Alpha Connect Sisterhood Series

Jennifer Wheeler, EK, on living with a rare disease

May 21, 2021 Kelly McGinnis Beck Season 1 Episode 30
Alpha Connect Sisterhood Series
Jennifer Wheeler, EK, on living with a rare disease
Show Notes Transcript

May is Guillain-Barre Syndrome Awareness Month.  This week Kelly chats with her chapter sister, Jennifer Wheeler, EK, on what it’s like to live with this rare disease.  You can learn more about GBS at https://www.gbs-cidp.org/.  If you want to connect with Jen, you can reach her via email at [email protected]

Alpha Connect Sisterhood Series Podcast transcript
Jennifer Wheeler on living with a rare disease

Disclaimer: This transcript was developed with an automated transcription program, spelling and grammar errors may occur.

Kelly  
Welcome to Alpha Connect sisterhood series. I'm your host Kelly McGinnis Beck, national president of Alpha Sigma Alpha. Thank you for joining us today. This podcast series is all about connecting. On each episode, we will connect with sisters from across the country. Sometimes there will be updates on official Alpha Sigma Alpha business. Every once in a while, I might take this podcast on the road with me to an Academy event, Chapter Installation or anniversary or an NPC meeting. But most of the time, I will be interviewing members, members at all stages of their membership from collegians to seasoned alumnae and everyone in between who will share their stories, learn about their journeys, and celebrate our amazing connection through Alpha Sigma Alpha. Welcome to the podcast Jen Wheeler. 

Jennifer  
It is a pleasure to be here thank you very much for inviting me to be partaking in it. So it's great to be here. Jello ASA.

Kelly  
And so for all our listeners Jen is a chapter sister of mine from Epsilon Kappa chapter at Millersville University and so we were in the chapter briefly together I think Jen you were a senior when I was a freshman.

Jennifer  
I believe you're correct about that. You you rushed when I was on leave or student teaching.

Kelly  
So why don't you share every with everyone a little bit about your ASA story? How did you become a member?

Jennifer  
Well, first I saw this beautiful girl named Mari Bond when I was probably a sophomore, myself, or a freshman and just thought like, you know, we were in a speech class together. And I just thought Wow, she's so cool. And she's in ASA. And she beautiful and she's nice and kind you know, she was just a really great classmate in the class, but she represented ASA so well. And then my sophomore year, in the spring, my best friend Holly pledged ASA, or became a member of ASA. And so then I fell in to place fall of 93. So this semester after I aim to rush teas and became a sister that way.

Kelly  
So you pledged your sophomore year,

Jennifer  
Actually, I plan to my junior year, but Holly did sophomore year. I learned more about it from her sophomore year. And then I pledged my junior year. So I was I was a late bloomer, when it came to this sorority thing.

Kelly  
And what was it that made you wait until your junior year because that's a really unique story. You don't hear that often. So we'd love to explore that a little bit.

Jennifer  
I think for me, it was I had had a bad experience my freshman year, watching somebody pledge another organization. And I will refrain from saying that at this point. I had an opportunity where I didn't really like, what I saw was what went down in that particular organization. And I think that kind of put me off for a while. And then when I saw what Holly went through, and what she experienced, I was like, Oh, I could totally do that, you know, like, they seem like a good organization. So that's sort of what, like I learned from one bad experience, but then learned from a good experience, you know, 

Kelly  
Thank goodness, he saw that good experience, because unfortunately, those while those negative experiences are few and far between. They're what stick out.

Jennifer  
Exactly.

Kelly  
And I think we missed the opportunity for great members. So you joined in your junior year and millersville is a deferred recruitment campus meaning that first semester freshmen can't pledge and so formal recruitment is held in the spring, but I'm going to guess you came in the fall through COB.

Jennifer  
I came in fall of 93. And I went to the pearl ceremony. I think that was my first party.

Kelly  
Okay. But it wasn't the structure that we normally did in the spring, right?

Jennifer  
No, no, it was very, very different. 

Kelly  
It was very informal. But then ironically, if I remember you went on to be what we called rush chair back then which is now called the Vice President of PR and recruitment. And so you lead formal recruitment, correct?

Jennifer  
Oh, yes, I did. Yes, I did.

Kelly  
When I think it was much more what we call frilly with lots of themes and all those kinds of things that we've tried to move away from over the years but

Jennifer  
It was definitely frilly did the big joke is of course that I put brownies and lemon bars on the tea set, which did not go over well.

Kelly  
Not with our Chapter advisor Paula Foreman that's correct.

Jennifer  
You know, I just thought I was putting them on a pretty plate, like I didn't realize that like you don't put anything on the Tea set, you know? Take the girl out and Deller County, can't take Deller county out of the girl, you know, like it was just  to me it was just a pretty plate.

Kelly  
Oh, that's funny. Now, you also were in the chapter and went to the Milwaukee convention when we won the crown of excellence. So share a little bit about what that experience was like.

Jennifer  
Oh my goodness, well, first of all, if you've never been to a, I think, I think I'm spoiled because I got to go to a convention as an undergrad. I you know, I mean, I don't think a lot of undergrads get the opportunity to be that because they're so worried about getting through school. But it was a great time, it was a great time in my life to be able to go and do something like that. We get to, you know, visit the town of Milwaukee and go to a bunch of places and, and then of course, you get to experience the sisterhood at the convention, and not just the meetings, but all the fun activities they have you do. And I mean, I remember we did line dancing one night, and they had pizza night, they were always like themed nights. And they were always fun. And they placed us well with our roommates. We had great roommates from Missouri. And you know, it just it was I really do encourage anybody that's an undergrad, if they ever get a chance to go, they really should. Because it really was a life changing experience for me. And not just because we won the award.

Kelly  
How surprised we'e all of you and you won the award. 

Jennifer  
Well, you know it's funny, you say that. Because I think, you know, they're they're giving you know that whole speech ahead of time. And they're saying, well, this chapter did this, and this chapter did this. And, and I'm sitting in between Andrea and and Gretta. Kind of like, that's us. We did that. We did that. But I'm squeezing both of their hands like this is us, this is us we're getting to go up. Because everything they said, matched with what we had done. So you know, of course, we were trying not to get too excited. But you know, at one point Gretta is like, yep, it's us. And as soon as she said that I knew it was it was definitely us. 

Kelly  
Well, that's a really special memory to have.

Jennifer  
It really is. And you know, you can't I mean, you can't necessarily script that, you know, like we had a good feeling that we were going to get it but there was no way to know for sure. But either way, we had an amazing time. 

Kelly  
Well, that's awesome. 

Jennifer  
So undergrads definitely try to go because it's worth it. And you'll get to meet so many amazing sisters that you never would have thought you would have ever had the opportunity to meet. 

Kelly  
Well, I mean, that's very true. I got to go as an undergrad as well. My first convention was in 1996, at saddlebrook Resort in Florida. And it's really what kind of, you know, hooked me into that you know, lifetime membership experience, especially seeing all of our alumnae. You know, so excited and just the energy from them. It really made me see sorority be more than just the four years or however long you're in it in college, but that it is for life. I mean, I remember there was a talent show or some kind of we did some kind of like Alpha Olympics or something. And the judges were a number of notable alumae me like Betty Wallick, who is a past national president and Jean Grady who's a past national president and Bonnie Keenaman, who's the past foundation chairman. And so you see all of these little white haired women come out and they've got like these towels behind their butt and they're dancing and like, you know, it was hilarious, watching them come out to get ready to sit down, and I've got pictures, but I remember just thinking, you know, watch, look at these women, these sorority women having so much fun, long after their college days are done. And so it was really I think, for me, what kind of really turned my perspective from our chapter there at Millersville University to something so much bigger than than that.

Jennifer  
Right? Well, and that's just it. I mean, you know, especially, one of my I mean, one of the things that I appreciate so much now, especially, you know, having been on homebound, which is a whole nother issue, but you know, getting to see the Phoenix come you know? And getting the catch up on different chapters and seeing what's going on in the national, you know, sorority and so, you know.

Kelly  
Absolutely.

Jennifer  
I mean, it's just it's fodder for my brain. While I'm dealing with what I'm dealing with, so.

Kelly  
I think a lot of people stay connected through the Phoenix which is is awesome, and it's also a part of why we have intentionally chosen not to put the Phoenix 100% online We've got all of our magazine issues on our website, but we still mail a hardcopy because for some people that either they're not tech savvy or they don't want to read it online, and they like getting a hardcopy, and I have to be honest, I like the hardcopy. I have every Phoenix except for two. I don't know what happened to two of them since I joined the sorority in 1995.

Jennifer  
Oh, my goodness. There is probably one Tupperware container. Or like one of those big like, you know what I'm talking about. 

Kelly  
I do and I flipped through them, especially as as national president, when I've got to write mine. I'm like, Well, let me see what other you know, other presidents wrote? Or what were some of the things going on at different points in in time, and not that it's that long ago, but it's long enough ago. And so it's fun to kind of flip back and see those. So you joined me today, actually with one specific purpose that we wanted to share with our members too. And I'm grateful that you're willing to come on in and share your story. So you were in the last, I think, what year or so diagnosed with Guillain-Barre Syndrome , which is a very rare disease. I think we talked about this before we hit record, there's about one in 100,000 people that have this or six to 40 cases per million a year. So very rare. So tell tell folks a little bit about how you found out you had this and what led up to that and then we can talk a little bit more about that you probably need to explain to people what Guillain-Barre Syndrome  is or I guess it's called GBS, which is an easier way to say it.

Jennifer  
Well, you didn't kill it, Kelly. You practice it is called Guillain-Barre Syndrome or GBS for short. And essentially, probably in around the late end of February last year, in 2020, where, you know, pretty much the whole world was falling apart around that time are starting to. But I was diagnosed with an upper respiratory disease. They said it was bronchitis. I'm not exactly sure it really was it could have been COVID. But there's no way to know at this point. But I had an upper respiratory disease that was making it very hard for me to breathe very hard for me to walk. I was getting very weak. And I went to an urgent care and they basically said we think you have bronchitis. So they gave me steroids. They gave me an you know albuterol, all kinds of different treatments. They did a chest X ray and pretty much wrapped it up to do you have an upper respiratory disease. Okay, so we got a start started to get better for a little while with all those treatments. And then I probably around May notice that things were not really getting any better that they were getting worse. I was having a really bad time with my gait. With my walk. I was falling all the time. I couldn't catch my breath. Anyway, I ended up in the hospital in May. And they diagnosed me with pulmonary embolisms and said, okay, well, we're gonna admit you. And they did. But they basically, you know, at this point, it was high alert for COVID-19. Once I tested negative for COVID-19, they released me even though unfortunately, at this point, I really couldn't walk or do any self care. And they said, well, we'll send a nurse, we'll send a therapist, blah, blah, blah. Within a week, I was back in the hospital. Long story short, the neurologist did some tests and said, You know what, I think that we have a case for Guillain-Barre Syndrome here.

Kelly  
So how long did it take them to get to that? Sorry to interrupt you. So from February-

Jennifer  
Overall, probably about three weeks for me. 

Kelly  
okay. 

Jennifer  
However, for other people, and I know this just by dealing with people on the message board, or groups, that there are a lot of people that weren't diagnosed as quickly as I was, I'm very fortunate. So basically, from having the virus, whatever virus I had upper respiratory, that causes your immune system to be weak. And then that's what caused Guillain-Barre Syndrome. So one disease led to the other essentially. And it's an autoimmune disease. So you know, there's no cure for it, per se. I will always have Are you with me? They say that most people that are diagnosed with Guillain-Barre are usually diagnosed within the first year of it happening. And then they usually only have one flare. However, there are plenty of people that have had multiple flare ups three and four or five sometimes

Kelly  
What is a flare up?

Jennifer  
Essentially, basically, the same things that I was experiencing the first time, numbness in my hands, numbness in my feet and legs, paralyzation. In some cases, I was paralyzed. It didn't last for too long, but I was you're paralyzed, you have extreme nerve pain.

Kelly  
That sounds scary.

Jennifer  
Yeah, it is very scary, extreme nerve pain. spasms with your muscles, because it because basically the myelin sheath, which is covered all your nerve endings in your body, the the Guillain-Barre attacks that, so you feel all the nerve regeneration in your body, because the sheath isn't there to protect Exactly. So it's very painful. But it is caused ultimately by something upper respiratory, but it's usually one of those things. It's like, it takes a couple steps to get to that point.

Kelly  
So it's not necessarily something you're born with.

Jennifer  
Exactly, although, although I will say after talking to people with Guillain-Barre and being on the message boards, there is a genetic marker. Because my cousin had it. And she had it about three years before I did. And now she's not a first cousin. She's like a second or third cousin, but there is a genetic marker for it. There are people on the message boards that I've talked to that are brothers and sisters, and they've all had it. But it's more rare than it is, you know, I mean, that's a very rare thing to happen.

Kelly  
So you could have the biomarker for it, but it may never present itself.

Jennifer  
Exactly, exactly. So I think I was just in a very unique position. And I, I celebrate, I celebratem my birthday is the day that I took my first steps on my first year. And now I also celebrate June 26. Because that was the second time I learned how to walk again by myself. 

Kelly  
So talk about that a little bit. I mean, that's kind of crazy to me to think about, you know, and you and I have talked about this several times, since your diagnosis, just you, it's almost like you really had to learn basic life skills all over again.

Jennifer  
I did, I did. When I was finally sent to Bryn Mar Rehabilitation Hospital in Bryn Mar I had not showered probably in a month.

Kelly  
They're not really great in the hospital about helping you with that

Jennifer  
I mean, they did their best, but you know

Kelly  
they've got a lot of things going on. So it you know, it's a sponge bath, which is not kind of the same as getting in the shower and letting the water run over you for a long period of time.

Jennifer  
Exactly. But when I got there, it then it became Okay, you can't feed yourself anymore, but we're gonna teach you how to feed yourself. You know, you can't bathe yourself, but we're gonna teach you how to do that, you know, and I'm like, You got to be kidding me. I'm 47 years old. You know, like, it was a very humbling experience, I guess is the best way to put it. You know, I you know, I currently I live alone. I you know, it does still take me a lot longer to do things for myself, but I have a lot of adaptive tools like adaptive silverware cutting devices. I have a shower seat in my shower. So again, I sit when I leave, I'm not necessarily doing it in five minutes quick. it sometimes takes a little longer than that, but I am I able to do self care at this point.

Kelly  
How long did it take you in rehab to kind of re learn those skills and and you know, what's the honest truth in terms of how frustrating and hard was that?

Jennifer  
It was extremely frustrating, extremely difficult. But I would say I was there I was in Bryn Mar rehab for about three and a half months of my of last year. So that's about how long it took them to feel that I could survive by myself. You know at home. 

Kelly  
And it's amazing to me today. So my my mom had surgery on her leg and because she had bone cancer and they you know put they gave her a new hip femur and knee which is a significant amount of reconstruction. I guess that's the right word. But it's amazing to me how, you know, they've created adaptive tools to help you like I remember, like she still uses, they gave her this, I think she calls it a Reacher, because she can't bend down and get all the way down yet because she's still going through her own recovery. And so it was to help her grab things, you know, that are either on the floor or somewhere that is out of reach, because she's not gonna climb on a chair to get something either. So it's amazing to me and I remember you posting pictures around utensils that look more like what we give our toddlers, when they're first learning to eat, right? They've got those big fat end to them so you can hold them better. And I remember my mom came out of surgery and came home and we're not sure if it was just the way the needle or the I don't even know what it's called. The tube was in her arm, whether they nicked the nerve or something. But she had a hard time for a while with her hand and grasping things. And I remember I thought of you thinking like, you know, cuz she had a hard time holding a fork.

Jennifer  
Yeah. Yeah. Fortunately, the company OXO, their culinary company. They make adaptive silverware. So I've been very fortunate I had that. And there's also just a lot of tools out there for people that, especially for me, one of the things that has been really therapeutic for me is cooking therapy. Because I don't necessarily have to have fine motor skills for that as long as I have adaptive tools to help me like cut things or dice things or you know, and it keeps me busy. Not only does it keep my hands busy, but it also my mind busy, you know, because I have a lot of free time on my hands right now.

Kelly  
Right? So there's no cure for GBS what so what does that mean? is like, Is there a point where you get back to how you live your life before you had this? Or will there always be adaptations that you have to make going forward?

Jennifer  
Well you know, it's an interesting question and one that I don't necessarily have a straightforward answer to. They say that you know, from your first diagnosis with GBS, that it can take anywhere from one to two years to get back to about 95% ability. I will only be hitting my first year anniversary on may 18th this year. So I still have like another year to kind of see how much I improve. Am I improved compared to where it was this time last year? Absolutely. It's you know, I mean, and that's a dream, but I'm still not at the end result, you know, which, you know, would be certainly more fine motor skills and be able to type and write by hand, you know, or even my handwriting and you know, that's really difficult still.

Kelly  
Yeah, well, thankfully, we have like text to talk and or talk to text and things like that now-

Jennifer  
that has been extremely helpful, you know, going to the text. And believe it or not, you know, it's amazing when I explained to people on the phone, like if I'm calling about, you know, a bank statement, or a medical bill or whatever, most people are really adaptable when you're dealing with a disability, believe it or not, like, which I have found really shocking. They're like, Oh, you can't you can't type this out, we'll email it to you, what's your email address? You know, and it's like, Oh, thank you, that's so helpful. So you have to recognize those that are willing to help you out, you know, 

Kelly  
That is helpful. And, you know, I, there is a lot of benefits to where technology in the world has gone over the years and sounds like you're getting to experience them in a completely different way

Jennifer  
I never thought of but you know, I'm you know, here's the thing I am, those were very fortunate, you know, like, I have a lot of people that love me a lot of people that care about me, you know, even just having this opportunity to share with other people like, please do not ignore your health, because you just don't know. I mean, we were in a very unique situation, they just called, you know, for, no doctor for anybody. And I felt like crap. You know, it was like this very unique set of circumstances. But generally speaking, moving forward, people should not ignore if you feel something's not right, don't ignore it. 

Kelly  
Yeah, I think that's, you know, I think about your situation. This happened in the, the height of COVID. Right, so how do you sort through a respiratory infection versus COVID and all these other things a time when you don't want to be in the hospital and or any of those places with everything else going on? And that you know, complicates it even more then You know, if we weren't in a COVID time, but even still, I think people think, Oh, it's a cold or and I'm not going to go see a doctor and you don't know where it can go.

Jennifer  
Yeah, and I just remember saying everybody, you know, I know I don't feel good. I don't know what's wrong, but nobody will see me. Because, you know, like I said, you know, it was probably the end of February when I first got sick. And then it was mid March when the whole COVID thing started. And, you know, nobody was willing to see a patient. And I get it, you know, but I think that that definitely hurt me in getting better faster. If that makes sense. 

Kelly  
It does. It does. And so part of why we chose to do this is because GBS is, May as GBS Awareness Month, what have you seen in terms of you know, so certainly awareness and sharing your story and helping folks know, but what other things can folks do to support GBS Awareness Month? I think there's a foundation I'm sure that donations can be made to but are there other ways people can be supportive and helpful that you're familiar with?

Jennifer  
My biggest suggestion to everybody is, there are a lot of people that do get GBS from having a flu shot. I would say, you know, I would never in any way tell anybody not to have a vaccine or not to have an immunization. That's not what I'm saying. I'm just saying make sure you do your research, you know, make sure that maybe there isn't a biological marker in your family already for this disease before you get your flu shot. Because sometimes the flu shot can cause it, also eating raw chicken to make sure you're cooking your chicken And I mean, I know that there's like ridiculous things, but like you wouldn't think of but-

Kelly  
yeah, I wouldn't have thought of that. But I guess that makes sense. Cuz you can get salmonella or some other disease that could trigger it.

Jennifer  
Exactly. So you know, make sure you're cooking your meats properly, make sure you know that you're doing your research to get the flu shot. I mean, again, it's a very rare flare up. But a flu shots can give you that. And then if you want to do something, the best thing you can do to help somebody with GBS. If you're going on is on go donate blood, that would be the best thing you could do. Because a lot of thethe care for people with GPS is what they call IBIG, which they take from healthy blood and give to people like myself. And it is basically a healthy blood plasma, essentially. But it comes from blood donation. So if you are so inclined to want to do something to help somebody with GBS, go donate blood, that's the best thing.

Kelly  
That helps so many people too. So that's, that's really good to know.

Jennifer  
Exactly. It's not just me, I mean, you could be helping any number of people, you know, so definitely donate blood.

Kelly  
And I want to circle back to the vaccine part for just a minute, for a couple reasons. One, certainly, I think, to your point, which you've already said, is not discouraging people from getting a flu vaccine because vaccines are important and protect us. But understanding I mean, I know I have friends that maybe have an egg allergy, so they can't get certain types of flu vaccines based on what you know, what their what's in their makeup, and whatnot. But if I remember correctly, you and I talked about like you can't get vaccines anymore, because you have this autoimmune disease.

Jennifer  
That is correct. Which I have. Yeah, I have been advised never to have a flu shot ever again. No shingle shot, because I'm not old enough yet. But I will be soon.

Kelly  
Even then you're not allowed to have it?

Jennifer  
Even that I'm not allowed to have it. I've been told their flu shots. I actually all of my doctors have basically told me no to the COVID-19. They said there's just not enough research yet to know how it's going to affect somebody with an autoimmune disease. 

Kelly  
Well, I think the tricky part, right is because you have an autoimmune disease. So it's not that these vaccines aren't safe and effective for the majority of the population. But for those with a rare disease like yourself, and it's a different story, and it actually in in a lot of ways makes it even more important for all of us that don't have a rare disease or some other allergic issue or whatnot to get vaccinated because that's our way of protecting you.

Jennifer  
Well, and that's the that's the thing. I tell everybody. I'm like I can't do it, but please if it doesn't go against your grain, whether political, health wise, whatever, please go get your shot, like I will celebrate you getting your shot, I wish I could. But the doctors have all told me at this point, I'm in no position to do it.

Kelly  
Yeah. And that makes sense to me from the auto immune side, just because you, you don't have a normal immune system anymore. So those are those are those kind of rare cases where you do hold off for or maybe never get it because you're just not sure how that's going to work and create more issues. So I think about that and you and I talked about this a while ago of how important it is then for the rest of us. So especially if we're coming to visit, or whatnot, we're not carrying some virus with us, and giving it to you, because we've also been vaccinated to make sure that we don't get the virus or at least if we do have it, we're aware and fewer symptoms. And then know we're not bringing it to you or anyone, you know, in a situation like yours.

Jennifer  
Right. And that's the thing I'm counting on right now. I mean, somebody in my particular situation, we're counting on herd immunity, you know, we're counting on all of the rest of you that can have the shot to do it. Because we can't, we'd love to but we cant, so.

Kelly  
So how does that impact you going out in the world? No, we're still in a in a pandemic. I mean, it's not the height of it any longer. But we we don't have herd immunity, we don't have the majority of the US much less the world vaccinated. So does that have an impact in terms of, you know, when you go out or who you interact with just as an extra precaution for yourself?

Jennifer  
Yes, it does. You know, fortunately, or unfortunately, for me, I'm currently in a position due to the Guillain-Barre that I cannot drive. So I have to rely on either delivery people like instacart or, you know, I'm sorry, if I'm not allowed to mention name brand name Okay. I can't on delivery for most things. And, you know, otherwise, I have a my aunt and my mother, you know, when my mom's not dealing with my father's health issues, because he has some of his own. You know, I pretty much rely on the kindness of others. And I always wear a mask when I go out. I always have hand sanitizer when I go out. Because I mean, I mean, just because somebody else had their shot, doesn't mean everybody else did, and I need to protect myself. So I'm a lot more proactive than probably most people because, you know, and I think even during flu season next year, even if everybody's vaccinated, I'm probably still gonna need to wear a mask because I can't have a flu shot.

Kelly  
Yeah, that's a good point.

Jennifer  
So I, you know, I'm just gonna have to, you know, forever be mindful about making sure I'm taking the right vitamins, making sure I have the right diet and making sure that you know, whoever I'm exposed to, if they didn't have the virus, you know, maybe they ask for me, or I'll wear a mask.

Kelly  
I say, sounds like you're sporting some stylish masks for the rest of your life.

Jennifer  
Yeah, pretty much. And you'd be surprised there are some pretty stylish masks. Now I just need to get an ASA one in my life. 

Kelly  
There you go. I've seen a couple out there. I have yet to find what you know, the right one. But yes, I'm getting some ASA's ones will be fun. Some of our collegiate chapters have had some amazing ones that I have seen. Oh, those are really cute.

Jennifer  
Either that or even just the raggedy annewe'd be happy. And I realized most of the throughout he does ladybugs now. But it was raggedy anne when I was there,

Kelly  
I was saying you're not you're reaching into the archives. They're a bit because you know i raggedy and was very much an older mascot for Alpha Sigma Alpha in the mid 90s, I would say is when we kind of started to shift more towards the ladybug. And now we have our official mascot Dot the ladybug, as well. But to Yeah, you were digging in. I remember I had lots of raggedy anne's as well. You're aging us, Jen you're aging us.

Jennifer  
Well, I don't mean to.

Kelly  
So before we wrap up here, you know, what are some other kind of parting thoughts you want to share with folks, you know, whether they have friends that have a rare disease, or they're a caregiver or anything from your perspective of you know, this is what you have learned and what you want to make sure you pass along to others.

Jennifer  
I guess the biggest thing would be like I'm very stubborn and I very rarely ask for help. 

Kelly  
No, you don't say?

Jennifer  
All I'm gonna say is don't be afraid to ask for help. It really is okay, because most people want to help you. They really do. You know, and it's not it's not a financial thing. It's more of like, I just need to get to the market. I don't want to have to rely on instacart, you know, or, you know, stuff like that. Definitely, you know, when when if the world ever gets back normal, go donate some blood, it may not help somebody with Guillain-Barre, but it might help somebody else that really need that, especially your child, especially if you have a rare blood type. You know, that's really important. And one of the things I learned my brother actually had COVID-19 this year, and when he was diagnosed, the blood, the Red Cross called him multiple times to come to blood because he had the antibodies in his blood. 

Kelly  
Yeah, that was a big push. I remember that.

Jennifer  
Yeah. So yeah, definitely give blood, definitely not be afraid to force yourself on a friend that might think they need help. And just Just be aware that there are these rare diseases out there. And that, you know, not every disabled person is trying to take advantage, you know, they really are disabled, it just may not look like that.

Kelly  
Whereas adjustment, you know, we I teased you about being stubborn, I'm sure that contributes quite a bit to recovery as well, because it gives you that extra determination to not give up. Which is is also important, but I can appreciate that it can also be hard to have to ask for help.

Jennifer  
Well, it is, you know, you know, you live in pretty independently most of your life, and you don't really rely on other people, then all of a sudden, you have to, you know, it's it's a it's an interesting learning curve, for sure.

Kelly  
I think one of the great things that you have shared, which warms my heart and gives me hope is there's there's still a lot of kindness out there in the world, we may not necessarily see it every day on television. But there there's a lot of kindness out there in the world. And we just need more people to be more kind and in every way, shape and form.

Jennifer  
Well, I agree with you, you know, I have never been shown so much joy and compassion and in love as I have in this last year. And so, you know, yes, please just be nice to somebody that might know, even if you just beat them on the street, and you think, Oh, well, you know, even just a smile might make their day, you know, you just don't know. 

Kelly  
That is very true. 

Jennifer  
Kindness goes a long way.

Kelly  
It does. And we need more of it in this world as well. I think that's, you know, one thing, I've always known that but as I've looked over the last couple of years thinking we just need to need to find more kindness and find that the good in each other and, and just that the general respect for each other. We may not always agree, and that's okay.

Jennifer  
And well it's not necessarily gonna always agreeing, sometimes it's just about having a conversation with somebody that may change their point of view, you know, you just never know. 

Kelly  
And I think you know, folks like you and others sharing their personal stories, regardless of what the situation is. it humanizes everything, and it helps someone else see the world through another person's eyes and understand that I mean, you've gone through a significant life change. And I can't imagine what that is like. But it's certainly helpful to hear your story. And as I mentioned earlier, and you and I have talked before, elements of your story, were helpful for me as I was preparing to help my mom through her surgery and just knowing that, you know, seeing your progress, and how well you did is is also inspiring and motivational for people.

Jennifer  
Well, thank you for saying that. I really appreciate that. Yeah, hey, and I just want to say the listeners, anybody wants to hit me up or ask questions, I'm happy to share. You know, if anybody wants more information? 

Kelly  
Absolutely, we can definitely connect listeners. Is there an easy way for them to connect with you that you want to share?

Jennifer  
Yeah, my email is probably the best way it's [email protected] and again,  [email protected] 

Kelly  
And I will put that in the show notes as well so that if people didn't catch it when they heard you they can go back and look at the show notes and pick it up there as well. So that I think that is helpful because I think you know we've got I'm sure we've got members out there and other health issues that just may find a connection maybe with it not necessarily having Guillain-Barre, I see I did screw it up, Guillain-Barre  syndrome I should just say GBS, but something else that they hear from your story and saying, Oh, you know what, I want to chat with her. I've had a similar challenge or just want to connect with somebody else that understands what this is like.

Jennifer  
Yeah, because we're I mean, anytime you're dealing with a rare disease, I mean, you know, until you know for sure what you're dealing with, it's really stressful. And so I welcome any of those messages or no, I don't know if I'd even be able to do anything but sympathize. But, you know, they are rare, and they're hard to diagnose. And I was very fortunate. But, you know, some people might, some people might need help navigating that so

Kelly  
well, it's just the connection, right? I think that feeling of having someone else to talk to is exactly the deal. Well, great. Well, Jen, thank you for joining me today. And thank you for being willing to share your story with everyone.

Jennifer  
I'm happy to do it and Hello, ASA sisters, it's wonderful to spend some time with you today.

Kelly  
Maybe we'll get you to the Baltimore convention next summer.

Jennifer  
That would be lovely. I would love it.

Kelly  
And well, I will hopefully see you there. I will be there. And to our listeners, until next time.

Transcribed by https://otter.ai