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Tuesday, August 31, 2010

Please Show Amanda Some Love Today--She Is Getting a New Liver!

Amanda Goodwin
I saw a tweet from my blogging friend Amanda Goodwin last night. She finally got the call. A liver donor has been found for her! She is receiving her new liver today.

You can read her announcement on her blog.

I am asking everyone to visit her blog and flood her with lots of comment love today. Then please keep her in your thoughts and prayers as she and her family go through this journey together.

The surgery is just the start of her recovery process...

I visited her blog a few days ago and read the most wonderful post that she wrote about the gift of an angel figurine she received named Courage. That story really touched my heart and I think it will touch your heart too.

I really believe that her angel has come through for her today.

So you have your assignment for today: show Amanda some love through a comment on her blog, a prayer or the gift of a healing thought.

Then say a pray of thanks to her donor and their family. It is tragic and sad that this family lost their loved one, but let them be consoled in the knowledge that, in death, their loved one saved two lives (read Amanda's post for the details).

Finally, if you are able, please consider becoming an organ donor yourself. You can learn more at Donate Life America.


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Monday, August 30, 2010

Gearing Up for Invisible Illness Awareness Week 2010

Invisible Illness Week 2010
It's almost September and time for National Invisible Chronic Illness Awareness Week. I wanted to share with you information about several aspects of this year's celebration and encourage you all to get involved.

Press Release


National Invisible Chronic Illness Awareness Week is September 13-19, 2010 and so far thousands of participants are showing their support through the social network, Facebook, the second largest site on the internet according to Alexa.com.

Lisa Copen, founder of National Invisible Chronic Illness Awareness Week, which she established in 2002, says, “In 2009 our nonprofit organization included Facebook for the first time in our awareness campaign and the results had a significant impact we could not have imagined.”

Copen explains that when people who live with chronic invisible illness join an Invisible Illness Week group, a “Cause” or “Like” a page, it is a non-intrusive way of saying, “This is something that personally affects my life and that I care about.”

According to Copen, before social media, many people expressed that it was uncomfortable to email their friends or family illness-awareness related materials without creating feelings of being pushy or critical of their responses to illness. Now, by joining a cause on Facebook and inviting friends to join, it is much simpler to create awareness about daily life with invisible chronic pain.

It is particularly enlightening when someone with an illness invites friends to join the Invisible Illness Week Cause, and discovers how many friends are also suffering silently from conditions such as chronic migraines or fibromyalgia. “Sometimes those of us with illness forget that we may have loved ones who are also silently coping with invisible chronic conditions,” says Copen.

Approximately 7000 thousand people are a part of Invisible Illness Week’s presence on Facebook and Copen says she would love to see this number continue to grow. “We have some amazing articles, guest bloggers, and seminars that will help people know they are not alone in their pain and how to deal with the daily part of it even better.”

With nearly 1 in 2 Americans coping with a chronic condition, they are not alone, but the invisibility factor can make it feel that way.

To join one of Invisible Illness Week’s Facebook groups, causes or more see http://InvisibleIllnessOnFacebook.com.

Media Relations Contact
Lisa Copen
Coordinator
National Invisible Chronic Illness Awareness Week
888-751-7378
http://www.invisibleillness.com


YOUR ASSIGNMENT

Did you see the post-it note at the top of this post? Guess what? Leaving little notes of encouragement in places were other people with chronic illness can find them is our assignment from Lisa this year. Watch her video here:





CALLING ALL BLOGGERS

Please head over to Bloggers Unite and sign up to blog for Invisible Illness Week. Lisa has posted some great ideas for blog posts and encourages us all to set Goggle on fire September 13 with the keywords "invisible illness week."



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Saturday, August 28, 2010

Good Reads for the Weekend: Lots of Linky Love!

Linked HeartsImage by amypalko via Flickr
I write this post every week with the intention of getting you to read new authors and visit new blogs. I also shamelessly plug places in the blogosphere where you can find me too! Most of all, I truly believe in the concept of linky love: mentioning other bloggers here at Oh My Aches and Pains! to help promote other blogs.

DiabetesMine

Let's start with a birthday present from Amy over at DiabetesMine. She wrote a post back in April about the new type 2 diabetes drug Victoza and I left her a comment reference my own blog post Ode to My Cereal Bowl. Wouldn't you know, when she wrote an update to that post this past Monday, she gave me some linky love to my own post. Sweet!

So please go visit DiabetesMine, which truly is a gold mine of great information about diabetes. Thanks Amy!

ChronicBabe

You all know I love participating in the ChronicBabe blog carnival. This time the theme was Arts & Crafts and my fab sleep scarf was part of the line-up. Since you have already seen that post here on OMA&P!, you should head over and read some of the other 14 bloggers featured. My favorites are posts from The Sick Chick, Amanda Goodwin, the Novel Patient and A Comic Life, Indeed.

I left them all some comment love and encourage you to do the same.

Patients for a Moment

I do believe that the Patients for a Moment blog carnival has the honor of being the first blog carnival I ever participated in and it keeps going strong. I submitted my post Selena Writes: A Letter to the Healthy People in My Life and host Leslie really liked how I described chronic illness as “like having a job, except I work 24 hours a day, 7 days a week without pay or benefits.”

I am but one of 10 featured bloggers, so please visit the carnival over at Getting Closer to Myself and discover some other great posts that answer the question: What advice would you give, or what would you want non-chronically ill people to know about your illness and your life?

I've got my comment love assignment for the weekend...

Invisible Illness Week

It's that time of year again, time to celebrate National Invisible Chronic Illness Awareness Week. This will be my second year participating in this virtual event which is happening September 13 through the 19th. Leading up to the festivities, Lisa saw fit to reprint my post How to Really Help Me When I Ask for Your Help in its entirety.

Lisa is showcasing many chronic illness bloggers on her site in these weeks leading up to awareness week, so I encourage you to check out the website to discover more great articles. Plus if you subscribe to emails from the Invisible Illness Week website, you will receive a FREE ebook with over 70 pages of tips on how to live successfully with chronic illness. Now that is awesome!

Enjoy these blogs and remember to leave some comment love of your own along the way.


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Thursday, August 26, 2010

Thoughts on food safety and flowers...

beautiful roses from Trader Joe's
I always cringed when I hear about food recalls and food-borne illness outbreaks in the news. As a person living with multiple chronic illnesses, I know I am much more susceptible to these pathogens. Heck, going out to dinner to a restaurant has taken on aspects of a Fear Factor challenge: I never know if I am going to get sick from what I ordered!

Recalled Eggs

So yeah, I freaked out when I got a call from Ralph's grocery stores here in Los Angeles that I had purchased eggs from that the skeevy Iowa egg farmer who had a history of violations dating back to 1994. How did they know? Apparently they accessed my shopping information from my Rewards Card. How 'Big Brother' of them...

In the recorded message, they gave me instructions not to eat the eggs and return them to the store. Only problem: I had already eaten the eggs!

So remember my mention of the "stomach flu" back in July...yeah, that probably wasn't a virus, it was probably food poisoning from salmonella.

Plastic Turkey Jerky

Continuing my streak of bad food luck, I found a piece of plastic in my Trader Joe's turkey jerky. I had collected all the little bits in the bottom of the bag and popped them into my mouth. Just as I was about to chop down on all that turkey jerky goodness, I felt something poke the top of my mouth. I'll spare you the details on how, but after that everything came out of my mouth for an inspection.

Wouldn't you know it, but that piece of plastic was the same color as the turkey jerky! I never would have spotted it in the package.

So I went to the Trader Joe's website and submitted a customer feedback form. And wouldn't you know it, the eggs I had bought from Trader Joe's were also being recalled! Robert confirmed that the carton in the refrigerator had the recalled Julian date stamped on it...and four eggs remaining in the package. Aargh!

All's Well That Ends Well

O.K, so it's clear I should be avoiding eggs and turkey jerky right now, but at least:
  • I didn't die from salmonella food poisoning.
  • I didn't choke to death on a piece of turkey jerky colored plastic.
  • I got a very nice response from Amy in Trader Joe's Customer Relations department in response to my feedback.
  • I got a full refund on the eggs and turkey jerky from my local Trader Joe's store.
  • I was give a complimentary bouquet of flowers by the manager at Trader Joe's. (see above picture)
Of course a warped thought passed through my sleep deprived and tired brain when I was offered my pick of any bouquet in the floral section. I commented to Robert, "They are probably happy to give me a free bouquet. After all, they don't have to pay for flowers and funeral expenses because I died eating their turkey jerky."

Check if you have recalled eggs.


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Wednesday, August 25, 2010

Wordless Wednesday: Sleep Scarf Photo Shoot Outtakes







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Tuesday, August 24, 2010

A Reader Asks: What medication do you find works for you?

Various pillsImage via WikipediaA reader asks:

what medication do you find works for you? i hav bn to see my rumotologist today, last time i saw her was 2004! i was told that they now think that fibro sufferes may be missing vitamin d, so i hav had a blood tst to find out, il let you know when i do


Dear Reader:


Unfortunately, I have not found any of the medications currently use for fibromyalgia helpful. Most gave me too many side-effects and needed to be discontinued. Finding something to help may mean a lot of trial-and-error on your and your doctor's part. It can be a frustrating and time/money-consuming process...

For flare-ups (i.e. short-term use), I have found prescription non-steroidal anti-inflammatory drugs (NSAIDs) helped. Long term, these medications were too hard on my stomach to be helpful.

Prescription Lidoderm patches and prescription topical NSAID gels/patches have also helped me. The problem with these is that they can only be applied to 1-2 places on your body at a time.

Here is some information on the prescription mediations currently being used for fibromyalgia: http://bit.ly/9MGrMs.

I tested Vitamin D deficient several years ago and take o 1,000 IU of ver-the-counter Vitamin D a day. Raising my vitamin D levels did not improve my fibromyalgia symptoms.

Thank you for your question! I hope that information helps. Feel free to ask another question any time. :-)


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My Birthday Greeting from the Universe


Yesterday I received a surprise from the Universe in the form of a birthday greeting in my email inbox. Truly, I didn't expect it. Then when I opened and read it, the message brought tears to my eyes. I can't imagine it was written specifically for me, so perhaps its power comes from being filled with so many universal truths or from being so beautifully written.

But here, you be the judge:

A few years back, not so long ago, heaven and earth erupted into a major celebration with the news of your impending adventure into this very time and space. You see, someone like Selena doesn't come along all that often. In fact, there's never been a single one like you, nor is there ever ANY possibility that another will come again. You're an Angel among us. Someone, whose eyes see what no others will EVER see, whose ears hear what no others will EVER hear, and whose perspective and feelings will NEVER, ever be duplicated. Without YOU, the Universe, and ALL THAT IS, would be sadly less than it is.

Quite simply:
You're the kind of person, Selena,
Who's hard to forget,
A one-in-a-million
To the people you've met.
Your friends are as varied
As the places you go,
And they all want to tell you
In case you don't know:
That you make a big difference
In the lives that you touch,
By taking so little
And giving so much!

Selena, you are so AWESOME! For your birthday, friends and angels from every corner of the Universe, including buddies you didn't know you had, will be with you to wish you the HAPPIEST of days and an exciting new year in time and space. You won't be alone!

HAPPY BIRTHDAY, Selena


Really all I can say is that the Universe is awesome. Well that and Happy Birthday indeed!

So what do you think of my birthday message from the Universe? And don't forget, you too can get emails from the Universe by visiting the TUT's Adventurers Club.


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Monday, August 23, 2010

Selena Writes: A Letter to the Healthy People In My Life

Mail blueImage via Wikipedia
Dear Healthy Person In My Life,

I live with chronic illnesses: fibromyalgia, myofascial pain, thoracic outlet syndrome, dysautonomia, chronic Hepatitis C infection and type 2 diabetes.

They are called chronic illnesses because currently there are no cures for them.

Without a cure, these chronic illnesses will be a part of all my days.

The only thing I can do is manage my chronic illnesses.

Managing my illnesses takes a team effort between my doctors, my supporters and myself.

The most important way I have found to manage my illnesses is through self-help techniques (like pacing, planning, resting, asking for help, setting limits and saying no.)

Managing chronic illnesses is like having a job, except I work 24 hours a day, 7 days a week without pay or benefits.

There is no vacation, no escape from chronic illnesses.

Having chronic illnesses means that my life has been forever changed.

For example, I can no longer remember what it feels like to have a day without chronic pain or chronic fatigue.

Having chronic illnesses doesn't mean that I am a bad person or did something horrible; they are not a punishment for past sins, weak character or lack of action on my part.

Having chronic illnesses doesn't mean I can't do anything, but it does mean that there are some things I can no longer do and changes the way I approach doing everything else.

Having chronic illnesses means that I will disappoint you with my lack of ability to be an average, normal, healthy person.

You may feel frustrated, angry or upset with me--know that I feel all those emotions and more when faced with my physical limitations.

Know that my goal is to live my best life despite chronic illnesses.

Know that I have not given up hope that maybe one day things will be better for me.

Until that day, managing my chronic conditions has to be my number one top priority.

The best ways you can be there for me and back my efforts to manage my chronic illnesses are:
  • to love me
  • to listen to me
  • to believe me
  • to support me
  • to help me
  • to respect my limitations
  • and to be patient with me
.
Thank you for reading my letter.

Sincerely,

Selena


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Sunday, August 22, 2010

Fibro-Friendly: The Sleep Scarf

Selena models her sleep scarf
For some reason, my neck seems to be the weak link in the chain of my fibromyalgia symptoms. It is most evident at night, when I go to bed. Seems I have a habit of throwing off the covers and leaving my upper body sans blanket. No blanket means my neck gets chilled, which results in more neck, shoulder, arm and hand pain in the morning.

It became clear to me that I needed a solution to keeping my neck covered and warm overnight. My solution was to invent the sleep scarf.

Making a sleep scarf is actually very easy, thanks to versatile fleece fabric. Did you know you can cut fleece and it will not fray? Which means you can cut out a fleece scarf of any size or shape and it will remain that way forever.

Note: Click on any of the pictures below to get a larger view.


Now the key to a sleep scarf is in the size. Compared to a store-bought scarf, you can see it is much wider. In addition, you make your sleep scarf longer than a regular scarf.


When you go to purchase your fleece fabric, you need to know that fabric comes in 45 and 60 inch widths. I made my scarf 84 inches long and 14 inches wide, so I purchased 2 1/3 yards of fabric to make my scarf. Since the fabric was 60 inches wide, I could actually make about 4 scarves total.

Suggestion: You might use the extra fleece to make scarves as presents for your family and friends.


All you need is fleece fabric, sharp scissors and a flat cutting surface. Hint: Pick fabric with a lined pattern to make the cutting process easier.




Once you cut out the basic shape, embellish the ends by cutting fringe. This is where using a lined cutting board really comes in handy.




Finally, the beauty of the sleep scarf is in the wearing. Simply fold the scarf in half and place it around the back of your neck, letting each end rest on your chest. Pick up the ends in your hands and insert the fr
inge through the loop created in the other end and pull it through. Adjust until the fit is snug but comfortable. I promise you, worn in this fashion, your sleep scarf will stay put throughout the night.


So that's all there is to making a sleep scarf ... a fibro-friendly (and fashionable) solution to avoiding neck chills overnight.

So what do you think? Are you heading out to the fabric store to get the supplies to make your own sleep scarf?

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Friday, August 20, 2010

Some More Bits and Pieces

CucumbersImage via Wikipedia
A Confession


Yeah, I haven't been as consistent with my blog posts these past few weeks and I blame it on the weather.

With the unusually mild summer in Southern California this year, I admit that I have been lured outside much more in the past few weeks. That and I have a garden bursting with green beans, cucumbers, tomatoes and other vegetable delights that vie for my attention.

Inspired by my current bumper crop of cucumbers, I am delving into the world of refrigerator pickles this weekend.

It's inevitable that when I spend more time and energy doing new things, I have less time and energy for my other pursuits, like blogging. Such is life of a person with chronic illness! So bear with me during harvest season and know that my blog is still at the top of my list of priorities.

Introducing Graceful Agony

August 15th marked the inaugural edition of the
Graceful Agony blog carnival. My post I Am Not My Chronic Illnesses made the list of incredible submissions and my blogging friend Jolene wrote some wonderful words about me when she introduced my post--thanks Jolene! Please support this new blog carnival by heading over there this weekend and leaving some comment love.

If you are a patient blogger, you are encouraged to get in on the action too! The best way to get involved is to join the Graceful Agony Facebook Group and the blog carnival discussion there.

What Is the New Normal?


If you want to find out what I think the "new normal" is, you'll have to head over to Colloquy Moms and read my latest Thursday post there...

Ch-ch-ch-ch-changes...

I just finished the 31 Days to Build a Better Blog challenge hosted by the SITs girls and The Blog Frog. Or should I say, the challenge ended and I did my darnedest to keep up but didn't quite get it all done! Thankfully what I was able to do helped me generate a lot of new ideas for my blog.

As the result of this training, I anticipate making some changes around OMA&P! that will make my blog a better place to visit. In fact, you can already see new items in the linkbars at the top and bottom of my blog header image: About Me, Get to Know Me in 7 Posts and the OMA&P! blog roll.

Perhaps the most important thing I can share with you is that participating in this challenge really helped me reaffirm my commitment to becoming the best blogger than I can be.

That's it for this edition of bits and pieces. Be sure to let me know what summer has lured you outside to do by leaving me one of your wonderful comments. (Did you know your comments really make my day too?!?)

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Thursday, August 19, 2010

The Tale of the HCV Drug Cocktail

"Flaming" cocktails contain a small ...Image via Wikipedia
In addition to reading a lot of new scientific finding about Hepatitis C, I am also reading about the new hope and promise of the first two antiviral drugs for the treatment of Hepatitis C: telaprevir and boceprevir.

New Ingredients


Here are some of the rave reviews:


Boceprevir, combined with interferon-α and ribavirin, cured the infections of about two-thirds of the patients who followed a 48-week course... Some patients were able to finish the course even sooner, at 28 or 36 weeks. (as reported by Nature News)

and


Telaprevir, also combined with the standard drugs, cured 72% of patients after just 24 weeks of treatment... Patients who responded quickly to the drug, within 4 to 12 weeks, were the most likely to be cured by it. (as reported by Nature News)

These first HCV-specific protease inhibitors represent a HUGE step forward in Hepatitis C treatment. It is anticipated that these two drugs will be approved by the FDA very soon. So what is a few more months when I have been waiting for these drugs for 12 years. Would it be so wrong of me to say that I want these drugs, that I need these drugs, to help me conquer my chronic HCV infection?

While I certainly don't want to rain on anyone's parade or take the wind out of anyone's sails, I admit that now that they are almost here, I have some concerns.

Concern One: The Old Recipe

First, I am very disappointed that, for now, these drugs need to be taken with the standard Hepatitis C treatment of interferon and ribavirin. I tried the standard treatment back in 2007 for two weeks. Why only two weeks? Because the standard treatment totally kicked my butt, landed me in the hospital, worsened my then undiagnosed dysautonomia symptoms and took my overall level for functioning from a 30/100 to a bed-bound 10/100.

So you can see, I am not very gung ho about trying interferon and ribavirin again.

Concern Two: Mixers

Secondly, I don't see any information about these two drugs being used together. I what I am asking, that 1) different drugs companies have to work together and 2) this approach could potentially expose one treatment as superior to another (among other things.) But if the future of HCV treatment is an antiviral cocktail of multiple drugs, shouldn't the emphasis be on testing the cocktail in controlled clinical trial settings versus experimenting with drug combinations willy-nilly in the doctor's office?

I don't want the competitive corporate interests of huge pharmaceutical companies to turn me a guinea pig when it comes time for my doctor to start prescribing antiviral medications for me.

Concern Three: Perfection

Third, I am worried about drug resistance. From what I have read, it became clear in clinical trials that taking just one protease inhibitor alone allowed the Hepatitis C virus the opportunity to become immune to the drug over time. It is for this reason the telaprivir and boceprivir are paired with interferon and ribavirin. I think this means you have to be near perfect in taking all three of these medications to avoid this happening to you.

Quite honestly, I don't know that I could be perfect for 24 to 48 weeks.

My Conclusion

For these reasons, I reluctantly admit that this may not be the right time for me to try and treat my chronic HCV infection again, even though my last viral load was 11 million. Much like the preview of coming attractions before the movie, the new HCV drugs appear to be just a glimmer of hope for more options to come. I pray that these two drugs open the flood gates, that more antiviral drugs become available soon so I can have my cocktail, sans interferon and ribavirin.

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Tuesday, August 17, 2010

My Mounting Fears About Hepatitis C

Simplified diagram of the structure of Hepatit...Image via WikipediaOf all my chronic conditions, I fear Hepatitis C the most. For years I have instinctively known that this little bit of single-strand RNA wrapped in a protective layer of fat and protein is wreaking havoc on my body despite the lack of scientific proof to back my claims up. I often imagine that if I could just be still enough, I might be able to hear the buzz of all those millions of little viruses invading my liver cells and turning them into viral replication machines.

Then this year I started reading more articles about 'scientific discoveries' related to Hepatitis C. Like this article with the headline Surprising Findings About Hepatitis C and Insulin Resistance which reported in March 2010 that:

In studying the insulin resistance of 29 people with Hepatitis C, Australian researchers have confirmed that they have high insulin resistance, a precursor to diabetes. However, almost all insulin resistance occurs in muscle, with little or none in the liver, a very surprising finding given that Hepatitis C is a liver disease. The extra insulin resistance caused by Hepatitis C apparently brings on diabetes at 35 or 40, instead of 65 or 70."

These findings were not a surprise to me. I have been living with type 2 diabetes since January 1999. The fact that Hepatitis C affects things outside the liver was also not surprising to me. After all, they take blood to do a viral load test, so obviously the virus is travelling around the body via the blood stream.


The news only gets worse. The next headline that caught my attention was Higher HCC (hepatocellular carcinoma) Risk With Increased Insulin Resistance in Hepatitis C Patients in May 2010. Yes, I have increased insulin resistance--increased insulin resistance is the hallmark of diabetes. So great, now I have to worry about an increased risk of getting liver cancer.

The latest headline from July 2010 Abnormalities of Lipid Metabolism in Hepatitis C Virus Infection wasn't new information for me either. The conclusion of the study was that "HCV is clearly exploiting the host lipid metabolism to its advantage" and creating "virally-induced fatty liver." So let's see, "the host" would be a very impersonal reference to someone like me and the "virally-induced fatty liver" would be the one inside me that has been like that for at least 12 year.

See, I told you that virus was up to no good.

Problem is, the more science catches up to my up-close and personal knowledge of Hepatitis C infection, the more freaked out I get that this small 60 nanometer Flaviviridae family virus lurking in my body is going to be my greatest enemy. Clearly this virus has not gotten the message that it is not smart to damage or kill the host (aka me) that is supplying it with food and shelter. Which brings me to the conclusion that I need to get rid of this invader.

But the real question is: will the new antiviral medications so close to being approved be the weapons I need to win this war?

To be continued...


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Monday, August 16, 2010

Just Questions: Things I Don't Understand

Question book-newImage via Wikipedia
Welcome to another edition of just questions. Sometimes I find it's the questions that I am pondering that provide the greatest insight into where I am currently. So I guess creating this post is metaphorically akin to opening up my brain and checking out what is rattling around inside.

So here are the questions I am currently pondering:

  1. Why do my dogs always want to lick my feet?
  2. Why don't people spay and neuter their pets?
  3. How come having problems swallowing has to be one of my symptoms of fibromyalgia?
  4. How come when I have coughing spells after said swallowing problems, a nerve shock wave travels down my arms, into my hands and causes increased pain, numbness and tingling for several hours afterward?
  5. Why is it so bad to use a benzodiazepine every night to help one fall asleep?
  6. How come my doctors aren't prescribing the same medications that my friends with chronic illnesses are getting?
  7. How come I am still wanting a prescription to be the answer to my chronic illness problems?
  8. Why isn't the Hepatitis C cause getting the funding, support and attention it deserves for things like public education, testing and treatment?
  9. Why doesn't the American public know that more people have Hepatitis C than HIV infection?
  10. Why isn't there a bigger push to get antiviral Hepatitis C drugs out of clinical trials and into the pharmacy faster?

What are some of the questions you find yourself asking lately? Why not share one or more here by leaving a comment?


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Saturday, August 14, 2010

Good Reads for a Hot Summer Weekend

Two of the most common home animals (pets).Image via Wikipedia
Welcome to a dog days of summer edition of Good Reads for the Weekend. I have a lot of links to share with you this time, so let me get started...

Read Me at Colloquy Moms

First, have you visited the Colloquy Moms website lately? I'm going strong with my weekly posts there and invited you to check out the latest ones, like A Better Kind of Clean, Viagra vs. Birth Control: Do We Have Our Priorities Straight? and What Are YOU Doing to Prevent Your Kids From Getting Fat? Please leave some comment love for me on the Colloquy Moms website if you enjoyed these posts.

ChronicBabe Blog Carnival

Next up is the ChronicBabe Blog Carnival #10 and the topic is How Do You Deal With the Medical Establishment? My post Dear Doctor: My Wish List of Things You Can Do For Me is one of the many posts featured in this edition. Other interesting posts include Is It Time to Rethink the Fibromyalgia Doctor-Patient Relationship?, Take Two Happy Pills and Call Me in the Morning and Doctors Are People Too.

The National Fibromyalgia Association's Fibro Blog

I got a special surprise this past Monday when the National Fibromyalgia Association mentioned Oh My Aches and Pains! on their Fibro Blog as one of their favorite blogs. They specifically liked my recent post How to Really Help Me When I Ask for Your Help. I am humbled and honored by their recognition and proud to by one of many voices in the blogosphere bringing a greater awareness to the needs of people living with fibromyalgia.

Check Me Out on YouTube

Finally, I made a video this week. It took way more time than I expected and flared up my symptoms in my hands and arms, but I am hoping that all my work will pay off when I win the American Dream Video Contest sponsored by the National Disability Institute. The Grand Prize is $1,000 and a trip to Washington, D.C. to present my video at National Disability Institute's 6th Annual Real Economic Impact Tour Kick-Off Event. If I am selected as a finalist, I will need your help in the form of votes for my video at the Real Economic Impact Facebook and YouTube pages.

But for now, please head over to my YouTube page, view my video Selena's Dream Job, based on my blog post My Dream Job, and add your comments please.

Have a great weekend and see you back here on Monday!

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Wednesday, August 11, 2010

Wordless Wednesday: World Map of Fibromyalgia & CFS/ME


(click on the map to add yourself)

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Tuesday, August 10, 2010

100 Words: I'm Discombobulated

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Discombobulated: I don't know why I love this word, but I always have and it seems I always will.

Maybe it's because saying, 'My life is discombobulated.' makes me smile at the silliness of this last word.

Plus it sounds so much better than saying:
  • Pain and fatigue make me quite muddled.
  • My health is a mysterious puzzle.
  • My sleep feels quite disturbed.
  • My thoughts are all jumbled.
  • All my plans have been undone.
  • My ambitions appear frustrated.
Yes, when life leaves me befuddled and bewildered, it's much more fun to say 'I'm discombobulated.'


Do you have a favorite word or phrase you use to describe your state of being, especially when things aren't quite going the way you wish they would? Share it with me and your fellow OMA&P! readers...

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