eader

Thursday, September 30, 2010

OMA&P! hosts 'Patients for a Moment' on Oct. 13

Patients for a Moment
It's time for me to get connected to the Patients for a Moment blog carnival again and there is no better way to reconnect than to host the next edition.

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

This time, I want to hear about your fears: what they are, how you face them and what you do to overcome them.

For example:
  • You can share a story about a frightful incident you faced connected to you illness and how you rose above that moment.
  • For medical professionals and caregivers, how do you help when those you care for are scared?
  • Health care advocates and policy wonks, what scares you most about our health care system and what would you do to fix it?
Yeah, illness can be a scary thing. So inspire and support us by sharing your secrets and strategies on how you rise above these intense feelings to face the challenges of life with illness. After all, the key to living well with illness is letting go of your fears.

Send in Your Submission

Please send your submission by the end of the day on Sunday, October 10th 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 can't wait to read your posts.



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Wednesday, September 29, 2010

Wordless Wednesday: My Mask Unmasks Fibromyalgia for Invisible Illness Week

Selena unmasks fibromyalgia










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Tuesday, September 28, 2010

You're Not Nice, Mother Nature

The Great Thermometer In Baker, California - G...Image by Rockin Robin via Flickr
Wow, it's hot in Los Angeles. It's more like Summer in Las Vegas than Fall in Southern California right now. Someone replaced the weather thermostat with an oven knob and then set it to bake...

Which got me thinking about that old '70's commercial for Chiffon Margarine. You know, the one where Mother Nature says, "It's not nice to fool Mother Nature!" punctuated with the sound of a lightening bolt. You can check it out below:



Well you know, Mother Nature, it goes both ways.

It's really not nice to fool with those of us who have chronic illnesses. We do our darnedest trying to manage our symptoms, day in and day out. Then you come along with your high and low pressure systems, your rain, your fog, your hot and cold spells and throw a monkey wrench into our best laid plans. Thanks a lot, Mother Nature.

So here I am, stuck indoors with the air conditioning blasting because I absolutely can't tolerate the 102 degree temperature outside my door. And it's the high pressure system causing the heat and/or the air conditioning that is making my fibromyalgia pain much, much worse. Plus my menopausal hot flashes are in full swing, so I've got my own little heat waves popping up throughout the day too.

As if to add insult to injury, with heat comes power outages from increased usage. Let me tell you, a power outage is my biggest concern right now. Because if the power goes out, I'm going to have to convince them to let me into the cooling center at the senior citizen center. Do you think I should bring my Social Security Disability award letter to convince them to let me in???

Yes, I admit defeat. I cannot control the weather. It frustrates me to no end that weather changes can flare up my fibromyalgia symptoms, but all I can do is grin and try to bear it.

You're not nice, Mother Nature.


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Monday, September 27, 2010

Question of the Week: How Do You Connect to Others?

elephant talkImage by gin_able via Flickr
I got together with a few of my friends yesterday.

We talked about our pets, new shoes and recent travels. The conversation got lively when the subject turned to the medications we take for our chronic conditions. That lead to a straw poll on TV commercials for fibromyalgia medications. The consensus: they advertise magical cures that don't happen in real life and all of us who have tried these medications want our money back.

After that, the conversation turned to reading books and how chronic illness makes even this simple task more difficult. Seems fibro-fog symptoms like short term memory problems mean a lot of reading the same page over and over again. I shared that since I now need reading glasses, it's made it more difficult for me to read. Someone suggested books on tape, which sounds like a good solution.

Eventually, the chat dwindled and we all went back to different pursuits, like watching TV, fixing dinner and getting ready for bed.

So how did I connect with my friends with chronic illness last night? By signing onto Twitter of course.

You see, when I first became chronically ill and disabled, I wanted to join an in-person support group. I wanted to meet face-to-face with other people going through what I was dealing with to give and receive support. It was a good idea, but after an exhaustive search, I couldn't find any groups. It seems getting together in person is a tall order for people living with chronic illness...

Then my friend Cyndie introduced me to the world of social media as part of our blogging challenge back in May 2009. Initially, I used social media to get the word out about my blog and share my posts. But then I started to discover how to connect with other people in meaningful ways by leave comments and sending tweets.

So my question this week is How do you connect with other people? Have you been fortunate to find in-person support? Do you use social media and, if so, where do you go online to connect? To participate, leave a comment here or head over to the Oh My Aches and Pains! Facebook page to join the discussion.

And thanks for taking the time to connect with me through my blog.


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Friday, September 24, 2010

Explain Your Pain: An Interview with ChronicBabe Jenni Prokopy

HealthyWomen.org
Tuesday morning brought a great opportunity to me. I participated in a telephone interview with Jenni Prokopy of ChronicBabe.com about the new Explain Your Pain educational program sponsored by the HealthyWomen.org website. Today I get to share this interview with you, my readers, and encourage you to visit the Explain Your Pain website for articles, videos and Q&A's that will help you learn to better cope with the daily challenges of living with fibromyalgia and chronic pain.



I visited the Explain Your Pain website and found these resources really helpful:
  1. the Check-Up Checklist with tips about explaining your pain to your health care provider
  2. the Q&A about sharing your fibromyalgia diagnosis with your family and friends
  3. the video Fibromyalgia: 4 tips for healthy living
Be sure to leave a comment here with your feedback about this educational campaign so I can pass the information along to Jenni and the HealthyWomen.org team.


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Wednesday, September 22, 2010

Wordless Wednesday: Exhausted



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Monday, September 20, 2010

Question of the Week: How Resilient Are You?

Rubber band ball (this is a new version as the...Image via Wikipedia
My husband and I were fortunate enough to scrape together some funds for some sorely needed repairs around the house and backyard recently. Since Robert works, I needed to change my schedule to be available to the handyman when he came to get the work done. Doing this over the past few weeks got me asking myself: How resilient am I?

Unfortunately, I don't think I am as resilient as I want to be.

What kind of rubber band am I?

To use an analogy, think of a rubber band. Your typical rubber band spreads out in all kinds of directions, but when you stop pulling it, it returns to it's pre-stretch shape.

But have you ever stretched a rubber band that had a weak spot in it, like a nick or cut in the elastic? Or stretched an old, brittle rubber band? Then you know that they can't withstand a lot of strain and are liable to break when drawn out to their limit.

I hate to admit this, but my chronic pain and fatigue make me more like that old rubber band.

Being flexible with my schedule only served to prolong my "September fibromyalgia flare-up" that began the week before Labor Day. It proved that my regular daily routine really does keep me in my energy envelope and protects me from flare-ups.

Now that I am all stretched out, I know it's going to take some time to get back into my usual shape. But at least I didn't break!

So how can I stretch further?

A year ago a wrote about about opening an energy savings account. The concept of banking energy every day instead of using up every last drop available to me fueled the idea. Well that and an inspiring quote from Bruce Campbell, PhD. of the CFIDS & FM Self Help Program
:

"The unexpended energy is a gift of healing you are giving to your body."


I think banking unexpended energy is the key to building resilience. Now I just have to figure out how to give this present to myself every day.


How resilient are you? What have you tried to build resiliency into your life with chronic illness? Share your thoughts in a comment or head over to the Oh My Aches and Pains! Facebook page to continue the discussion.



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Saturday, September 18, 2010

Invisible Illness Week: Weekend Projects

Paper bag AnonImage via Wikipedia
I don't know about you, but I have been really enjoying the
Invisible Illness Week Conference sessions over at Blog Talk Radio. Plus the great thing is that the sessions are archived so you can listen to them any time you want. In fact, listening to the ones you missed this past week might be a great weekend project:


Another idea for a weekend project comes from Leslie over at Getting Closer to Myself and all you need is a paper bag and some crayons or markers. Inspired by the work of Saul Steinberg, Leslie and her friend Maria of My Life Works Today are encouraging us to create a mask that unmasks our invisible illnesses. Once completed, they want us to post pictures of our masks on our blogs and/or submit a picture to them for their project.

You can read more about this project and see pictures of Leslie's masterpiece by reading her post Invisible Illness Awareness Week 2010.

This has been a busy and rough week for me, so despite my best intentions I'm still working on my paper bag creation. I hope to have it completed by Monday and I will post pictures of it then.

So those are my suggestions for some projects for the weekend that will help nourish your soul and support you in your quest to learn how to live your best life despite chronic illness. Have a great weekend!



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Wednesday, September 15, 2010

Monday, September 13, 2010

Invisible Illness Week 2010: Each One Can Reach One #iiwk10


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Invisible Illness Week: Is Chronic Pain Making You Blue? #iiwk10


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Invisible Illness Week: Living With Chronic Illness? #iiwk10


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Invisible Illness Week: I Live With Invisible Chronic Illness #iiwk10


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Invisible Illness Week: Got Pain? #iiwk10


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Invisible Illness Week: You Are Not Alone #iiwk10


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Friday, September 10, 2010

The Lessons Learned From My Latest Flare-Up

black leather setImage by Fuschia Foot via Flickr
I have some modicum of control over whether or not my fibromyalgia symptoms flare-up. Granted some things that flare me up, like the weather or catching a viral infection that leads to a flare, I have little or no control over. But in the spirit of focusing on the things I can change, I do have control over what I do day-in and day-out to stay inside my energy envelope.

My energy envelope

Living with fibromyalgia means I have a limited amount of energy every day. That limited amount of energy is my energy envelope. If I only expend the energy available to me, I stay inside my envelope. If I exceed my available energy, I step out of my envelope and into trouble. If I expend some energy and save the rest, I give my body the gift of healing.

The plan


Recently, I finally saved up enough money to be able to buy a fibro-friendly reclining sofa for my living room. I knew that I was going to have to get the room prepared for the new furniture. That meant getting the old sofa out, organizing the other furniture in the room and doing some much delayed (and avoided) Spring cleaning and decluttering.

So when I made my purchase, I schedule a delivery date for three weeks out so I could get these things done.

In the meantime, I rallied my husband to help me. Then I enlisted the help of an organizing professional. I let them both know we needed to get started early and work a little bit each week to accomplish my goal of getting the living room prepped and ready for new furniture. I explained that waiting to the last week to do everything wasn't going to work for me.

I felt confident that if I could stick to my plan, I could get everything accomplished and avoid a flare-up.

What happened

I was really depended on the organizational professional I hired to take my plan and run with it. Unfortunately, she had a family emergency and had to delay her participation.

She had a great plan of attack that included parking a small temporary storage container in our driveway so we could immediately clear out the living room and then repopulate the room at our leisure after the furniture arrived. It seems like a quick and painless solution, so my husband and I didn't worry too much when she couldn't come to help us until five days before the scheduled delivery.

After some confusion and mix-ups, we learned four days before the delivery that our driveway was too narrow for the forklift to deliver the container. On that same day, our organizer had to bow out once again because of family issues which she felt took precedence over her work commitments.

Robert and I quickly formulated Plan B. Subsequently, I wound up doing way too much in the final few days leading up to the furniture delivery.

The outcome

  • I fired the organizer.
  • I accepted that I was going to be stepping way out of my energy envelope and realized that I was going to be flared up as a result.
  • I prepared myself mentally for the consequences of my choice.
  • Now I am practicing patience as I wait to recover from my extreme trip outside my energy envelope.
  • Until then, I am resting and recovering on my new reclining sofa.
  • I acknowledge and applaud myself for tackling my first big project since living with fibromyalgia. Which means I've reached the point where I recognize that living my best life with chronic illness means figuring out to to face, not avoid, the big projects in my life.
  • For my homework, I need to learn how to better plan for big projects--like formulating several plans of attack up front. I think if I can master the skill of planning, I can be more successful, and less flared up, next time.

So what do you think about the lessons I learned from getting flared up?


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Thursday, September 9, 2010

All Flared Up, But Feeling Fine

Happy and Sad face are together.Image via WikipediaLet me get right to the point here. You read the title of this post and ask yourself (among other things), "How can she feel fine if she is all flared up?"

For starters, let me say that under normal circumstances, I do not experience regular, moderate to severe flares of my fibromyalgia symptoms. Why? Because I have learned to stay in my energy envelope. It took me five years to learn how to do this, but I know I have mastery of this concept now. How do I know? Because I went WAY out of my energy envelope several days last week and got severely flared up.

So while physically I don't feel so great, psychologically I feel O.K. because I have proof that the things I usually do on a daily basis to manage my fibromyalgia symptoms really work. I also feel good because I know if I can get back to this routine during and after my flare-up, I can prevent this from happening again.

So, do you want to know some of my secrets?


  1. Using an assessment scale, I determine my level of functioning. So right now, I am about a 20 out of 100, so I need to scale back the amount of activity that worsens my pain and fatigue to around 1 hour per day.
  2. I acknowledge that feeling good is dangerous and can lead to me overestimating my ability to engage in activities. So I remind myself of the Golden Rule of Chronic Illness:If I push, I will pay, If I pace, I can play.
  3. Next I plan out my activities for the day using the 15 Minute Rule. I schedule 15 minutes of an activity, then I stop to assess. If I feel more pain or fatigue, I stop and rest for 15 minutes. If I feel OK, I continue on for another 15 minutes. Wearing a timer around my neck helps me stick to my schedule.
  4. I recognize that I need to modify how I do things to make activities more fibro-friendly. Among other strategies, I sit down while doing activities and use aids like a Pik Stik reacher or the shopping scooter at the grocery store.
  5. I know what times of day are best for certain activities and I plan accordingly, sticking to a daily routine. For example, my hands often are numb and painful when I get out of bed, so I avoid using my hands a lot for several hours following awakening.


It is the knowledge that I have broken the push-crash cycle and can manage my fibromyalgia symptoms well enough to avoid major flare-ups that helps me feel fine despite more pain and fatigue right now.

Tomorrow I'll write more about how I got into my current predicament and the lessons I learned over the past week.



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Wednesday, September 8, 2010

Fibromyalgia & the Occasional Glass of Whine

"I shall hear no whine before it's time"Image by TW Collins via Flickr
Yesterday I attempted to get back into my normal swing of things. I'm dealing with a major fibromyalgia flare-up and it sidelined me over the long Labor Day holiday weekend, resulting in a brief absence from my blog and my Twitter account.

As I jumped back onto Twitter to catch up with my friends, many who also live with chronic illnesses, I found it weirdly and reassuringly coincidental that several other people were sharing that they were having a rough time right now. They offered me support and I supported them too.
In the process of sharing and caring, I got inspired to write this post.

I know that many of my tweeps (friends on Twitter) use Twitter to vent. To the uninitiated, it might seems strange to use this very public forum to discuss how you really feel, but it works oddly well because the people that don't want to hear how you really feel just won't follow you. The people that do follow you on Twitter are the people who share similar experiences and are looking for people who understand what it is like to live with chronic illness.

So when my tweeps and I feel sick and flared-up, we dish, vent, complain and whine.

Which got me thinking about whining and wondering why whining has such a bad rap, especially since it is something we all do. In fact, I think that whining is one of those necessary steps along the path to making changes in my life. I often find it isn't until I really get in touch with how unhappy, disgusted, frustrated and upset I am about something that I find the courage, motivation and determination to change.

Plus, on those occasions when I am stuck in complaining mode, whining becomes a sign to those closest to me that it is time for some straight talk and a
kick in the butt.

I know that some healthy people might think whining is a tool used by sick people to annoy others, but I see the occasional whinefest as a legitimate way to express the harder, rougher and more difficult aspects of living each day with chronic illness. And in a lot of ways, going onto Twitter and choosing to whine to those who really "get it," instead of people who would rather not hear it, might just be one smart coping choice.

What do you think? Is it O.K. to indulge in an occasional whine to a sympathetic ear? Do you let your close friends call you on your stuff if you get too whiny? Does whining help you build up momentum to make changes?

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