Episode Transcript
Hello, my name is Aziz and I'm the son of a divorced mother.
She is really my superhero.
That's why it's important for me to support women to share their uniqueness, their personalities,
perspectives and emotions about this world.
In these difficult times in human history, we need to bring the people of the world together.
And when we hear the voices of women, when we listen to real lives of women from other countries,
we connect our cultures without differences or stereotypes.
And we get inspired by their stories to live a better life.
That's what this podcast is all about.
My guest today is Jenny Weaver.
Jenny is a content creator, a podcast host and an arthritis and psoriasis advocate from Kalama,
Washington state in the USA.
Her hobbies are painting, hiking and content creation.
Jenny, how are you today?
I am doing well. How are you?
I feel happy. I feel blessed.
I feel very excited about our time today and really looking forward to know much more about you.
So I'll begin with this nice first question.
If your friends and the people who know you best could describe your personality,
what would they say about you?
I think what they would say is that I am pretty bubbly and I come across as a little bit shy.
But once I've been around you for a while, I'm going to open up and probably drive you a little bit crazy,
constantly singing, always trying to be fun and playful.
But I'm one of those super supportive people that is always in your corner.
I love that. That sounds absolutely wonderful.
And just to ask you, what's the backstory behind that?
Because often people who are most supportive are ones who had a story that made them realize the value
and the importance of being supported, whether it was your own situation or to someone that you supported
and you were wowed at the reaction.
Or how did Jenny become the supportive Jenny she is today?
Really, I think it goes back to my diagnosis with rheumatoid arthritis back in 2012.
And I lost friends.
I lost people over time that either could not handle my constant problems with being sick,
didn't understand it, could not relate to it.
I even had a friend once tell me that she couldn't handle being friends with me anymore.
She could not handle the thought and the idea of losing another person in her life because she had lost her husband to a rare cancer.
And so that made me want to be there for others so that they don't feel alone when they're going through a chronic illness.
I can't even imagine how that would feel.
It sounds very, very hard.
And I know that mentally and emotionally, that must have been very hard for you.
And really, it led you to a transformation where you chose to be better rather than being bitter.
And even now, when you're making good friends, what kinds of people do you believe are the right people that can handle being friends with you?
If we might say it in this way, who are your people in this world and reality?
I think anyone that is a little bit quirky wants to have some fun and probably do some outside of the box things.
I'm over on Instagram a lot working with other chronic illness warriors and with the podcast My Spoonie Sisters.
And so I do a lot of fun things.
We do reels with spoon toss challenges.
We're always coming up with something crazy to do.
So you definitely need to be comfortable in your own skin getting outside of the box.
I love that. That sounds absolutely wonderful.
And can you tell me, too, how was your evolution from being someone who is dealing with something difficult like that to become someone who's an advocate for it with your own content, podcasts, et cetera?
Because I don't believe many people are born and they're like, oh, my God, I'm a baby. I want to be a podcaster.
There is like a journey through it of discovery.
So how did you go through that?
Absolutely. Yeah, that actually began over a year ago.
I met a gal that had her own podcast and it was called My Immune System Hates Me.
And she had me on as a guest and I fell in love with it.
I fell in love with the community and she was such a joy.
And she even had like a monthly group that we would get on and in Zoom and support each other through our rheumatoid arthritis.
And when she told me that she was stepping down and closing her podcast, I saw what was going to be a void and needed to be filled.
People had encouraged me to get outside the box and to try these kind of things.
But I'd always said, no, not me. I'm not the right fit.
But after being on her podcast as a guest and finding out she was closing it down, I thought, why not me?
People do this all the time. Why not me?
Why don't I step up?
I love that sense of initiative.
And are there stories that you know of people who are dealing with some difficult illnesses or some difficulties in life that reach out to you and told you how much you have impacted them?
Can you share some of those?
Because some people who are not creating content that is helping others cannot imagine the gratitude or the stories you might hear, et cetera.
Yes, actually, I've had several people reach out to me.
Either they knew someone that knew me or they stumbled across me somewhere.
But what they all had in common was they had the same rare diagnoses that I have.
I had an allergic reaction to what's called a TNF inhibitor.
It's a biological infusion that I was taking for my rheumatoid arthritis.
And ultimately, if you're exposed to it too much, it causes you to have what's called Palmer pustule.
I'm going to butcher it.
Basically, pustule psoriasis is another dumbed down version for it.
And it's not quite as rare as we thought.
Unfortunately, it's a lifelong problem I'm going to have.
It's quite painful for the skin.
And so I've had several women come to me and say, hey, I have this problem too.
What have you done?
What works for you?
What has helped you?
Thank you so much for being here.
I'm so glad I found you.
And right away, I send them all the links for all the things that have worked for me and have helped me.
And I look at it like such a blessing that I have the opportunity to help someone not be in so much pain.
Thank you. Yes, I agree with that perspective.
That is very empowering to see difficult things in this world as a blessing, as well as you have something like you said that you have to be challenged by for a long, long time or your whole life.
How do you deal with days where sometimes you feel you had enough and you're like frustrated in the world, the universe and reality and woe is me and why me?
How do you overcome those and keep yourself bubbly like you said you are in a positive state?
Well, I want to start by saying I'm not always bubbly.
So once in a while, I do fall down that rabbit hole of woe is me today as a horrible day.
But usually when I have a day like that, it's because I'm in a really bad flair.
I'm in a lot of pain.
And really, I either just make that a Netflix and sleeping kind of restful day or I tell myself, OK, you know, I need to to get outside of my head right now.
And I'm going to go for a walk because movement is medicine and it's important to do.
But I also reach out to a couple of my spoonie sisters.
We have like a chat going all the time.
We ask each other for prayers.
We encourage each other, send each other funny videos, all kinds of fun things.
And so if I'm ever having a really rough time, I reach out to them because either they're going through it, too, and they know exactly how I feel and we can complain together.
Or they're going to say something totally off the wall funny and just make me laugh and get outside of myself for a moment.
That support is so important.
And you're actually doing that and providing that through your content and your broadcast to many, many women and people in general who are in the same boat.
And I thank you for that, as well as to ask you a bit more.
You said and you mentioned that some of the things that you're going through are not as rare as we once thought.
Can you talk a bit more about that?
Can you say how like known it is that those are not as rare as once thought?
And how did you know and discover that they're more common than expected?
OK, yeah. So when I had the allergic reaction, initially we thought it was like a skin infection.
And I went in for my next infusion to see my rheumatologist, and she actually went and grabbed a couple of the other rheumatologists in the office.
And they came in to explain to me what it was.
And they said, we rarely see this.
In fact, they'd only seen it once in their office.
But it is an allergic reaction to TNF inhibitors.
And when you have that allergic reaction, it causes your skin to get pustules, to get blisters, and it can go all over your entire body, head to toe.
And it kind of looks like a burn from the inside out as it peels like an onion.
And for the longest time, I thought I was super rare, pretty much the only one.
And the next thing I know, all these women come to me and they're like, I had the same reaction, same medication, same problem.
Can't take these TNF inhibitors anymore.
I'm running out of options for medications to help me with my rheumatoid arthritis.
And so, yeah, I mean, that's really how I discovered it's not quite as rare as we think it is.
It's happening to a lot more people.
Thank you.
And I appreciate you sharing that because some women who are going through the same or something similar would want to know that they're not alone.
And it's not as rare as they might think, because then they will feel very, very lonely in their challenges.
And you said when a woman reaches out to you and she says, oh, I have been I am going through something similar.
What helped you? You send them all the links.
Can you talk about a few things that have worked for you that maybe someone who is coming across this podcast, who needs to explore that more and read more about that, would love to?
Yes, absolutely.
So one of the things that I found, I actually found it from my brother-in-law who has psoriasis.
And it is called Utter Balm, and it is a hand lotion that is extremely soothing.
It is the one thing that has not irritated my hands or made my hands feel like they were on fire.
I had dermatologists try all kinds of ointments, creams, sprays for my skin.
They all made it feel like it was on fire.
It was terrible.
But this is the one thing that just felt like, I don't know, I don't even know how to describe it.
Just absolutely soothing, no burning whatsoever.
And I buy it off of Amazon because I can't find it anywhere local to me.
It comes in a little like two ounce tube.
It's like magic.
And then the other product that I found, I can't remember the name off the top of my head, but I have it saved.
And it is a little tube that my hairdresser told me about.
And it has, I think, peppermint and some other miscellaneous things in there.
And it's a solution to put on your scalp that helps with the burning and the stinging in the scalp.
And ultimately, it kind of helps with that to heal faster.
I'm so happy you discovered that.
And I hope for the right person that would love to research that more and try it out and that it will make
a big difference.
And you as a content creator, I'm wondering how is that lifestyle for you?
How do you deal with sometimes maybe running out of ideas or not knowing what you're going to talk about or create content about?
Or is it because of the spoony sisters?
As you said, it's just you talking together.
There is always new topics, new things to discuss.
So it's an everlasting, evergreen kind of content creation group of friends and people.
Yes, for my personal account, I honestly just kind of go off of what is going on with myself.
If I'm struggling more with my joints, I'm probably going to be talking more about that.
If I'm struggling more with my skin or anxiety, I'm probably going to talk more about that.
And so it just kind of it's an evolution of whatever's going on in my life.
And I've noticed that with a lot of my my fellow friends.
And then over on the podcast side, yeah, a lot of it is promoting and talking about the people that I'm sharing an episode with.
And so, you know, I put together sound bites to share and I give a little bit of background story on them.
But then to go with that, we get together and we do these spoon toss reels.
And and so, yeah, we'll just record little clips where we make it look like a spoon is being tossed to us and then we're throwing it back.
And I crop them down, put it together and then we have a reel.
But once in a while, someone comes to me with an idea of, hey, next month, let's let's focus on some mental health stuff.
Let's promote that and let's do like a five day challenge.
And so, yeah, I mean, it really is a lot of us working together and a lot of it circles around what's going on in our lives at the moment.
Thank you. I love that. I love that very, very much.
And you, as someone who seems to have this thirst for more life, a hunger for more, let's say, and that you're defiant and defying all the limitations.
What made you stay living in Washington state, for example, in the place that you're living right now?
I mean, I understand that you might have a challenging situation, but have you considered or done something like eat, pray, love,
where you go tour Asia and Europe and all that to explore the world and face adversity everywhere and build memories?
Or what is the comfortable thing or the good thing about staying put and more in one place?
Well, we've kind of stayed put because of in the beginning it was our children being in school and now they're all young adults and they're all off living different locations.
I have one daughter in Arizona, one that's going to be in Idaho.
My son is also in Washington, but a different part.
And so it really just revolved around keeping the family together and time together.
But also, my husband's job is here, and so there's not a lot of options to leave because his job is important and he's happy with what he does.
And I fully support him every once in a while.
I wish we lived somewhere warmer where I feel like my joints and my skin would be a lot happier.
But ultimately, you know, spring and summer are the best time of year for me.
And and so I just kind of roll with it.
But I love when we travel.
Last month, we went to Hawaii and it was wonderful and I did not want to come home whatsoever.
I definitely have not done an eat, pray, love kind of thing.
I think that that that makes me kind of nervous.
I am not I don't like to travel alone.
I don't know what it is. I just don't like it.
I get anxious. I feel like I'm going to easily get lost.
But I I look up to the people that can do that.
I admire them. Maybe someday I'll get comfortable enough in my own skin to do that.
That's not me right now.
Yeah, I don't know if I answered your question really well or not.
You did. Thank you so much.
And a word or an idea or a perspective,
I don't know what you might have related to women's confidence.
Nowadays, there are many women who may be because of the social isolation in the pandemic
or social media or whatever it is.
They compare themselves to others and feel ugly and they feel unworthy and they feel stuck in life.
What encouraged you or allowed you to live life more fully and believe in yourself more?
Although you could have compared yourself to a lot of other women.
And what's your advice to women who are feeling that for whatever reason so that they will break free?
Yes, I think no matter what, we all tend to compare ourselves, whether we mean to or not.
You know, there's always someone prettier than you, always someone smarter than you,
you know, someone more talented.
There's always something and you need to find a way to get more comfortable in your own skin
so that you're not being brought down by that.
And I think a lot of women, we face traumas and different experiences that have put us where we are.
And ultimately, I feel like we have to just claw ourselves to the top and climb out of that hole
and stop comparing ourselves to other people because there's always going to be somebody better,
someone better for the job, someone, I don't know, I just at the end of the day,
it doesn't matter what I look like, it doesn't matter what I'm doing
because someone out there is going to like it and someone out there is not going to like it.
So find what works for you.
Find what brings you joy and do that.
Do more of that.
I agree 100% fully and completely.
And maybe from another angle, you're someone who is involved a lot in social media
and content creation and podcasting.
Do you feel or believe that that is a pathway for women to when they express themselves
on social media authentically and share their vulnerability,
it will make them more whole and it will allow them to mend a lot of the broken like self-esteem.
Is that a good way to share more of your truth so that you heal any kinds of traumas,
not like a therapy or a psychiatrist, but do you know what I mean?
Yeah, absolutely.
I definitely think therapy is a wonderful tool, finding, I don't know,
that person that's going to help you work through your traumas, super healthy, super important.
But I also think that being present in social media, you can show your truth.
You can share who you are and there is some healing in that.
And finding people that are dealing with the same things as you, there is a healing in that.
And so it's a little bit of a mixture of sharing yourself, being authentic,
but doing the work that is so important as well.
I agree 100% and I recommend everything you said.
Thank you, Jenny, for sharing your perspective, your experience, your story and your thoughts.
It's my privilege and my honor to have you here.
And I wish you to keep going always and to have always better and better and better days.
Thank you so much. I appreciate it.
