No, it would be like if it was in a novel. We’d be like, that’s not realistic. All those things can happen to one person.
Jennifer: 1:01:48
Yeah, absolutely.
Cheryl: 1:01:49
Oh, well, thank you. I hope you all listening, go follow Jenni because she is so fun. And if you resonate, you know, everyone’s different, but I hope that you enjoy her content as much as I do. And thank you so much for your time.
Jennifer: 1:02:03
Yeah, thank you. Absolutely. It was so much fun. And thank you for having me.
Cheryl: 1:02:07
All right. We’ll talk soon. Bye-bye for now.
Jennifer: 1:02:09
All right. Bye.
