Jenni Prokopy is founder and editrix of ChronicBabe.com, an online resource for young women with chronic illness. An award-winning writer, speaker, and expert on healthy living, she shares her personal experience – and rallies the expertise of hundreds of others – to help women live beyond their illness and be total Babes. Her writing has appeared in more than 100 publications, and she has worked with dozens of organizations large and small, local and multinational, to create compelling messages that empower people to work better, play harder… and be their best. Her site offers hundreds of resources, including a free biweekly enewsletter and other free goodies for subscribers.

Christine Miserandino of ButYouDontLookSick.com had an opportunity to speak with Jenni recently about her blog and her invisible illness.

BYDLS:
What health issues are you currently dealing with?

JP: I have fibromyalgia, Raynaud’s phenomenon, asthma, GERD…and I was just diagnosed with rosacea (thankfully, it’s very mild).

BYDLS: Living with something others can not see can be challenging. How does having an “invisible illness” affect your day to day life?

JP: The illness that impacts me most is fibromyalgia, which is tough to explain to others (or, convince them that it’s real – especially since there’s no blood test to prove it). In the early years after my diagnosis, my day-to-day life was very difficult, but I’ve learned many tricks to manage my symptoms, so my daily routine is pretty predictable and flare-up-free. BUT that doesn’t mean I’m not affected; on the contrary, I need to take frequent work breaks so I don’t get pain in my hands, shoulders and neck. Two or three times a day I stop to do some stretching and yoga. The medicines and supplements I take sometimes make me nauseous so I have to watch what I eat. If I sleep poorly, I might wind up staying in bed for part of the morning, which means I’ll need to work later – or work over the weekend. I check in with my body throughout the day to monitor my pain, and adjust as needed. Pacing helps me accomplish many things I was once unable to do; for example, I put together our big fake Christmas tree by myself this year, in stages over a few days. It was a good challenge and a reminder of how pacing can really work – it just requires patience, which I’m still learning!

BYDLS: Recently, you broke your wrist and besides the obvious difficulties of not being able to use your hand, I was curious how it felt to have a disability that was now “visible” compared to living with arthritis etc which your friends and family could not see. Were their reactions different? Were yours?

JP: I received so many offers of help and a great deal of compassion (and, sometimes, sympathy). In the past, during a big flare-up, I might not have gotten the same treatment because it’s hard for folks to understand, but having a big cast on your arm sure makes a statement.

My husband, Steve, was really terrific. Aside from the obvious things (like helping me cut my food on Thanksgiving, lifting things for me, sleeping on the couch because I had to take over the bed and prop myself up with a mountain of pillows), for the most part, he treated me the same. We joked about stuff, he teased me about being temporarily one-armed…he never lets me get away with pity parties. He helped me remember to look at the positive all the time, and he was really strong for me, which was awesome. I think when you live with a partner day-to-day, you can forget how awesomely they handle your “invisible illness”-related disabilities on the smallest levels. Their reactions to a big acute injury are a great reminder to us of how terrific they can be. (My take-away: never take my husband for granted!)

I still found myself sometimes struggling to ask for help. Now that I’m healing, I try to do everything by myself, even when I know better. (I dropped a frozen pizza last night because I was too stubborn to ask for help!) But when you literally CAN’T do something (versus that task just being a lot harder), it forces you to ask for help, and that was a healthy process for me…something I continue to work on each day.

BYDLS: How have new things, like your voice recognition software due to your recent wrist injury effected you?

JP: Dragon NaturallySpeaking Voice Recognition Software
is terrific – it allowed me to get back to work a lot faster. I am so impatient that I’m still not using it for everything, but I’m getting better and I hope to transition to using it for almost everything eventually. That has a great outcome: less pain for me and a speedier work process. My wrist fracture and surgery have also been a great reminder to me of how valuable my support team is. I have a big crew of friends who really came through for me and I’ve renewed my efforts to help them whenever I can. My community means everything to me!

BYDLS: How did you begin blogging? How often do you blog?

JP: I started blogging about 3.5 years ago, creating ChronicBabe as a way to share some of the tricks I had learned that allowed me to work more and live better in spite of being sick all the time. I just felt the drive to help – I’ve always volunteered with nonprofits and this seemed like a great way to use my writing skills for a great cause. It quickly grew and now ChronicBabe is a big part of my work, which ROCKS. To work on things you love is a real gift! I try to write at least a few times a week. When I’m feeling worse I sometimes take a break, but I also sometimes use sick time as writing time; it can be very therapeutic. And now, when bad things happen, I often wonder how I can use them for an article or a presentation. That’s a weird, happy turn of events! I’m also starting to do some guest blogging for other sites.

BYDLS: Where do you see yourself blogging wise in the next 6 months, and even 5 years down the road?

JP: In the next 6 months, I see myself writing much more often, and in the long term, I see myself traveling more and speaking on behalf of ChronicBabe. I love to see people in person and to stand up in front of a bunch of women and share my experience – and teach them some lessons that make their lives better – is my favorite thing to do. No matter what, I’ll always write for the site and keep sharing my ups and downs, but I’d like to bring in more guest writers and expand the range of voices on the site. I also have an idea for a book that I’d love to see come into being over the next year.

BYDLS: So many people (especially those with disabilities) have found the internet to be a place not only for information, but for socialization as well. The health and medical blogging world can be overwhelming at times. What advice would you give to a novice health blogger?

JP: The most important advice anyone has given me so far is this: don’t feed the loonies. By that I mean, get ready for the occasional complainer – and don’t take them to heart. Putting yourself out there means opening yourself up to critique, and that can be disheartening if you take it too personally. Otherwise, I encourage bloggers to use Twitter (my name: chronicbabe), Facebook and forums that address their particular illnesses to get to know the players in their field. Read others’ sites, write every day, and you’ll learn how to express yourself in a way that’s useful to others…because isn’t that why we all do what we do in the first place?

BYDLS: What are the three health related websites or blogs you would recommend to our readers and why?

JP: I love Laurie Edwards’ www.achronicdose.com – she’s a fantastic writer, prolific and thoughtful. www.StreetAnatomy.com is a fun way to think about health in a creative, visual way, and I check in there almost every day. Obviously, I’m a big fan of your site! And I always recommend that people use a feed reader (I love Google’s) to manage a bunch of different blogs. It lets you check in with all your favorites without much effort.

BYDLS: Google and other search engines can be a good and a bad thing. There is so much medical information out on the web.
What tips or advice would you give to someone just starting to enter the “online health world” to research their own medical condition?

JP: WebMd and the Mayo Clinic are two great sites offering very reliable, vetted health information, and I always recommend that folks check out the sites of any foundation or nonprofit that addresses their illness. There are a TON of sites out there filled with misinformation, but starting with big reputable sites is a safe way to go. I try to remind people that no matter how awesome we are with our blogs, we are no substitute for information given by trained medical practitioners. But there ARE reliable blogs that can offer a more personal perspective on life with illness; you can tell who the best ones are by how often they post, how frequently they link to other sources of information, and by their tone. Find voices that resonate for you and then double-check any medical advice that’s intriguing before running out to buy a supplement or try a new yoga pose.

BYDLS: I know you have learned so much through the years living with a chronic condition. What tips or advice would you give to the newly diagnosed patient? How have you remained such a “Babe”?

JP: Well, thanks for saying that – I do try to be babelicious as much as possible. 😉 A few things I always tell newbies: This is not the end of the world. I’m a case study on how fulfilling your life can be, even if you’re a sick chick! So find a couple people online who share your illness and start talking with them – soon you’ll be part of a community that supports you, and you’ll learn so much. I always encourage folks to seek counseling or spiritual guidance, which can really help them come to terms with their condition. Journaling is a powerful tool for newbies and long-time ChronicBabes alike; it provides an outlet for strong emotions, and a diary that you can look back on days, weeks or months later to see how you’re progressing. Finally: try to practice thankfulness every day. It may sound a little cheesy, but a little gratitude even in the face of huge struggle can help you keep things in perspective. Even when I broke my wrist and was in agonizing pain, I was thankful for my friends who came to the E.R., brought me pudding the day after surgery, called and texted me jokes, kissed my forehead when I cried…by focusing on their positive energy I got through those first awful days and now I’m almost totally healed! They helped distract me and I am so thankful for that. Gratitude always helps me get perspective even when I feel just awful.

BYDLS: Our website butyoudontlooksick.com speaks to so many who want to “look fine” even when they might not feel their best. Do you have any tips for looking great? For example: cute pill cases, lip balm, hats for hair loss etc.

JP: I frequently “fake it ’til I make it” – I put on makeup every day (I love Bare Escentuals!), jewelry and a cute outfit, even if it’s just a fun t-shirt that makes me laugh. I use some really cute pill cases, and I keep my inhaler and other meds in a beautiful makeup bag in my purse. If I had needed to stay in a cast longer, I would have blinged out my sling, no question. 😉 I can’t really recommend a specific brand of stuff other than that; I think the key idea is to do whatever you need to feel pretty. If that means searching online for a few hours to find the perfect comfortable shoes so you can walk farther, DO IT. Make the time and effort because you’re worth it. I have a couple pieces of jewelry that I wear frequently as a reminder of how far I’ve come and my personal strength; some days, if it’s all I can muster to put those on, then I feel a little prettier for it. That effort is totally worth it!

BYDLS: I know there is more to you then your blog and your illness, Tell us more about you. What do you to for fun, hobbies, interests? What is something our readers might be surprised to know about you?

JP: Oh, no one ever asks me this – thank you! Hubby Steve is a film critic, so we’re at the movies a LOT and I watch a ton of movies at home via cable or Netflix, especially sci-fi. I’m an avid reader of fiction and I love to discover a new author and just devour their works. I enjoy cooking and although I’m not fabulous at it, I keep experimenting. My freelance writing work allows me lots of schedule flexibility, so I try to get out and exercise in a variety of ways (walking, biking, swimming, dancing) during the day. I love visiting my niece in New Orleans – one of my favorite cities on Earth – and when I vacation, I almost always opt for something beachy. Spending time with friends is my favorite pastime; I love to just sit around and chat and laugh. Hand me a good margarita and I’ll be your friend forever. Always hug me when you see me, just not too hard. Finally, I’m considering getting a tattoo – my first – so if anyone wants to chime in on fibromyalgia- and tattoo-related pain, please email me!

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BYDLS: Lastly just for fun, What is one question for Christine you would like her to answer… no matter how silly, or serious!

JP: What is the smallest thing you’re grateful for, the tiniest little action or item you love that someone else might not recognize as being all that valuable? As an example: today, for me, it was the ability to hold a hand mixer so I could prep and bake a pecan pie. I was so excited I did a little dance in my kitchen!

BYDLS: As much as I am a “techie”, I love getting real peices of mail, small notes from friends for no specific holiday, or little presents to brighten my day. It is amazing what a card and a stamp can do to brighten someone’s whole day. Especially since I am homebound very often these little notes are tangible expressions of friendship and care, that make my days cheer up and stay connected even when I can not get out to see people.

By: Christine Miserandino © Butyoudontlooksick.com