Patients for a Moment: The Stresses of Chronic Illness

Welcome to the April edition of the Patients for a Moment (PFAM) blog carnival.

Patients For A Moment is a patient-centered blog carnival - for, by, or about patients - that was started by Duncan Cross. The goal of the carnival is to "build connections within the community of people who blog about illness, disease, and disability. This includes doctors, nurses, caregivers, even policy wonks – but especially patients."

This time participants answered the call to write about The Stresses of Chronic Illness: all the big or little things that cause you stress and make life with chronic illness challenging.

I am pleased and excited to present these 16 17* responses.  Each one tackles the answer to this query from a different perspective.  After reading all of these posts, I can honestly say I need to take some time to appreciate all the different ways of thinking about this topic, as well as review the wealth of suggestions for coping with stress.

So let's dive into the discussion, shall we?

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Stressed Because Being Sick Changes Everything

Dear Iris does the best she can with the limited energy she has, but she still keeps getting behinder and behinderer (real words, she promises!)  In The Stress of Living with a Chronic Illness she talks candidly about all the ways having lupus has changed her life--not all for the better.  She blogs over at Sometimes It Is Lupus.

Lorna from Life with RA is a Pain admits that she has a lot of stress in her life, from multiple sources, much of it linked to her chronic illnesses.  So much stress in fact that she isn't sure what to do when her usual stress-relieving strategies don't work. So she's inviting you to read her post Stress And Chronic Illness and leave her a comment with your stress-busting suggestions.

"Chronic illness feels like a constant fight against your circumstance," says Rosemary of Seeking Equilibrium.  When she was healthy, she used to love flying through life by the seat of her pants; now that she's sick, life is more like one great, big pain in her fanny. Read more of her wry and poignant insights in Here's My Number So I'll Call You, Maybe.

Symptoms = Stress...and Stress = Symptoms

In her post The Stress of Chronic Illness: How Stress Triggered My Sleeping Chronic Illness, Julianna from What the Jules discusses how the stress of her "healthy" life created the conditions for the seeds of her chronic illnesses in her body to germinate, sprout and grow.  She now copes by figuring out healthier and easier ways to do things, the basis of her new, lower stress lifestyle she terms "chronically awesome."

If you live within an invisible chronic illness, you will be able to relate to what Cheryl says about living a dual existence, i.e., what you "looks like" versus what you "feels like."  And if you live with her particular invisible illness, you'll understand when the first question she asks you is "Where's your bathroom?"  Click here to read The Bathroom Burden at Wings Like Eagles in the Desert: A Journey through the Wilderness of Chronic Illness.

In PFAM - The Stress of Having a Chronic Illness - Fibromyalgia, Laurie writes honestly about what it is really like for her to live with fibromyalgia, stating that the pain is not just physical, but emotional too.  Her funny and sad portrait highlights the daily stresses that are part of her now "half life."  See for yourself over at Hibernationnow.

Sometimes it's denying the need for some honest-to-goodness help that causes the most stress when it comes to living well with chronic illness.  The Afternoon Napper makes this point quite brilliantly in Whichever Way You Swallow It - A New Medication Adherence Method.  Please head over to The Afternoon Nap Society to see for yourself...

Anya of The Patient Patient knows that her physical illnesses create stress, anxiety, depression and loss of self-confidence.  She recognizes that getting overwhelmed by these feelings can, in turn, worsen her physical health.  In her post Feeling stressed about being stressed!, she explores the mind-body connection as well as explains her approach to stress management.

So there are the stresses of everyday life and then there are the stresses imposed by chronic illness.  So what do you do?  Well Donna Kay created a plan to manage her everyday stressors so she could focus on taking care of her health and taking advantage of opportunities to have some fun too.  Visit Healthier Stay to view her post My Routine For Spontaneity.

Health Care Stress

When you're chronically ill, is it too much to ask for something in the health care system to go smoothly, just once?  Leslie of Getting Closer to Myself discovered that the answer to that question is a discouraging, "Yes it is." She shares her story of how procuring a prescription turned into an annoying and unnecessary ordeal in A “Bitter Pill”: Weighing In On Our Broken Healthcare System.

Dana at Chronically Mommy shares her post The Stresses of Chronic Pain--Misconceptions and Stigmas! with us.  In it she discusses the misinformation friends, family, health care providers and the public believe about what it means to live with chronic pain.  She points out that those mistaken views and opinions often translate into health care for patients that emphasizes learning to live with pain instead of offering treatment plans to help us manage It.

When it comes to managing fibromyalgia symptoms, most reputable health websites state that "your doctor's treatments combined with good self-care will decrease pain and minimize symptoms."  Selena from Oh My Aches and Pains! believes that she is doing everything she can with her self-management techniques; what she says is missing is a doctor that understands her pain AND is willing to treat her for the long haul.  Learn the whole story when you read The Stresses of Seeking Medical Treatment for Fibromyalgia.

Chronic Illness, Stress and Relationships

The stresses of illness sure do complicate our lives and put pressure on our relationships, especially our marriages.  Fortunately Helena learned three strategies that can really make a difference when stress from illness impacts our partners and passes that knowledge on to us in her post Illness, Stress and Marriage at Chronic Marriage.

Our partners can feel stressed out when they don't get what they need from us because our chronic illnesses get in the way. Thankfully one of the members of Rona's health care team helped her with a very important relationship issue, advice she shares with us in Shhh! I'm Going to Talk About Chronic Pain and Sex at her blog BerryMorins Bits and Tips.

Kathy at FibroDAZE found out that stress can rear it's ugly head at any time, like after an exhausting trip to the grocery store. While resting in bed afterwards, her thoughts turned to questions about what the future holds for her and her husband as she ages with chronic pain.  Check out Grocery Store Blues and let her know if you think about these things too.

But Wait, Is All Stress Bad?

Yes, sometimes the symptoms of our chronic illnesses stress us out.  Maria at My Life as a Puddle empathizes with you, but also encourages you to transform your stress into success by not letting your symptoms hold you back from doing things you really want to do. Read how she did this in her post Hyperhidrosis & Yoga.

O.K., so stress may (or may not) make the symptoms of your chronic illness worse.  But Duncan points out that it can also be a good thing, as in motivation for getting out there and enjoying life to the fullest despite being chronically ill.  Take a moment to reflect on this message in PFAM: Avoid stress, avoid life which can be found over at Duncan Cross: ill. humored.

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That's all for this edition.  I hope you have as much fun reading this as I did putting it together.

Here is where I would direct you to the blog of the next host for PFAM...but instead I am going to ask for volunteers!  We need 8 people to come forward and graciously offer to host PFAM at their blog for the months of May, June, July, August, September, October, November and December 2013.

This is your opportunity to help keep this blog carnival tradition going.  Hosting is easy and I can certainly answer any questions you might have about how to do it.  To learn more about being a host check out the Application Information for Hosts here.  Then contact Leslie at gettingclosertomyself at gmail dot com if you are interested.

Also, don't forget to check out the PFAM website and like the PFAM Facebook page.

*My apologies to Dana from Chronically Mommy for temporarily omitting her post.  I rectified my error on 4/16/2013.  I blame the huge fibro-flare I am currently enduring for making it harder for me to be organized and pay attention to details (amongst other things!)  As someone who also lives with chronic pain, I know she understands.

Join Me for the October Edition of PFAM: The Fright Files

We're all human.  (Even the zombies and vampires among us where once human...)

We all make mistakes...including your doctor. 

EEEeeeeekkkk!  

Since those of us with chronic illness use the health care system the most, I'm sure you all have a story (or two) to tell about the misteps, mishaps and misadventures that have happened to you in the course of getting medical care.

You"ll have until the 12th of October 2012 at 11:59 PM Pacific Time to get your story to me.  

Once you've published your post on your blog, send me:

1. Your name (as it should appear)

2. Your blog’s name

3. Your post’s title

4. Your post’s URL

5. A brief two sentence summary of your post

You can email me here.  

You can find more information about Patients for a Moment here.

Invite your friends to join us too.

I'm dying to read your submissions!

Patients for a Moment (PFAM): Independence & Chronic Illness

Image by Hryck. via Flickr

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.

~The United States Declaration of Independence

These are perhaps some of the most famous words ever written about independence.  Too bad chronic illness throws a monkey wrench into the pursuit of these inalienable rights. Suddenly everything we hold dear is affected by illness and we are often left feeling so much less than equal.  Unfortunately, independence is one of many things that can get changed, modified and taken away when you start living with chronic illness, day in and day out.

Today I have the honor and privilege to showcase what independence means to persons living with chronic illness--the good, the bad and everything in between.

Phylor explores her state of (in)dependence and shares with us all the ways chronic illlness makes her dependent on others.  The she steps back and revels in the things that chronic illness cannot take away from her.  You'll be inspired by her battle cry when you head over to Phylor’s Blog: chronic pain, life, and all that to read her post.

Over at Painy Days & Mondays, Summer explores her complex relationship with the cane she uses to ease her pain and exhaustion in Letting Go of Symbolism.  This story beautifully illustrates how something that might be considered a symbol of infirmity actually became something that granted her more independence.  Her second contribution, Suggestions on How to Get Out of the House, is a cornucopia of good ideas on how to prevent your chronic illness from keeping you housebound when you really, really, really want to get outside and do something fun.

Many of you will be able to relate to Kathy of FibroDAZE as she talks about her dream of being Miss Independent and her reality of needing to rely on her husband and his paycheck for food, shelter, a computer and spending money.  She shares her genuine fears about what would happen to her if anything happened to her hubby.

A lack of Independence can really get you down.  Many of us have been there like Laurie of Hibernationnow's Blog is now.  Her chronic illnesses are preventing her from participating in her son's college orientation this summer and other fun summertime activities and she is really feeling crummy about it.

This next post from Mo is Blogging...I Think made me think of myths and fairy tales.  You see, while chronic illness has made Mo a little short on her goal of Independence, her illness has spurred the growth of independence in her two sons and her husband. It's almost like what she gave up went directly to her sons...

Dana reminds us that chronic illness can have its ups and downs, ups and downs that can translate into alternating periods of dependence and independence. Right now things with her chronic illnesses are good and she is enjoying what she calls My New Found Independence!  Help her celebrate by heading over to I Already Gave My Right Arm To Be Ambidextrous! and don't forget to leave her a comment.

It's a real pleasure to introduce you to Emily Ruth of Chronically Creative, a first time Patients for Moment (PFAM) blog carnival participant.  Emily is a young adult who is supposed to be transitioning towards independence.  Instead, she is learning about Living a Self Sufficient life Despite Chronic Illness.  Stop by, say hi and marvel at how her independent spirit shines through her words.

In this post from the ChronicBabe.com archives, Jenni answers the question "How does pain affect your independence?" in How asking for help has brought me closer to friends.  This post is part of a group blogging roundtable discussion sponsored by the How to Cope With Pain blog, so you'll want to click this link to read how other top bloggers answered this same question too.

The Oh My Aches and Pains! contribution to this topic is my post What Ever Happened to Miss Independent?  It seems that I'm not the only one asking this question; my husband would like to know where his "I can do it myself" wife went too.  Which just goes to show you that the people around us are feeling the impact of our chronic illnesses too.

In addition to the contributions I received, I went searching for a few more bloggers to feature in this edition and found some real gems.

I love the author of Coping With Chronic Illness.  She reminds me of a really good mom or therapist.  Her post Independence Day is the most wonderful pep talk.  Bookmark it for days when you are really missing your independence and need a gentle kick-in-the-pants to get over it and get on with the business of living.

Nuni's post about all the Things that help me maintain independence fit perfectly with our PFAM theme so I wanted to include it.  She reminds us that sometimes it's the little things that can make a big impact on our sense of freedom as well as our health.  Nuni writes about what it is like to be a college girl with chronic illness at Ponderings by Nuni.

I was touched by the frankness and honesty of Deandra's discussion of independence in her post Living with cancer: Evolving independence at Women's Magazine.  Most of all, her message that every little thing we do to take care of ourselves is a small step in the direction of independence is one we all need to take to heart.  Deandra lost her battle with ovarian cancer in July of 2010, but lives on in these words of wisdom she shares with us all.  

Thank you to all the patient bloggers who submitted posts. Thanks to Leslie who does an outstanding job of managing the PFAM blog carnival and to the carnival founder Duncan Cross. Once again, I had a great time hosting (minus a few technical glitches on my end--sorry!) and promise to volunteer again soon.

Please mark your calendar for the next edition of PFAM, which takes place on July 20, 2011 at Tonja's blog Pink Doberman. If you'd like to participate, the submission deadline is July 17th.  Visit the Patients for a Moment website for more information, including submission guidelines and information on how you can host PFAM on your blog too.

   

OMA&P! Hosting Patients for a Moment (PFAM) on July 6th

It is my honor and pleasure to host the next edition of the Patients for a Moment blog carnival here at Oh My Aches and Pains on July 6th.

Patients for a Moment is a patient-centered blog carnival with the goal of creating a patient blogger community. But participation isn't just limited to those living with illness. Behind every chronically ill person stands a team of medical professionals, friends and caregivers--even health care advocates and policy makers--and all are encouraged to participate!

This Edition's Theme

Since our next carnival happens around the USA 4th of July holiday, I'm asking you to submit a post on the theme of independence.

Let's face it: chronic illness can definitely be a challenge to a person's autonomy and self-reliance. So I want to hear about how chronic illness has impacted your self-sufficiency and ability to do things for yourself. So...

• As a person with disabilities, you might write about how chronic illness has decreased your independence and what steps you have taken to regain it.
  
• As an advocate, you might write about your efforts on behalf of persons living with disabilities to help them maintain their independence.
• As a medical professional, you might write about how you help your patients maintain their independence in the face of disabling medical problems.
  

How To Participate

Please send your submission by the end of the day on Sunday, July 3rd via email. You can find my email address by clicking Contact Selena here or at the top of my blog. In your email, please include: your name (as it should appear), your blog’s name, your post’s title and your post’s URL.

I truly look forward to reading all you submissions.

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The 'Facing Your Fears' Edition of the Patients for a Moment Blog Carnival

Welcome to the Face Your Fears edition of the Patients for a Moment blog carnival. This time patient bloggers were challenged to write about their fears: what they are, how they face them and what they do to overcome them. The results are, in a word, fantastic. Not only are there plenty of tips, tricks and strategies shared in this collection of 14 posts, there are wonderfully encouraging and reassuring examples of how people living with illness are successfully facing all sort of challenges that life is throwing their way.

The Really Big Fears

In her post Fear, Amanda recounts her journey with a chronic and progressive liver disease that resulted in her liver transplant on August 31, 2010. She makes a very compelling case for changing how we think about the uncertainties in our lives. Read her encouraging and heartwarming story at Amanda's Journey.

Joanna is kind of enough to share a lot of things with us about her fight against thyroid cancer, including her method for fighting her fears. Now she is in control! Get the details when you visit her post Life Redefined: Unlearning Fear over at Dear Thyroid.

Lauren calls her latest hospitalization a "veering off the road and into the dark unknown." And it has been one scary ride! How she faces the fear entangled with a new diagnosis turns out to be a lesson for us all, as you will discover in Myasthenia Gravis: A New Diagnosis Knocks Me From My Path at her blog Novel Patient.

Questions and Answers

Embrace that your worst fears about your health have just come true? Don't be taken aback by this bold question posed to us by SR at How Can I Explain It to You? The Life of a Grad Student with Lupus. Read the post Sunday Breakfast Club: Worst fear? Check. and benefit from the words of wisdom she provides.

You have to admire Aviva's honesty and candor when she talks about the three things that scare her the most in Things That Go Bump in the Night. This Sick Momma also shares her coping strategies, which include taking things one minute, one hour and one day at a time.

"Can you believe that she has Fibromyalgia?" Rosemary Lee thinks fighting the disbelief she faces from her friends and family makes it harder for her to face her own fear about living with chronic illness. Get the whole story in Fear and Loathing in Las Vegas over at her blog Seeking Equilibrium.

In just a short year and a half, Annie has made some extraordinary progress in her battle against her fears. Sharing her advice, you can just feel her building strength, courage and winning attitude. Read What Am I Afraid Of? Almost Everything! at It's Time to Get Over How Fragile You Are and see how Fragile Annie is coping with her physical and mental illnesses.

Humor and Insight

It is worth a trip over to visit Rachael at Glass of Win just to see the humorous cartoon she uses to illustrate the first of the four fears she discussed in PFAM: Frightfully Fearful. We can relate to her discussion about "medical upkeep" and hope the new health care reform law will address this important issue.

Leave it to witty Nessie at lipstick, perfume and too many pills to inspire our fight against fear with, among other things, a quote from a famous science fiction novel. Read this quote and all the other useful and uplifting insights about fear she uncovers in litany against fear.

Do you try to sweep your fears under the rug, only to have them pop back out because you've stuff too many of them under there? Boy can Jamie, the Chronic Migraine Warrior, relate. She share four tips on how to cope and would like you to add to her list with your comments. Check out Fear in the Life of a Chronic Migraineur.

Crying by the pool might not be cute, but it was just the thing ChronicBabe Jenni needed to do. In that moment, she realized she needed to face the fears that were holding her back from the life she wanted to be living. She showing us all we can have the life we want too, despite chronic illness, in her post It's Time for Some Big Changes at ChronicBabe HQ.

The Every Day Fears

Sure, she's had cancer. But it was all the little things Selena here at Oh My Aches and Pains! had to do to restart her life after cancer treatment that scared her the most. In her post Nothing to Fear, she describes how she felt the fear and began to live her life once again.

Face life....one fear at a time. at it's no more in my head is a simple but elegant explanation of how chronic illness can transform ordinary things like taking a walk alone and or saying no into everyday fears. Shweta tells us about a time when illness gave her nothing to look forward to, so she decided to reframe her fears into challenges and in the process created a new element of excitement in her life.

Sometimes it's the little reminders of your chronic illness that cause the most fear, like weigh gain, hair loss and pudgy fingers. So Phylor decided to try to the "light of day" approach with her post fears, phobias, philosophizing, and PFAM at Phylor's Blog to see if she could move beyond her self-described phobias.


So did you get inspired and motivated reading all these great posts to face your own fears too? We hope so!

Thank you to all the patient bloggers who submitted their posts for consideration. Thanks to Leslie who manages this blog carnival and to the carnival founder Duncan Cross. We had a great time here at Oh My Aches and Pains! hosting once again and look forward to the next time.

We are please to announce that Rachael of Glass of Win is hosting the next edition on October 27, 2010. If you'd like to participate, please visit the Patients for a Moment website for more information, including submission guidelines and information on how you can host PFAM on your blog too.

Good Reads for the Weekend: 4th of July Edition

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It's time again for another edition of Good Reads for the Weekend. Once again, you can find me featured in three different places around the blogosphere! Two of my posts you have already read if you visit here frequently, but that's no excuse not to visit both the ChronicBabe and Patients for a Moment blog carnivals because there are plenty of other great posts featured. Then head over to Colloquy Moms for a great idea for your 4th of July barbecue.

First up is the ChronicBabe blog carnival where the theme this time was tips for new ChronicBabes. My pal The Fibrochondriac asked me to help out this time putting the carnival together, which was a real honor. My post Chronic Illness: It Sucks ... And I Deal With It is part of the lineup that includes others like You Are Not, What Your Doctor Couldn't Tell You and When Calamity Calls. So click here to head over to the ChronicBabe website.

At Patients for a Moment, it's a celebration! This edition marks the first anniversary of a blog carnival that strives to get people living with and blogging about chronic illness to start connecting with one another. The question Duncan asked us all to answer was What have you learned about yourself, your illness, and other sick people? I submitted my post The Benefits of Being a Sick Chick in answer to his question. Other answers include how love is bigger than fear, taking up too much of your doctor's time and learning a lot in two years. Click here to read all the featured posts and connect with other patient bloggers.

Finally, here is another post from my new gig as a weekly contributing blogger over at Colloquy Moms. This week I wrote American as Apple Pie, a recipe for a barbecue twist on this classic dessert. Check it out and let me know if you try it ... and liked it!

So include blog reading into your weekend plans and be sure to spread some comment love along the way.

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PFAM Blog Carnival: Travel from the Chronic Illness Point of View

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Welcome to the Patients for a Moment (PFAM) blog carnival! This time the theme is travel from the chronic illness point of view. Our travel group consists of eleven bloggers, all persons living with chronic illness, who each have a unique and personal take on the subject. So stow your luggage under a seat or in an overhead compartment, return your folding tray and seat back to the upright position and fasten your seat belt as we take off for a virtual flight around the blogosphere.

Pack Your Bags

Being prepared and planning ahead are travel musts for persons with chronic illness. Rachel of Tales of my Thirties demonstrates the strategies she uses for herself, a type 2 diabetic, and her husband, a type 1 diabetic, with her video blogging entry: Vlog: Long time no see…

Diana at Somebody Heal Me is determined to help us get organized with her list of travel tips, including some very good ideas about traveling with medications. I recommend you print out her post and use it as a part of your personalized packing list. Read 14 Tips for Chronically Ill Travelers and don't forget to check out the links at the bottom of the post from even more information for travelers with disabilities specific to planes, trains and buses.

Kathy over at Fibrochondriac has a lot of good reasons to be traveling this summer, including a family reunion and the birth of a grandchild. But she admits she still struggles with making sure her medications get packed and her shampoo and conditioner bottles are labeled, which is why she is asking for reader suggestions in her post Might As Well Be A Travel Blog.

Planes, Trains and Automobiles

Gerri has been traveling too. At 50 is the new 40, she tells us she got to witnessed with birth of her grandson on her last trip from Oregon to Arizona to visit her daughter. In her discussion of her solo travels by airplane, chronicled in Calgon Take Me Away!, she comes to the realization that she needs to start doing things differently at the airport and the hotel to accommodate her arthritis and fibromyalgia.

America has a love affair with the car, and Rosemary at Seeking Equilibrium likes driving in the fast lane. Or at least she used to before her life with fibromyalgia. In this hilarious post Let's Go For a Sunday Drive, she talks about all the ways her chronic illness has transformed her into one of those little old lady drivers she used to curse at under her breath as she sped by them.

Kathy at Making Noises tries to balance her need for communing with nature and the joy it brings with the inevitable post-trip symptom flare-up she knows is coming. She shares with us some absolutely beautiful pictures of her excursions with her husband to the foothills and mountains of the Canadian Rockies in her post Day Tripping.

It's Not All Fun in the Sun

Kairol over at Everything Changes reminds us that not all travel entails arriving at a tropical resort or sightseeing in the big city. Her frequently travels take her to New York for doctors' appointments. Luckily, one of her readers tipped her off to a good strategy to utilize and she wrote Traveling With Cancer or Chronic Illness? to pass this good advice along to us.

Best Kept Travel Secrets

Did you know that a certain big box store allows customers to sleep overnight in their cars in the parking lot while they are traveling? What you might not know is that there are other travel advantages to using a big box store or national chain to fill your prescriptions. The How To Cope With Pain website and blog shares the low-down with us in the post A Pharmacy Secret.

Here at Oh My Aches and Pains! I recognize that my husband is the number one reason I can leave the house and attempt to travel despite the baggage of my multiple chronic illnesses. I think that finding a great partner to share the journey of life is perhaps one of the best kept travel secrets. Read more about my recent vacation planning session in Have Husband - Will Travel.

How many of you know what a Golden Access Passport is? Or where you can find free things to do or free attractions to visit in 1,500 cities across the United States? Lisa at Rest Ministries Chronic Illness Pain Support is letting us in on all the great secret deals and her best travel advice in Travel Tips When Living with a Chronic Illness.

On the Road Called Life...

Wendy took a trip to the zoo and her life changed forever. A simple tri-fold pamphlet she picked up at an outreach table was her first step in a painful journey that changed her life fundamentally for the better. She tells her story of transformation in her post My Chronic Illness Journey – The Trip I Never Expected (or WANTED) to Take on her blog Transform Your Chronic Life.


Thanks for traveling with us and come back and see us again real soon! Join us June 16th when Patients for a Moment creator Duncan Cross hosts the one year anniversary edition of PFAM over at his blog. Submit your post by the end of the day June 13th to be included in the next edition. Thanks to all the participants, readers and to Duncan for letting me host a second time.

Patients for a Moment: Submit your post by 5/30!

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Hi there! Just one last reminder that the submission deadline for the Patients for a Moment (PFAM) blog carnival is tomorrow, May 30th, by the end of the day wherever you are. The theme is travel from the chronic illness point of view and I am really looking forward to reading all the posts you, my fellow bloggers, submit.

I want to encourage first-timers especially to submit a post for consideration. It wasn't that long ago that I submitted my first post to a blog carnival ... and it was PFAM! I find participating in a blog carnival is a great way to showcasing your best writing while increasing traffic to your blog and meeting and reading other great health and patient bloggers in the process.

So come ... submit! Then check back on June 2nd to see what others have to say about travel from the chronic illness point of view. See you then...

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Call for PFAM Submissions 5/30/10: Travel From the Chronic Illness Point of View

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I am pleased to announce that I am the host for the next edition of the Patients for a Moment (PFAM) blog carnival.

I am getting the word out early, as the deadline for submissions is the end of the day on Sunday, May 30th, which is right in the middle of the Memorial Day Weekend holiday here in the United States.

In honor of this holiday, which marks the unofficial start of Summer for Americans, I've decided to ask for submissions based on the theme of travel from the chronic illness point of view. For example, you could tell us where you have been, where you are going and where you dream of being despite illness. It could be a story about the places your chronic illness has taken you, a road not traveled or an unexpected stop along the way. Your travel story can be literal or figurative, a how-to or a moment of introspection. I could go on and on, but I think you get the picture.

To submit your post, click here --> Email Selena from Oh My Aches and Pains! Please include the following information in your email:

• Your name (as it should appear)
• Your blog’s name
• Your post’s title
• Your post’s URL

I'd also really appreciate it if you could help spread the word on your blog, Facebook and/or Twitter.

Don't forget that you can host the Patients for a Moment blog carnival on your blog too by contacting PFAM creator Duncan Cross. Plus don't miss out on all the fun of the the first anniversary edition of PFAM on June 16th hosted by Duncan himself.

I can't wait to see what you all have to say!

Check Me Out: Two Blog Carnivals in One Week

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Writing on a theme suggested by someone else can be a blessing or a curse: blessing if the theme inspires you and curse if it stymies you! Writing two themed posts in three days for two different blog carnivals---well that is exhausting! But I did it and now I get to take a break today while I promote one awesome ChronicBabe and the two wonderful blog carnivals she hosted this week. She saw fit to publish my posts on Learning to Live with Pain and What's your most laugh-out-loud illness-related experience?

Now, because it was a busy week for Jenni at ChronicBabe too, these blog carnivals are short, sweet and to the point. First up is the ChronicBabe Blog Carnival #3: Learning to Live with Pain that includes this post:

At Oh My Aches and Pains, Selena offers us a Chronic Pain Toolkit.

The next ChronicBabe blog carnival is on May 18th and the theme is Parenting with Chronic Illness. If you want to participate, send your name, the name of your blog, the name of your post, and a 1-2 sentence description of the post to chronicbabe@gmail.com. The deadline is Sunday, May 16, at 10pm CST.

And guess what? I may not have kids, but I am a parent of a different sort thanks to chronic illness. Rest assured I will be writing a post on this theme very soon.


I am also featured in the Patients for a Moment blog carnival hosted by Jenni this week as well. Patients for a Moment: What's your most laugh-out-loud illness-related experience? includes this recent post:

Selena at Oh My Aches and Pains! says, "Yes, there are laugh-out-loud moments in my life with fibromyalgia. Granted, many of those moments take on the flavor of a Three Stooges episode. While living with fibromyalgia isn't inherently funny, I think life really isn't worth living if you can't laugh at your situation or yourself every once in a while."

The next edition of Patients for a Moment will be hosted by Lisa Copen at Rest Ministries. Be sure to submit your post by the end of the day Sunday May 17th to be considered for inclusion when the next edition is published on May 19th.

So get out there (virtually) and discover some new bloggers with interesting and funny things to say!

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• ChronicBabe Blog Carnival #3: Learning to Live with Pain (chronicbabe.com)
• Patients for a Moment: What's your most laugh-out-loud illness-related experience? (chronicbabe.com)

OMA&P! featured in PFAM Blog Carnival #20

Image by orangeacid via Flickr

It's time again for another edition to the Patients for a Moment (PFAM) blog carnival, this time hosted by Vladimir at WellBook.org. He asked the question:

My question is about adapting - the ol' "bend but don't break." If you have a chronic illness, you may not be able to pursue the goals you'd have if you were healthy. My question therefore is, "how have you learned to adapt around your illness in order to accomplish things that are important to you - even though your illness may prevent you from achieving the goals you had before you got sick?"

And here is my answer:

Selena can't "just do it" anymore. Dealing with doctors who don't get it hasn't been fun, but she's shrunk down her ambitions and she's found ways to remain active in ways that her illness allows. Getting a dog has helped her to continue taking walks and do milder forms of exercise than before she was ill: "Just Do It"--The Cure for Fibromyalgia?

But hey, but don't just take my word for it. Check out all the patient bloggers featured in this edition of PFAM by clicking here: PFAM 20 Adapting Around Illness. Plus Vladimir asks us all to sign up and check out Well Book while we are there. It's a site full of helpful health tracking tools, support, advice and motivation.

If you are a fellow blogger, consider joining the PFAM carnival. Get the scoop on how you can participate by visiting the PFAM website.

Patients for a Moment #16: Four Letter Words

Welcome to the 16th edition of the Patients for a Moment (PFAM) blog carnival. This is my first time hosting PFAM and I really enjoyed the experience. Thanks to Duncan Cross for allowing me to pose this Valentine's Day inspired question:

Love? Hate? What are the four letter words you use to describe your life with chronic illness?

I enjoyed reading all the submissions and found a whole range of four letter words that describe life with chronic illness. They include: real, help, much more, near and dear, full, work, care, muse, loss, miss, risk and defy.

REAL

In a post that is a true expression of love, Ashley of Lymenaide: living in Harmony with Lyme submitted a post written by her husband Sander about her struggles with Lyme disease. Ashely educates us that in her husband's native Australia, the term fair dinkum means real. This post touched my heart as Sander describes the real sacrifices he has made to help Ashely get on the road to recovery from Lyme disease. Read Lyme is a Fair Dinkum Disease.

HELP

Trudy of A New Beginning: My Life with RSD starts by talking about love, then gets to the heart of the matter. After being diagnosed with Reflex Sympathetic Dystrophy in 2005, Trudy needed a whole lot of help from her husband with just about everything when she lost the use of her hands. Her post illustrates what can happen when a marriage transforms from a husband and wife team to a patient and nurse relationship. Read Keeping Love Alive During Illness.

MUCH MORE

"The word pain just sounds so insignificant," Jolene of Graceful Agony: Living your best life despite chronic pain states. For something that impacts her life so completely, she thinks pain should be a word that is bigger, bolder and commands more respect and attention. Her post reminds all of us who live with chronic pain that pain is what we feel, not who we are. In her post she invites us all to get to know much more about who Jolene really is despite living with chronic pain. Read Pain is a 4 letter word.


NEAR & DEAR

Annie's blog title is both provocative and full of truth: It's Time To Get Over How Fragile You Are. Tired of life being dictated by her health problems, Annie endeavors to be proactive about really living. Annie shares with us a "beautiful lie" from her childhood and her discovery that chronic illness has brought her more love from the people that are near and dear to her than she ever thought she would have in her life. Read Love and Chronic Illness.

FULL

Laurie at A Chronic Dose ponders the roles of love and hate in her 29 year journey with chronic illnesses. On the one hand, she notes that time and acceptance have helped her not feel hatred when she thinks of the various losses linked to her health struggles. On the other, she admires how she has figured out how to build a life full of things she wants to do and how she fortifies it against the attempts of illness to take little pieces away from her. She realizes that living a full life means she doesn't have to hate her illnesses. Read Give and Take.

WORK

Take a trip through time with Lisa at the blog Brass and Ivory, brought to you by the four letter word work. Her post demonstrates how chronic illness can change the course of a life through its up and downs. Her definition of work has changed over time and, yes, managing health problems is work. Yet despite it all, she shows us how our desire to work--to shape, form and improve ourselves and proceed towards goals or along a path--still remains. Read Illness in One Word: WORK.

CARE

Enjoy a little Valentine's Day whimsy with a poem written by Dot at Fibro World. Like she says, living with fibromyalgia might be blue, but the support of all the people she cares about helps her get through. Read Fibro Valentine: Roses Are Red, Fibro Is Blue...


MUSE

Sharon at After Gadget: Facing Life After the Loss of My Service Dog writes a loving and touching post about her life with her "hindrance dog." It seems that life with Gadget didn't start out very well, but after struggles and frustrations during training he transformed into a magnificent helper on which she came to rely. Though he is no longer with Sharon, the memories of their time together now bring her happiness and Gadget lives on as her blogging muse. Read Sick Humor Retro: The Hindrance Dog.

LOSS

Living with illness brings many changes to our lives, both visible and invisible. Kelly at Rheumatoid Arthritis Warrior took the time to create a list of 20 ways RA has changed what she sees when she looks in her mirror. Her simple list recounts for us of all the little ways illness creates loss in our lives. Read 20 Signs of Rheumatoid Arthritis in the Mirror.


MISS

All too often part of the illness experience is letting go of previous life plans and careers that just don't fit any more. Finding yourself on the path not taken can make you feel totally lost and missing your old, pre-illness life. Diana from Somebody Heal Me: the musing of a chronic migraineur shares with us what it feels like now that chronic migraines have taken away her ability to pursue her dream profession. Read Lost: Chronic Pain Erased My Plans.


RISK

How difficult it must be to know that each time you eat a new food you risk worsening your Crohn's disease and suffering some very unpleasant, gut-twisting consequences. Such is the life of Duncan from Duncan Cross: ill. humored who is the founder of the PFAM blog carnival. Food is his four letter word, and until science comes up with a better way for him to get nutrition, he is resigned to having to eat it. Read Food is a four-letter word.

DEFY

My contribution to this edition of the PFAM blog carnival is a post about the words can't, won't and don't, which symbolize the barriers and limitations people with chronic illness face. While it is true there are things I can not do or change, I can defy those limits by focusing on the can's, do's and will's that still exist in my life. I'm rediscovered my fighting spirit, striving to live my best life despite chronic illness. Read Can't, Won't, Don't.


That's all for this edition of Patients for a Moment. Join us next time when Leslie from Getting Closer to Myself hosts on February 24th. Her question for us then:

What’s Illness Got To Do With It? What is your relationship to illness? Is there a particular time when you wish illness wasn’t in the picture? Or is there a time when you find it’s easy to forget about illness?

PFAM 2/10: Love, Hate and Other Four Letter Words

Image by doryexmachina via Flickr

This is the last call for submission for the February 10th edition of the Patients for a Moment (PFAM). Per the PFAM guidelines, the deadline to submit your published blog post to the host (that would be me!) is by the end of the day today. I am looking forward to reading the submissions and admiring the creativity that abounds in the blogging community.

I wonder how many four letter words I am going to find in the blog posts submitted. I'm excited to hear the your answers to the following query.

Ah, February! Valentine's Day will soon be here and love is in the air. Or is it, if you are a patient for a moment? Is love still in your vocabulary or has it been replaced by other four letter words? Let us all know when you submit your blog post answering this question:

Love? Hate? What are the four letter words you use to describe your life with chronic illness?

I am accepting submissions until 11:59 PM PST today, so there is still time to join PFAM by contacting me.

OMA&P! Hosting the PFAM Blog Carnival 2/10/10

Image by laurenmarek via Flickr

Selena at Oh My Aches and Pains! is hosting the next edition of the Patients for a Moment blog carnival on February 10, 2010. Here is the question she is asking participants to respond to for the next edition:

Ah, February! Valentine's Day will soon be here and love is in the air. Or is it, if you are a patient for a moment? Is love still in your vocabulary or has it been replaced by other four letter words? Let us all know when you submit your blog post answering this question:

Love? Hate? What are the four letter words you use to describe your life with chronic illness?

Please send your submissions to Selena@ohmyachesandpains.info by 11:59 PM PST on February 7. We can't wait to see your answers!

OMA&P! featured in the Patients for a Moment Blog Carnival

Thanks to Kairol at Everything Changes for including me in the latest edition of the Patients for a Moment (PFAM) blog carnival. Kairol is a cancer survivor like me and has written a wonderful book titled: Everything Changes: The Insider's Guide to Cancer in Your 20's and 30's.


The theme for this edition of PFAM is The Down and Dirty Body. Kairol included my post in 'praise' of the H1N1 virus:

From their nose to yours? School your co-workers in why they need to stay home when they’re sick with this excellent primer Thank You, H1N1 Swine Flu from 21 year leukemia survivor Selena of Oh My Aches and Pains!

Check out all the contributors to this new edition of PFAM by clicking here. As always, there are lots of great posts to explore. Thanks again to Kairol at Everything Changes!

PS When last I traded emails with Duncan Cross, the founder and creator of the Patients for a Moment blog carnival, he asked me to host PFAM right here at Oh My Aches and Pains! on February 10th. I have tentatively set the theme to be Love & Other Four Letter Words. The submission deadline is February 7.

Oh My Aches and Pains! Featured in PFAM Blog Carnival

Thanks to Jenni at ChronicBabe for including me in the 12th edition of the Patients for a Moment blog carnival.

Jenni lives with fibromyalgia and other chronic illnesses just like me. She coined the catch word ChronicBabe and developed the ChronicBabe website and forum to help young sick chicks embrace a positive identity in their quests to live well despite health challenges.

I LOVE thinking of myself as a Chronic Babe!You can find Oh My Aches and Pains! mentioned under the heading Cool Tools. Jenni writes:

"Fibromyalgia Scientist" Selena offers some fantastic "findings" in her post, Fibromyalgia Scientist Case Study: Grocery Shopping. Her blog, Oh My Aches and Pains!, is full of great advice like this. Keep researching, sister!

You can check out the latest edition of the Patients for a Moment blog carnival by clicking here. There are lots of great posts to explore. Thanks again to Jenni at ChronicBabe

Oh My Aches & Pains! in Patients for a Moment Blog Carnival

Thanks to Kairol at Everything Changes for including me in the 11th edition of the  Patients for a Moment blog carnival.  Kairol is a cancer survivor like me and has written a wonderful book titled: Everything Changes: The Insider's Guide to Cancer in Your 20's and 30's. 


You can find Oh My Aches and Pains! mentioned under the heading Dictionary Love.  As Kairol explains

"My inner-author and inner-patient geek out together over words, language, and medical meanings.  I’m glad to know I’m not the only one." 

My post featured in the blog carnival:  

"Selena Inouye defines suffering in Each Has Their Suffering on Oh My Aches and Pains."

You can check out the latest edition of the Patients for a Moment blog carnival by clicking here.  There are lots of great posts to explore.  Thanks again to Kairol at Everything Changes!