Paige Wolf an author, publicist, and advocate dedicated to creating meaningful progressive change locally and globally. Paige is the author of Spit That Out! The Overly Informed Parent’s Guide to Raising Healthy Kids in the Age of Environmental Guilt and the owner of Paige Wolf Media and Public Relations, a PR firm focused on mission-driven clientele. Paige’s latest project is phillytweens.com, a resource for parents and kids trying to navigate the city and the world. Paige regularly appears on television as a green living expert and writes about green living, parenting, and activism for several publications. She lives in Philadelphia with her husband, two children, and American Hairless Terrier.
Here’s what we discussed in today’s episode
- Dealing with misdiagnosis
- Finding a balance with physical activity, work, and family
- Advice for persons with chronic illness to become entrepreneurs
- The importance of those struggling to reach out
Connect with Paige
Website: http://www.paigewolf.com/
Instagram: https://www.instagram.com/paigewolf/
Facebook: https://www.facebook.com/PaigeWolfPR
Twitter: https://twitter.com/paigewolf
Connect with Nicole
Website: http://www.theresilientva.com
Instagram: http://www.instagram.com/theresilientva
Facebook: http://www.facebook.com/groups/spooniepreneurcommunity
LinkedIn: https://www.linkedin.com/in/wnicoleneer/
Nicole: 00:02 Hey everybody, and welcome to the Spooniepreneur Podcast. I’m Nicole Neer, an online business manager living with Fibromyalgia and Bipolar Disorder. On this podcast, I’m going behind the scenes in my business and talking to other Spooniepreneurs to get real about what it looks like to be an entrepreneur and living with chronic illness to inspire you to start the business of your dreams no matter what life throws your way.
Hey everybody. Welcome to another episode of the Spooniepreneur Podcast. I cannot wait for you to hear today’s guest and I know I say that absolutely every week, but I really hope that you walk away from today’s episode with some great insights into what it looks like to create a business that works around your health, but also works to include your family life into the mix. I know so many of us, we want to have the energy to be there, present with our family.
Nicole: 01:02 And when you have a business, when you’re an entrepreneur that can be really draining and you want to make sure that you’re building a life and a business that works with all the parts of your life. Right? Like I do every week, I want to start us out with a quick disclosure. I fully recognize that what works for one person may not work for others. So the information that we’re talking about on today’s podcast isn’t meant as medical advice and it doesn’t take the place of the important relationships that you have with your doctors or your therapist. So today I am talking with Paige Wolf. She is an author, a publicist and an advocate dedicated to creating meaningful progressive change both locally and globally. She is the author of “Spit That Out – The overly informed parents guide to raising healthy kids in the age of environmental guilt”. And she’s also the owner of Paige Wolf Media and Public Relations, a PR firm that is focused on mission-driven clientele, which I love. Paige’s latest project is Phillytweens.com which is a resource for parents and kids trying to navigate the city and the world. Paige lives in Philadelphia with her husband, two children, and an American hairless terrier. Love dog moms. So let’s just dive right in.
All right everybody, I have page Wolfe with me. Paige, how are you today?
Paige: 02:29 I’m doing good. I’m feeling good today. Thank you. I’m on my third big cup of coffee. Oh, me too. Yeah. Three. I’m on two right now, but you’ll get there very well. Yeah.
Nicole: So tell us a little bit about you and your health journey.
Paige: So my health journey is, I’m going to be 40 next month and I’ve been pretty healthy my life. I’m in my early thirties. I got involved and I became more interested in physical fitness. I started working out a lot and challenging myself and really enjoying that. I have two children, a 10 year old and a six year old. And I noticed after I gave birth to my daughter six years ago, during that pregnancy I had a lot of weird infections, ear infections, sinus infections with just like really intense infections like I had never had in my life.
Paige: 03:29 And then after I had her, I noticed that I was constantly getting sick and run down like every few weeks I would just get this insane like rundown exhaustion where I’d have to sleep for two or three days. And I thought, you know, maybe it’s from nursing or just being a new mom or a second child. I couldn’t quite figure it out. And I sort of went on like that for a couple of years experiencing pretty frequent infections and exhaustion but managed to sort of go about my life fairly normally. In 2016, I got really, really sick. I thought I had a neuro virus. I had a really, really high fever. I was vomiting. I mean it lasted for days and it started to become really concerning. And long story short, after a couple of different trips to the ER, I went into septic shock and I was in the ICU for a few days and they didn’t know if I would make it.
Paige: 04:23 And we credit my making such a good recovery to the fact that I had been focused on my physical health until then. So it was pretty strong. And you know, even to this day, the doctor’s diagnosis were that they don’t know, they kept testing me for all kinds of bacteria and it was all coming back negative. So they said, well, you had food poisoning. I said, well, I didn’t eat anything strange. You know, nothing’s coming back positive in terms of bacteria. Like I had a virus. And they just were like, well it just doesn’t make sense. After that I did test to try to figure out what had gone wrong and nothing was really conclusive. But then I was taking a look at my own blood work, which is the story for many of us, for me sort of diagnosing myself.
Paige: 05:07 And I found that I had low level of certain immunoglobulin, which is part of what keeps your immunity strong. Um, my levels of IGG and IGA were below normal and I approached a couple of doctors with this over the course of a year and a half cause I was still getting lots of chronic infections. And a lot of times I was sort of dismissed. I finally found a doctor who looked at these numbers and said, yeah, you have a primary immune disorder. You have what’s called Common Variable Immune Deficiency. It’s rare. It’s only called common because I think it’s a common form of immune deficiency, which is rare in itself. Primary immune deficiency is rare, right? So at that point we discussed options. The really only treatment for what I have is getting blood plasma infusions with people’s healthy plasma.
Paige: 06:03 And there’s a few different ways to do that. There’s a weekly version, there’s a monthly version, you can do it at home, you can do it outpatient. I had been doing it at home myself for about a year and a half. But personally for me, the side effects have been so significant that I’m seriously considering going off treatment and sort of seeing what happens. So that’s where I am in my health journey. And I’ve always been very open and public as a person who works in communications about my life, my journey, my struggles, whatever’s happening in my life. So I’ve shared a lot about both recovering from sepsis and living with CVID. I’ve met a lot of great people virtually online. I’ve connected with people in my community and I think the biggest thing that I’ve learned is how extremely common invisible illness is, particularly among women, particularly among women in their thirties and forties and particularly among mothers. Because I believe that for me, something was triggered during the course of that second childbirth. It just made myself get weird and I haven’t been the same sense. Of course I wouldn’t trade that beautiful six year old daughter who’s wonderful. So whatever it is, it is.
Paige: 07:24 And I feel like a lot of the time as women we kind of brush aside our symptoms because we’ve got so many other things that we’re trying to do that it just waits until it gets to that point where we’re in the hospital and we have to deal with it.
Nicole: 07:40 You’re 100% right.
Paige: Well, the first time I went to the ER when I was really sick, they sent me home and I knew something was wrong and I begged them to let me stay and they were like, you have a stomach flu, go home I considered a malpractice suit. But basically once they just sort of refunded my ER fee, I kind of just wrote them a strongly worded letter and moved on with my life. If it wasn’t for my sister in law, being a nurse and coming in the next day and seeing how ill I was and her like physically bringing me into her ER, her hospital, I might not have survived. So I had been dismissed by hospitals. I have been dismissed by doctors. I had a doctor who were supposed to be the top immunologist in the region look at my blood work and tell me that I didn’t have CVID that I needed the allergy shots.
Paige: 08:26 I was dismissed by these top doctors that I needed allergy shots. And I was like, this is not allergies. I’ve had allergy shots, that is not the problem. And so I had that experience until I found someone who really believed me and was willing to advocate for me. So I was lucky in that respect. I’m also lucky in the respect that I am a woman who is a strong and sound mind. I will fight and advocate for myself in the way that not a lot of people have the privilege to be able to do. I have some financial means. I have decent health insurance. And I try to be well educated. I know how to connect on the Internet and social media. I believe that there’s so many people out there who are struggling and don’t have the means to advocate for themselves, don’t have the money or the health insurance reasons is that resources to advocate for themselves.
Paige: 09:17 So if I can at least share information on how to navigate our health care system, signs and symptoms to look for, I just had, a local mom that I know reach out to me the other day because she heard about what I was going through and she’s been really sick and hasn’t been able to get a diagnosis to figure out what’s going on with her. People will dismiss it as mental health. Which is certainly a very true thing and can be a component to all kinds of illness. But you know, people have been told you’re just tired. You’re a busy working parent. You’ve got anxiety, you’ve got depression. Those things may all be true, but we instinctively know that there’s something that is likely wrong and it’s harder because many of these immune diseases and autoimmune diseases are extremely difficult to diagnose.
Paige: 10:05 And so there’s all these people who are taking years to get a diagnosis of Chronic Lyme or Lupus or Fibromyalgia or Chronic Fatigue Syndrome, which is really not widely understood. And with a disease like mine CVID having an accompanying autoimmune disease is very common, I don’t yet have a diagnosis of an accompanying autoimmune, but I strongly suspect that I may have Chronic Fatigue Syndrome accompanying it and could come on like these other autoimmune illnesses down the line. So it’s a constant journey. You see, you know what I’m going to deal with going to treatment, I’m going to do and how are things going to evolve, and how can I best take care of my health while maintaining my life being a parent, being a wife, being a friend, and running several businesses.
Nicole: 10:59 So were you an entrepreneur before you got sick or have you been one for awhile?
Paige: I have been an entrepreneur for a while. So in some ways I’m fortunate to have been working for myself and from home. Well before I got sick, I started my public relations business sort of by accident when I was 23, I’m almost 40. And I think working for myself from home ever since and during the course of that time, it’s evolved significantly. I work in addition to doing public relations and communications work, I’m a writer. I’ve written some books, I write a blog, I do a lot of freelance writing. I started different website projects. So I do a lot of work and the vast majority of it can be done from my bed or my kitchen table.
Paige: 11:48 So I’m really lucky that my sources of income haven’t been super dramatically affected. But certainly there’s work that I have not taken on. Knowing what I will and won’t be able to handle. Anything that would involve traveling, anything that would involve a lot of interesting meetings. Fortunately the clients that I do work with are really, really understanding if I have to cancel something last minute or phone in. So I have the advantage of the fact that my work has always been virtual. But the downside is that a person like me who has not come from full time employment would probably not be able to get disability, not that disability would be easy to get with a diagnosis like mine anyway, that option is sort of out of the cards for me and I’m okay with that my now because I, I really love working and I’m fortunate to have a husband who’s got decent employment and parents have some means so I don’t have to worry that my health costs are going to lead me out on the street.
Nicole: 12:49 Great. And I feel like there’s this line between being “sick enough” for disability and not being well enough to do the full time nine to five, get up, get dressed kind of job.
Paige: 13:04 Right. I mean, with me, I have good days and bad days. I have good hours and bad hours. I have times where I can’t get out of bed for three days and then they might see me the next morning running three miles. And I write a lot about that on social media and my blog because I want people to understand that because you see me at the gym today, does not mean that I am fine, does not mean that I will be fine an hour from now. I found through trial and error that I could work out in the morning and be totally fine for the rest of the day. I could also work out in the morning and be laid out for three days adversely. I could decide to just take it easy that day and get super sick. The correlation is not clear.
Paige: 13:49 So I’ve been working on like taking easier. I no longer, I’m competitive in my athleticism. I’m no longer signing up for races and competitions. When I go to the gym and there’s a workout on the board, I take it really slow and I modify it. And that’s been hard for me because finding that has been an outlet that I was really passionate about, so I’ve had to modify it, but I’m grateful that I can still do something. I can look perfectly fine and I never know what just all of a sudden it’s going to hit me and I’m like, I got to go right now. I gotta lay down. It’s also hard as a parent. My kids are great. They know that, that mommy’s sick, that I’m in bed a lot. My husband takes up a lot of the slack.
Paige: 14:32 We’ve found things like, it’s harder for me to wake up in the morning in time to get my kids off to school. And because I don’t, if I get up before I’m ready to, and I don’t sleep super late, but if I get up before I’m ready, it can really negatively impact my day and my house. And my husband said it’s easier for him to just get up with the kid and take them to school. And other than that, we sort of play it by ear. Like, am I going to pick them up or are they going to have to stay late after care? You know, am I going to be able to join in this activity this weekend and when can I actually take them on myself and give him a break? We have friends and family that are helpful to a point, but everybody has their own problems. Everyone has their own issues. So we can’t expect that much help, but we take it where we can get it and we’re certainly not a change.
Nicle: 15:28 And so one of the things that I’ve experienced in my business is that that kind of the ups and downs of I can be fine one hour in the next hour I’m crashed, have had an impact on how I set up my business and how things operate. Have you had the same experience?
Paige: 15:42 It is. I will be like cognizant of not making meetings on certain times or certain days. I try to give myself the best possible outcome for me knowing I’ll be able to make it and I notice a lot of scheduling around my treatments because I’ve had my treatment knock me out for four days. I don’t schedule too much in one day. I usually am with my most productive hours are typically between like nine and two where I’m up and drinking a lot of coffee. And I know that if I schedule a meeting for four o’clock in the afternoon, that’s not a great time for me. I turned down like, you know, if a friend wants to go to dinner, I’m like, cool, let’s do six o’clock. If they’re like, yeah, I can only do 8:30, it’s not gonna work for me, bro. I know I need to be like laying in bed by seven o’clock just resting and trying to go to sleep by 10. I mean I know myself, I know my body, I know what I can handle and what I can’t. I know if I push myself too hard, I’m going to pay for it.
Paige: 16:50 But it’s tricky cause I really don’t necessarily know from day to day or hour to hour how I’m going to feel.
Nicole: 16:57 So what advice would you have for somebody who has chronic illness? Who’s thinking about becoming an entrepreneur?
Paige: 17:04 I mean it’s so hard to say. I mean there’s people who really, everyone’s such a different situation. There’s people who rely on that full time income and unless they can make a strong enough case for disability, they really can’t leave that. So it would be really hard for someone who was working full time and exhausted by that already to try to start up a side hustle or a hobby. There’s some people who are currently not working and would love to be doing something that felt productive to them. Whether it’s making crafts to sell on Etsy or you know, blogging or selling beauty products or health shakes or what I mean, whatever makes you feel like you want to get up in the morning and be earning some income and have something of your own.
Paige: 17:52 So I think everyone’s situation is really unique. I mean I would certainly encourage people that if they can, to try to find something that can be somewhat sustainable for them, help them earn extra income, help them feel productive and active. And a lot of things like this can be done virtually. We’re fortunate to live in such a technology connected world where again, if you want to sell a product or a service, if you want to share your writing, your art, your music, you can do that virtually and you can make some income or even just feel good about doing that. So that’s the plus side about living in this day and age where we can do that and we can connect to communities and earn money without necessarily having to go and sit in a desk from nine to five or wait tables or whatever else it is that people are doing to get by these days. It’s, it’s just, it’s hard.
Nicole: 18:53 I think you touched on something that I’ve really experienced, which is just having something to focus on in some way to feel productive is been a game changer for me and just my mental health, being able to just feel like I can get up and do something and not just feel like I’m laying around without a purpose. You know what I mean?
Paige: 19:14 Exactly. It’s such a huge thing for my mental health and I’ve always been a person who likes to be really, really busy and my mental health suffers when I’m not busy. So if work is slow, I suffer. If works too much, I suffer. There has to be a balance. But generally I’d rather be overworked than for work to be too slow. And if work is too slow, I suffer. So I’ve taken up hobbies for myself so that I don’t let my mind go crazy. Like I took up pottery recently and I bought a really low cost pottery wheel from my home. So I know that if I start to feel like my brain is going into overdrive, I’m feeling self-pity. I don’t have work to focus on or project that I’m excited about and okay, I’m going to go downstairs and make some pottery and that’s something I can do. For me that used to be running 10 miles or seeing how heavy I can lift this weight. That doesn’t quite work for me the same way anymore. So I channeled that into a different experience.
Nicole: 20:13 And so what question have I not asked that you want me to ask?
Paige: 20:18 Wow. Um, I don’t know. I really feel strongly that there’s an epidemic of women who are suffering illness after childbirth and after pregnancy that’s not being diagnosed. I did some research on it. I linked to it in one of my blog posts about how so many of the people that I’ve been active with, for whatever reason, these kind of immune and autoimmune diseases seem to be much more prevalent in women. This is what I’m seeing. I’m seeing it in a specific age group and I’m seeing you a lot. But among women who have given birth and something like triggers in the cells, it’s kind of a scientific thing where all of a sudden you just have Fibromyalgia or you have Lupus or there’s something suddenly wrong with your vision.
Paige: 21:08 I’ve talked to so many people. Adversely, I had a friend who had had fibromyalgia, had a baby and the Fibromyalgia went away. So it does some stuff, like some stuff happens in your body, it’s crazy. Um, certainly I’m passionate about environmental issues too. I write a lot about health and the environment and pollution and plastics and all this kind of stuff. And that’s before I got sick. Something I, I was consistently passionate about because I know that things like where air quality and through quality and water quality contribute to exemplifying our illnesses and affecting our health. So I’m passionate also about the political process and trying to make change on that level, which is also something I’ve written and talked about how can you be an activist and you feel like when you’re confined to the bed or confined to a chair.
Paige: 22:08 But again, because of the virtual world we live in, there’s a lot of things that you can do to help make change. So that’s something that I’m passionate about as well. And I hope that people who are suffering will not remain silent, that they’ll reach out and that I follow some really great, like you’re one of the people that I follow on Instagram, I’m not even sure how I started following you, but I started following people who had similar chronic illnesses with interesting stories to tell. Somewhere between, some of the people are motivational, some of the people are just resourceful, insightful, interesting. When I follow the #CVID, which is my own it’s interesting because I’ll get a mix of people who are like, I climb Mount Everest and I feel great. And then people who are like at that store see you later. So it’s like such a wide range so it can be like this really inspiring post. And then this really like sad, grim, this is the end post. It’s just, it’s a kind of a mind math. But like I do like following and connecting with people and saying like, Hey, what treatment are you on? How did that work for you? And everybody’s different, everybody’s super different. But yeah, connecting is great.
Nicole: 23:23 And I think that we’re so lucky that we live in such a connected age because I do not know what I did before I discovered this Spoonie community on Instagram because it’s just been a way to connect, to get advice, to get support. And like you said, there’s just such a spectrum of people. Some people are doing really well and some people are struggling and then we flip flop. Right.
Paige: 23:46 It’s just been, it’s just been a really powerful experience. Yeah. I find that there’s nothing lonelier than laying in bed when you’re having a really bad flare or you’re suffering from the effects of a treatment. Even though I have a husband and two children, I’m really fortunate to have that love around me and I’ve got friends and family that care about me. I feel so lonely and demoralized every time I get a flare or have to stop, refer to a treatment and my mind starts spiraling and I could then, you know, I’m sure a lot of people were with, with chronic illness, know that feeling of you’re completely fatigued but you just definitely can’t sleep. Please lay there. And so I was constantly scrolling through Instagram and I feel so much less alone is the other people who are dealing with what I have worse than what I have.
Paige: 24:38 You know, people who have lived fruitful and fulfilling lives with what I have. I don’t know what I would do if I didn’t have that. Yay for Iphones, Instagram. Not all selfies. You know, there’s substance there.
Nicole: Yeah, there is. So Paige where’s the best place for people to find you on the Internet?
Paige: So the homepage for everything is paigewolf.com, that’s easy enough. And from there you can link to different projects. I blog mostly on spitthatout.com, the book that is about everything from parenting, environmental issues. I’ve been posting a lot about living with chronic illness, both about politics, whatever’s on my mind. And you can see the different projects that I’m working on at any given time and I welcome people to reach out to me about literally anything. I’m an open book and I love connecting and sharing with people.
Nicole: Well, great. Well thank you so much Paige, for being on the Spooniepreneur Podcast.
Paige: Thank you so much for having me. I can’t wait to see this and share it out with our community.
Nicole: Yes, thanks.
Paige: Thank you.
Speaker 2: 25:50 Thank you so much for listening to the Spooniepreneur Podcast. If you enjoyed this podcast, please subscribe, recommend rate and review on iTunes, Stitcher, or wherever you get your podcasts to find show notes and to get connected to our community of Spooniepreneurs go to http://www.theresilientva.com. Thanks for listening and we’ll see you next week.