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Monday, January 31, 2011

Question of the Week: If You Could, What Work Would You Do?

Woman working on an airplane motor at North Am...Image by The Library of Congress via Flickr
I know that many of us living with chronic illness aren't able to work right now. I also know that many "healthy" people just don't understand our inability to work because we "don't look sick." If you live with chronic illness, you know how hurtful belittling comments and attitudes of disbelief can be.

So let me set the record straight. I would rather be flipping burgers at MickeyD's, cleaning toilets or collecting garbage than stuck at home, day after day, with unrelenting chronic, severe pain and severe fatigue. Not being able to work translates into a huge loss of many things for me, including income, freedom, purpose, accomplishment and social interactions.

I think that most of us disabled by chronic illness feel the same way. We all wait for
the day when medical science figures out how to successfully treat (and cure!) our illnesses so we can get back to living a normal life like everyone else does. A normal life were working is a big, important part.

Just because we can't work right now doesn't mean we don't sometimes think and dream about it. So this week, I want to hear about those thoughts and dreams when you answer this week's question in a comment here or over on the Oh My Aches and Pains! Facebook page.

Ready? Set? Go!

If your health didn't stand in the way,
if money were no object and you didn't need to go back school to get more education or training, what job would you have?

My answer: I would run a non-profit organization that gives money to innovative research and social service programs that offer real solutions for people dealing with poverty, homelessness, substance abuse, physical and mental illness. I know that so much money is wasted on programs and services that don't really help and I wish I could help figure out what really does work.

(Thanks to my friend Julie who inspired me to ask all of you this question.)

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Friday, January 28, 2011

Bits and Pieces: The Weird and the Wonderful

Selena kisses Endymion while he's asleepImage via Wikipedia
Fun Facts about Selena


My wonderfully unique name, Selena, comes from Greek origins. I wrote a post about the meaning of my name which you can read here. Now despite my name, I am not of Greek descent. Apparently Selena caught my mother's eye as she flipped through the pages of a book of baby names.

The weird thing about having a Greek name is that I get spam mail written in Greek, which of course I cannot read.

A Hand on Fire

Wednesday evening I experienced a disturbing form of neuropathic pain: the palm of my right hand literally felt like it was on fire.

It all started when I decided to give my husband a nice little break from doing the dishes. The warm water hitting my right hand set this whole pain in motion. It's like my right hand overreacted and miscalculated just how warm the water was.

My left hand said to my brain, "It's tolerably warm."

My right hand said, "This water is scalding hot!"

What did I do? Well, I tried very hard to tell my brain that my right hand was playing tricks on it. I held an ice pack in both hands. I noted how the left and right hands felt, then I told my brain, "The left hand is correct. The right hand is mistaken." I repeated the exercise, placing both hands on my warm cheeks, on the cool leather living room couch and on my warm and fuzzy black cat.

The good news is that the searing, burning pain eventually went away by the time I woke up on Thursday. It was beyond weird and I'm still not sure what caused it. I did however have a wonder-filled time experimenting with it, trying to convince my brain it was interpreting the signals it was getting incorrectly.

I've Fallen Asleep and I Can't Wake Up

Sleep is always a dicey proposition with me, but this past week it seemed like waking up was getting harder and harder to do too. I even asked my husband to rouse me over the weekend in an attempt to try and get back on a more normal schedule. Problem was, I got to the couch and promptly fell back asleep.

I worried I might be getting sick with a cold. I dreaded that the extra sleepiness was a sign a flare-up was on the way. I even considered searching Google to see if this was a weird symptom of a new sleep disorder...

Then I read someone's tweet on Twitter. They remarked that taking their meds late the night before made for a very sleep morning the next day. After reading this I experienced one of those light bulb moments. I realized I was doing exactly the same thing.

All I can say is I follow some pretty wonderfully helpful people on Twitter.


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Thursday, January 27, 2011

Mission 2011: Stand Less, Recline More

it's more restful to recline
As January comes to an end, it's time for one last Mission 2011 post on the topic of making activities fibro-friendly by modifying body position.

This week I revisited the concept of a body position hierarchy and reviewed the things I need to keep in mind whenever I am standing, sitting and reclining.

The Body Position Hierarchy

It might seem strange to look at body positions and arrange them in an order from most energy consuming to least. But when you live with chronic illness you quickly realize that how you move your body can have a tremendous impact on your pain and fatigue levels.

Did you know that your heart rate is a pretty good indicator of how hard your body is working? I learned this when I wore a chest strap heart rate monitor while engaging in my every day activities. It really helped me see the impact my body position had on my heart rate. It was quite enlightening! (You can read more about the benefits of using a heart rate monitor at the CFIDS and Fibromyalgia Self Help site.)

The Workout = Standing

The act of standing actually recruits a large set of your muscles, from your legs, buttocks and stomach to your back and shoulders.
Plus while you stand your muscles are continously contracting.

Fortunately, I've learned some strategies for dealing with, and avoiding, standing:

  • I bring along a cane/seat combination and sit instead of stand. (This one is my hands-down favorite.)
  • I use the shopping scooter the store provides. If it is not available, then I grab a shopping cart to rest one foot on the bar between the back wheels and lean against the handle while waiting in line.
  • I place one foot slightly in front and one foot slightly behind my body and sway forward and back while standing. The movement allows my muscles to alternate between contracting and resting, which in turn helps me stay upright longer. (I was taught this technique by a physical therapist who said this movement is more energy conserving than swaying side-to-side.)
The Energy Conserver = Sitting

This body position save a ton of energy over standing, but still can be pain and fatigue inducing.

Why?

For starters, with your legs positioned below your thighs, your heart needs to use extra energy to get the blood in your legs back to your heart. For most healthy people, this isn't even noticeable, but if you have problems with fatigue, raising your heart rate even a little over an extended period of time can make fatigue worse.

Another consideration is that maintaining this position for extended periods can actually contribute to more stiffness and pain. This is especially true when you are stuck in the car or on a plane while traveling. Taking the time to gently stretch, wiggle or get up and move every hour or so combats this problem. Look here for some suggested seated stretches for people with fibromyalgia.

Plus if you are short in height like me, another problem you may run into is not being able to rest your feet flat on the floor. Having to support the weight of your legs with your thighs while you sit is going to burn even more energy, not to mention contribute to back pain.

This is especially problematic for me in, of all places, the doctor's office. My legs always dangle off the edge of the exam table, so I move to the chair or stool in the room while waiting for the doctor. At home, something as simple as a phone book or small stool will make a huge difference when you are seated in a chair that is too tall for you.

The Most Restful = Reclining

You have probably figured out that reclining solves the problem of your heart having to work a bit harder to keep blood flowing back from your legs. While a La-Z Boy recliner can get the job done in royal style, you can also achieve this in a simple and more budget-friendly manner by placing an ottoman, stool, coffee table or another chair in front of you while sitting. Soften up a hard surface by adding a pillow or cushion and you'll be comfortably reclining in no time.

Even while lounging in a top-of-the-line recliner, you may find you need to add a lumbar support pillow or neck support pillow to achieve a truly comfortable and ergonomic position.

Knowledge is Power

I think knowing this body position hierarchy can help anyone make more informed and fibro-friendly choices.

For example, knowing that sitting is more energy conserving than standing, you might choose riding a bicycle instead of walking for exercise to stay at a lower target exercise heart rate. You might buy a reclining couch instead of a stationary one the next time you replace the furniture in your living room. You might find more ways to do chores and tasks in a seated position. You might decide it's time to give up showering while standing up and purchase a shower bench.

A word of caution
: while reclining in the front passenger's seat of a car might sound like a good idea, it's not. It has been associated with serious, paralyzing spinal injuries and even death, which you can read more about in the article Death Nap.

In Summary...

The take-away lesson here is:

  • standing is more tiring than sitting
  • sitting is more tiring than reclining
  • to conserve energy, aim to recline more than you sit and sit more than you stand
  • minimize standing as much as possible with cane seats, walkers, scooters and other aids
  • when you are sitting or reclining, be sure to wiggle, gently stretch or move around every hour or so to keep from getting more stiff and sore

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Wednesday, January 26, 2011

(Almost) Wordless Wednesday: Fly Anyway



When you understand why something hurts,
it stops hurting.


When you understand you have options,
you take action.


And when you understand you have wings,
you can soar again.


The Universe

P.S. If it's still hurting, fly anyway.

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Tuesday, January 25, 2011

With Each New Diagnosis...

The phoenix depicted in the Aberdeen Bestiary ...Image via Wikipedia
Today I realized what all these diagnoses of the various and numerous illnesses and diseases my body has had truly represent.

It struck me today how they symbolize the multitude of little deaths I have experienced in my life:
  • The death of innocence.
  • The death of invulnerability.
  • The death of healthy.
  • The death of normal.
  • The death of plans and dreams.
In the novel that is my life, they are the antagonists that plague and torture me. They cause crisis and stir up trouble. They take away little bits of me and leave me forlorn and wanting. They bring about the ending to so many promising yet unfinished chapters. They are the demise of so many different versions of my character.

And yet, no matter how many times they break my heart, somehow each day I rise and face their challenges.

Admist the flames of the fire that each new diagnosis starts, I face new truths, learn new lessons, and stretch and expand beyond my former limits.

From the ashes I appear, reborn, stronger and fiercer that the last time. Each time I burn, my plummage gets more brilliant, with shades of deep purple, scarlett, green and blue. My tail is now solid gold and the song I sing is more beautiful and haunting than ever before.

I am the phoenix--for with each diagnosis I die just a little, and yet, with each diagnosis I am also reborn.

Such are the mysteries of life, my friends, such are the mysteries of life.


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Monday, January 24, 2011

Question of the Week: Do You Shave Your Legs?

After the BathImage via Wikipedia
I truly believe that for us women, the answer to this question quite possibly is a litmus test for determining whether or not we are living with chronic illness. Because let's be honest, most of us modern females see shaving as a mandatory grooming practice and would shave several times a week if we could. I am right, ladies?

By the way, I love that this question came from a reader last week. She submitted it via the Ask Me Anything link, which allows anyone to ask me a question anonymously via Formspring. She wrote:

Something I have been wondering about is shaving my legs! I have connective tissue disorder, which means I don't have Lupus, and I don't officially have RA, however my joints hurt. I have wondered do other women have problems shaving their legs too?
My answer: I don't shave my legs very often. In fact, during the Fall/Winter months, unless I have a special, dress-up event to attend, I don't shave my legs at all. Why? Because taking a shower is a workout and often I just don't have the energy to wash my hair, scrub my body and shave my legs too.

That said, I have looked into, and purchased, some helpers that can make shaving more fibro-friendly.

For example, I did buy a Panasonic Close Curves Ladies Wet/Dry Shaver. While an electric razor doesn't shave as well as a blade (like my favorite Schick Intuition), you don't have to jump into the shower to shave with an electric razor. That really comes in handy when you realize at the last minute you want to wear shorts or a skirt but your legs are covered in a garden of hair.

I also know there are razor extension handles that attach onto the handle of a standard razor. Using an assistive device like this can minimize the bending that goes along with this grooming task.

A third alternative might be a hair removal product, like Nair and Veet. I have fine hair and skin that can tolerate this kind of chemical product, so using Veet occasionally on my legs seems to work out O.K. for me. (I would strongly advise those with multiple chemical sensitivities (MCS) to follow the patch test instructions on the can/bottle to avoid an adverse reaction.)

Of course there are also wax hair removal kits, but I can't stand the pain or mess of them.

I do find that shaving when I am sitting on my shower bench is much easier. Shaving from a standing position is impossible for me. You might also consider doing what the young lady depicted above is doing. Take some towels, a pan of water and your shaving supplies into the bedroom and try shaving while seated on the bed. Doing so may allow for a more comfortable position while performing this task. (Although knowing my luck, I'd spill water all over the bed and need to change the linens afterward.)

So what is your answer to this question? Please share with us! I welcome your comment here or over on the Oh My Aches and Pains! Facebook page. Don't forget to let us know the fibro-friendly ways you've discovered that make shaving a bit easier for us sick chicks.

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Saturday, January 22, 2011

It's a Bloggiesta Weekend, Ole!

Pedro, the Bloggiesta mascot

I love my blogging friends. They always let me know about the most interesting blogging events, carnivals and challenges...

Now I'm a day late to the fiesta, but I still have time to participate in the 4th edition of the Bloggiesta. This edition goes from January 21 to 23 and there are tons of assignments and mini-challenges that I can participate in, all with the goal of making my blog a better one.

Plus I love the Bloggiesta mascot, Pedro--Plan, Edit, Develop, Review and Organize.

(Hmmm... I think I should include Pedro into my whole fibro-friendly concept.)

So I'm taking time this weekend to do the following:

  • clean up my blog tags
  • work on my archive page
  • back up my blog
  • analyze and re-evaulate my blog
  • manage my feedreader
The entire Bloggiesta fiesta last 76 hours and I'm joining 36 hours in, so my list is small and easy this time. That's OK, because the next Bloggiesta event is coming this July and I plan to participate more fully at that time.


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Thursday, January 20, 2011

Today is the International Day of Acceptance


From the website www.3elove.com:

Today is a day to...


  • Strive for the social acceptance of disabilities.
  • Embrace who you are, educate your community and empower one another.
  • Honor the late Annie Hopkins, co-founder of 3E Love.
"3E Love is more than living disabled but is simply about living. Everyone has the freedom to live their life. We challenge you to do what you love, because you'll meet some amazing people along the way, and that, our friends, is how you'll enjoy this ride that 3E Love calls, life.

Embrace diversity. Educate your community. Empower each other. Love life.


~ 3E Love Founder, Annie Hopkins (1984-2009)

Today I want you to know just one more thing about me...


---> I don't live disabled; I live life.


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Mission 2011: The Most Dangerous Room in the House

A fitted kitchenImage via WikipediaWelcome to another edition of my Mission 2011 posts.

This Month's Focus

January is the month I am taking a closer look at my body mechanics and assessing my progress in turning everyday tasks into more fibro-friendly activities. That means I modify tasks to make them more doable, less tiring and less taxing on my body. It is a concept I was first introduced to by a wonderfully helpful occupational therapist when I attended the Cedars-Sinai Chronic Pain and Fibromyalgia Program back in 2006.

My Most Dangerous Room

Today I want to talk about "the most dangerous room in the house." I know that statistically for most people that room is the bathroom. However, it seems that my efforts to make this room more fibro-friendly were quite easy. Using a shower bench to sit when I bathe and sitting on the closed toilet seat when I get out of the shower to dry off were two simple changes that had a big impact on making the bathroom a friendlier place.

So for me, the room that is "the most dangerous room in the house" is actually my kitchen.

In the Kitchen = On My Feet

This week I have really gotten back in touch with how much standing is part of normal activities in the kitchen and my huge need to minimize the time I spend standing, because standing is one activity that can really wipe me out in a few short minutes.

This probably explains why, for the first several years after developing fibromyalgia and chronic pain, I cut way back on cooking. Problem is, eating out, using meal services and buying prepared meals and produce from the grocery store are very expensive alternatives to making meals at home. After a hard look at our budget, I knew I had to figure out how to get back into the kitchen to save money and make healthier food choices.

Problem-solving: Meal Prep

In the kitchen, I tried using a stool to sit next to the countertop, but found that the construction of the countertops in my kitchen didn't lend themselves to sitting very comfortably. My body and arms where just too far away from the the work surface, so I wound up stretching and reaching away from my body and causing more pain. This modification seems to work better if I pulled the cutting board out and use it as a work surface, but this didn't provide a very large work area.

In the end, I resorted to taking my work to the dining room table in the adjacent room. It works better, but now I find myself walking back and forth from the kitchen to the dining room, transporting food and prep utensils. Which makes me think I need to do some additional brainstorming to streamline this process.

Problem-solving: Cooking Methods

It also became abundantly clear that stove-top cooking wasn't going to work if I needed to be seated in the kitchen.

Fortunately, I had discovered the wonderful world of crockpot slow cooking prior to my diagnosis of fibromyalgia. With a substantial library of slow cooker cookbooks at hand, as well as hundreds of recipes available free online, it was easy to get started making budget-conscious and great-tasting meals again. Plus this method of cooking lends itself to tackling cooking in easy steps and taking breaks in-between. For example: I can prep the ingredients early in the day, assemble everything in the crockpot for cooking a few hours later, serve the meal several hours after that and be left with an easy clean up before bed.

Another preferred cooking method is the oven. Since it is just me and my husband, we invested in a small Breville countertop oven than can cook a 13" pizza, roast a chicken, bake cookies and bake, roast, toast and broil pretty much everything else in between. A countertop oven means no bending over to get things in or out, which is another troublesome activity I talked about last week.

My Dream Kitchen

So I've come to conclusion that a remodel of my circa 1949 kitchen is the ultimate solution to my problems. Including things like pull out work surfaces that accommodate sitting for prep, lower countertops and wall ovens that minimize bending would be part of my fibro-friendly redesign. Now if I only had the money...

Until then, it's clear to me I need to keep experimenting with different ways to make the kitchen more fibro-friendly. You can help by taking a moment to share some of the kitchen and cooking tips you've discovered with me too.



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Wednesday, January 19, 2011

(Almost) Wordless Wednesday: Persistence




Persistence is not about knocking on one door...
until the dang thing finally opens.


It's about knocking on all of them.

Knock, knock -

The Universe

P.S. Insist on the destination,
not on how you'll get there.

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Tuesday, January 18, 2011

Jumping Through Hoops for My Friends

Magic Lantern Slide of a dog jumping through a...Image by National Media Museum via Flickr
Yesterday I had plans to spend time with a friend of mine.

She was really eager to see me since we haven't seen each other for months. I was encouraged by her enthusiasm, since getting together means she needs to come to me. She lives well outside my comfortable driving distance, so driving to her, or even meeting her half-way, isn't doable for me.

Now any visit with family or friends is always fraught with uncertainty. After all, even when I am consistently living inside my energy envelope, something like a change in the weather, allergies, a cold, a bad night's sleep or doing too much the day before can mean I have to cancel my plans. For me, making a date is a real exercise in optimism.

Plus for this particular visit, in addition to scheduling extra rest before and after our date, I knew I needed to run an errand to be able to make this happen.

You see, the last time we got together, I was so short on cash my friend had to pay for everything. She paid for brunch, she left the tip and she literally bailed me out of the parking lot. I was so embarrassed. Unfortunately, being short of cash sometimes is what happens when you are disabled and living off Social Security.

So this time, I wanted to pay her back. That meant asking my hubs to help me with a trip to the recycling center to take in the bottles and cans piling up in our backyard. Not a lot of money there, but just enough to pick up the check if we decided to head over to our favorite restaurant.

The trip Saturday to the recycling center wore me out! I crashed when we got back and slept for 3 hours on the couch. Then I worried on Sunday that I might have to cancel when I woke up extra tired and took another 3 hour nap. Remembering my friend's insistence that we make this work and her enthusiasm to see me, I managed to pull myself together Sunday night and made sure extra rest would see me through Monday.

In a surprising twist of fate, it was my friend who canceled at the last minute on Monday. She left me a message that a guy she met at Starbucks around New Year's had called her and asked her out for lunch. She hoped I didn't mind.

It's funny, because I am not quite sure how I feel about this.

I've canceled on her several times because I wasn't up to getting together like we planned, so on the one hand I figured that I shouldn't complain. But on the other hand, I was really looking forward to seeing her and was disappointed.

Plus there was all that preparation on my part just to get ready for our date. It's a lot of work for me to get together with someone, which is something that really hit home with me yesterday. I don't really think she or any other of my "healthy" friends and family truly understands this.

I know this will get worked out and we will reschedule. But in the meantime, I find myself pondering the question, "Should I expect my "healthy" friends be more reliable that I am?' That and I am once again amazed at how many hoops chronic illness makes me jump through just to spend some time with my friends.


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Monday, January 17, 2011

Question of the Week: What are your burning questions?

KENZImage via Wikipedia
I admit that I enjoy coming up with a question to ask you each week.

The best part for me is reading all your responses, both here on my blog and over at the Oh My Aches and Pains! Facebook page.

I marvel at how much your responses help me feel like part of a community that is coming together to provide mutual support. It fuels my hope that we can all get through this experience called chronic illness if we reach out and support each other. Doing this together, we will do more than survive--we will thrive.

Most of all, I am humbled when you tell me that my posts help inform and support you too.

So this week, the question that keeps popping up in my brain is, "What topics would my readers like to see me write posts about?"

So this week, please let me know, among other things:

  • What burning questions do you have that go unanswered?
  • What would you like to know about my chronic illness experience?
  • What things have you read or heard about chronic illness that you would like more information on?
I also want to take this opportunity to remind you that you can ask me a question at any time by:

  • leaving a blog comment
  • clicking the Ask Me Anything link at the top of this page to ask a question anonymously
  • asking a question on the wall or starting a discussion over on the OMA&P! Facebook page--especially useful if you want to gather many responses
  • clicking the Contact Selena link at the top of this page to send me an private email or submit a private comment form
The questions I like the best are the ones I can answer by writing a blog post so I can share your question and my answer with everyone.

Please know that I think that the only dumb question is the one that is never asked. So when I say 'Ask me anything!' I really mean 'Ask me anything!' I can't wait to read your responses to this post...


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Friday, January 14, 2011

Do Good: Get Involved with Love Drop

St. Valentine Day (water drops)Image by _Hadock_ via Flickr
I always enjoy letting you know about causes that need your support. Today I want to share about a brand new helping endeavor that needs your support and deserves kudos for doing
things differently.

Introducing Love Drop

Love Drop launched this month, structured as a sustainable for-profit company that just so happens to be in the business of doing good. To put it another way, they are creating a mi
cro-giving network. Rather than fund-raising, Love Drop asks those that can to pay to join their community, with monthly payments starting at just $1.

As a member of the community, you can suggest candidates for the monthly Love Drop and get access to lots of members-only goodies and perks on the website.

So What Does Love Drop Do?

Plain and simple, they mobilize a community to help people in need. They use the membership contributions to purchase the good and services the chosen monthly recipient needs. Then
they literally show up on their doorstep and help out, providing encouragement, support and a connection to caring people along the way.

January's Love Drop Recipient

Meet Jill. She and her kids lost everything in a fire and are now homeless for a second time. Despite all the adversity, she still finds a way to
continue to give back.


I encourage you to visit the Love Drop website and learn more about this unique approach to giving and helping others. While there, you can learn more about all the ways you can get involved, including joining the Love Drop street team and blogger network like I did.




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Thursday, January 13, 2011

Mission 2011: Bend Down, Not Over


I am so excited to get started reporting to you about my Mission 2011.

As I mentioned last week, January is the month that I am focusing on reviewing my progress on making activities fibro-friendly by modifying how I physically approach tasks.

Over the past two weeks I have been more closely observing my body mechanics to see where I need reminders and improvement. The first thing that literally jumped out at me is that I bend over from the waist way too much. Not only is this an example of bad body mechanics, it also potentially sets me up for problems with dizziness and fast heart beats related to dysautonomia and postural orthostatic tachycardia syndrome (POTS).

I've included a video at the bottom of this post to remind us all of the back-saving way to lift objects. The simple take-away message here is lift like a forklift, not like a crane. To put it another way, bend down from the knee, not over from the waist. Even if the object I am after isn't all that heavy, like a piece of paper or my keys that I dropped on the floor, I need to practice good body mechanics so I don't aggravate my pain or inadvertently pull a muscle.

But since living with fibromyalgia isn't just that simple, I also need to take this advice a little bit further...

  1. I need to remember to use a reaching device like a PikSitk to pick up small to medium size objects off the floor so I don't having to bend over at all.
  2. For tasks like loading or unloading the clothes wash machine and dryer or putting groceries away into the bottom half of the refrigerator, I need to consistently pull out my folding step stool and sit down for the task.
  3. I need to continue to rely on my husband so I can avoid the really heavy lifting.
  4. I need to check and make sure I position myself close to the object I am attempting to pick up, so I don't have to reach far away from my body once I get down there.
  5. I need to not hesitate to hold onto a chair or other object on my way down if my balance is shaky.
Another thing I noticed is that I hold my breath when I bend down. So this week, I have been extra vigilant about making sure I take a deep breath, exhale while bending my knees and then resume normal breathing at the bottom of the movement. Quite surprisingly, this simple "bending meditation" really does make a difference. I feel less taxed and more comfortable when I remember to breath out when I bend down like a forklift.

I encourage you to observe and see if you bend over more than you bend down. Plus try my "bending meditation" and see if it makes a difference the next time you retrieve an item off the floor. Finding the sweet spot is all about saving little bits of energy for healing throughout the day and I'm betting that proper body mechanics is one key way to do this.



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Wednesday, January 12, 2011

Bits and Pieces: Pink is Important & My Genes Can Predict the Future

DSC00697Image by ***Images*** via Flickr
Two things were on my mind yesterday...

Pink is Not the Same as Blue

I got a delivery yesterday of my CPAP supplies, which included the new ResMed Swift LX for Her mask. Using a CPAP can't really be described as fun, but I do make an effort to research all the latest therapy improvements to at least make it as comfortable as possible. So I was tickled when I opened the packaging and found that the back strap and the strap guards for my new mask were made from hot pink fabric.

Which got me thinking that pink really is important.

As far as I know, ResMed is the first company to make CPAP masks specifically proportioned for women. They also include literature with the mask that features women talking about sleep apnea. This woman-centered presentation makes me feel supported knowing that ResMed understands that the sleep apnea experience for women is similar, but not the same, as it is for men.

Success or Failure: Is It Written in My Genes?

Yesterday I met with my liver doctor for a routine follow-up on my chronic Hepatitis C (HCV) infection.

My doctor updated me on the exciting things coming soon to the world of HCV treatment. First up in a few months' time are the HCV protease inhibitors, antiviral drugs that specifically target HCV. Not far behind are the HCV polymerase and NS5A inhibitors, two more classes of antivirals. I followed up my doctor's appointment with a visit to the HCV Advocate website and my head was literally spinning after reading the names of all the 34 antiviral drugs currently in clinical trials for HCV.

Finally, the antiviral therapy I've patiently been waiting for, for 16 long years now, is almost within my grasp!

Unfortunately, in the near future, these antivirals will still need to be administered with the standard HCV treatment of interferon and ribavirin because HCV can quickly mutate, as fast as 3 weeks, and become resistant to a single antiviral medication.

But I learned something new today: there is a simple blood test I can take to determine if I will respond to the interferon component of the treatment protocol. The test looks at the IL28B gene. A variation to it's structure can predict whether interferon will succeed or fail at clearing my HCV infection.

That's pretty heady stuff.

Since there is no urgent reason to immediately pursue this, I plan to get the test a few weeks before my next appointment in June 2011 so I can get the results in-person from my doctor.


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