Joanne found community and mission after her son was diagnosed with pediatric PSC over 15 years ago
Joanne’s son was diagnosed with Primary Sclerosing Cholangitis at 15, and she has walked the journey with him for over a decade and a half. In doing so, she not only advocates for him but for all PSCers in her work with PSC Partners Seeking a Cure. She talks about being a medical mom, how parents can work with schools, the importance of community and how even through the challenges and bright spots of chronic illness living, she will always take her role as mom seriously.
Transcript below.
Joanne 00:10 To be honest with you. I know there are times that I really would like to be much more involved or offer my opinions more and I can't, sometimes I do and I hear that no, that's not appreciated. So your question, have I totally given that up? Honestly and truthfully, no. I'm not sure how many people ever really, truly can. You're always a mom. Doesn't matter how old they are.
PSC Mami- Monika 00:47 Welcome to PSC Mami where we share stories at the intersection of PSC and parenthood, PSC or primary sclerosing cholangitis is an autoimmune disease where the immune system gets the wrong message to attack its own bile ducts. Over time, the inflammation can leave the bile ducts scarred and blocked, which could eventually shut down the liver, which surprise is in charge of over 300 functions in the human body. To be diagnosed with this rare, incurable, unpredictable disease can rewrite anyone's life journey including their vision and experience of parenthood. A reminder that all stories and information shared our personal experiences and options and should not be used as the basis to treat yourself or others. Please consult your personal medical team. An invitation to you. Yes, you. Whether you're a PSCer or the parent of a PSCer, or what's your story at the intersection of PSC and parenthood? Has PSC made becoming a parent impossible, more challenging, or was it in an uneventful journey? I believe that our stories are connections that we can make across geography and time, as we all figure out what PSC means to us. Every story has the power to make someone or many people feel less alone. Your story has that power. Yes, your story. Contact me to talk about the process to be interviewed. And yes, you hold control over your story and how you would like it to be shared. You can reach me by email at pscmami@gmail.com or go to our podcast website at pscmami.com. I look forward to hearing from you. Now. Let's get to today's interview. I am beyond excited to speak to someone who if you're in the PSC community you already know. Jo Ann is joining us from Davis, California and she lives there with her husband and son. Welcome Joanne.
Joanne 03:07 Hey, thank you, Monika. This is fun. I look forward to being able to talk.
PSC Mami- Monika 03:12 I'm so excited to talk to you. So can you tell us a little bit about your family's PSC journey? How did PSC come into your life?
Joanne 03:22 Actually, it was, like many people, somewhat of rocky curvy road. My son, Joe, who's my youngest son. He was diagnosed at age eight, where with juvenile rheumatoid arthritis and actually coped with that pretty well- still was able to do most of his normal soccer, skiing activities like that. And then probably two or three years later, he had been taking a nonsteroidal Aleve over the counter. And the rheumatologist did labs and found that his lab work was elevated liver functions. And so he saw gastroenterologist and the workup that was done basically showed his gallbladder was lazy, didn't empty correctly. And follow up lab work came back normal. So it was like, okay, and then over the next two years, intermittently he started having periods of fatigue, abdominal pain, and basically times that he would have severe nausea, vomiting. So if you can picture when your child comes to you and says, I can't eat birthday cake, pizza and coke at a party, because I'll throw up
PSC Mami- Monika 04:55 That's a sign!
Joanne 04:56 I know it was like awwwww, but it was intermittent and so, you know, we just kind of moved along. So when he was 15, I remember very clearly, just like, everybody remembers these key moments, or at least pieces of them. So I had taken my older son, and we were skiing. And Joe called us that evening and said that he had bloody diarrhea, and was vomiting. And I immediately came home. My first thought then was it was the chicken that I had cooked about a week before, and there was a little bit of pink in it. So I probably given him a salmonella. And I feel very bad. Like,
PSC Mami- Monika 05:42 That's some severe mom guilt right there. It's like, of course, it's our fault.
Joanne 05:47 That's right. That's absolutely right. Well, and I'm now retired, but as a nurse practitioner, and so you know, you think of these things. And so I really felt guilty that I had caused all of this, he was very, very sick and was I was lucky because it was people I worked with so I probably got in to see a gastroenterologist a little sooner. And so he was seen and worked up. And within two weeks, we did find that he had PSC and ulcerative colitis. It was very rough initially, because he was like sick as stink, lost 25 pounds or so could not go back to school, had started all kinds of medicine. And he was very symptomatic. So that was difficult. Then we had this period of what to do with school. He was sophomore, we tried to get him back to school. And luckily, my sister is a school librarian. And then she had a history of teaching special ed for years. So she's like, he needs a 504 B. Like what is A 504 B? And that allowed him because of his physical problems to be able to hopefully go back to the high school. So we worked on the where he could go back for a couple of classes, then for the rest, because he just didn't have the energy. We enrolled him in independent study. What happened though, with that he was he tried going back to school a couple, three times and just despite being able to have what I call the Get Out of Jail Free card where he could get up in the middle of class and go to the bathroom not requiring permission. He just wasn't even able to do that. Well. I think a lot of it was fear, because of urgency. And, you know, his ulcerative colitis was not controlled at that point. So he never got back into high school. Independent Study was a miracle. He then had a period of time after her high school where he was able to actually work. And he had a couple of part time jobs, one that I dearly loved. He worked part time in a retirement center. And his favorite unit was the Alzheimer's dementia unit. At that time, I had a wonderful nurse practitioner job where I worked both in the clinic in the hospital and I went to some of the retirement homes and did home visits. So I remember one day walking into this unit. And there's Joe sitting with two people at a table. He's feeding one person and he's laughing with the other one. They're telling jokes. And it was just so nice to see. That was one of his favorite jobs.
During that time, he was trying to go to community college. His brother, who is six and a half years older, was up at college in Reno and asked Joe to come live with him. That was a big turnaround in our family. So Joe moved up there and he took community college classes. He got into University of Reno. At age 25, he graduated with an accounting degree. He then took a job that I worried about as his mom, it was stressful, where he he took a job with a big four accounting firm. It was...it was what he wanted. So he lived in Las Vegas; he did that for two years and realized he couldn't cope with that. During this time. He was having a lot more pain. He has always had PSC symptoms, the fatigue, abdominal pain, terrible time with reflux. Like most PSCers, there's just a lot of difficulties: nausea, vomiting that would come on, sleep disruption oh my goodness, from, it felt like from the moment of his diagnosis, his sleep was not teenage sleep, he totally was turned around and might be out till three, four in the morning. Maybe he couldn't sleep for 24 hours. So for working in a really stressful job, that was difficult. So he moved back to the near our home Sacramento and got a job in another accounting firm. Worked there for two years. During this time, he developed severe degenerative joint disease in his jaw, how at age 27, 28, you get degenerative joint disease, I don't know. And then he also has gotten spondyloarthritis, which is a type of rheumatoid arthritis. So that just adds more back pain, neck pain, shoulder pain, joint pain. With all of those issues about 15 months ago, he had to quit his job. And he's moved back home. That was nothing a 30-year-old ever wanted to do. So we've, we've worked hard, and I think we've been successful as a family. So it's now my husband, Joe and I. And he's, we work hard to maintain privacy, independence and where I came on babe now shy sometimes I've failed, but we try hard. What's been good in this is it's allowed him the ability to he has to his fatigue is just overwhelming.
He's able to cope with that better or cope with the medical appointments, he actually has had to go through teeth extractions and braces and preparing for jaw surgery at some point. So he's been able to do that. He's been in two formal clinical trials. He really participates in a lot of other clinical trials, surveys, blood drawn, things like that. But these have been two formal ones. One was really good for us. Because involved diet changes, dramatic, what I call vegan plus. And we decided as a family, we would do it together. What happened was we really got into it. And Joe is an incredible cook, far better than me. So we've been for months now during this study, and then since then, we've been cooking together looking for recipes, figuring out, I am a superb sous chef. And it's really changed our whole patterns of eating. We almost know me and boatloads of fruit and vegetables, and are having a good time.
PSC Mami- Monika 13:19 What a gift that he's a good chef.
Joanne 13:22 He's amazing. He truly is amazing.
PSC Mami- Monika 13:26 I would also qualify in the sous chef, dishwasher washing category. So I'm impressed by people who have those skills.
Joanne 13:35 It actually has been fun. So we're moving along with it. It's all a journey.
PSC Mami- Monika 13:42 I'm very curious about your journey through this right, as a mom who's experienced...we've talked to folks whose children are young, and I'm really appreciative of them sharing their story, they're really in that, those beginning stages. And I'm curious as you think back, sounds like your journey with him started at eight not the PSC journey, but this medical journey being a medical mom, which is I've learned a whole other breed of motherhood. The medical moms who are fiercely protective of their children at a level that's just really beautiful and heartbreaking to see. At eight, what was it like for you to enter not just the medical space as a professional but the medical space as a as a parent?
Joanne 14:26 I think it was. That was a big surprise to me how much our lives were surrounded with outdoor activities and things like that, that we really loved. And so when it became bigger, this arthritis was primarily his knees, ankles, knees, feet, and it affected his ability to play soccer at affected skiing, hiking things that we really enjoyed doing. He was still able to do it to a certain degree. But then even that little bid starts where you question as a mom, he says he's too tired, or he hurts or this or that, and how much do I push him. And over the years, as I look back for, he had PSC symptoms for several years before they would come and go. And most of the time, as a mom, I pushed him, you can get out of bed. He he played the trumpet, he was in three different bands. And when he would say, I know, I can't go to that rehearsal, I just don't feel like doing this or that. And I would be just mean "get out of bed!" And retrospectively looking back, oh, I felt so guilty. Because yeah, he did feel bad. And one day, he looked at me and he goes, I don't know that you can imagine how it feels to have to stand for two hours and play the trumpet during a concert. Stab my heart. Yeah, so things like that. Were hard. When you mentioned the journey and how it felt as a medical mom, I will never forget when it was actually a friend of mine who I'd worked with for years. And she was in the GI department. And she called me in the middle of the afternoon, said, Joanna, I just want to forewarn you, I think Joe has PSC, and I remember, don't ask me how, remember this paragraph in a medical textbook. And I remembered PSC and death within 10 years. That was all I remember, I still had patients to take care of before Joe's appointment. I probably wasn't doing very well that day. But you do what you have to do. I learned that no, PSC now is not a death sentence in 10 years, but that feeling of this disease, that there is no treatment, and we don't have a cure yet. It's devastating, just devastating. For those who also get the diagnosis or have already a diagnosis of ulcerative colitis, or Crohn's, it's just a double whammy. Can you take us to that appointment? So you had this forewarning, you had to kind of have this suspicion? Or sort of, like, how would you describe the feeling once you've talked to to your friend? I? That's a good question. I think I was scared to death.
PSC Mami- Monika 17:39 You're going into the appointment, scared to death.
Joanne 17:42 Right? Right.
PSC Mami- Monika 17:43 When you're in there, what was that appointment like? What was the formal diagnosis process for you, as his mom as someone who has this medical knowledge, you know, a lot of us go into that appointment, not knowing anything.
Joanne 17:57 Right.
PSC Mami- Monika 17:58 And you sort of had this forewarning and also this little paragraph of information to work from what was that appointment like for you?
Joanne 18:05 It was difficult. I certainly didn't want to give Joe, you know he's 15, I didn't want to give him any impression of anything at all. The doctor, gastroenterologist, was excellent and saying, I don't know yet. We need to do tests and this was pre when MRCP was something that was readily available. He scheduled him within day, and that was where we were lucky because I worked at a small community hospital that really cared for the community as family, and I received excellent care. I know, for many people getting tests like this scheduled may take much longer, but it was very quick. And so he had upper endoscopy, colonoscopy, endoscopy, ERCP. All done quickly. The GI was actually much more positive and giving, you know, words of advice. And he was very clear that we don't know but, you know, we're going to just work through those. And Joe was okay with that. I think as a parent it's difficult and it's also difficult depending on the age of the child. Although, I don't know that anyone even an adult, colonoscopies and preps and ERCP and preps and being in the hospital are hard So,
PSC Mami- Monika 19:41 How did you support your teenager during that time? I'm a former high school teacher. So I know teenagers, you know that time of your life. What was that like both holding this information for you and supporting your young teenager through this process?
Joanne 19:57 I remember it being challenging. Just to try to know what to say.He was he was pretty miserable. And his whole hope was to just have his life back. So about... that piece was challenging. And I don't remember him asking me very many questions. I do know that he hated taking medicines and some of the medicine he there was some that, one he refused adamantly just wouldn't do it. Another one that he took and said, If I ever have to take it again, I may refuse. At the same time to when you were talking about supporting your teenager, I was also thinking of my older teenager, who at that point was off at college. But even with Joe's journey with the rheumatoid arthritis, it was hard for my older one, Ben, Joe also has a baby had had clubfeet. And so here's this six year old, and a baby and everybody's all interested in this baby. Probably like super curious, he had casts on both legs. So for these two kids with that far of an age separation, it was challenging. So I think as a parent, though, it was hard. I think the other thing during that time, that was incredibly difficult for both of us. I didn't even realize until I was out walking one day, and I met up with Joe's best friend, the mother. And she said to me, is he still contagious? And then I realized, that's why her son has not been to our house. Yeah, that that was hard. And then as time went on, at different times, when I would meet up with parents, say in in the grocery store, that's my perfect example. There were times that I would see somebody coming down the aisle, and I would turn around and run away. Because it was it was just easier not to talk about them. I I did not want to hear how their kid was doing amazing things in school. And most of the time when they would ask about Joe, I knew they really didn't want to hear the whole story anyway. So I was chicken inches ran away a line. I think Joe felt isolated too.
PSC Mami- Monika 22:44 Yeah, sounds really challenging emotionally for you. Were there spaces where you did find support or community during that time to really help you hold all that you were holding as his mother.
Joanne 22:59 Actually, I'm glad you brought that up, because I hadn't even thought about it till just now. About, so going backwards. Gosh, I have to think what year was it was it was when the internet was just coming out. I mean, you know, where everybody was on it. And my husband found PSC Partners and the PSC Partners second annual conference was like, three weeks away. And across the country in Pittsburgh, so I go into my boss and we're supposed to give 30 days notice for a vacation day, and I said I'm going to this PSC Partners Seeking a Cure group meeting. And my my supervising physician was like, don't listen to the internet groups. Don't go to this. It's not going to be accurate information. I said it's University of Pittsburgh. Don't go. Well I went and when you said finding the support. So leaving from California, I don't know. Five o'clock in the morning plane flight getting there. And I arrived, Just as the opening Friday evening session was starting. I didn't even check in like I'm dragging my suitcase and I'm greeted by this wonderful PSCer Tim, who greets me and was so kind caring. When I left that weekend. I felt like I had knowledge. I had support, these wonderful people, everybody was nice. I felt like I'd met my second family. So I started volunteering with them and did that for years.
And now I have the privilege as a retired nurse practitioner to actually work with them. It's like a dream for PSC Partners from a support standpoint, like other kids that I've seen. I tried to get to go to a couple of conferences because they have a teen group, and he was not interested. The year we had it in California though he was interested. And so he was 17, maybe. He didn't even want to go though, even though he told me he'd go. And it was actually someone from PSC Partners, Don Safer, who says, he looks at me and goes Joanne, what do you need from home? Like, I don't need anything. He said, What do you need from home and all of a sudden ain't him? Oh, Joe has to bring me something. So I had Joe find me a dress. Don, literally, and I could see this. This was a parental moment, I could see it from the window. I'm looking out and Joe drives up and he tells me he's there with the dress. And Don went down to meet him. Joe when Don came back, and I think Joe went home to get up clothes. And then he stayed the whole weekend. Loved it. Found other PSCers, teens, young adults, it's an amazing thing for teenagers and young adults.
PSC Mami- Monika 26:09 That's so beautiful. Within your home community and family community. Did you find folks or support then your closest friends and family at home? Did you ever end up finding folks that would listen to his story and would listen to your story?
Joanne 26:29 Yeah, um, there were some folks that I worked with my sister were very close. So that was easy. And my mom, she was alive then, she was great. So yes, there were. For Joe, it was more difficult. And again, like a lot of people with any chronic disease, but certainly PSC. He found he had a lot of difficulty with anxiety and depression. He was lucky, his primary care doctor was very open to talking about that. Open to medications, which Joe was willing to try. That made a difference. And and I truly, truly advocate that and would say to people who it's difficult, especially if you're primarily talking about these problems to a specialist, gastroenterologist, hepatologist, they are usually not comfortable with medications. And so for a lot of people, they need to be assertive, who else wants psychological support or counseling, as well as medication health? And that really has made a difference?
PSC Mami- Monika 27:49 What are ways that you're able to kind of shore up your strength internally to be present for your family, any chronic disease, any any member with the disease, we know is really challenging within a family and affects the family dynamics. I have found talking to folks that pediatric chronic illness is even more challenging in some ways. How did you ground yourself during that time when he was younger?
Joanne 28:18 I think by just wanting to be there for him, trying to help things be as good as they could be. I think retrospectively, something that I wish I maybe had tried harder, although I don't know if it would have made a difference. We had shared a very, very, very small, I used to call it kind of a tent with a roof. It was a tiny little old cabin that we shared with three other families that have one bathroom. Once Joe was diagnosed, I was not perceptive enough to really try to figure out why he never wanted to go. My elder son, I often would meet him and you know, we'd go up there. It wasn't until a lot later after we'd actually every bit about me wanted to sell that house. So it got sold. And it wasn't until after that Joe and I had a conversation. It was the having one bathroom. I do feel that when you said how do you support yourself? I think I just powered through, but I think sometimes I wish I maybe had stopped and thought more. Does that make sense?
PSC Mami- Monika 29:42 It does. Yeah. Yeah. I've sometimes heard at the conferences for folks there's a transition from the pediatric PSC world to the adult PSC world right and that is not only sometimes you have to switch doctors, you have to switch teams, sometimes you have to switch hospitals. But there's also a leap. And again, having worked with teenagers, especially seniors, there's already this leap that parents and young people have to make from, you know, their pediatric youth life to their adult, beginning adult life. What was that transition like for you, as his mom to make that that shift?
Joanne 30:26 For us? It was not the typical, I'm a senior graduating and am I going to take this job, I'm not going to go off to school here. It was, again, when I said, you know, it was kind of a rocky curvy road. He was staying, he was at home. And so was trying to do the junior college. He was working. When his brother offered that opportunity to come live with me, I as a parent was so hopeful that that would help Joe be able to figure out what, what do I really want to end up doing? That, I was very excited, and wanted to say, let me help you move up there. And luckily, it turned out to be a really good experience. When they turn eighteen, for parents, because at 18 they are now an adult, and so that means that I no longer get to go to doctor's appointments with them. I don't have any control over these medications. So that was a huge challenge. And as a parent, it can be really frustrating. What you hear from what went on in that appointment? Who knows what really happened? Medications, it was so hard. Like, you can't come and say on Saturday evening, I have one pill left and there was no refills. It just does not work. And that's not an easy transition for kids either.
PSC Mami- Monika 32:09 Like as an adult. I've been in that situation. Oh, it's Saturday, I'm in trouble.
Joanne 32:17 That's right. That's right. But you probably didn't do it time after time. But those things all get better. But it you're absolutely right. It's a huge transition. And so then you've got that transition of doctors and insurance. For us, the sort of easy part was he was close enough to be able to drive home to most of these doctor's appointments. And we could manage that. When he moved to Las Vegas, he got his own doctors. And this is where I want to say PSC, in my opinion, PSC children grow up much faster, they're more mature. What I have seen meeting the young adults and teens at conferences, they're so amazing, caring. They're old beyond their years. So when Joe was in Las Vegas and one day called me and said, I fired the GI. It's like, well, good. He didn't listen to me. Good. So, but going back, just transitioning for a lot of people, that's really challenging. And I would say, that certainly talking to other parents, some folks are lucky, they may be at a medical center where they have a whole team that helps with transitions. But if you maybe are in a rural area, I would definitely say find resources, PSC Partners on the website, there are resources, and they talk about that. Certainly social media. Because it's not easy.
PSC Mami- Monika 34:04 At what point did you realize and I guess that's an assuming question. Did you realize you had let go of that piece, that you had transitioned it to him? Or have you?
Joanne 34:20 You got to the perfect question. I know I totally haven't. Although a big part of my background, I spent over 15 years doing palliative care, which is providing support for people with long term chronic illness. And I'm very comfortable with conversations about you know, what's important to you and what you need to do things like that, to be honest with you. I know there are times that I really would like to be much more involved or offer my opinions more and I can't, sometimes I do and I hear that no, that's not appreciate, and we've also had an amazing conversations though, and I'm really glad that my son's been open to being able to talk about, he's told me if you got really sick things that he'd want to do and things got were really bad, given me instructions in his father instructions about, you know, what's important to him. So your question, have I totally given that up? Honestly and truthfully, no. I'm not sure how many people ever really, truly can. You're always a mom. Doesn't matter how old they are.
PSC Mami- Monika 35:39 You brought up your husband, How have the conversations been between the two of you about supporting Joe? Supporting each other?
Joanne 35:49 Initially, it was interesting, because thank goodness, at that point, my husband worked from home. And so when Joe was really sick for a number of months, it was nice because Steve was here. He though, he was not the kind of dad that would go into doctor's appointments, unless I was away and there was no other option. The first year that he went to a PSC conference, he really wasn't totally thrilled about that. But just like me, once he got there, he was in. And so that was good. We have a very open relationship with this where we are able to talk, he has been so supportive of Joe, through, you know, the difficult times that have come around. And as a family, having, you know, any family with an adult child that moves back home, it's a transition, I think, the three of us we've done really well.
PSC Mami- Monika 36:51 You mentioned earlier, the 504 plan for when Joe was in high school. And I just wonder for folks who have never heard of that before, you know, we had a brief chat about the fact that I was a teacher and that you as a parent approach this process, can you describe a little bit what the process is, and why pediatric parents might want to know about 504?
Joanne 37:14 Well, I'm gonna say they must learn about it. It's, it's wonderful. So for people, it's basically focused on medical issues. And I think the formal term is 504 B, I don't remember for sure, but 504 would get you there with an educator, it basically is a way similar to like a special ed, ie, is it IEP?
PSC Mami- Monika 37:42 IEP, Individualized Education Plan.
Joanne 37:45 Right, right. It's similar to that, that's for educational learning needs. And so if you think about this as being for medical needs, the 504 B. So you have to and parents may have to be assertive about this, you might have to push the school saying, No, I want this in my child needs this.
PSC Mami- Monika 38:08 From an educator perspective, yes, you have to be assertive, even though theoretically, ideally, these are easy to implement, you must always be assertive,
Joanne 38:18 Thank you, um, that and, and for somebody like me, as a parent, had I not have my sister behind me saying the same words you did. I might have dawdled with it. But what it allows is for the needs that your child has, and whether it needs to be able to have access to the bathroom, be able to either choose when you can do physical education, or, you know, have have a modification for that because of your physical needs. So it's an individualized program to meet their needs. And I'll say that I didn't realize that that carried out into higher education when someone's at college. And so when Joe was in college, that actually, I think made the difference for him to be able to do it. His instructors were very supportive.
One of them even shared that, you know, how she copes with her chronic illness. He knew that he was able to, he got the ability to sign up for classes early so that he could get classes at a better time of day for him everything had to be in the afternoon. For finals. it was one of his instructors that actually told him, "You can take tests early. You have to tell me, and we have to decide on a date before the actual date of the test." But then he could be in a private space at a time of day that worked for him and do the test on his own. It made a world of difference for him. He also was able to get special parking privileges, because it was too hard to walk on a hilly campus, whether your child is preschool or anywhere in between, it is certainly a way to help. And then I also became a huge advocate of independent study. That was wonderful.
PSC Mami- Monika 40:19 And just to mention, you know, I had students who maybe had to go for infusions, or you know, how to procedures and the 504 B really communicated their needs to the teachers, and also really made sure that the students had something to point to, you know, if let's say a teacher wasn't up on their 504 B, that then they could be advocated for by another adult in the school or a parent, a parent can come in and say, How are you following my child's 504 B? Tell me exactly what accommodations how they're helping. Let's review this. And that is absolutely in a parent and in a child's right to do so within a school system.
Joanne 41:00 Yes, yes, I can't agree more,
PSC Mami- Monika 41:04 because it is more stressful for kids who have to leave school or have fatigue or you know, have flares. So it's not any kind of bonus, it is a way to try to make sure that that they are able to complete the work and show their learning,
Joanne 41:23 Right. And also for medications, especially if kids need to take medications at a certain time or things like that makes that a much easier, more doable process. Something I just thought about that I wanted to mention is for parents for the journey, you may find that there are things that are unexpected. And I think for anybody with chronic illness, this probably applies. But for me, what struck me was that I would think I have things together. And then for whatever reason something might happen, or just out of the blue, and it's like, all of a sudden you have that feeling of sadness. And it took me a long time to realize that I was actually grieving what I hoped, what you hope for for your child. And you know, we all have these hopes and plans and and you realize that some of them may never ever come to pass and the things that not long ago, Joe and I were talking about high school proms, and he said, I never went to one. And I was like, Oh my gosh, he's right. These times that you unexpectedly have emotions to pay attention to it. And it's okay. And it's normal.
PSC Mami- Monika 42:46 Absolutely.
Joanne 42:47 And that you seek out all those people that you were asking who supports you?
PSC Mami- Monika 42:52 Yeah, someone that you can just say, five years later, but he missed prom, and they will sit with that grief with you. That's really important. Can you tell me a moment of pride that you have something that you're really proud of Joe for?
Joanne 43:10 Oh, yeah, I probably could tell you a few. But when I told the story of him working and how, you know, he could work with these frail, elder adults. He is like many PSCers that I've seen, and I mentioned how they're very caring and loving. I'm so proud that he was able to get himself through school- succeeded with that, I'm proud that he has been able to cope as well as he has with the changes in his life now, and that he still is hopeful that things are gonna get much better and he's hopeful he can get back to work. And I give him great credit for that. I'm proud of some of the relationships that he's had with people that he's loved and cared for. And he publicly has noted that at times, which surprised me, totally shocked me that on Facebook, he went talk so lovingly about someone that he cared about. He also was able to tell his story during the patient focused drug development conference that we had a year ago that he was willing to do that publicly and share some things that were so private to him. Yeah. And he's just a generally, genuinely nice guy.
PSC Mami- Monika 44:37 That's a wonderful quality to see in your son. He really is. Speaking of advocacy. I mentioned earlier that I've I've come to see the this fierce mama bear, medical moms phenomenon. Obviously in the PSC community. We have many of you who are advocating not only for your child, but for all of us. What inspired you to be so active in the community? What is your motivation? And how do you find the strength to kind of do all of the things you do? Anyone who's involved in the PSC Partners community knows that you do a lot of behind the scenes work, how do you find that strength and that energy?
Joanne 45:20 For me, it started off with, I want research. And through the research, we are going to get treatments, hopefully a cure. To get good treatments to get better treatments for symptoms that I think was my primary motivation. And it's a real driver. And then it grew to through the community and the conference, I, we have lots of volunteers that helped the conference. And so over time, I ended up taking on more and more of those duties to just coordinate volunteers, which sounds silly, but when you have 100 or so volunteers doing all kinds of different things at the conference, it is a coordination job. So I and I totally enjoy that. And, and then seeing that for our peer support groups. And now with COVID, we've been doing online zoom, zoom rooms, so to try to be able to offer that support to as many people as we can. So I think those are, to me, it's all good. But I do think that there, there is progress being made. And some day something really good is going to happen that's going to be astounding. And so that's, that's my driver. Yeah, and everybody's so nice.
PSC Mami- Monika 46:55 And I'm curious, because I see you very much in the forefront. But I've also met folks who within the community over time, either the losses or the hard parts, or the you know, either denial kicks in or the the fatigue of chronic illness and dealing with not only your own, but those you love now in the community. How do you see that for you, you can maintain that drive and that hope to keep pushing forward.
Joanne 47:26 Sometimes I feel like it's, I use that term Don Quixote in search of the impossible dream, that I really just want to keep going. And so you're right. Some of the sad times, unfortunately, some of the people that we all have known and loved, passed away. And there are members of our community who are still there, because for the very same reason, the hope that they can make a change and support people and make things better for everybody that has this crappy disease. And I think that that's where I want to stay headed. Because it's and when I mentioned that, that first conference, I felt like I met my second family. I'm truly feel like, this is my family. Right now. I wish I could give you a hug. We haven't been able to hug anybody for too long.
PSC Mami- Monika 48:29 So true. So true. Is there anything I haven't asked about that you would like to share with other parents of PSCers or with others who are listening?
Joanne 48:41 I think probably the one thing I'd want to share is we never want somebody to feel like they were alone. And so to reach out, and, and not to stop there. I'm not a very good person on Facebook, I just am not. I don't know, I just have never, I'm a Twitter person. But sometimes when I look at Facebook, and I say, oh, somebody wrote in and hardly anybody's responded to them. And what I would want to tell people is even if that ever happened, where you wrote a post, and either somebody didn't respond, or it wasn't what you had hoped to hear, don't, don't give up, come back. Write something else write to PSC Partners and say, Can somebody talk to me? because this is such a, it's there's a it's a broad community. I'd like it to be even bigger. I'd like it to be much more diverse. I feel like that's something that we are not there yet. We've got so many more people to reach, and we just need to band together.
PSC Mami- Monika 49:54 And if you had knowing and having experience and feeling all the things you've felt since that day are your friend called you and said, Hey, listen, I think this is what's coming. What would you say to that version of yourself that took that phone call and hung up. What do you wish you would have known?
Joanne 50:13 Well, I do know, if my husband hadn't looked on the internet, I wouldn't have found my big support group. Because I wasn't into that, at that point, that would have made things a whole lot more difficult. I've never even thought about that, till now, it would have really changed, because this is something that is so unpredictable. And there are so many unknowns. And that's really a core difficulty here. Now, actually, with pediatrics, they, you know, have come up with a tool that might help give parents some comfort that, hey, your child is in a good place and should be in a good place for you know, a long period of time can also potentially help someone know that, you know, things may be happening a little quicker than expected.
So there's always good and bad to prognostic tools like that. Although, you might have said it, and I've certainly heard it from many, many excellent physicians talking to people who say, no matter what happens, I will always communicate with you, we will talk and I will be there through whatever we need to work through. And that could be one other thought that if you're in a medical situation, and you don't feel like you have that type of support, who else could provide that? As a nurse practitioner, I know how many times in large university or large medical centers, there's certainly other physicians, there's nurse practitioners, physician assistants, there may be someone who can provide more of that support. There's social workers, there's all kinds of different roles, a nurse navigator to help find that. And that's something that I'm perfectly willing that anybody that wants to contact PSC Partners, I'm happy to help them try to navigate through something like that.
PSC Mami- Monika Thank you, it is absolutely fitting, it does not surprise me at all that you end our interview with an offer to help people. I have encountered Joanne in many PSC Partners and non PSC Partner events around PSC since we live fairly close to each other in California. So thank you on behalf of so many for all you do for all of us. Thank you for sharing your story as a mom, and all the things that you hold in your heart, even as you're constantly cheering all of us on. So thank you so much for sharing your story. Joanne, thank you.
Joanne Yeah, talking to you was just like talking to my best friend.
PSC Mami- Monika 53:05 So sweet.
Joanne 53:06 It's nice.
PSC Mami- Monika 53:07 Thank you.
Joanne 53:07 Thanks.
PSC Mami- Monika 53:09 Gracias for joining me and bearing witness to this story today. Every PSC journey is unique, and I'm so glad that we were able to share this one today. Please reach out to me if you'd like to share your story at the intersection of PSC and parenthood. There's a link at the website pscmami.com as well as other stories that have been shared over the years. Also, if you could share this episodes with your networks, you never know who they may reach in their time of need. Gracias.
