Finding Light in the Shadows: Living with Solar Urticaria and Self-Compassion

In this episode of Beyond My Diagnosis, I sit down with Jeannie Taylor. We went to undergraduate university together in Kalamazoo, Michigan and now she is here with me having a conversation on 'Beyond my Diagnosis'. Jeannie is an actor, educator and artist living with a rare condition called solar urticaria—a severe allergic reaction to sunlight. Jeannie opens up about her years-long journey to diagnosis, the emotional and physical toll of living in partial darkness, and the creative ways she continues to find joy and meaning.

We talk about identity, self-advocacy, and how art became both a refuge and a form of resistance. Jeannie reminds us that healing isn’t always about “fixing” what’s broken—it’s about embracing what still shines.

You’ll learn how to:
 • Understand the emotional weight of invisible illness
 • Navigate medical systems when answers are hard to find
 • Build a support network rooted in empathy and shared experience
 • Reclaim joy and self-expression even in the face of limitations
 • Transform adversity into art, advocacy, and acceptance

Transcript

[00:00:00:00 - 00:00:01:15]
 (Music)

[00:00:01:15 - 00:00:29:07]
Michele Weston
 Hello, this is Michelle Weston with a blueprint for living with a chronic condition. I've been talking to you guys for a couple of years now, and chronic conditions come with no directions. They come with a label, but they don't really come with directions on how to, on where do I go, on how do I find it, on who has the best,

[00:00:30:17 - 00:00:38:13]
Michele Weston
 and how do I navigate this. Probably why I like patient advocacy and navigation, probably why I like helping one's coaching.

[00:00:39:18 - 00:00:52:17]
Michele Weston
 But I have somebody on today that when I finally saw her after three decades, and we met over on the west coast or the left coast, those of us in New York like to call it the left coast,

[00:00:54:07 - 00:01:20:05]
Michele Weston
 Jeannie told me of a condition that she had that I was like, "Wow, I've never run into somebody who has had this, but I bet you there are women listening and men listening who have this condition, and understand something, this didn't show up for many decades." So, Jeannie,

[00:01:21:15 - 00:01:33:14]
Michele Weston
 what happened that you sort of suddenly had this skin condition, and should I say it that way? So I'm going to let you take the floor. What happened?

[00:01:34:23 - 00:01:40:08]
Jeane Taylor
 Well, it was very strange. I would tell you that I'm a middle-aged lady.

[00:01:41:21 - 00:01:54:02]
Michele Weston
 But Jeannie has the most beautiful long blonde hair, teaches psychology, acts a lot still, quite wonderful, was wonderful when she was acting when we were in college. So yes, she's actually good at what she does.

[00:01:54:02 - 00:01:55:20]
Jeane Taylor
 Thank you, Michelle.

[00:01:57:04 - 00:02:08:20]
Jeane Taylor
 So I just mentioned that because I was at the tail end of menopause. After you go through menopause, you're pretty much, well, anything in the world could happen. I don't know what's going to happen next.

[00:02:09:24 - 00:02:16:10]
Jeane Taylor
 I was in Phoenix visiting a best friend from Michigan, just on a visit and we're walking outside.

[00:02:17:11 - 00:02:42:16]
Jeane Taylor
 It was 2019 and she's like, "Ooh, it looks like you're getting sunburned." That was odd. I looked at my skin because we hadn't been out long, and I was like second-degree sunburn all of a sudden. Wow. When I moved my strap of my little, my top, it was like white under my strap. My body had the sunburn color and it was hot. I felt hot. Wow.

[00:02:43:17 - 00:02:47:01]
Jeane Taylor
 Yeah. So we went to urgent care because something was happening.

[00:02:48:04 - 00:02:50:07]
Jeane Taylor
 It wasn't like going away.

[00:02:51:22 - 00:02:59:22]
Jeane Taylor
 They gave me a couple of Benadryls and they said, "If you're not better in two hours, go to the emergency room." Which when you're on vacation, you really don't want to do that.

[00:03:00:24 - 00:03:10:03]
Jeane Taylor
 But two hours later, it went away. Then it never happened again, Michelle, till 2022.

[00:03:11:21 - 00:03:14:05]
Jeane Taylor
 It happened weird. That's weird. Yes.

[00:03:16:05 - 00:03:18:16]
Jeane Taylor
 It was kind of odd because my.

[00:03:21:03 - 00:03:40:08]
Jeane Taylor
 If you remember, and I'm sure you do, COVID happened. Well, gosh. Yeah, I think we all remember. We're all shut in, right? We're all shut in the house. It's finally time to go out. Yay. I go out. It's 2022 and I get this red rash outside.

[00:03:42:01 - 00:04:24:01]
Jeane Taylor
 Ironically, weirdly, I can't go outside after COVID because I'll get this rash. Wow. The rash is a rash that looks like red swelling. It's different than most people's rashes they get with solar urticaria. Okay. Most rashes are bumpy. Mine is a red swelling that is very painful. The pain you might feel if you sprain your ankle. That's like the swelling pain. And so that was odd. And then it just consistently happened every time I went outside. And I just was in total freak out because that's not right. No. You know? Very right.

[00:04:25:01 - 00:04:32:02]
Jeane Taylor
 And it was like March, April. So it wasn't like the height of heat here like in September.

[00:04:33:12 - 00:04:35:00]
Jeane Taylor
 So I went, I had.

[00:04:36:21 - 00:04:38:24]
Jeane Taylor
 I went to an allergist. Okay.

[00:04:38:24 - 00:04:42:10]
Michele Weston
 That would make sense. Just in case it was an allergy. Right.

[00:04:42:10 - 00:04:43:06]
Jeane Taylor
 Right.

[00:04:44:07 - 00:04:54:23]
Jeane Taylor
 And they gave me the, I went to an allergist and the physician's assistant there had never seen this.

[00:04:55:24 - 00:05:01:00]
Jeane Taylor
 So when people don't know what it is, a lot of times they say,

[00:05:02:09 - 00:05:04:11]
Jeane Taylor
 have you had a butterfly shaped rash?

[00:05:05:14 - 00:05:10:09]
Jeane Taylor
 Because they're going towards lupus. Okay. Right.

[00:05:10:09 - 00:05:12:14]
Michele Weston
 So they're throwing darts at the board.

[00:05:12:14 - 00:05:40:09]
Jeane Taylor
 And isn't that alarming, right? Completely 100 percent healthy person. No problems at all. And you go outside, you get a red, red skin. And then you're hearing these horrible, you know, pretty severe, like immunology, you know, diseases thrown at you. So then the allergist came in and the actual doctor and he was like, you know, it's possibly urticaria.

[00:05:41:12 - 00:06:00:09]
Jeane Taylor
 And so then what he recommended was Zolair shots. But Michelle, to get Zolair covered on your insurance, you have to go through a bunch of other medications like prednisone. You have to take that.

[00:06:01:09 - 00:06:16:03]
Jeane Taylor
 You have to rule out two other ones. Montelukast, M-O-N-T-E-L-U-K-A-S-T, which made me crazy, Michelle, crazy.

[00:06:16:03 - 00:06:34:23]
Michele Weston
 Well, sometimes drugs can do that in your head, right? It's something and suddenly, you know, like when I had MS and they gave me... Avonix, Avonix was one where he said, I need to know if you feel suicidal. I said, well, how would I know that? He says, oh, you'll know.

[00:06:34:23 - 00:06:36:00]
Jeane Taylor
 Yeah,

[00:06:37:03 - 00:07:06:04]
Jeane Taylor
 that's what happened. Yeah, I felt like really like not. Yeah, I felt, you know, like very, very depressed, let's say. And then I had to try the hydro X, Y, Z, I, N, E. And so they had to rule those out, Michelle, in order to say, you know what, these didn't work for urticaria. She, we strongly recommend Zolair, which is X-O-L-A-I-R.

[00:07:07:05 - 00:07:14:14]
Jeane Taylor
 And I'm doing it at 300, I guess it's... Milgrams? Milgrams. A month, every four weeks.

[00:07:14:14 - 00:07:19:04]
Michele Weston
 So once that... Is it an infusion? Is it an injection? It must be an infusion for 300.

[00:07:19:04 - 00:07:32:00]
Jeane Taylor
 Injection. And it's two shots. So they've got them preloaded, right? And they give me one in the back of each of my upper arms. Okay.

[00:07:33:12 - 00:07:37:02]
Jeane Taylor
 Once a month. And then I take also, which has been very helpful,

[00:07:38:08 - 00:07:39:15]
Jeane Taylor
 over the counter,

[00:07:40:22 - 00:08:17:07]
Jeane Taylor
 Allegra for rash. And it's 180 milligrams. And I take that every day. And if I know I'm going to be out more than a little bit, I'll take one allergist that I could take. Take four, take eight, you know, like a lot. But I know I don't do that. And then the other thing that helped me beyond beyond was getting my windows tinted on my car. Because I would drive somewhere, I'd have a rash while I'm driving, which is very freaky. And then it takes like two hours to feel normal again. So that is not a lifestyle.

[00:08:18:22 - 00:08:29:22]
Jeane Taylor
 And then the other thing that really helped me was the Coolie Bar clothing, the clothing with the SPF. And it couldn't be any clothing. I'm not like, you know, working for that company.

[00:08:29:22 - 00:08:33:12]
Michele Weston
 But how do you spell it though? So people want to look it up and need some.

[00:08:33:12 - 00:08:51:01]
Jeane Taylor
 Like you're cool, Michelle. C O O L I B as in boy, A R Coolie Bar. And there's other, you know, things you can find on Amazon too. But that was the one that my friend who had had skin cancer recommended.

[00:08:52:01 - 00:09:24:21]
Jeane Taylor
 And I really liked their umbrella. I liked their whole outfit, the pants, the top, the little coats, the rash guard for your arms, a little gloves without the fingers. And I pretty much that's what I look like if I ever leave the house. And so that is I kind of have a out of the house uniform that I have to put on. That's hard because I was like, you know, we're creative people. We express ourselves through our outfits. And that had to kind of I kind of lost that. And that was part of, you know, that's like a grief thing.

[00:09:24:21 - 00:09:28:20]
Michele Weston
 And then it is because you lose a part of your eternity. I got it.

[00:09:30:15 - 00:11:22:07]
Jeane Taylor
 And so what happened was what I recommend people do and what I did was I did every blood test under the sun. I had every bacterial test. I did a 24 hour urinalysis. I had a ultrasound of my abdomen. I had everything, every single thing that could possibly be wrong with me tested for. And everything was fine. And so the and oh, I had all the pinpricks of the allergies 82 for insect. Got on the back. Did they do it on your back? Oh, my God. Crazy. Allergens and outdoor. I'm not allergic to anything. So then. That's the sun. So then the diagnosis is, well, you're just allergic to the sun, I guess. Or UV light, because if I sit next to a window that's not tinted, I'll get a rash. And you know, sometimes it just feels like for our lovely menopause ladies out there that we love and have so much compassion for, it can feel like you're going into a hot flash. That's what it feels like. And then it just starts to hurt. Mine does. Other people got itchy. I had a friend. She's about my age and she was like, oh, I get rashes. And she was the first person I met in four years that had this. Wow. And I'm doing this podcast because I could not find anyone like to reality check myself with. So hopefully, if you know, if one person hears this and it helps them, I'm so happy. But she's like, yeah, I got the allergy test, the pinpricks. Yeah. And I found out I was allergic to bananas and eggs. And so I stopped eating those and now I don't get the rash. And so I thought, oh, well, I'm going to do that. And it's like, oh, that wasn't me. You know, so I don't know. God forbid, right?

[00:11:22:07 - 00:11:32:04]
Michele Weston
 But it is, you know, science still is science. And that's why when people get upset, like, sorry, but I'm going to use COVID, the vaccine. You know what?

[00:11:33:08 - 00:11:59:12]
Michele Weston
 Sometimes we don't know. They had been working 10, 12 years at the NIH, the National Institute for Health, and knowing that there were more things that were going to come our way. And they're always trying to stay a step ahead. But sometimes, like you and I discussed, they have to Google things, too, which is scary when it's your doctor. You're like, what do you mean you're Googling this?

[00:12:00:14 - 00:12:17:21]
Michele Weston
 I thought you were the doctor. Well, doctors have clay feet, folks. And sometimes, well, nobody can know everything. Honestly, I just I'm a surgeon's daughter. I'm going to say that they cannot know everything. You hope that they're good diagnosticians.

[00:12:19:00 - 00:12:44:24]
Michele Weston
 That's the key, right? So if you had a good diagnostician who kept pushing, doing all these tests, does it seem over the top? Sure, Janie. But if they can't find it, they have to go through other avenues. So they keep looking. Do you love when they said it could be lupus? Lupus is scary. Who the heck wants to hear lupus? I mean, but I did meet him a woman who's had it for 24 years.

[00:12:46:02 - 00:12:59:01]
Michele Weston
 She's done really well. But if you saw her skin, Janie, it's just so like paper thin because of the medications. And everybody,

[00:13:00:01 - 00:13:13:06]
Michele Weston
 BODY, everybody, I should say, reacts differently. Um, you have to be proactive. You have to keep trying. You have to keep doing.

[00:13:14:07 - 00:14:29:10]
Michele Weston
 And sometimes they don't know what it is. I know you said that you had one hospital that wasn't a great experience. What was important was that you said, no, this isn't the right doctor. This isn't the right fit. You were an advocate for yourself. And so you kept looking. Well, that's called also common sense. That's also remembering that doctors have clay feet. They are not on top of statues. They are humans and they're not always right or they don't know everything. So what's important is to support them and to find one that you that you connect with. Honestly, you know, and if you're in those hands now, you that whoever you're with now going for Zolair, thank God. I mean, I had, you know, this with Prolia. They would not give me Prolia for my osteopenia, osteoporosis, osteoarthritis. But I'm a drop foot MS patient who trips and falls and I'm older. I'm over 50. So they came back because this is what health insurance does. Jeannie, welcome to health insurance because I know too much about this, unfortunately.

[00:14:33:19 - 00:14:38:15]
Michele Weston
 They came back and said, well, if you use Prolia, it's going to be off label.

[00:14:40:09 - 00:15:33:12]
Michele Weston
 No, it wasn't. Prolia was created just like your drug for osteopenia, osteoporosis and osteoarthritis. That's it. That's what it was created for. So I'm like on the phone with, you know, the health insurance company. I said, which part is not on point? Because this doesn't say they're giving this to me because of my multiple sclerosis or bariatric surgery. So she wrote osteoporosis, osteopenia. Those are the X-rays you were sent. That was it. So doctors have to keep sometimes fighting the good fight. We tried a couple of medications like you did, and you have to keep fighting. And you have to pray to God when you have a good doctor. That they keep fighting and not everybody is in the mood.

[00:15:34:13 - 00:15:38:12]
Michele Weston
 And it's a pain in the butt. They also have really good staff, right?

[00:15:38:12 - 00:15:45:10]
Jeane Taylor
 Yeah, Michelle, that's the point. Yeah, this staff at this doctor's office,

[00:15:46:11 - 00:15:48:06]
Jeane Taylor
 Dr. Kevin Farnham in Pasadena,

[00:15:49:15 - 00:15:50:13]
Jeane Taylor
 has allergies.

[00:15:50:13 - 00:16:08:21]
Michele Weston
 Really? If he, if Dr. Farnham in Pasadena, California, was in the mood, was helpful, was a good diatussition, would go to bat for you, had a team that was scrupulous and would not give up, I'd want to be with that doctor. They refiled, they reapplied, they got the zone.

[00:16:08:21 - 00:16:17:24]
Jeane Taylor
 Look at that. And they knew the hoops that I had to go through. And they, you know, and I cooperated with the hoops. That's called being compliant.

[00:16:17:24 - 00:17:42:24]
Michele Weston
 So you guys, when a doctor, you know, is looking for compliancy, they're looking for you to take their advice to heart, try and do as much as you can. If you don't understand something, please, please ask for them to reframe something. And I'm just going to say, I mean, Jeannie, you didn't have to do that. But if something is like that, ask them to reframe. When I go for appointments this time, so I'll watch somebody's whole body language and the shoulders go up and the doctor will say, do you understand what you're going to do for the next six months? And they nod their head yes. And I know their body language is this. No, I have no idea. And I have to butt in because they've hired me and say, Dr. Jones, Ms. Smith, I don't think it's clear on what you're asking her to do for the next six months. Could you reframe that? Sometimes you get pushed back. Sometimes you don't. But the point of that is, is that sometimes we need to hear it differently. What do I want for patients? What do I want for humans, caregivers? I want you to become your own advocate. I want you to be able to raise your voice, know that you had a HIPAA. Jeannie and I talked about that. HIPAA was created in the 80s. It was that you had ethically rights to say no.

[00:17:44:01 - 00:18:28:19]
Michele Weston
 If a doctor said, we have to do this, this, this, and this, you could literally say, no, I want a second opinion. Now you could do that anyway. But it became something like the Hippocratic oath that doctors swear to, like lawyers swear to their oaths. It's important to understand that those were created in the 80s because we had African Americans being given disease down in Tuskegee and they were doing a study. And they weren't given their rights because they were prisoners. They were just used as like guinea pigs. No, no, no, no, no, no, ever, never, ever, never,

[00:18:30:01 - 00:18:37:22]
Michele Weston
 nobody's ever not to be heard, seen, and really respected, respected.

[00:18:38:24 - 00:18:56:18]
Michele Weston
 And you have been lucky and you have Dr. Farnham. I have Dr. Siddique. We're all looking for that match. I hope people who are listening with other conditions, with what you're talking about, can you spell what you're talking about? Like if somebody is listening and wondering,

[00:18:57:18 - 00:19:02:07]
Michele Weston
 I wonder if when I'm turning red, this is something I should be concerned about.

[00:19:02:07 - 00:19:15:19]
Jeane Taylor
 Oh, yeah. It's like they call it urticaria. You are. R, r, t, t-i. It's okay. C-a-r-c-a-r-i-a, urticaria, which just means rash.

[00:19:17:01 - 00:19:31:06]
Jeane Taylor
 And so you can have a idio, what's that word? Idiopathic urticaria. You can have a solar urticaria, which means a rash from the sun. Idiopathic means not diagnosed, not identified.

[00:19:32:13 - 00:19:35:16]
Michele Weston
 So that's close, not diagnosed, not identified. Yeah.

[00:19:35:16 - 00:19:41:10]
Jeane Taylor
 Yeah, so I'm a retired therapist, MFT,

[00:19:42:15 - 00:19:49:01]
Jeane Taylor
 and I just want to say that when, I'm going to just put that little cap on right now, just for a second.

[00:19:49:01 - 00:19:54:13]
Michele Weston
 Well, I'm glad you clarified, because I do that too. Sometimes I have to put on the other cap, and I have to qualify.

[00:19:54:13 - 00:20:04:11]
Jeane Taylor
 I'm just going to put on that cap because I'm stepping up. I'm joining you as a victim, a client advocate.

[00:20:06:06 - 00:20:10:02]
Jeane Taylor
 When we, when, I'll just say I, when I got this diagnosis,

[00:20:11:04 - 00:20:46:03]
Jeane Taylor
 and when I had all this happening to me that was unknown to myself, others, and doctors. Like, I was the only one in the world it was happening to, literally in my world. That is panicky. That is really scary. When you're in that position and you go to the doctor, like you're saying, Michelle, and your, your doctor doesn't know what it is. That's even makes you even more panicky. But Dr. Farnham, he was like, I don't know. It's just like, I'm almost like, uh, just lie to me. Tell me you know what it is. You know, so

[00:20:46:03 - 00:20:53:07]
Michele Weston
 I feel like, But they're not. You know what? I prefer that he was super honest and you know what? Sometimes they just don't know, right?

[00:20:54:19 - 00:21:03:17]
Jeane Taylor
 So like, so he, I'm joking saying that. Yeah. He really did know what it was. And that gave me a lot of relief.

[00:21:04:18 - 00:21:17:22]
Jeane Taylor
 I just know that sometimes when we go to the doctors, we can be a little anxious and we don't take in what's being said to us. So sometimes if you have a husband or a partner or someone.

[00:21:17:22 - 00:21:39:00]
Michele Weston
 Which is called a caregiver. So if you have somebody who cares about you, who gives their time, who's with you, could be your husband, your wife, your kids, your mom, your dad, you know, your uncle, I don't care. But somebody who is invested in you. And yeah, I have a husband, you have a husband and sometimes that's, that's who we bring with us to listen.

[00:21:39:00 - 00:21:49:16]
Jeane Taylor
 They can take the notes. And what I liked about Dr. Farnham is like on every visit, he gives you a handout of what was said, which is amazing. That's perfect.

[00:21:50:19 - 00:22:17:16]
Michele Weston
 He's being honest and forthright. And when I go to NYU Langone, I get the same. They send me through my chart. The notes after my appointment, which say blah, blah, blah, blah, blah, blah, blah, blah. And I at least know what to do or if there's anything that's changed, you know? Because it's hard to remember all of that, right?

[00:22:19:09 - 00:22:22:22]
Jeane Taylor
 It is when you're anxious that, you know, you lose your frontal lobe

[00:22:24:00 - 00:22:28:19]
Jeane Taylor
 cognitive ability and you go right into your brainstem, you know? So it's hard to track.

[00:22:31:09 - 00:22:54:11]
Michele Weston
 Do you guys understand why? Can you tell them why you say that? Because your psychology explained to them because people don't understand. The brain is like, has always different areas. And when we get information, especially negative information or something that we really don't know that now is just like, oh my God, do I have to worry about this? Will this change my life? She's talking about the brainstem. Why do we say that?

[00:22:54:11 - 00:23:39:16]
Jeane Taylor
 Well, I studied art therapy for a while and that's kind of where I picked it up. So when we're like our brains, our brainstem is like when you're a little traumatized and you're just cleaning and you're vacuuming the house and you're into action, you're moving, moving, moving. So and then the middle of your brain is your limbic region, which is more of your emotional area of your brain. And then your frontal lobe is your thinking. So when we do art therapy, it's like you're using your brainstem to draw the picture, whatever that is. And then your limbic area are the feelings you're putting into the picture. And then your cognitive area, your frontal lobe is when Michelle, I tell you about what I drew.

[00:23:40:24 - 00:23:52:15]
Jeane Taylor
 Okay. We're going through all of that. So when we're anxious, we're not in our thinking part. We might be feeling part or fight or flee part, which our brainstem, you know. Yeah.

[00:23:52:15 - 00:25:44:07]
Michele Weston
 And fight or flight is a big part of, especially, you know, think about how we all felt during COVID-19. It was a big fight or flight for a lot of people. Those of us with chronic illnesses were very concerned. We were concerned because if you have an autoimmune condition, which means your immune system is weakened, is compromised and you're on infusions or medications, people got scared. So if somebody was more nervous on a subway or on a bus or in a restaurant or somewhere outside and you were like, what's that person's problem? They may have actually had something that they got scared about. That fight or flight went in. Oh my God. I mean, my husband was so protective of me when we were, you know, we spent a lot of time inside. We wore masks a lot because he was worried. I appreciate that. I thought that was a very kind gesture because what do you do? You know, so scary. But it's anyone with a chronic condition. You feel like your whole life now is going to never be what it was. It may not be what it was, but you have tools and strategies and you can pivot. You can make a choice to pivot if it's about wearing different layers of clothes. Then that's what we do unless you want to be a hermit. And I don't think Jeannie Taylor would ever be a hermit. So we make adjustments and that's what this podcast is about. Living with a chronic condition in order to develop and create the best quality of life that we can have. We have to take a proactive action.

[00:25:45:11 - 00:26:17:24]
Michele Weston
 So you wear layers of clothes. You got the windows tinted. Me? I lost weight so that my drop foot, it was easier for me for balance. People make choices. Doctors are doctors. They do medicine, but I want people to learn. Maybe you need help with your stress. Maybe meditation will be a good idea. And again, I'm going to point out meditation doesn't have to be crossing your legs and saying, "Ohm, it doesn't have to be." You could take a bloody walk in the park. You could go swimming. You could take a bike ride.

[00:26:19:04 - 00:26:29:02]
Michele Weston
 Whatever it is that lets you get out of your own way and out of your head, that's how we handle stress. And we

[00:26:29:02 - 00:26:34:11]
Jeane Taylor
 use those tools, right? Michelle, I could do all of those things at night. See?

[00:26:36:01 - 00:26:36:13]
Michele Weston
 I don't care.

[00:26:37:16 - 00:26:42:00]
Michele Weston
 Then that's when you're doing it. You're taking a moonlight walk with your husband.

[00:26:44:22 - 00:26:46:24]
Michele Weston
 How crazy is that though?

[00:26:46:24 - 00:27:50:13]
Jeane Taylor
 Yeah, I know. I just want to normalize that when this started and only until recently, what is it? 2025 now. So it started in 2022. Only until maybe a year ago at the most have I felt adjusted to it. So for people that are just getting some new sort of condition that they have to change their entire life for, it's going to take time to change your identity, to grieve who you were, what you used to do. And then once you get it set, it's going to be okay. And then your friends, the people that are truly your friends, like I know, like I went out to Nick's Manhattan Beach restaurant. I'm like, "Oh, no." And it's on, you know, like that sounds great, right? But it's like, "Oh, no, for me, that's in the middle of the day. It's an hour and a half drive." And now I know to say, "Well, it looks like they have indoor seating." And then my friends are like, "Oh, yeah, don't worry about it."

[00:27:51:18 - 00:27:54:13]
Michele Weston
 You do worry about it because you're not sure.

[00:27:54:13 - 00:28:19:01]
Jeane Taylor
 Yeah, we're at the beach, but my friends, you know, they are going to take care of me and make sure I'm all right. So it's kind of not what I love. You know, it's a little embarrassing for me still, but it is also very heartwarming that, you know, my friends will go, "Oh, let's... Oh, wait, we're in the sun. Let's go stay in the shade." You know, they're thinking... Ahead of you. And they're helping you.

[00:28:20:03 - 00:28:26:01]
Jeane Taylor
 It's really, really sweet. So that's only been recently. It did take a long time,

[00:28:27:05 - 00:28:35:12]
Jeane Taylor
 yeah, to adjust. And I'm adjusted and I don't know what will happen. I don't know how much time we have left, Michelle.

[00:28:35:12 - 00:28:38:24]
Michele Weston
 Yeah, we're actually doing... No, we're doing well.

[00:28:39:24 - 00:28:45:14]
Michele Weston
 What I'd love you to do, if there are any tips that you think that somebody

[00:28:47:09 - 00:28:50:00]
Michele Weston
 you would have loved to have known before,

[00:28:51:19 - 00:29:01:24]
Michele Weston
 or you would have loved to share with somebody if they're, you know, because it's a strange one that you have with Urticaria. Is there anything like,

[00:29:03:03 - 00:29:16:07]
Michele Weston
 you know, would it be helpful if they see rash to look at Google, or should they just go to the doctor? Yeah, I see you now, you know, doing this. No, no. Talk about that, because sometimes we need to hear...

[00:29:18:16 - 00:29:19:09]
Michele Weston
 Maybe not Google.

[00:29:21:10 - 00:29:22:09]
Jeane Taylor
 Well, you know,

[00:29:23:12 - 00:29:23:17]
Jeane Taylor
 and...

[00:29:24:17 - 00:29:58:20]
Jeane Taylor
 Well, for me, I come from a medicine family, you know, and I worked in a doctor's office for a long time. So I'm not afraid to go to the doctor and to ask my questions, and I have to have things explained. And so for me, it was going to the doctor. But what I really, really wanted was to hear someone's story about having this. And even though I'm really... Don't share this with many people, my condition. I wanted to do this podcast because this is what I wanted.

[00:29:59:21 - 00:30:00:21]
Jeane Taylor
 So this is what I wanted.

[00:30:00:21 - 00:30:22:15]
Michele Weston
 And you know, guys, to put yourself out there, that's a big deal. And we're actresses. We came from acting. We are used to being on the stage and everybody's seeing us. But when it's personal, and when it's private, and you can't see it, so you can't see my MS, you can't see her Urticaria unless she's in a state of reaction.

[00:30:23:19 - 00:30:32:22]
Michele Weston
 But if we can help somebody else, I think Jeannie and I really feel that that's the right thing to do, right? Mm-hmm, yeah.

[00:30:33:23 - 00:30:34:05]
Michele Weston
 Yeah.

[00:30:35:20 - 00:30:56:01]
Michele Weston
 I really appreciate that. I appreciate that. And that you put yourself out there is a big deal. And I'm hoping that those others who are hearing my podcast understand, if I can give you a blueprint, a template to help you handle chronic conditions, no matter what it is, you know,

[00:30:57:05 - 00:31:11:03]
Michele Weston
 cancer is harder because sometimes there's a terminology to it. But many chronic conditions can be with you your whole life. But you're, as I like to say, you're fine. You're fine.

[00:31:12:12 - 00:31:27:23]
Michele Weston
 And I want you guys to just take the bull by the horns and ask questions. Please come on to Michelle Weston Coaching and ask me any questions. Do you have anything you want to ask Jeannie? Ask it through, you know, please just direct them to

[00:31:29:00 - 00:31:42:09]
Michele Weston
 michellenavigates.com and I will ask Jeannie to answer you guys. And if you have an experience, please let us know because we want to make sure that people are really out there with tools.

[00:31:44:01 - 00:31:44:09]
Michele Weston
 You know,

[00:31:45:17 - 00:31:45:22]
Michele Weston
 right?

[00:31:45:22 - 00:31:52:19]
Jeane Taylor
 I'm happy to answer any questions the best as I can. At least I have my experience to answer from.

[00:31:52:19 - 00:32:56:00]
Michele Weston
 And I really do. I appreciate it. You know, Jeannie and I just like reconnected this in 2024. So to share something like that, that's very personal. I take that very seriously. And I appreciate that she trusted me with it. And I also greatly appreciate that she came on and shared it with you guys. So it's a listening program. It's not a seeing program. It doesn't mean you shouldn't see her and you will because I'm going to get to YouTube and do all that stuff. But later, I want you just to know that you're not alone and you have company with your chronic condition or conditions and that you may learn a lot. So love you lots, Jeannie. And I'll probably see you this spring. I love you back. Hey, you guys. We'll see you next week. Have a great one. Enjoy the sunshine, whatever way you do. And get out there and de-stress.

[00:32:57:13 - 00:33:20:23]
Michele Weston
 Thanks, guys. Thanks for tuning in to this episode of Beyond the Diagnosis. If something we talked about today resonated with you, if you're craving deeper understanding, better support, we just want to know you're not alone on this journey. Make sure to subscribe to my free sub stack at michelleweston.substack.com.

[00:33:23:02 - 00:33:57:00]
Michele Weston
 That's where I share personal insights, expert takeaways, and extra resources to help you stay informed, empowered, and one step closer to the clarity you deserve. And if you found this episode helpful, leave a review or share it with someone who needs to hear it. Your voice helps this message go further. Until next time, keep asking questions, keep trusting yourself, and keep going beyond the diagnosis.