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It’s been raining a lot here in Skokie, the village I now call home since we moved a few minutes north of Chicago’s north side to gain more space and a backyard for gardening.

And by raining, I mean, a lot. First there was a freak blizzard, which dumped a ton of precip on us and then all melted the next day, soaking the ground. Then, it’s rained almost every day since, and apparently overnight last night, monsooned. That’s why my backyard looks like this today:

Those wooden boxes on the right with the stone base are going to be my garden, and you can see the water has risen well into that area. (But the wood is made for this, so it should hold up, at least for a few years.) And that patch in the center is where we’re amending the grass, so I guess it’s good that the rain is fueling those little seeds.

But that water. All the water. It’s effing horrifying.

See, I have lingering PTSD symptoms from a traumatic storm experience more than a decade ago.

At that time, I lived in a condo with my first husband. On a normal day in August, I was working in my home office when my friend Dee called to say she had just heard a tornado warning for my neighborhood. “What? That’s cra-” was all I got out before the lights all went out, the phone died, my ears popped, my stomach flipped, and then the sound of a freight train pummeled me. I ducked and ran for a closet, only to find it was too shallow for me. I found another closet and secured myself, holding the doorknob as tightly as I could. Minutes passed. Things quieted. I peeked out. It didn’t look so bad, some minor damage in our bedroom but nothing big.

I ventured into the back of the condo, and — I can only describe it as a waterfall. Water poured out of every corner joint in every room. The kitchen addition built by a rehabber, was pouring rain into our kitchen and dining room. Debris was everywhere.

My brain went upside down. I decided I could just mop up the water with linens, and gathered everything in the house to line the walls and floors. I called my then-husband but all the lines were busy. I panicked. I sobbed. I gripped my fists. I kept hunting for linens.

Then I looked outside and saw the devastation. Our patio furniture: Twisted like a pretzel. A car in the parking lot had a telephone pole through its windshield. Commercial air conditioner units had been tossed around like a kid throws Legos. (They found some of ours blocks away in the middle of Lake Shore Drive.)

There was nothing I could do. And my brain? It fried itself. It just shorted out. We had been hit by a microburst, a somewhat rare weather phenomenon (especially in the City of Chicago) and the roof of our condo building had been peeled back like the lid of a sardine can, so as it rained over the next 24 hours, our entire building flooded.

The next few months were a blur of insurance claims, rebuilding, sleeping at a friend’s house for weeks, help from many people, many therapy appointments, and medication. Lots of medication.

Today, my PTSD is well-controlled. I still freak out a little if a toilet overflows, or if I spill a lot of water in the kitchen, or if there’s a thunderstorm. I have lots of tools to manage my symptoms. PTSD is not something that ever fully goes away; instead, I’ve learned a ton of coping techniques.

But dang, y’all. This flooding in my backyward is a mega-trigger today.

Medication, meditation, and the new addition of a water pump to try to speed the drainage are barely touching my panic. Even knowing what I know — that this yard floods sometimes, and that it never reaches the house, and that it always drains away, and that our house is safe — those logical, factual statements aren’t doing much.

I wanted to share all of this because I think it’s important to remember that we might do everything “right” about our illness(es) and still have symptoms. Brains are, especially, unusual things that have a mind of their own, and they don’t necessarily listen to our well-reasoned ideas. I want to remind myself of that, too. That’s one of my coping skills.

I’m doing what I can. I have the water pump going strong, I bought galoshes so I can walk about later today and clear debris that might be exacerbating things. I took medication. I’m about to meditate. We’ve checked all of our windows and doorways to confirm that nothing’s leaking in. (I am resisting the urge to check them over and over and over, as I did for years after my initial triggering event. (Sometimes, I would wake up in the middle of the night and just stare at a toilet for hours, hoping it wouldn’t flood. It was debilitating.)

And I’m gonna get outta here. I have some self-care planned today, and my hope is that when I get home, a lot of the water will have drained. The handyman who’s supposed to come Friday to finish building my garden? He’ll likely have some tips too. And the rain? It will drain. And the pump? It’s chugging along.

So that’s my day. As I mentioned a few days ago, I’m starting to get back into regularly blogging, so I hope this piece is affirming and helpful. Will you share some feedback and support in the comments? It would mean the world to me — thanks.

The post When old symptoms come back again: PTSD, rain, and acceptance appeared first on ChronicBabe.

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I don’t go to church, but I imagine that it feels a bit like how I felt at the HealtheVoices 2019 Conference a couple weeks ago. A deep sense of comfort and belonging. A common belief in a greater good for all. Friendships forged out of shared joys, traumas, and passions. A lot of singing and dancing. Tears of joy, of connection, of understanding. Sharing of resources. A feeling like everyone around you is family.

I made new friends like Tammie Snowden, who advocates for folks with diabetes, and met old friends IRL for the first time, like Devri Velazquez, who lives with Takayasu’s Vasculitis.

(I posted a ton of pics at my Instagram account.)

In the world of patient advocacy, an event like this — sponsored by industry organizations, but designed by and for patient advocates — is rare.

The main organizer is Janssen Pharmaceutical Companies, an arm of Johnson & Johnson, and they bring in a handful of big sponsors as well. They have a strong patient advisory board that helps create the programming for the event, and they cover travel expenses for every patient who attends — 140 of us this year. It’s a massive undertaking and it was friggin’ awesome. The open mic night alone was worth all the spoons I spent that weekend. (Stand-up comedy about ostomies! A drag queen performing You Got To Show Me Love! Original poetry and spoken word performances!)

Being a patient advocate can be kind of lonely at times. I’m sure that sounds odd to you; after all, I’m constantly speaking with people, connecting on social media, speaking at events… I do have a strong sense of community. But when you live with chronic health stuff, and you advocate for others, your own health concerns often get brushed aside.

I have had people write me angry letters, demanding I film more YouTube videos because they depend on me. (I paused filming new videos last year while I dealt with a massive months-long flare-up.) I’ve had event organizers expect me to travel and work for free for the “exposure,” and when I explain that “exposure” doesn’t pay the bills, they seem stumped. (And then I feel sad that I can’t go to the event.)

While I’m sure you, dear reader, are not this type of person, there are lots of folks in our community who are demanding and unreasonable, and expect us patient advocates to do all of our work out of the goodness of our hearts. But that’s just dang impossible. And the folks who organize HealtheVoices get it. Not only do they make sure we travel comfortably and that all our needs are handled for the days we’re there, they also provided a room for resting, heating pads, blankets, and an on-call EMT for emergencies. Being able to take care of myself at the event meant I had more energy to learn, and make new friends.

Friends like Lauren Reimer-Ethridge, who has chronic intestinal pseudo-obstruction. I’ve known her online for a while now, but we got to meet! In person! And talk about our work! And compare fashion for sick chicks! (She’s my new style icon.)

Throughout the weekend, I met all kinds of folks, representing at least 60 different chronic illnesses. I met straight and gay and trans and non-binary folks. Black and brown and white and asian folks. Young people and old people and middle-aged people. Skinny people and fat people and in-between people. City folk and country folk. All kinds of people, y’all. And we talked about the challenges of this work, and running our own businesses, and maintaining strong relationships, and raising kids, and advocating for our own needs, and… it was powerful. I felt seen. I felt like my concerns were represented, taken seriously, and lifted up.

And did I mention the laughing? I couldn’t stop laughing all weekend.

I took a lot of blurry photos because LAUGHING. This is Charles Sanchez, who advocates for people with HIV and is hilarious.

These moments matter. They’re what fuel me. When I’m exhausted and scared and unsure of my next move, the friends I met through HealtheVoices are there for me. When I’m trying to come up with the next big thing for ChronicBabe, the lessons I learned at the conference will help me. And being represented? Being heard and respected? It’s everything.

If you’re considering doing advocacy work, check out the conference and apply to attend next year’s event. If you’re looking for community, seek it out in Facebook groups and online forums. If you’re feeling alone with your illness, you’re not — there are people out there who will understand and respect you. Reach out to advocacy organizations for your illness(es) and ask how you can get involved and find more support.

And again, thanks to everyone who made HealtheVoices happen. I can’t wait to attend again next year!

The post Representation Matters: The HealtheVoices 2019 Conference appeared first on ChronicBabe.

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A quick note to share that today, I’m on Callie’s Chronically Well podcast, talking about creativity and chronic illness. The episode is here, or you can find it in any podcasting app. Plus, she videotaped the entire thing – so you can watch our cute faces as we chat.

Talking to folks on podcasts is one of my very favorite things to do. Are there any podcasts on which you think I would be a fab guest? Let me know in the comments below.

XO

The post Listen in: Chronically Well podcast with Callie Dixon appeared first on ChronicBabe.

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For a few years now, social media has taken over. When I started ChronicBabe, Facebook didn’t exist. Neither did YouTube, or Twitter, or Pinterest, or Instagram, or Tik Tok, or… anything else. Just: Blogging.

And that was pretty easy to keep up with. But as I’ve added all my social channels over the years, it is really tough to keep coming up with fresh ideas for y’all, all over the place. So I let my blog whither a bit.

But: That time is over. It is now time for me to come back to blogging. I have a lot of things to say, about life with chronic illness and chronic pain; about our health care system; about how women treat each other; about how our persistent lack of self-care is damaging us. And more. Much more.

So let’s talk. I am curious to know: What kinds of things do you wish ChronicBabe would offer? What kinds of things do you want to know about my life? What kinds of questions do you have if you’re newly diagnosed, or if you’re like me and you’ve been sick for more than 20 years?

Fill me in. Jump in the comments below, or use this contact form to send me an email if you want to keep things confidential.

I can’t wait to hear from you. I started this project with a desire to create community, and I’ve been missing that – let’s get that communal vibe going again, shall we?

XO

The post I think I’m going to start blogging again. appeared first on ChronicBabe.

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do you miss feeling connected?

sometimes i do, too. and when i do, i try to make an extra effort to reach out to people and say hello.

one way i do that is by sending snail mail. it’s such a simple thing to do – write a short little note, throw in some confetti, seal it with a kiss, and toss it in the mailbox. and i LOVE getting snail mail – it’s like a little present! so i decided this week that i would help y’all become better pen pals.

today, i’m announcing today the release of ChronicBabe Pen Pal Kits! i am raiding my stationery collection and creating fun little packages from my stash.

each kit contains: 
  • at least 3 note cards. these might be blank, or might have fun phrases or illustrations, like “thank you” or “you’re awesome”
  • 3 Forever Stamps, to make sure you send your snail mail. these are good for mailing within the U.S. FOREVER, but don’t wait!
  • at least one roll of washi tape, to use to decorate your envelopes
  • at least 20 stickers from my massive sticker collection from all over the world
  • two ChronicBabe stickers
  • two You Are Beautiful stickers
  • extra decorative paper and other goodies I find as I raid my drawers

the kits are for sale in my Etsy shop, and will be available until i run out of goodies. so these won’t last forever! 

international kits available

for those who live outside the U.S., i offer kits that don’t include stamps, for a slightly lower price. you’ll have to get your own postage.

and next week, i’ll tell you about another component of this pen pal project:

a pen pal membership component, which will make us pen pals. that’s right, *|FNAME|*. you and me. pen pals. writing to each other. doesn’t that sound fun?! i’m working on the details now, and will announce next week how you can get involved. here i am, dreaming about all the snail mail i’ll get to send and receive: 

The post Announcing: ChronicBabe Pen Pal Kits appeared first on ChronicBabe.

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It’s the winter holidays, and this time of year, many of us with chronic illness feel extra blue. We may not be able to travel because of our illnesses, or we may have less money to spend on gifts because our health expenses are high. We might feel like we can’t attend parties because there won’t be anything for us to eat or drink; we might even feel like we won’t have anything new to talk about, and that’s uncomfortable.

This holiday season, I hope you’ll give an extra thought to your friend who’s ill. To make it easier, I’ve come up with a long list of ways you can show you care. This is great for those of us sick chicks to share with each other (we’ve got to support one another!) and it’s a great list to share with our loved ones, who might want to support us but don’t know how.

Your chronically ill friend needs you! And loved ones need to learn how to support sick folks, too.

Share this list with folks you love, okay babe? And have the happiest holiday season possible.

  1. Text your sick friend to say hello, or I love you, or how’s your day going – something simple.
  2. Offer to do a quick grocery store run for your friend, even it’s just to pick up a few essentials.
  3. If you can’t run an errand for your friend in person, use a service like Postmates to deliver food,  groceries, or sundries. 
  4. Set a date with your chronically ill friend to watch a movie together. If you can’t do it in person, schedule a date when both of you can stream the movie at the same time, and hop on the phone to watch and giggle together.
  5. Make a recurring calendar reminder every three days to check in with your friend. The holiday season can get hectic and you might forget, but your friend needs you.
  6. Offer to drive your friend to some errands they need to run, especially shopping, going to the post office, or even doctor visits. That way you can catch up and make something otherwise mundane more fun.
  7. Buy your friend a month of membership in the ChronicBabe Academy, so they can make more friends with chronic illness–and learn how to empower themselves.
  8. Call your friend on the holiday and tell them you love them – people so rarely make phone calls now, they’ve become a real treat!
  9. Collect your sick friends’ addresses using a program like Postable and then send them a postcard to arrive during the holidays.
  10. Bake something you know your friend will love, keeping in mind their dietary preferences or limitations – ask first!
  11. If you don’t bake, ask around for a recommendation for a bakery that caters to your friend’s restrictions (gluten-free, vegan, etc.) and order them something special.
  12. Ask your friend “how are you?” and be ready to hear whatever she/he has to say.
  13. Offer to come over and help fold laundry. Seriously — sometimes we just need a little assist with the basics so we can save up enough energy to go to a party. 
  14. Buy your friend a one-month membership to the Uncustomary Babe club – it’s $5 and super-fun!
  15. Throw a bunch of stocking stuffer-like items in a box and send it as a gift for your friend. Big hits: nail polish, yummy-smelling moisturizer, chocolates, candles, cute cheap earrings, healing crystals… whatever your friend might like.
  16. If you live far away from your friend, schedule a video chat over the holidays to catch up.
  17. Offer to help your friend wrap gifts, trim the tree, hang outdoor decorations, or otherwise prepare for the holiday.
  18. Invite your friend as your “date” to a party, with the understanding that if they can only stay for an hour, that’s fine. 
  19. Hand-write your friend a letter, telling her/him all the things you love about them, and send it in the mail so it arrives during the holiday season.
  20. Remind your chronically ill friend that their value to this world isn’t monetary — it’s all about their spirit and how they brighten your life. 
  21. Find some fun GIFs to text your friend each day during the holiday season. 
  22. Offer to cook a tofurkey or gluten-free cornbread… or whatever they love… for an upcoming group or family meal. Essentially, help them feel like they’re included, and that it’s not a hassle. 
  23. Make your friend a Christmas ornament with an inspiring quote or saying, so that every day they can see a reminder that you believe in them. If they don’t celebrate Christmas, consider framing it in a cute frame for their nightstand.
  24. Brainstorm with your friend to create your own homemade holiday, one that happens at a different time of year, and celebrates the thing you both love most. Merry Popcorn Day! Happy Seinfeld Reruns Week! Make it your own, and make it special.
  25. Above all, stay in touch. Your friend needs you. 
Oh, and P.S.: What did I miss?

I’m sure you have more ideas about how we can support each other. Share them in the comments below!

The post 25 Ways to Support Chronically Ill Friends During the Holidays appeared first on ChronicBabe.

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Babes, I am SO excited to share that the new ChronicBabe membership program is here: the ChronicBabe Academy!

This membership program replaces the Secret Club membership program. While I loved the old way, I am now able to offer a new approach that has SO MANY MORE bells and whistles.

Head to this page to learn all about it.

So exciting! And: A bit scary. Anytime I launch a new offering, it’s a little stressful. So be kind—and patient—as launch day progresses. Thank you!

xoxo, Jenni

The post Hooray! The new ChronicBabe Academy Membership program is here! appeared first on ChronicBabe.

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Salix Pharmaceuticals provided me with a stipend and paid for my travel and accommodations related to the event. However, all opinions are my own.

Most people I meet hate talking about poop, but I don’t mind. Poop is one aspect of life we all have to deal with, and I’ve recently learned it is an important topic for those of us with chronic pain. So, I’ve never shied away from talking about it or any of the other “icky” topics.

When Salix Pharmaceuticals asked me to participate in a blogger event, I was wary at first—I so rarely do projects with pharma—but when they explained that it was a unique art event designed around learning about “Painstipation” (the constipation caused by opioid pain medication in chronic pain patients), and that they were presenting findings from a survey on opioid induced constipation (OIC) sponsored by Salix in partnership with U.S. Pain Foundation, I just had to say yes. I mean, art and poop talk – this was going to be interesting.

I knew a good bit about OIC before the event, because I have chronic pain and have taken opioids in the past—and because I’ve heard about OIC as a volunteer and creative partner with U.S. Pain Foundation since 2010. So many people in the chronic pain community rely on opioids to help manage their pain. This means many of them also have to deal with OIC.

From left to right: Leslie Vandever, Charis Hill, Brittney Wilson, and Jenni Grover

A bunch of feisty bloggers

Salix invited me and three other bloggers out to California to attend an educational, creative event about “Painstipation.”

Leslie Vandever is a blogger I’ve known for ages; she has rheumatoid arthritis, and she writes at Rheumablog, among other venues. She has openly shared that she relies on opioids to manage her chronic pain so she can continue to work and advocate for the chronic pain community. Brittney Wilson, BSN, RN, also joined us; she’s been blogging for years as The Nerdy Nurse, and has a reputation as a popular health care blogger. Charis Hill was the other blogger with us, and although I had not seen her blog at Being Charis, we clicked right away—she’s a firecracker. (In her blog, you’ll learn that she lives with ankylosing spondylitis.)

For a moment, I wondered if Salix understood that they had a room full of feisty advocates on their hands? None of us are quiet bloggers—we’re all fighting the good fight for better health care for all. Once I recognized the potential for all of us to get creative together using art, I really appreciated the thought that had gone into the event.

The research: opioid-induced constipation and chronic pain

Before we made art, we talked about the survey. Salix, in partnership with U.S. Pain Foundation, sponsored a national, one-week online survey (conducted by Wakefield Research) which evaluated 441 U.S. adults ages 18 years or older, who were living with chronic pain, on opioid therapy, and experiencing OIC. I found the results of the survey upsetting:

  • 37% of these patients reported changing the dosage of their opioid medication to try to alleviate the pain or discomfort of their OIC
  • 77% of these patients reported suffering from OIC for at least one year
  • These patients reported waiting an average of 18 hours to have a bowel movement after taking their constipation medication
  • 43% of these patients reported suffering from OIC for more than 3 years
  • 53% of these patients said they would have preferred for their OIC medication to induce a bowel movement in less than 4 hours
  • 47% of these patients reported taking between 6 to 10 total prescription medications on a regular basis
  • 20% of these patients reported taking more than 10 prescription medications on a regular basis

I’ve been really lucky in that I’ve only experienced OIC for brief periods; it’s hard to imagine living with it for a year or longer. Or waiting for OIC meds to kick in. Sigh…

Again, I know some of us get uncomfortable talking about poop stuff…but that’s precisely why I thought this event was important, because we should get over our squeamishness so we can talk openly about OIC, an issue that impacts so many people.

Where does the term “painstipation” come from?

Dr. Joseph Pergolizzi, Jr., senior partner and director of research for Naples Anesthesia and Pain Associates, likes to use the term. We met him and discussed the issue of Painstipation and he is really passionate about helping chronic pain patients and other folks get the care they need and deserve. (I’ve followed his work for a while, and he’s done a lot of good work for the chronic pain community.) Here’s how he describes the origin of Painstipation:

“Patients may not mention opioid-induced constipation with their practitioner, so we need to have a ‘do ask, do tell’ policy. It’s important to realize that it starts with conversation. I like to use the phrase ‘Painstipation.’ These are chronic pain patients who are experiencing constipation due to their opioids.”

I think life would be so much easier if we could talk openly and freely about poop! Especially if it helps people get better care.

We made art!

Leslie, Brittney, Charis and I were all moved by the survey findings, and had a rousing conversation about how we could spread the word—and how health care partners may be able to step up and help as well. We chatted as an artist and his assistant began setting up easels, palettes of paint, and aprons. We all considered the findings shared above and thought about which ones resonated the most for us.

It was hard to pick just one, but I zoned in on the last of the bullet points above: 20% of the surveyed patients reported taking more than 10 prescription medications on a regular basis. Wow, that hits home; I currently take that many, plus a fistful of supplements and vitamins every day. It’s expensive, difficult to manage, and cumbersome.

This professional artist and instructor worked with us to help us bring the survey findings to life using abstract art. We each chose a finding that resonated with us and worked on them for a couple hours. I called my piece “punchy,” and you can see it to the left.

It was super fun to learn more about value and contrast in art, and about the possibilities that come forward when you weave different textures through a piece. I kept thinking about how I could integrate some of the strategies into my quilting—more colors, more textures, the clashing of angles and curves.

I felt like “punchy” really brought to life the finding as it had played out in my life. Sometimes, the process of managing all those prescriptions (and the bureaucracy surrounding procuring them) makes me feel wobbly and crabby. And sometimes, the fact that I have to take so many meds just to stay copacetic makes me feel, well, like I want to punch someone. So: “Punchy.”

If only more people felt like they could speak up

The thing is, so often, people with Painstipation can get help, but they may not feel comfortable talking about the issue. I hope that by seeing ME talk about it some, more people reading this will feel like it’s okay to talk to their docs.

As you might have guessed by now, Salix makes a medication for OIC: RELISTOR® (methylnaltrexone bromide). Now, I can’t vouch for Relistor personally—and you should always talk to your healthcare provider about options—but I think it’s pretty great to know there are ways to help manage your Painstipation.

So I hope you’ll speak up more, babes, if this is an issue you live with. Like I said, I don’t often partner with pharma companies on things like this…but it’s an issue I think is really important,—it’s time we become more feisty and outspoken for ourselves, and look for solutions in managing OIC.

More information about Relistor

Because Salix sponsored my participation in this art event, I need to share some more info on Relistor. Here ya go:

INDICATIONS

  • RELISTOR® (methylnaltrexone bromide) is a prescription medicine used to treat constipation in adults that is caused by prescription pain medicines called opioids.
  • RELISTOR tablets and RELISTOR injection are used to treat constipation caused by opioids in adults with long-lasting (chronic) pain that is not caused by active cancer.
  • RELISTOR injection is also used to treat constipation caused by opioids in adults with advanced illness or pain caused by active cancer and who need increases in their opioid dose for pain management.

IMPORTANT SAFETY INFORMATION

  • Do not take RELISTOR if you have a bowel blockage (called an intestinal obstruction) or have a history of bowel blockage.
  • RELISTOR can cause serious side effects such as a tear in your stomach or intestinal wall (perforation). Stomach pain that is severe can be a sign of a serious medical condition. If you get stomach pain that is severe, does not go away, or gets worse, stop taking RELISTOR and get emergency medical help right away.
  • Stop using RELISTOR and call your healthcare provider if you get diarrhea that is severe or that does not go away during treatment with RELISTOR.
  • You may have symptoms of opioid withdrawal during treatment with RELISTOR including sweating, chills, diarrhea, stomach pain, anxiety, and yawning. Tell your healthcare provider if you have any of these symptoms.
  • Tell your healthcare provider if you have kidney or liver problems.
  • Tell your healthcare provider if you have any stomach or bowel (intestines) problems, including stomach ulcer, Crohn’s disease, diverticulitis, cancer of the stomach or bowel, or Ogilvie’s syndrome.
  • Tell your healthcare provider if you are pregnant or plan to become pregnant. Taking RELISTOR during pregnancy may cause opioid withdrawal symptoms in your unborn baby. Tell your healthcare provider right away if you become pregnant during treatment with RELISTOR.
  • Taking RELISTOR while you are breastfeeding may cause opioid withdrawal in your baby. You should not breastfeed during treatment with RELISTOR. You and your healthcare provider should decide if you will take RELISTOR or breastfeed. You should not do both.
  • Also, tell your healthcare provider about all of the medicines you take, including prescription and over the-counter medicines, vitamins, and herbal supplements.
  • In a clinical study, the most common side effects of RELISTOR tablets in people with long-lasting (chronic) pain that is not caused by cancer include: stomach-area (abdomen) pain, diarrhea, headache, swelling or a feeling of fullness or pressure in your abdomen, sweating, anxiety, muscle spasms, runny nose, and chills.
  • In a clinical study, the most common side effects of RELISTOR injection in people with long-lasting (chronic) pain that is not caused by cancer include: stomach-area (abdomen) pain, nausea, diarrhea, sweating, hot flush, tremor, and chills.
  • In clinical studies, the most common side effects of RELISTOR injection in people receiving treatment for their advanced illness include: stomach-area (abdomen) pain, gas, nausea, dizziness, and diarrhea.

You are encouraged to report side effects of prescription drugs to FDA. Visit www.fda.gov/MedWatch/ or call 1-800-FDA-1088.

Please click here for full Prescribing Information for RELISTOR tablets and RELISTOR injection.

For product information, adverse event reports, and product complaint reports, please contact:

Salix Product Information Call Center

Phone: 1-800-321-4576

Fax: 1-510-595-8183

Email: salixmc@dlss.com

The post Art and Poop: Why Chronic Pain Patients Need to Talk About the Icky Stuff appeared first on ChronicBabe.

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Last week, I had the honor of speaking at an event organized by Katy Brennan for Suffering the Silence, where a bunch of women stood in a room together and talked about how they’re living incredible lives even though they have chronic illness and disability. To be among women like me—to hear their stories, hopes, dreams—was profoundly moving. When called to speak, I changed course from reading from my book to instead read something I wrote more recently. It’s about the importance of making ourselves BIG instead of being forced to be small.

Here’s my quick piece. I hope you like it! If it resonates at all, please join the conversation in the comments and share your perspective. Thanks!

It’s time to make ourselves BIG

as a child… and as a young woman, and – heck – even today – my parents emphasized the importance of not making trouble. of not getting in anyone’s face. of not being too “different”.

and WOW, society sure has reinforced to me that i need to stay small. don’t ruffle any feathers. don’t make anyone uncomfortable. don’t be too needy. don’t be too noisy. don’t be too weird.

to be a “good” girl. to stay in line. to respect elders. to respect men. to respect doctors. to respect everyone else but myself.

so i learned to make myself small.

and that has done me an enormous disservice when it comes to my health.

here is a brief list of the ways in which i’ve made myself small when it comes to my health:

i’ve said yes to medications i was scared of, without asking questions about side effects.

i’ve held my questions when a doctor tells me they’re sorry, but they’re in a hurry to see the next patient.

i’ve hidden how much i was hurting from friends, family – even my health care providers – because i didn’t want to seem too “needy.”

once, in agonizing pain, i waited an hour to leave the house for the emergency room because my ex-husband didn’t want to miss an episode of the tv show ally mcbeal, but he also didn’t want me to go to the E.R. alone. i thought it wasn’t a big deal. it was: i had a ruptured ovarian cyst and the physicians were shocked i was even able to walk myself into the E.R.

i’ve changed clothes before a doctor visit because i want to look “nice enough,” like i’m taking care of myself. but i have to be careful to not look “too nice,” like i’m not sick enough to warrant care.

and i’ve stayed with doctors years longer than i should have because i thought they would be disappointed in me if i left them for another, more appropriate provider.

small.

the world wants us to be small. to be quiet. to be delicate. to be, what’s the word, NOT TOO HYSTERICAL when it comes to our health.

so i call bullshit. BIG bullshit.

i’m here to invite you to join me in being BIG.

here is a brief list of the ways in which i’ve been learning to be big when it comes to my health:

i wear whatever the hell i want to doctor’s visits, including my hair, makeup, clothing, jewelry, tattoos – and MY PERSONALITY. if they don’t like that i use humor to cope, that i laugh so loud it often makes people’s heads swivel, that i cuss a bit… and cry when i’m frustrated, well then, they’re not a good fit for me.

i fire doctors who don’t respect my time, my knowledge of my own body, or my 20+ years of experience of chronic pain and illness. and i tell everyone i know that THEY are allowed to fire their doctors, too.

i tell my *new* husband when i am injured or feeling like crud, even if he’s watching tv, and you better believe he’s gonna turn that tv off and ask how he can help me.

i ask a lot of questions at every doctor visit and when i pick up medications, and if i don’t like the answers, i ask follow-up questions. a LOT of questions.

i share my experiences at my website, on social media, in my email newsletter that reaches 5,000 people every week, in my book, in my speeches, on podcast interviews – and at events like this. basically i blab all over because i want to reach as many people as is humanly possible.

so. will you join me? will you get BIG?

The post It’s time to make ourselves BIG in the face of illness, even while the world wants us to be small… appeared first on ChronicBabe.

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Hi! I’m doing something I don’t usually do today, and that is beg for you to tell other people you like me. The WEGO Health Awards are happening again (I’ve won a few in previous awards) and this year, I’m up for three awards. I can’t get to the finalist category without your help. Please read on for information about how to endorse me so I can move into the finalist category.

One of the best ways for me to spread the word about my work is to win awards; they put me in front of huge new audiences, and that means I can help many more people.

It feels weird to ask for your help, but I do need it; in the WEGO Health Awards, finalists are chosen mostly by how many endorsements they get. And we are many, babes! So we should be able to rustle up a bunch of endorsements.

Head to my personal WEGO Health Awards page now and click “Endorse Jenni Grover” to submit your endorsement. While I would love for you to endorse me in all three categories, if you only pick one, go for the Lifetime Achievement Award. I mean, I’ve been blogging for 13 years, which basically makes me a dinosaur, so I feel like it’s an appropriate award for me. 

It will also be a huge help to me if you share a plea with the folks you care about, asking them to endorse my work. I know it’s a lot to ask of you, but if you love what I do, or if you’ve benefitted from ChronicBabe in any way, would you consider asking your friends and family to take a moment to endorse me?

How can I thank you? By continuing to do this work, which I plan to do. Thank you! xoxo

The post Please take a moment to endorse me in the WEGO Health Awards appeared first on ChronicBabe.

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