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Wednesday, September 30, 2009

Linky Love: Thanks for Helping Me Update My Blog!

Oh no, here come the BloggersImage by Brett L. via Flickr


So what do you think of the new look of my blog? I spend a solid two weeks looking for free templates, headers, widgets and other cool things to remodel my Blogger blog. I want to pass along some linky love to all the people that helped to inform, instruct and inspire me to create a new look for Oh My Aches and Pains! via their websites and blogs.

My new blog template is courtesy of Our Blogger Templates and I picked the one titled Blogger Theme.

My new blog header I discovered at Smashing Magazine.com under the post Blog Headers For Free Download. The artist is Heavena Rayan of India and she said this at Smasing Magazine.com about her design, "This design was inspired by my thought process. Whenever I need some ideas, I think, research & analyse and then I just let my thoughts go blank. This is when the ideas begin to flow. I tried to visualize this whole process & this is how I imagined it. I am sure a lot of people out there would relate to this process as well."

After reviewing several different blogs, I wanted to add "subscribe by RSS" and "subscribe by email" icons to my sidebar. Thank goodness for the Blogger Sentral blog and the post by Greenlava on Adding RSS button to your blog. As you can see on my sidebar, I learned how to add the buttons RSS, email and more to my sidebar thanks to this tutorial.

Did you notice the "Share the Love" social bookmarking widget at the bottom of each of my blog posts? The widget is called Sexy Bookmarks version 2 and I learned how to embed it into my Blogger html code at the CSS Reflex: web design & inspiration blog.

Don't you just LOVE the LinkWithin widget at the bottom of each post that brings up five related stories to the blog post you just read? This is one awesome widget that beautifully showcases my past posts. How does it work? How can you get it for your blog? Click here to learn more.

Did you also notice the new orange toolbar that appears at the bottom of the page, with all the cool features like: search, translate, recent posts, random post, subscribe to my feed, share this post, Facebook Commuity chat, Twitter and a nifty post-it like notifier? This very cool blog tool bar is courtesy of my friends at Wibiya.

Finally, I have to mention my long-time blog helpers that came to my new look from my old layout: Wowzio widgets, Lijit search, Zemanta and Stat Counter.

Let me share with you the real secret to creating my daily blog posts: every week I get emails from Lijit and Stat Counter letting me know how many people visited my blog in the previous week. Just knowing how many of you come and visit me each week inspires me to keep writing. I can honestly say that you, my blog readers, are the best blogging helpers of all.

Thank you for reading Oh My Aches and Pains!

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Tuesday, September 29, 2009

Playing the Health Insurance Game

Intensive care bed after a trauma intervention...Image via Wikipedia

I just watched the PBS Special Report: Heath Care Reform and highly recommend you watch this program too. The report devoted a whole section on the issue of pre-existing conditions and for a few minutes afterwards I sat and scratched my head. I live with multiple health problems (just look at the description I use to introduce you to my blog above.) I scratched my head because, after viewing the program, I was left wondering how I avoided getting into trouble with my health insurers about my pre-existing conditions.

Needless to say, it took me several hours to come to the following conclusion: it appears at first glance that I played the "health insurance game" successfully. My fear of not having health insurance after my cancer diagnosis at age 22 spurred me to make absolutely sure that AT NO TIME was I ever uninsured in the past 21 years.

Then I realized the sacrifices and calculated choices I made to achieve this goal.

For starters, while I was working, I didn't apply for and turned down jobs that didn't offer health insurance. This automatically meant that working for small employers and starting my own business (like a private clinical social work practice) were never options for me. I avoided leaving a job without securing another position beforehand. In the event I wasn't able to make this kind of transition, I ALWAYS paid for extended COBRA health insurance coverage, which is very, very expensive.

I admit that in the past 10 years, my worries about having medical insurance decreased after I got married. For the first three years of my disability, I relied exclusively on my husband's health insurance, which prompted occasional worries about what would happen if my husband's employment situation changed. In 2007, I qualified for MediCare, which eased those worries a bit but brought new frustrations with my medical providers' inability to make the transition to billing MediCare as my secondary insurance.

I guess for all my bad luck with health problems, I have been blessed with good health insurance mojo. But don't let that fool you; watching this latest report on how health insurance excludes people with pre-existing conditions fueled another round of health care worries for me. I will always be obsessed with getting, having and keeping my health insurance: I will always be playing the health insurance game.

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Monday, September 28, 2009

Building Community, Neighborhood Style

Lego PeopleImage by Joe Shlabotnik via Flickr

Yesterday we attended the Annual Coolidge Ave. Block Party.  Looking back, I admit that the annual block party sold me on the house that I bought here on Coolidge Ave. back in 1994.  As I came for a final visit with the Realtor, I saw the notice slipped under the door notifying the neighbors that the block party would take place at the end of July.  I wanted to live on a block that had an annual block party... 


Fifteeen years later, it's now held in September; some neighbors moved on, some new neighbors arrived, many have stayed and the food and conversation remain consistently good.


Over the years, we've talked about putting a neighborhood directory together.  Today we talked about it again.  Tonight I came home and logged into Ning.com and began to create a Coolidge Ave. Neighbors social network.  At first, I just wanted a place to post names, addresses and contact information with a picture of each house on the block.  Then I brainstormed and created a number of online groups as part of the network, including:
  1. Neighborhood Watch:  Report information here so we all can keep on eye on crime and work to prevent it on Coolidge Avenue.
  2. Sharing the Backyard Harvest: Don't let your backyard harvests and bumper crops go to waste. Post here to let neighbors know about the fruits and vegetables you can share.
  3. Neighborhood Freecycle: Reuse, Recycle, Freecycle! Don't throw it away ... post here to find your stuff a new home. Your trash could be someone else's treasure.
  4. Helping Hand: Need a helping hand? Able to lend a helping hand? Connect with your neighbors here.
  5. Lost and Found: From pets to possessions, if you lost it or found it post a message here.
  6. Neighbor to Neighbor: A place for neighbors to let each other know about their businesses, services and goods for sale or barter
I am hoping the adage, "If you build it, they will come." will apply to my new neighborhood social network.  I found a surprising number of my neighbors on Facebook and invited them to come and preview my creation and give me feedback.  I hope Coolidge Ave. Neighbors will be up and running in a few weeks.  In the meantime, feel free to copy my group ideas when you create your own neighborhood social network.


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Sunday, September 27, 2009

Oh My Aches and Pains! mentioned at Multi-Tasking Momma's blog


I am always honored when someone reads my blog and doubly so when my musings go on to inspire others. During Invisible Illness Week, Melissa aka the Multi-Tasking Momma came by for a visit and read my post 30 Things About My Invisible Illness You May Not Know Today, But Will Remember Tomorrow.  She commented in her post Invisible Illness Linky Love:

Selena She talked about something in a way I had never considered before, but found to be so true.  In addressing question #14, Selena opened my eyes to the reason behind a phenomenon I couldn’t explain before.  People would be surprised to know that: “socializing with family and friends is more difficult for me now”.  It is for me too and I didn’t understand why.  Selena goes into more depth about it so visit her blog for the answer.
Please visit the Multi-Tasking Momma for some great reading.  My thanks to Melissa for visiting my blog.  You've given me the idea to undertake my own blog travels and pass along the "Linky Love."

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Saturday, September 26, 2009

My Friday Adventures in the Garden

The Monarch butterflyImage via Wikipedia


I've been busy Fridays harvesting in my container garden.  And I've seen the occasional Monarch butterfly fly through my garden too.  I've been blessed with tomatoes, cucumbers, peppers, eggplant, green beans, zucchini, patty pan and crookneck squash.  I also received figs from my dwarf fig tree and gooseberries from my gooseberries plants.  Talk about Fulfillment Fridays!  

In between picking and eating, I took some pictures of my harvests which I've put into a slide show for you.  Enjoy!


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Friday, September 25, 2009

When You Have Cancer: Resources for Coping

Hold Hands

Good news today ... Val's surgery went well and it seems that the tumor turned out to be a calcium deposit encapsulated which means they caught it early and she will not need any follow-up radiation. She is back home and hopefully resting comfortably tonight. The lesson learned: get your mammogram yearly to catch problems early. Early detection is key to winning the fight against cancer.


Today I focus on resources for cancer patients and their loved ones. I compiled a list of national resources for persons living with cancer in the United States which I think serves as a jumping off point for getting started with basic information and referrals to local organizations. I only included organizations that I know and use.


Second, I put together some recommended books and other items from Amazon.com that I think you will find helpful. Some of these books may be available at your local library as well.


As always, I welcome your comments, suggestions and tips: please leave me a comment to share your thoughts.

ORGANIZATIONS:



American Cancer Society (ACS) 
www.cancer.org 
(800) ACS-2345

Check their website for a wealth of information, inlcuding online treatment decision tools, and the location of your local ACS office.  Call to receive information over the phone or written information through the mail.





CancerCare
www.cancercare.org 
(800) 813-HOPE

This national nonprofit organization specializes in providing support to people living with cancer, including online and telephone support groups, telephone counseling and over-the-phone or over-the-Internet streaming education workshops.  In addition they provide a variety of publications; of note is A Helping Hand, a comprehensive resource guide for people with cancer.

National Cancer Institute
www.cancer.gov 
(800) 4 - CANCER 

In addition to providing a variety of free publications and information via their website and toll-free telephone line, the National Cancer Institute compiles a list of over 8,000 clinical trials currently recruiting patients.  They can answer any question you have about participating in a clinical trial.



Association of Cancer Online Resources
www.acor.org

Looking for a cancer community online?  ACOR is THE place to find online support.  Join one of their "mailing lists" to network with other people fighting the same kind of cancer you have.  All contact is done through an Internet list serv which emails participants with responses posted to the group.   


Here are my recommendations for books and other items:







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Thursday, September 24, 2009

When You Have Cancer: Tips for Coping (part 2)


I just got off the phone last night with my sister Cyndie, who told me her friend Val is having surgery tomorrow to remove a very small breast cancer tumor. Val wanted to talk to me back in August after her routine mammogram found the tumor. She wanted clarification about the technical terms her doctor used to describe her type of breast cancer. Since I am familiar with some of the terminology and I am good at Internet research, I felt both honored by her request and capable of helping her get answers to her questions.

I am keeping Val in my thoughts and prays today and
I am continuing my series of tips for coping when you have cancer in her honor:


  • Some doctors have the worst bedside manner. If you happen to encounter one of these doctors, please don't let them discourage you or disuade you from treating your cancer. Talk to this doctor's other patients while in the waiting room and compare notes. Talk to the nurses and other professionals in the office about your concerns. Exercise your right to a second opinion. If you are stuck with this doctor, trying turning your disgust and discouragement into extra determination to win your fight so you won't need their services anymore.
  • Ask to meet with the oncology social worker. Social workers can provide a wealth of information about the practical and everyday aspects of living with cancer like disability benefits, referrals to support groups, program and services available to persons living with cancer, referrals to individual, couples and family counseling and home health care services. Unfortunately, due to under staffing and the high patient numbers, the social worker may not have the time to come and introduce themselves to you. So be proactive, ask to see them and ask them how they can help you!
  • Reward your medical team with small tokens of your appreciation. The nurses, doctors and others in the field of oncology are some of the hardest working medical professionals. Having a bowl of candy (or a jug of jelly beans from Costco) in your hospital room or bringing some cookies (store-bought are fine!) to clinic are nice ways to say 'I notice and appreciate your hard work and caring.'
  • Don't take it personally when the people around you act weirdly in response to your cancer diagnosis. For some people, their family and friends rally around them, which can be wonderfully reassuring or smothering. For others, they find that suddenly friends and family disappear or avoid them, which can be devastating or better than having them hovering around you. Sometimes it's a combination of these two extremes. However your friends and family respond, their reaction is really all about them, not you.
  • Take what other people have to say about your cancer with a grain of salt. Sometimes even the most well-intentioned people say the most hideous things about how and why you got cancer, like, "You were burning the candle at both ends." or "God must be upset with you." Again, whatever they say, remember that these statements have little to do with you and a lot to do with how poorly these people are dealing with your cancer diagnosis.
  • Give yourself permission to put your needs in front of everyone else's needs. You are fighting a life-threatening illness and, for right now, you need to be your number one priority. Remember you can't take care of anyone else unless you take care of yourself first.
  • Be willing to reject the advice of the countless self-help authors who write about the subject of cancer if what they say doesn't work for you. Back in 1988, Love, Medicine and Miracles was a bestseller and was given to me as a gift after I was diagnosed. In the book, author Bernie Siegel, MD asks the reader 'why do you need cancer in your life?' Needless to say, I was mortified. For some people, learning how you can think yourself sick or well might work for them. It didn't work for me.
  • Be very careful about alternative treatments for cancer, especially treatments that advocate the discontinuation of traditional treatments like surgery, chemotherapy and radiation. In addition, talk to your doctor about any vitamin and mineral supplements and herbal products you may be taking, as they may cause serious side effects in combination with prescription medications and/or chemotherapy.
  • Be extra cautious when your blood counts are low from treatment: you are more susceptible to infection. Postpone your night out dancing or your trip to the mall until your counts rebound. If you need to wear a mask when out in public, consider buying your own supply of N95 respirator masks. Recent studies show that the surgical masks many patients are provided are not as effective as the N95 respirator mask in protecting you from cold and flu viruses.
  • If you need to be hospitalized, be sure to take along some distractions and decorations for your room. When you are feeling up to it, it is better to fill your time there with a good book, good music, a game to play or a movie to watch. Bring along pictures of your loved ones, your pets or a drawing from a child close to you. Better yet, bring art supplies to make your own drawings. Bring along some of your own clothes, slippers, bathrobe, etc. Not only will bringing along your personal items from home make you feel more at ease, it helps the medical professionals taking care of you see beyond your cancer to the person you truly are.
That's all for today. I'll be back tomorrow with my recommendations for a variety of helpful resources. In the meantime, please leave me a comment with your reactions, questions, suggestions and your tips for coping with cancer. And please send some healing thoughts in Val's direction today.

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Wednesday, September 23, 2009

When You Have Cancer: Tips for Coping (part 1)

266/365 - And It Could Rain For Days And Then ...Image by helgasms! via Flickr

A friend of a friend just received bad news: her breast cancer came back. More tests are needed before surgery and other treatments can begin. So for now, a network of friend responds to requests for positive thoughts and healing energy while the waiting begins...

This got me thinking about the practical side of being a cancer patient. I know it's been 21 years since my cancer, but an experience like that really stays with you. I always go out of my way to offer encouragement, hope and practical suggestions to newly diagnosed cancer patients and it struck me yesterday that I needed to write these suggestions down. So here are some of my suggestions for coping with cancer:


  • Being diagnosed with cancer, or finding out the cancer has returned, is a huge, life-changing event. Between the medical tests, procedures, surgery and treatment, it can feel like getting sucked up into a tornado. Occasionally, you need to step back from the tornado and find some quiet, peaceful time for yourself.
  • Having cancer brings up a lot of feelings and it is important to really try and feel every one of them in the moment. This may be hard to do when the people around you want you to have a "positive attitude" and "be a fighter." It may be scary to feel helpless, fearful, angry and sad, but these feelings don't last for long when you have the courage to face them.
  • Don't get hung up on the statistics. It's been quite a while since I took a statistics course, but this I remember: statistics describe what happened in the past. With most statistics, there is a time lag between when the data was collected and when the statistics are reported, anywhere from a few months to a few years. So what was true in the past is not necessarily what is true right now, in the present. Use the statistics you are presented with as an estimate of the size of the fight ahead of you. Then focus your mind on the outcome you want.
  • If you are newly diagnosed, think twice before you head to the Internet and start to Google information about your type of cancer: you can easily get overwhelmed! Initially, stick to websites like the American Cancer Society which are specifically designed for the lay person or ask a friend or family member who is good at Internet research to wade through the plethora of information for you. Ask for and pick up pamphlets and brochures in your doctor's office to get you started learning about your cancer and its treatment.
  • Decide how much information you want from your medical team and let them know. Some patients want just the facts, others want details and copies of all their test results. If the amount of information you want differs from the amount of information your family wants, consider giving your permission to your medical team to speak to family members without you present.
  • Don't forget you have the right to a second opinion. If you are going to invest the time and energy into a second opinion, consider getting it from an institution that conducts a large number of clinical trials, like a university cancer center or The City of Hope.
  • During cancer treatment, you want to be proactive and promptly report any new symptoms that develop to your doctor. You also want to let your doctor know of any treatment side-effects. Oncology is one field of medicine that excels at helping patient manage their treatment side-effects, so do not suffer unnecessarily.
  • Take advantage of any support options available to you. This can range from chatting to other cancer patients in the waiting room, talking to family and friends who are cancer survivors, using Internet chat rooms, forums and list servs to telephone and in-person support groups. Being with fellow cancer patients and survivors provides the opportunity to share ideas, coping strategies, thoughts and feelings with other people who really know what you are going through. Your fellow cancer patients and survivors give you a special kind of support you can get no where else.
  • Ask for help. Cancer treatment is difficult and there are times when you will need other people to help you get through it. Anticipate that you (and your spouse) may need help with grocery shopping, driving to appointments, picking up the kids from school, cleaning the house, etc. Put the word out early that you might need some help and see who is available ahead of time.
  • Make a call to your local branch of the American Cancer Society and ask about the local programs and services they provide. There may be volunteers able to help with transportation to and from your chemotherapy and radiation treatments, support groups, the Look Good ... Feel Better and other resources available to you.

I'm just getting started here, so tomorrow I'll return with more suggestions. I can see that this is going to be a series of articles and I promise I'll devote a post to some resources as well. In the meantime, if you have any comments, questions or suggestions you want to share, please leave a comment below.



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Tuesday, September 22, 2009

Thanks for Making World Alzheimer's Day a Success!

Purple flowersImage by Swami Stream via Flickr
I just got an update from the Alzheimer's Association in my email this evening. I wanted to pass along the good news: the World Alzheimer's Day fundraising challenge was a success and raised over $22,000.00!

Didn't get a chance to make a donation? No worries! Any time is a good time to make a donation to the Alzheimer's Association.



Dear Selena,
Thanks to loyal friends like you, my World Alzheimer's Day challenge succeeded in raising over $22,000, far exceeding the $5,300 I pledged in recognition of the 5.3 million Americans with Alzheimer's. My heart is full.

I have received so many notes today from people who are champions in so many ways - participating in Memory Walk, talking to their friends about getting involved or participating as advocates. Whether you made your contribution on this day or another, it is amazing to see so many people joining together to make a difference.
You have proved once again to be a true champion in the Alzheimer's movement. You can be very proud of your contributions.
With sincere appreciation,
Angela Geiger
Vice President
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Monday, September 21, 2009

Today is World Alzheimer's Day!

PeacefullImage by *MizzEl*~Elly* via Flickr
I just got an email reminder from the vice president of the Alzheimer's Association that TODAY is World Alzheimer's Day. I've included her message below. If you haven't already, today is a great day to contribute to The Gerald E. Keerbs Memorial Fund benefiting the Alzheimer's Assocation. You can read my post about my hero, my Dad, who died on December 22, 2004 from Alzheimer's disease by clicking here.



Dear Selena,


Today is World Alzheimer's Day and we're working to raise awareness about Alzheimer's disease and rally friends like you around the globe. I know I often write you with updates, offers and requests for funds. Today I am writing you with a very personal challenge.

If you - a person dedicated to our vision of a world without Alzheimer's disease - can help us raise $3,500 today for the 35 million people around the world with Alzheimer's, I will match that entire amount to honor the more than 10 million family caregivers.


Please make your donation today. I also hope you'll consider one of these amounts:

  • $5.30 for the 5.3 million Americans with Alzheimer's
  • $10 for their 10 million Alzheimer caregivers
  • $35 for the 35 million people with Alzheimer's around the world
  • $78 for the 78 million US baby boomers who will be impacted by Alzheimer's disease.
  • $148 for the $148 billion annual societal cost to our nation
  • $428 for the meager $428 million dollars the US government invests in Alzheimer research as compared to $6 billion for cancer, $4 billion for heart disease and $3 billion HIV/AIDS that has resulted in great advances.
I am personally determined to make a difference in the fight against Alzheimer's disease and I know you are too. I truly appreciate your support in raising awareness and funds for the advancement of Alzheimer research, care and support.


With heartfelt thanks,


Angela Geiger
Vice President


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Sunday, September 20, 2009

How Roche Made Hepatitis C More Visible #iiwk09


Back in June of 2005, Roche Pharmaceuticals started a new campaign to raise awareness about Hepatitis CHCV) and encourage those with HCV to seek treatment. This campaign consisted of several posters like the one featured at the top of this post. As you can see, the poster raised the question, "If Hep C was attacking your face instead of your liver, you'd do something about it." Right?


Well I guess, in theory, if Hepatitis C disfigured my face I'd be trying to figure out how to make my face look better. But the assumption that it would lead me to choose HCV treatment might be a faulty one. After all, an easier option would be to just invest in some really good makeup or receive some kind of dermatolgical treatment to cover up the symptoms.

You see, I have genotype 1b and treating genotypes 1a and 1b is especially difficult. The treatment success rate for genotype 1 is about 50% --- a coin toss. Current treatment is a combination of interferon and ribaviran, which I did try back in 2007 when directed by two different rheumatologist to seek treatment as they felt my chronic HCV infection was fueling my fibromyalgia. After three weeks, I wound up in the hospital September 11, 2007. I stopped the treatment because of side-effects; side effects made severe due to impairment of my immune system and my dysautonomia which are late effects from my leukemia treatment in 1988.


I hope and pray every day that the next generation of Hepatitis C treatments, protease inhibitors, hurry up and get here. Similar to the drugs used to combat HIV, protease inhibitors hold the promise of a more tolerable and less debilitating HCV treatment. Early results from several clinical trials look very promising, but according to the hepatology team at Cedars-Sinai Medical Center, the FDA has asked that these new medications be tried in combination before final approval. That means that pharmaceutical companies like Schering, Vertex, Pharmasett and Intermune need to work together to make antiviral HCV treatment a reality.


I am encouraged by the news at the HCV Advocate website that the very first STAT-C multi-drug targeted antiviral combination clinical trial began in April 2009. Click here to read more.


Do I want to treat my chronic HCV infection? Yes! But until the treatment outcomes and options improve, I wait anxiously for HCV antivirals that might be more leukemia survivor friendly.






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Saturday, September 19, 2009

Ten More Ways My Invisible Illnesses Are Visible #iiwk09

Day 116 - Seeing Other People
Here are some interesting facts about my "invisible illnesses" I thought I'd share with you. I discovered putting this post together that when it comes to the numbers, my illnesses are not so rare, unusual or invisible after all:
  1. According to the Leukemia & Lymphoma Society, "An estimated 245,225 people in the United States are living with, or are in remission from, leukemia."
  2. Research shows that late effects from cancer treatment are common in cancer survivors. The Candlelighters website reports that The Childhood Cancer Survivor Study, with a study population of over 10,000 survivors, found that 66% of survivors had at least one chronic health problem and 33% had multiple conditions.

  3. According to the Ready to Learn All About Hepatitis C website, it is estimated that 4 million people, about 2% of the U.S. population, is infected with Hepatitis C.
  4. The HCV Advocate reports that liver failure caused by Hepatitis C is the number one reason for liver transplants in the United States. They go on to inform that a liver transplant DOES NOT cure HCV, as the virus hides in other places in the body of the liver transplant recipient and migrates to the new liver after transplantation. Disease progression is often accelerated in liver transplant recipients.
  5. On the The National Diabetes Information Clearinghouse website it states that in 2007, over 23 million people, or roughly 8% of the population, lived with diabetes.
  6. The American Diabetes Association provides information on the direct and indirect costs of diabetes in the United States. People living with diabetes have, on average, an almost 2 1/2 times increase in their medical expenditures compare to persons without diabetes.
  7. Up to 1/3 of people living with chronic Hepatitis C infection develop Type 2 diabetes according to an article published in 2004 in the journal Current Diabetes Reports.
  8. According to the National Fibromyalgia Association, fibromyalgia is the most common pain disorder, affecting 10 million Americans, or about 3% of the population.
  9. Sleep apnea affects 18 million people in the United States, which is about 6% of the population. People living with fibromyalgia have a higher incidence of sleep disorders, including sleep apnea, explains WebMD. In addition, in overweight type 2 diabetics, researchers found that a whopping 86% had undiagnosed sleep apnea, with 53% of the participants having moderate to severe sleep apnea symptoms. Sleep apnea is associated with weight gain, high blood pressure, heart attack and stroke.
  10. Center for Disease Control and Prevention (CDC) statistics show that "chronic, disabling conditions cause major limitations in activity for more than one of every 10 Americans, or 25 million people." That means chronic illness disables about 9% of the American populace.

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Friday, September 18, 2009

Updated: The Best of the Invisible Illness Week 5 Day Virtual Conference #iiwk09

Passion


The Invisible Illness Week 5 Day Virtual Conference came to an end today. But don't worry! If you didn't get to tune into BlogTalkRadio live between Monday, September 14th and Friday, September 18th, you can still listen to all the conference seminars when ever you want and when ever it works for you. And you have three ways to access the seminars: at iTunes, at BlogTalkRadio and at the Invisible Illness Week website.

Here are my picks for the best sessions from Invisible Illness Week 2009:

Finding a Heart of Gratitude and Joy Despite Illness with Maureen Pratt

Coping with Chronic Illness in Your Marriage with Bill and Pam Farrel

Super Foods for Super-Natural Health with Joanna Faillace

Understanding How We Uniquely Deal with Difficulties in Life with Georgia Shaffer

It's OK to say NO: Building Healthy Boundaries with Jenni Prokopy

Coping with Crises on Top of Chronic - Chat with Two Gals Who Understand with Lisa Copen and Jenni Saake

Simplifying Your Home and Housework with Marcia Ramsland

Find the Job You Desire and Can Do with Rosalind Joffe

Helping Others Understand Your Pain with Karen Lee Richards

Applying and Winning Disability Assistance When You Are Chronically Ill with Scott Davis, ESQ


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Thursday, September 17, 2009

Never Underestimate the Power of Human Contact

group hug

Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.
-- Leo Buscaglia

I spent time with my Aunt Sandy these past two days; her travels from Illinois to points West brought her and my Uncle Rich to Los Angeles Tuesday.
I miss my Dad, her oldest brother, who passed away in 2004, so I welcomed the opportunity to finally meet her and her husband and spend some time together. Yes, our get-together Tuesday evening at Dockweiler Beach was our very first meeting!

She told me she ALMOST didn't call me ... she was afraid I had my mind made up about her based on what other family members say about her. Her main mission was to come and pay her respects at my Dad's grave site so she could say her goodbyes. I'm glad she DID call me. We hit it off and spent as much time as we could just being together during the two days she was here.

I have so few older family members now; I feel an emptiness in my life without them. To me, knowing I have older relatives gives me the assurance that I have someone to turn to when I need advice, perspective or some comfort. I try hard to be like a sponge around them, to soak up all their bits of advice, knowledge and wisdom from their lessons learned.

So after a meal of grilled rib eye steaks, baked potatoes, sourdough rolls and steamed vegetables (veggies courtesy of my container garden), the visiting commenced. First, I listened and she talked. Then she listened and I talked. And the funny thing is, in the matter of just a few hours, we discovered we have a lot in common. We parted feeling like family, like all those years of not knowing each other didn't exist. The lesson I was reminded of, once again: never underestimate the power of human contact.


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Wednesday, September 16, 2009

Highlights from the Invisible Illness Week 5 Day Virtual Conference - #iiwk09

Image representing Blog Talk Radio as depicted...Image via CrunchBase

Here are my picks for the best seminars so far from the Invisible Illness Week 5 Day Virtual Conference. Click on each link to be taken to the Blog Talk Radio website and begin your own personalized conference experience!


Finding a Heart of Gratitude and Joy Despite Illness with Maureen Pratt

Coping with Chronic Illness in Your Marriage with Bill and Pam Farrel

Super Foods for Super-Natural Health with Joanna Faillace

Understanding How We Uniquely Deal with Difficulties in Life with Georgia Shaffer

It's OK to say NO: Building Healthy Boundaries with Jenni Prokopy

Coping with Crises on Top of Chronic - Chat with Two Gals Who Understand with Lisa Copen and Jenni Saake


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Tuesday, September 15, 2009

Invisible Illness ... What Does It Look Like? #iiwk09



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Monday, September 14, 2009

My Life With Invisible Illness: Taking a Closer Look #iiwk09

Coin operated binoculars, manufactured by the ...Image via Wikipedia


I live with (or have lived with, in the case of my cancer) six different invisible illnesses: acute promyelocytic leukemia, hepatitis C, Type 2 diabetes, dysautonomia, fibromyalgia and chronic fatigue syndrome. Sure, when you look at me, you really can't see any of these illnesses: I look pretty much like any other human being alive on planet Earth. But looks can be deceiving, even misleading, when you struggle every day to live your best life despite chronic illness.

Sure, having an invisile illness makes it easy to pass for "normal." Other people won't know you have an illness unless you tell them. Sometimes it's better not to say anything to avoid other people's questions, quizzical or judgemental looks, prejudice, avoidance or rejection. But it's not so easy to hide your invisible illnesses from everyone; the more someone spends time with me, the more they are bound to notice that something is amiss. Which got me thinking that maybe my invisible illnesses really aren't so invisible after all. You just have to pay a little closer attention to see the signs that are visible.

I bet if you take a closer look, you will notice:
  1. I catch frequent colds and flus, which often make me very ill for several weeks at a time. You'll see me in line at Costco for a flu shot every year.
  2. I make frequent trips to a variety of doctors. You can see me regularly driving to the UCLA and Santa Monica-UCLA Medical Centers.
  3. I frequently use medications and can often been seen pulling a pill box out of my purse or pocket. At the pharmacy, I visit so often that the pharmacist and staff greet me by my first name.
  4. I pull a glucometer out of my purse and use it to test my blood sugar before and after meals. I also give myself a quick injection of Byetta before I eat ... I've even been so brazen as to inject right at the table in a restaurant! Hungry? I also have a snack or two in my purse for low blood sugar moments.
  5. I keep a folding cane+seat combination in my car and use it for quick errands and doctors' appointments. Where ever I go, you'll notice that I am always looking for a place to sit down.
  6. I can been seen almost every night walking my dog down my street using a mobility scooter. I also use my scooter at Costco, the supermarket and on my infrequent outings to places like the museum or events like concerts.
  7. After years of owning and prefering a manual transmission, I no longer drive a stick shift car.
  8. After years of building a career, I now can be found at home during the day, every day.
  9. I wear a Medic Alert bracelet or watch every single day.
  10. When I can find a space, you'll observe that I make frequent use of available handicapped parking. Watch for me to pull my handicapped placard out of my purse.
I guess you could call this list "The 10 Visible Signs of My Invisible Illnesses."


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Sunday, September 13, 2009

A Tribute to Brain Fog

Fog in the ParkImage by laurenz via Flickr

Here is a gem of a video courtesy of my friend Sharon from the CFIDS & Fibromyalgia Self Help group. Apparently we are not the only ones who dealing with brain fog!




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Saturday, September 12, 2009

The Amazing Internet: What Works for Those With Invisible Illness

My Favorite PlaceImage by Valerie ReneƩ via Flickr


I can't wait for the beginning of the Invisible Illness Week 5 Day Virtual Conference. Anticipating it today, I thought about how integral the Internet is to my ability to reach out to other people living with chronic illnesses. From a self-help weekly group via a listserv, to several message boards, forums and chat rooms to basic email contact with friends and family, I find myself connecting to people each and every day. In contrast, if I had to rely solely on getting out of the house to make contact with other people, I'd be lucky to connect with other people once a week. More likely, based on my experience with the alumni group at the Cedars Sinai Chronic Pain and Fibromyalgia Program, interacting with other people would happen about once a month.

As Lisa Copen explains in her post Chronically Ill Are Perfect Audience for Virtual Conference:

Hard beds, traveling expenses, long walks to conference rooms, peers going overboard on the perfume, and extreme fatigue are predictably part of your average conference. For the chronically ill, however, these inconveniences oftentimes make attending an actual conference impossible. National Invisible Chronic Illness Awareness Week celebrates its seventh year, and with the power of social networking, 2009’s “virtual” conference September 14-18, 2009 is sure to be a success.
I totally agree with her! Beyond eliminating the problems of getting there, surviving the trip and making through each day, a virtual conference offers the ultimate in convenience. There are so many different ways to participate. You can experience each session live by listening online at Blog Talk Radio. During the live seminar, you can call in to ask speakers your questions or submit questions via the chat function. Not able to log on and tune in for the live session? No problem. Listen to the seminar on your schedule through the Invisible Illness website or at iTunes.

What to try it out in advance? You can listen to last year's sessions at Blog Talk Radio right now.

To see the entire schedule of speakers for Invisible Illness Week 2009, click here.

Like every good conference, there is even a place to go and meet the speakers and network with other participants. It's called the Invisible Illness Week Group at the Sunroom social network of Rest Ministries. This is also where you will find any handouts that the speakers have provided. Make sure you go and join this group before the virtual conference starts on Monday so you are ready to participate from the start of the event.

So what so you think? Is a virtual conference for you? Give it a try and let me know what you think by leaving a comment below.

Now it's time for some fun. This YouTube video features an early Canadian news report from the late 1980's or early 1990's about the Internet and how it was "catching on." It is a hilariously and nostalgic look back at the recent past, when we dialed up to connect and interacting online with people around the world was still a novelty.




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