Telling your Crohn’s disease or ulcerative colitis story is powerful. It can be freeing but it can also come with some unexpected side effects.
Welcome back Rosanne Mottola, who originally intended to talk over receiving her second dose of the Pfizer BioNtech COVID-19 vaccine. She told her ulcerative colitis story and about receiving her first dose on Episode 87, “COVID-19 Vaccination With UC Patient Rosanne Mottola.” She gives her experience on her second dose, how it affected her, and what her family’s plans are now that she’s vaccinated.
Additionally, Rosanne had another part of her journey that she wanted to share. She listened to her first About IBD episode (something a lot of guests don’t actually do), as did her family. Reflecting on her ulcerative colitis journey brought things back in a fresh way. She tells me how revisiting some parts of her life in this way was both troubling and healing. It’s an important part of the disease journey, especially for those who tell their story publicly, that doesn’t often get discussed.
Concepts discussed on this episode:
- Clostridium Difficile Infection With Inflammatory Bowel Disease
- Dependent Coverage for Young Adults
- CDC: COVID Vaccine Doses Can Be Spaced Up to 6 Weeks Apart
- You Got Your COVID-19 Vaccine. Now What?
- CDC: Fully Vaccinated People Don’t Need to Quarantine After COVID-19 Exposure
- Yes, Social Distancing Does Lower Your Chance of Contracting COVID-19
- Here’s Why Your Symptoms May Be Worse After Your Second COVID-19 Shot
- 5 Ways To Prepare for Your COVID-19 Vaccination
[Music: IBD Dance Party]
Amber Tresca 0:05
I’m Amber Tresca. And this is About IBD. It’s my mission to educate people living with Crohn’s disease or ulcerative colitis about their disease and to bring awareness to the patient journey.
Welcome to Episode 90.
I’m excited to welcome back Rosanne Mottola, who you last heard from on Episode 87. On that episode she told her story of living with mild to moderate ulcerative colitis, which unfortunately led to some harrowing complications, and about her experience in receiving the first dose of the Pfizer BioNtech COVID-19 vaccine.
On this episode, she’s going to tell you what it was like for her to receive her second dose, which was 3 weeks after the first. She relates her experience on what the effects were, how long they lasted, and gives some advice for those of us who haven’t started the vaccination process yet.
We also get into a topic that is a first for About IBD. Rosanne tells me what it was like for her to create Episode 87 with me and the effect it had on her and her family. She will tell you why one piece of her story became an important part of the retelling, why it made her blood boil, and the lesson it holds for all of us.
Amber Tresca 1:21
Roseanne, thank you so much for coming back and telling me about what happened with your second dose of the COVID-19 vaccine. You got your first dose: remind me what the date was on your first dose.
Rosanne Mottola 1:34
I got my first dose on January 4, Monday, January 4, right after the new year and got my second dose on Monday, January 25.
Amber Tresca 1:47
Okay, great. And they set up your appointment for your second dose when you got your first one. Right.
Rosanne Mottola 1:53
Right. So how it worked at where I got my vaccine. When I went for my first dose, they did an intake, and they asked me my medical history. And at that point they made by appointment right there before I even got my shot for my second dose. So there was no stress involved. on my end, I had another appointment at 21 days after my first dose, I got the Pfizer vaccine. So that was the recommended timetable. And I had my confirmation in my hand before I even got the needle in my arm.
Amber Tresca 2:30
That’s great. Yeah. Because for me not even being anywhere near to being vaccinated, that has already given me a little bit of, of anxiety, thinking about the idea that the second dose and we know a little bit more now about that they could probably be okay spacing them out a little longer. But we should be getting that second appointment set up before we leave the first one or as you said, before you even get the first shot, you’re already scheduling that second dose.
Rosanne Mottola 2:54
Right. And I know that in terms of shortages and things of that nature, any vaccination appointments that have been postponed or canceled at this point, were first vaccines, and they have rescheduled those first before moving on. But they have enough second vaccine at this point on hands. So to make sure that you can get that second dose in a timely manner.
Amber Tresca 3:24
Right. Yeah, that makes more sense. So tell me we talked after your first dose, and you did really well, afterward did that continue?
Rosanne Mottola 3:34
Yeah. So after my second dose, I definitely felt it a little bit more. Nothing serious. But I had some site pain for the first day. And then on the second day, I had some some relatively mild body aches, took a little bit of Tylenol and put a heating pad on while I sat on the couch. And that went away in 18 hours or so. And I had a little bit of a lingering headache for one to two days. Nothing that I would say was serious.
Glad I had a little bit of a response. Because in my head, I say it’s maybe I had some kind of an immune response. And it’s actually working for me. And my body is doing what it’s supposed to be doing. I never had any kind of fever. I’ve heard anecdotally of some folks that had some fever after the second shot. But all in all, if it protects me this was a very mild price to pay.
Amber Tresca 4:32
Yeah, and I’ve heard, you know, again, anecdotally and hopefully there will be some data some studies that come out soon about, you know how people feel after the second but does seem to be all over the map. There are people that say they felt almost nothing and then there are people that are basically like yeah, I kind of spent a day you know, in bed maybe even.
Rosanne Mottola 4:53
Right, I worked remotely that day. I don’t do anything strenuous for my job so I can tell I would say if if you are, you know, doing some kind of a strenuous job that you maybe want to take a day or so I was able to do my job and public relations for my computer without any issues. And I personally was okay after the second dose.
Amber Tresca 5:18
So let me ask you this, because I listened to a different podcast in in between the last time we talked in this time, where it was talking about that the husband got vaccinated because he’s a physician. And the wife was not vaccinated because she’s just like, a regular, healthy person. And they were trying to, like work that out. Is that the situation in your family, too?
Rosanne Mottola 5:43
Yeah. So, you know, the way we look at it is that whenever we can get vaccinated, it’s better for both of us. So, you know, my being protected will protect my husband and my kids, to a certain extent, because I’m one less person that can, you know, potentially get very sick and pass it along to them. I know that we don’t know for sure whether or not if you’re vaccinated, you can transmit COVID to others, but they assume that the viral load would be a lot lower, and the risk of transmission would be lower.
Hopefully, though, there’ll be some studies done soon on Pfizer and Moderna vaccines to confirm that, but that is what they believe anyway. So you know, being able to get vaccinated, I keep telling my family, the more of us that that get done, the better it is for our pod and everybody that we come in contact with even for a short amount of time.
Amber Tresca 6:50
Right, because didn’t also some of your elderly family members get vaccinated as well?
Rosanne Mottola 6:55
Yeah. So I have 2 90-something year old grandmothers who, finally were able to get their doses, and it has been a huge relief, both of them go for their second doses this week. So just knowing that they have an extra layer of protection makes us all feel better.
Amber Tresca 7:17
On the one hand, I’m seeing folks who are saying that we still need to do all the things that we’ve been doing all along, even after vaccination, which I think is right. But I have to say, I’m seeing some people who are fully vaccinated, maybe kind of doing some stuff that they weren’t doing before. Um, so do you have any thoughts about that?
Rosanne Mottola 7:40
So I think, you know, for the interim, for the next few months, we’re gonna keep doing what we’re doing, at the very least, you know, maybe I will be the one that goes to the supermarket more or, or runs into a store for us, but what my kids and then going to school, I still want to be as safe as possible, I’m going to keep wearing my mask outside my home, I’m going to keep on my hand hygiene.
And we’re really not going to be gathering as a group with anyone until this all calms down. At the very least, or if the rates go down substantially, then we might open it up a little bit more. But until until this country is is better under control, I think that we’re going to just stay the course in terms of, of what we’re doing.
Amber Tresca 8:43
Yeah, I think that makes sense. I was saying to my husband that I almost feel like it’s like a county by county situation, and that in the summer, if we decide we want to go somewhere, we might need to look at that county and see what their current testing rates are at and then make our decisions based on that.
Rosanne Mottola 9:03
Right. And it’s it’s hard to say what’s what’s the right approach and the wrong approach. But, you know, in New York, we had an awful awful spring last year. But then by the summer, our rates were super low, super low, less than a percent that 1% in some areas. So we did do a little bit of outdoor activities.
I signed my son up for for baseball, and we rented a house by the beach. We weren’t with anyone. We just went back and forth to the beach, but we opened it up a little bit for those days. But then the rates went back up around the fall and schools reopening and the holidays. So then we locked it back down again. Again, it’s hard to say whether or not what we did was right or wrong, but for our mental health, we thought it was important.
Amber Tresca 9:56
Yeah, and every family has to do what they think is right. My experience was very similar to yours in Connecticut, we were at less than 1%. So we did outside things we still weren’t doing inside things. And then when the kids went back to school for me, that was the risk. And that was the risk that we felt was worth taking. So then after that, that was nothing that, that’s all the risk that we are introducing into our, into our family unit here.
Rosanne Mottola 10:26
And I personally felt when my son went back to school that it was important for us to lock it down a little more for others, because he was going to be in a classroom every day with other students and a teacher. So we figure with him being exposed, potentially, that it was better for everyone around us that we locked it down a little bit more, right.
[Music: About IBD Transition]
Amber Tresca 10:57
You listened to your episode. I have to tell you, that makes me laugh a little bit too, because I’ve had some people tell me that they have never listened to their episode. Which I don’t blame them. Listening to yourself is not easy. It’s not. And I have now had hundreds of hours of listening to myself. So it’s a different situation for me, I’m kind of over it.
But you were thinking a lot more about your story and about going to school. And the reason why you were in school full time. And that leading to I mean, I don’t know if it’s fair to say you can tell me whether it is or not that leading to basically a worsening of your ulcerative colitis. So let’s backtrack a little bit. And you can tell me Sure, why was it that you were in school? And why did you make the choices that you did at the time.
Rosanne Mottola 11:49
So my diagnosis happened right before I graduated college, and that was a long time coming, we spoke about that it was close to probably four years before I was officially diagnosed. And at that time, I was extremely sick. So that’s when I made the decision to go to school rather than try to take on a full time job.
And after listening to the episode, which was very difficult, by the way, where my accent come out, and I am very self conscious of it. But after listening to the episode, I realized that my decision to take on a full time courseload probably had a lot more to do with my insurance situate insurance situation than I thought. And and I’m going to preface this by saying that I am very type A and there’s a good chance that I would have tried to have taken on a full course load regardless. But my decision was definitely guided by the fact that I had to stay on my parent’s insurance and remain a full time student to do so if I was not working.
So that was something that I had a hard time with after listening to the episode because I thought that perhaps my body would not have broken down like it did if I wasn’t forcing myself to commute to school, four times a week for classes in the middle of the night. And I would not have potentially picked up pneumonia and I would not have potentially gotten a staph infection from the hospital after my pneumonia. And I wouldn’t have potentially gotten my C diff from the antibiotics I was put on from the pneumonia.
It’s infuriating it it sort of makes my blood boil to think about it that because I was so ill that I couldn’t work. And I was forced to take a full time course load to stay on an insurance so that my family didn’t go bankrupt. It it. It just is a story that should have never happened in this country and should not happen to anyone. I’m glad that the ACA has provided some of those protections so that people don’t have to make that excruciating decision like I did.
Amber Tresca 14:27
Something that has happened to me, and I’m wondering if this is what you’re experiencing right now. I’m very aware that when I ask people to come on my show and tell their story that they are reliving some of the worst things that have happened to them, and that they’re putting that in my hands. And that is a great responsibility. And I take it very seriously.
In my own writing and in telling my own story, sometimes when you’re in the middle of all of the difficult parts, you’re putting one foot in front of the other and not really being too introspective about it. But writing about it, talking about it, almost opens it up again, and makes you think about things in a different way. That’s been my experience.
And I’m wondering is, is that what happened to you after you told your story in that way? And then you listened to yourself tell it?
Rosanne Mottola 15:22
Yeah, I think so. I think that listening to myself tell the story sort of opened up a whole lot of memories that I’ve probably repressed for a while. And not only that, but you know, my family listens to the podcast, as well. And my mom actually commented that, you know, she forgot about a lot of what we went through and listening to it, you know, just makes us realize how far we’ve come in this journey and, and how dire it was at the time. But how much my life has changed since since then. And you know, that I have two healthy children and a career right now is something that we we would not have anticipated 10 years ago.
Amber Tresca 16:14
Do you think the benefit is overall positive? I imagine it was hard for your mom, too.
Rosanne Mottola 16:19
Oh, no, I think it definitely was. And I think that it’s important to look back. So you know, even just this revelation I had about the insurance situation and everything that went on in my life, because of it. It’s a lesson to learn from, it’s a reminder that we can’t go backwards, we have to go forward and we have to keep fighting for others that are just being diagnosed or really, really fighting the good fight right now.
Amber Tresca 16:51
Roseanne, do you have any advice for anyone who is expected to get vaccinated in the next several weeks?
Rosanne Mottola 16:57
I would just say, to keep at it. I know that it’s frustrating right now with the scheduling of vaccine appointments, and everybody has sort of their own system in place. And I am encouraged though, that things are opening up a little bit more. I know in New York, just on Friday, the governor announced that that immune compromised, folks will be able to start getting vaccinated on the 15th of February, February 15. They’ll be able to start vaccinating, immune compromised, folks, anybody on immune compromising medications. So I know that includes a lot of IBD patients in New York City, in New York State. And hopefully, little by little we can protect ourselves and hopefully get beyond the worst of this pandemic.
Amber Tresca 17:58
Amber Tresca 17:59
Thank you so much for coming on the first time and telling your story. Thank you again for coming back and telling me what it was like to get that second dose. I am so glad that you are fully vaccinated at this point. It’s fantastic. And thank you for exploring a little bit what it felt like to hear your own story and to think about it in a new way.
Rosanne Mottola 18:23
Thank you so much for having me. It’s really been a great honor.
[Music: IBD Dance Party]
Amber Tresca 18:33
Hey super listener! Thanks this week to Rosanne Mottola for sharing her experiences in receiving the second dose of the COVID-19 Pfizer BoiNTech vaccine.
We know that the COVID-19 vaccines cause an immune response, which is what we want, but we also know that this response can lead to discomfort, headache, chills, fatigue, and even fever. For that reason, some folks will want to reach for an over-the-counter pain reliever or fever reducer. For IBD patients, it’s worth talking to a gastroenterologist to find out what they will recommend for pain relief. As Rosanne said, however, a day on the couch with a heating pad is a small price to pay for protecting oneself and our loved ones, and for getting the pandemic under control.
I will put links to more information in the show notes and on my Episode 90 page on AboutIBD.com.
Thanks for listening, and remember, until next time, I want you to know more about IBD.
Amber Tresca 19:53
One of our beaches here actually had quicksand.
Rosanne Mottola 19:56
Amber Tresca 19:57
Look, I have a degree in environmental science, we never studied quicksand. You think it’s a myth. Apparently it is not. [laughter]
Rosanne Mottola 20:07
In the winter. In Connecticut. [laughter]