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Monday, May 31, 2010

My Happy Marriage

19th Sept: 5 years of marriageImage by scribbletaylor via Flickr


Today is our 12th wedding anniversary and frankly, I can't believe so much time has past since Robert and I got married.

We just went to the County clerks office a few weeks ago to pick up our marriage certificate, because somehow we never got an official copy. When we realized we didn't have an official copy, I wondered for a moment if we were really "official" and the thought crossed my mind that we would have to get married again! Which got me thinking that maybe we should have gotten a marriage license when we renewed our vows three weeks after our May wedding, in front of Elvis at a wedding chapel in Las Vegas.

Another surprise came when I reviewed the completed certificate. I thought we had been married by a captain of a ship since we got married on a Hornblower Dining Yacht in Marina Del Rey, California. Turns out, the ship's captain was actually a minister in the Universal Life Church. Who knew?

So in honor of our 12th wedding anniversary, I am completing this Happy Marriage Meme. Enjoy!


Q. How did you meet your husband?

A. 1984, at a dorm party in Hedrick Hall on the UCLA campus. Robert accompanied his friend to the party, a guy I met on my freshman year dorm floor and who would later become my first serious boyfriend in college. Robert and I became friends and remained friends long after that boyfriend dumped me a month after I was diagnosed with leukemia.

Q. What first attracted you to him?

A. His sense of humor and the way he really listened to me. Robert made me laugh and made me feel important.

Q. How did you know he was the one?

A. Robert actually wanted to start dating in 1990, but I turned him down. I wasn't in a very good space then, just two years after my cancer treatment. We lost touch for a while after that, but when I sent him a note around my 30th birthday saying I was moving on and thanks for all the memories, he called me two days later and said, "Just because we haven't talked in a while doesn't mean I don't want to be your friend." So we started hanging out again and I could tell that he still wanted to date me. Impressed with his genuine feelings for me, that were unchanged despite my initial rejection, I changed my mind about dating him and I haven't regretted a moment since.

Q. How long have you been married?

A. Today we have been married for 12 years!

Q. What’s something you learned about him after you were married that surprised you?

A. When we started living together, I asked Robert if he loved my pet cats and he said no. I admit I was disappointed with his response. Then I started observing him with the cats and could tell he really liked them. But when I kept asking if he loved them, he kept denying it. One day, a few years into our marriage, he told me, "Yes, I love the cats, but what you don't know is that I have been telling them I love them behind your back for a couple years now." When I asked him why it took so long to admit it, he said, "Loving cats? That's just crazy stuff!"

I think he'd probably say that same about loving me too!

Q. What do you argue about the most?

A. Money.

Q. What quality in him do you admire most?

A. His faithfulness towards me is the quality I admire most of all.

Q. What is the hardest part about being married?

A. Accepting that Robert has the right to set limits with me and say no.

Q. What’s the best part about being married?

A. The best part of marriage is companionship. It is comforting to know I have someone by my side. Together we help each other get through the tough patches and enjoy the good times. Life isn't so bad when you have someone to grow old with you.

Q. What’s the one piece of advice you’d give to other wives about creating a happy marriage?

A. I think it is important to marry someone who is your friend, first and foremost. You want to pick a partner who you really enjoy spending time with and someone you really like. What works for us is sharing a lot of the same interests, enjoying each others company and always managing to have fun when we do things together.
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Saturday, May 29, 2010

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

Submit ButtonImage by johannes p osterhoff via Flickr


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

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

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


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Thursday, May 27, 2010

Are All My Chronic Conditions Making Me Fat?

Theatrical type: fat woman. Terracotta from Cy...Image via Wikipedia


I hate getting a lecture from a doctor about how I need to lose weight and it happened again this past Tuesday.

I finally went for a follow-up appointment with my hepatologist (liver doctor). I've been putting it off because I know from the HCV Advocate that there aren't any new treatments for Hepatitis C (HCV) yet. But going every so often means I get the labs drawn by my primary care doctor reviewed by the HCV specialist and I get to talk to him about what I am currently worried about. So Tuesday I talked to him about my concerns that having HCV and type 2 diabetes, how it puts me at greater risk for developing liver cancer. The specialist added that it increases my risk of cirrhosis too. I mentioned that I don't drink alcohol and I eat a healthy diet and he replied that losing weight would also benefit my liver too.

Problem is, I have
seriously tried losing weigh ever since I was diagnosed with type 2 diabetes in 1999 and I have not succeeded. Which got me wondering Tuesday evening if all my chronic conditions make losing weight much more difficult. So I conducted my own good old-fashioned, scientific look-back study on my weight issues and here is what I discovered:
  • FACT: While I have always been on the heavier side of the 'recommended weight range' for my height, I didn't become overweight (and more) until around 1994.
  • FACT: I have been HCV+ since 1988, in my early 20's. I have chronic active Hepatitis C infection with a viral load of 10 million.
  • FACT: I have had type 2 diabetes since January 1999, when I was in my mid-30's.
  • FACT: Since developing fibromaylgia and related pain and fatigue in 2004, I've experienced sleep disorders including sleep apnea, delayed phase sleep disorder and lack of stage 4 deep sleep.
  • FACT: Since I now know that I have entered menopause early due to my cancer treatment, I also now know that I have been peri-menopausal for the last 10 years or so.
  • FACT: Being on HCV treatment for 3 weeks in 2007 helped me lose 15 pounds without even trying. It also seemed to help my aches and pains too. Too bad it worsened my dysautonomia symptoms, caused me to break out in multiple infections (both ears, my sinuses and one of my eyes) and landed me in the hospital because they thought I had a heart attack.
I spend some time every few months researching my conditions on the Internet in an effort to keep up with new medical discoveries and treatments related to my conditions and illnesses. But it wasn't until Tuesday evening that I put the bits and pieces that I know together, and they came together like a puzzle:
  • HCV & Type 2 Diabetes: I recently read at Science Daily that researchers in Australia confirmed that HCV infection makes you insulin resistant and 3 to 4 times more likely to develop type 2 diabetes. They commented that being HCV+ seems to speed the development of type 2 diabetes earlier in individuals who have a family history of adult-onset diabetes. So instead of getting it between ages 65 to 70 (like my paternal grandfather), HCV+ individuals get diabetes at ages 35 to 40. Yup, that is exactly what happened to me.
  • Peri-menopause, Menopause & Weight Gain: Weight gain during this period is very common for all women in this phase of their lives and hormonal changes can make losing weigh very difficult. Fabulous!
  • Sleep Disorders & Weight Problems: Turns out, lack of sleep, poor quality sleep and sleep apnea are associated with weight gain. Researchers have found that lack of sleep increases appetite. Unfortunately, while I use a CPAP machine to successfully treat my sleep apnea, my sleep doctor has not found a remedy for my poor quality sleep. Just terrific...
When I was done, a light bulb went off. That's it! That's it! Oh good grief! No wonder I am having so much trouble losing weight.

I know my doctors shake their heads and don't believe me when I say I have tried and failed at losing weight. But here is scientific proof of all the things that are sabotaging my efforts!

So how can I counteract all these factors and lose weight?

I have no idea. But I do know I probably shouldn't ask my doctors because they have no clue either.



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Wednesday, May 26, 2010

Life Lessons: Letting Go of Maladaptive Coping Mechanisms

Eat your vegetables!Image via Wikipedia


When I was growing up, I learned to use food to deal with the the bad things that happened to me. I learned this coping mechanism from my grandmother, with whom I shared a strong, loving bond. You see, my grandma was an outstanding cook. She loved me with her every day comfort foods and her wonderful holiday meals, full of luscious homemade sweets and satisfying carbohydrates. My last memory of my grandma before her death is of her offering the 16 year old me a bowl of ice cream to console me after a huge fight I had with my mother.

My mother, on the other hand, was a horrible cook. She also had an unhealthy preoccupation with weight. My mother obsessed about how much relatives on my father's side of the family weighed, which translated into her overreacting when she perceived that me, my brother or sisters were gaining any weight. Genetically speaking, my father's side of the family tends towards individuals being heavier, and there are members of that side of my family who are overweight or obese. However, when I look at pictures of myself during childhood, I do not see a child or teenage that was overweight or obese. Yet I remember going to see a nutritionist when I was in high school and for the life of me I have no idea why.

I think as a child you use what you know to get through the tough parts of childhood. I grew up with an abusive mother who triggered abandonment issues in me--fear and stress instead of love and bonding. I used food back then to soothe and feel better about myself. In retrospect, it wasn't the most healthy or life-affirming way to deal with my feelings, which is why as an adult I acknowledge that food was a maladaptive coping mechanism. But I can't fault my childhood self for figuring out a way to deal with some pretty untenable situations created by the adults in her life.

Here is the thing about maladaptive coping mechanisms learned in childhood: in times of stress, emotional upset and adversity, they are the things your grab for first to help you cope in adulthood.

When I was diagnosed with cancer at age 22, my mother and my family once again disappointed me with their lack of love and support. It was then that a caring nurse suggested I talk with a mental health professional. Fortunately for me, in that time of crisis, I was willing and open to trying a new way of coping. I went thinking that I was going to talk about how cancer ruined my life and my relationship with my family. Instead, I found a safe place to talk about all those strong emotions I was avoiding with food.

In my case, I loved my grandma more than any other adult in my childhood. Her death when I was 16 devastated me. My lack of love and support from other adults in my life to help me process my grief and loss after her death only reinforced my reliance on food to help soothe and comfort me. It was, after all, something my grandma and I bonded over. And yet, as I discovered in adulthood, it was her love that nurtured the seed of my self-esteem. As my self-esteem grew through my work in therapy, so too did my determination to reexamine my coping styles and choose more healthy ways to deal with adversity as an adult.

And I get to practice these new coping mechanisms a lot because there certainly hasn't been a lack of adversity in my adult life...

A lot of years in psychotherapy helped me learned to substitute food with other, more healthy and helpful ways to deal with strong emotions. That is, for the most part. Then being diagnosed with type 2 diabetes in 1999 pretty much changed my relationship with food. Overeating wreaked havoc on my blood sugar and my homeostasis resulting in strong, unpleasant consequences that counteracted any brief, temporary benefit overeating offered. Which has reinforced in a big way that eating couple of chocolate chip cookies is O.K., but eating the whole bag of cookies only insures a world full of hurt afterward.

I mention this today because I know someone who is struggling with her own maladaptive coping mechanisms and is having a rough time of it. She is in her twenties, and probably much like me at that age, she thinks that there is something wrong with her because she continues to use her maladaptive coping mechanisms. The thing is, there isn't anything wrong with her. I know this because I now understand more about human behavior. If these maladaptive coping mechanisms didn't work at all, we wouldn't repeat these behaviors over and over again. We learn to repeat what works, even if it only really helps a little or creates the illusion of a solution. Which means changing our behavior to something more healthy, something different, is inherently difficult.

We all have our issues growing up. We all develop ways of coping with the world when we are young. The wonderful thing about being an adult is that we get to reexamine these coping mechanisms, decide if they still work for us and, if we want to, we can choose to change and replace them. Sure, it is hard work. But over time, I found the reward of feeling better about myself trumps holding on to something that doesn't really work for me anymore.

In her own time, I hope my friend discovers this for herself too.

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Monday, May 24, 2010

The Power of Human Connection Is Not LOST on Me

Dharma Initiative cookiesImage by artnoose via Flickr


I watched the series finale of Lost last night. I admit that the last 10 minutes brought many tears to my eyes. I can't say that I have a better handle on all the mystery and mythology involved in this series than anyone else, yet I feel compelled to comment about the human connections created among the characters and the portrayal of the final journey they all embarked on at The End.

It amazes me that it took a TV show about a bunch of castaways on a tropical island to highlight how much we humans need each other. Granted, there is nothing like a smoke monster chasing you through the jungle or the reality that there is no McDonald's or grocery store around to get people working together. But I guess if you took away all our distractions--TVs, DVRs, cell phones, video games, etc.--we would eventually rediscover each others company and how much we really need each other too.

Despite all my distractions, life with chronic illness constantly reminds me how much I want and need other people in my life. You see, my experience of chronic illness is very much like living on an island, all by myself, with a smoke monster torturing me. In fact, at the moment, I can't think of a better way to describe living with chronic pain, chronic fatigue and all the other debilitating symptoms I experience every day.

What I miss most is being with other people for the majority of my day. In my previous post-illness life, I went to work with other people for eight hours a day and spent my evenings bowling in leagues with my husband or hanging out with my friends. Life with chronic illness has become synonymous with the word lonely; in many ways, I've lost my connections to other people because of chronic illness.

What caused me to cry all those tears at the end of the episode? Simply one big question: Can it be true that all the people that we lose along the way to death, divergence and distance can be found together in one place when we die? I found the concept utterly appealing. I found myself hoping that this little bit of fiction was the truth. It would be wonderful to regain all my lost relationships, all the ones that were important to me and helped me through the most crucial parts of my life, once my life was over. How wonderful it would be to move on to whatever the next phase of existence is surrounded by people I care about and love. Plus how great would it be to re-experience all those connections, all at the same time, once again?

No, the power of human connection is definitely not lost on me.
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Friday, May 21, 2010

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

The Boeing E-4B Nightwatch, the command-plane ...Image via Wikipedia


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

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

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

To submit your post, click here --> Email Selena from Oh My Aches and Pains! Please include the following information in your email:
  • Your name (as it should appear)
  • Your blog’s name
  • Your post’s title
  • Your post’s URL
I'd also really appreciate it if you could help spread the word on your blog, Facebook and/or Twitter.

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

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

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Thursday, May 20, 2010

World Hepatitis Day 2010: You're HCV+...Now What? (#thisishep)

Cirrhosis of the liver and liver cancer may en...Image via Wikipedia


You assessed your risk of having Hepatitis C (HCV) and you got tested. Your test results came back and you are positive. So now what?

What does being HCV+ mean?


First of all, don't panic. HCV infection is a long-term, chronic illness. You've been living with it for a while without knowing, so really the only thing that has changed is that you now know you have it. Which is a very good thing because now you can choose to manage it, treat it and take better care of yourself.

A good place to start is understanding the course of HCV infection.
Out of every 100 people infected with the Hepatitis C virus:
  • about 20 - 25 people will fight off the infection and clear it on their own
  • the remaining 75 - 80 people will develop chronic Hepatitis C virus infection
Of the 75 - 80 of people who develop chronic Hepatitis C infection:
    • 60 to 70 will go on to develop chronic liver disease
    • 5 to 20 people will go on to develop cirrhosis over a period of 20–30 years
    • 1 to 5 people will die from cirrhosis or liver cancer

How can my doctor help me stay healthy?


Regular medical care plays an important role in staying healthy because it monitors you to see if your HCV infection is progressing. Once you know you are HCV+, it is appropriate to ask for a referral to a liver specialist, a hepatologist, for a comprehensive work-up and follow-up care. The medical tests order as part of your work-up should include:
  • A liver panel blood test to check you liver enzymes. High liver enzymes may indicate liver damage.
  • A HCV genotype blood test to determine what subset of HCV infection you have. Knowing your genotype can help you decided whether you want to try treating your HCV infection. The most common genotypes in the US are 1a, 1b, 2 and 3. Genotypes 2 and 3 have up to an 80% success rate with treatments that are currently available. While the treatment success rate for genotype 1 is only about 50%, there is good news. Many new antiviral drugs are currently in clinical trials and these drugs are increasing the treatment success rate. Several of these antiviral drugs are close to obtaining final FDA approval.
  • A HCV viral load blood test to check how active your HCV infection is.
In addition, your doctor may recommend you have a liver biopsy. A liver biopsy is an outpatient procedure in which a small sample of your liver is obtained using a long needle. This test can most accurately determine the stage and grade of your HCV infection, that is, how much damage HCV has caused your liver. Your first biopsy will be used as a baseline and comparison point to determine if your HCV infection is progressing. You doctor will use the results of your liver biopsy to advise you whether you need to consider HCV treatment.

The initial workup can be anxiety-provoking and worrisome, but once it is completed you can replace your fear and anxiety with knowledge and empowerment. You will know:
  1. Where you fall in the spectrum of HCV progression.
  2. Whether or not you need to treat your HCV infection.
  3. How you can expect to respond to treatment based on your HCV genotype.
  4. How often you will need follow-up blood work and tests to keep on top of your HCV+ status.

What can I do to stay healthy with HCV?


In addition to regular medical check-ups, there are many things you can do every day to be kind to your liver. These include:
  1. Limiting or eliminating your use of alcohol and recreational drugs. If you are having problems doing this on your own, you may need to ask for professional help.
  2. Eating a healthy, balanced diet full of fruits and vegetables and reducing the amount of processed, chemically preserved, fatty and sugary foods in your diet.
  3. Exercising regularly.
  4. Getting adequate sleep.
  5. Being smart about using over-the-counter medications, supplements and herbs and avoiding ones that are toxic to the liver.
  6. Getting vaccinated for Hepatitis A and B.
  7. Reminding your doctor you have HCV whenever medications are prescribed to you, as some should not be given to people with liver disease.
  8. Learning as much as you can about HCV infection--a good place to start is the HCV Advocate website and their fact sheets.
  9. Reporting new or troubling symptoms to your doctor.
  10. Asking for support from your family, friends, professionals and others living with HCV as you learn to take care of yourself and adjust to life knowing you are HCV+.

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Wednesday, May 19, 2010

World Hepatits Day 2010: Who, What, Where, When and How? (#worldhepday)


From the World Hepatitis Alliance website:

Who organises World Hepatitis Day?

World Hepatitis Day is coordinated by the World Hepatitis Alliance, a non-governmental organisation that represents over 280 hepatitis B and hepatitis C patient groups from around the world.

Why is it important?

Shockingly one in 12 people worldwide is living with either chronic hepatitis B or C. While this is far higher than the prevalence of HIV or any cancer, awareness is inexplicably low and the majority of those infected are unaware.

The World Hepatitis Alliance hopes that World Hepatitis Day will prompt people to think about the huge scale of viral hepatitis infection globally, about whether they may be at risk (and if so, to get tested) and also about how to avoid becoming infected. The long-term objective of the campaign is to prevent new infections and to deliver real improvements in health outcomes for people living with hepatitis B and C.

What is the symbol for World Hepatitis Day?

The World Hepatitis Day logo is a symbol that represents the awareness raising efforts of the global hepatitis community. The logo includes a globe that itself consists of multiple translations of the World Hepatitis Alliance’s awareness-raising campaign programme ‘Am I Number 12?’.

Where does World Hepatitis Day take place?

World Hepatitis Day is supported by 280 patient groups from more than 60 countries across the globe. Together with governments, non-governmental organisations and associations, healthcare professionals, companies and thousands of individuals and patient groups coordinate World Hepatitis Day activities in the following countries: Algeria, Argentina, Australia, Austria, Azerbaijan, Bangladesh, Belgium, Bosnia Herzegovina, Brazil, Bulgaria, Canada, Chile, China, Colombia, Croatia, Cuba, Dominican Republic, Egypt, France, Germany, Ghana, Greece, Guatemala, Hong Kong, India, Israel, Italy, Japan, Jordan, South Korea, Kuwait, Lebanon, Libya, Malaysia, Mali, Mauritius, Mexico, Morocco, The Netherlands, New Zealand, Nigeria, Pakistan, Peru, Philippines, Poland, Portugal, Puerto Rico, Romania, Russia, Serbia, Singapore, Slovakia, Spain, Sweden, Switzerland, Taiwan, Tunisia, Turkey, United Arab Emirates, United Kingdom, Uruguay, United States of America, Venezuela and Vietnam.

When is World Hepatitis Day?

World Hepatitis Day takes place annually on 19 May. The event was launched in 2008 and in 2010 the World Hepatitis Alliance will be coordinating the third annual World Hepatitis Day.

How you can get involved in World Hepatitis Day?

World Hepatitis Day is a campaign coordinated by patients, for patients and if you would like to know more about the campaign and how to get involved or have any questions please contact the World Hepatitis Alliance.

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World Hepatitis Day 2010: Are You Number 12? (#worldhepday)


Today is World Hepatitis Day 2010 and it's time to get real about your risk of having viral hepatitis B and C. Worldwide, 1 in 12 people live with viral hepatitis. In the United States alone, an estimated 5.3 million American live with chronic viral hepatitis, yet many have no idea they are infected.

Why do you need to know if you have viral hepatitis?

Viral hepatitis B and C are devious infections, most often causing minimal or no symptoms in those infected while quietly damaging their livers. Most people who are unaware of the status don't find out they are infected until the virus has done decades of damage and their condition is very serious, i.e. cirrhosis, liver cancer. But if you know you have viral hepatitis, there are medical treatments that can help, routine tests that can monitor for liver damage and day-to-day things you can do to stay healthy.

How can I assess my risk for viral hepatitis?

You might be at risk for
viral hepatitis B (HBV) if:
  • You were born to a mother with HBV
  • You have sex with partners who have hepatitis HBV
  • You are a man who has sex with other men
  • You are a current or former injection drug user
  • You live in a household with someone who has chronic HBV infection and have contact with their blood or share items such as razors or toothbrushes
  • You are a healthcare or public safety worker at risk for occupational exposure to blood or blood-contaminated body fluids
  • You are a hemodialysis patients
  • You travel to countries with intermediate or high prevalence of HBV infection
You might be at risk for viral hepatitis C (HCV) if:
  • You are a current or former injection drug users
  • You received a blood transfusions or solid organ transplants before July 1992, before better screening of donors for Hepatitis C became available
  • You are a hemodialysis patient
  • You are a healthcare worker, military personnel or emergency first responder who has an occupational risk of needle stick injuries
  • You are a person living with HIV infection
  • You were a child born to a HCV-positive mother
In addition, hepatitis C is infrequently transmitted through:
  • Having sex with an HCV-infected partner
  • Sharing personal items contaminated with HCV positive blood, like razors or toothbrushes
  • Procedures like tattoos, piercing, medical and dental surgeries or injections, where standard precaution are not followed, implements are not properly sterilized and/or needles are reused
In addition, if your health care provider ever tells you that your liver enzyme tests are abnormal, request that they test you for viral hepatitis.

If you think you have risk factors for HBV or HCV, please talk to your health care provider or visit your local public health clinic and ask to be tested for viral hepatitis.

How can I prevent becoming infected with viral hepatitis?
  • Ask your doctor about the Hepatitis B vaccination, especially if you did not receive it as part of your childhood vaccinations (most adults today did not)
  • In households with member who have viral hepatitis, take precautions to avoid contact with blood by using gloves, using a diluted bleach solution to clean up spills and do not share personal items that might come in contact with blood, like razors and toothbrushes
  • Adopt safer sex practices, like using condoms
  • If you are an injection drug user, avoid sharing injection paraphernalia with others, learn to clean your works and/or participate in needle exchange programs
  • Ask your medical and dental providers to explain the standard precautions they use in their office to prevent the spread of infections, like sterilizing equipment, wearing gloves and disposing of used needles
What else should I know about viral hepatitis?

Viral hepatitis is not spread through food or water, sharing eating utensils, breastfeeding, hugging, kissing, hand holding, coughing, or sneezing.

Learn more:

Visit the Centers for Disease Control web pages Hepatitis B Information for the Public and Hepatitis C Information for the Public for more comprehensive information about viral hepatitis.


Another great resource is the World Hepatitis Alliance's website at aminumber 12.org.

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Tuesday, May 18, 2010

World Hepatitis Day 2010: More About How I Became HCV+ (#thisishep)


August 1988: So there I was, once again, in the Emergency Room at UCLA Medical Center, only this time I was turning yellow.

My bout with acute hepatitis progressed rather quickly from the time I noticed tinges of yellow around the corners of my eyes in San Diego. Twenty-four hours later, there in the ER, the whites of my eyes turned completely yellow and my skin was changing color too. The effect was similar to the fake orange color of a spray-on tan, only in a dark shade of yellow.

By the time I got to the ER, I was extremely nauseous, vomiting, unable to eat, extremely fatigued and experiencing pain over my rib cage on the right side. The most troubling symptom for my doctors was my high fever. I waited patiently in the ER as they evaluated me, drew blood, called for a consult and found a bed for me on the oncology floor. It comforted me to know that at least I would be cared for by the doctors and nurses I came to know during my cancer treatment.

The worst part for me about having acute hepatitis was the nausea and vomiting. I literally threw up more with acute hepatitis than I did the entire duration of my cancer treatment. It was a good thing they started an IV, because for a while I could not keep anything down. Between the fevers and antiemetic medication, I spent most of the first few days in the hospital sleeping. By the time I felt ready to attempt to eat food again, I could only tolerate a pureed diet.

While hospitalized, I experienced my first liver biopsy. Honestly, I didn't think it was half as bad as all the bone marrow biopsies I endured. The liver doctor numbed up my right side and stuck a long needle in between my ribs as I laid very still on my hospital bed. From my vantage point, I really didn't see the needle and I felt very little pain with the procedure. Afterward, I was instructed to lay flat on my back with a sand bag over my liver for several hours, time which I spent napping. The purpose of the biopsy was to assess liver damage, but I think because I was so sick the results came back atypical, showing I had chronic liver disease.

After about a week, the medical staff felt that my fevers were under control and I could be discharged. I went back to my parents' home still needing to eat a puree diet. My dad was traveling for work at the time, so I begged my mother to go to the store to pick up some baby food and popsicles. When she refused, I called a friend and he came over and took me to the store. Later that evening, I started spiking a fever again. I placed a call to my oncologist and he instructed me to go back to the ER. My mother was furious at me. During the entire ride to the hospital, she ranted about how I shouldn't have gone to the grocery store and how inconvenienced she was having to drive me to the ER. The minute the doctors decided to readmit me, she left and went back home.**

In total, I spent somewhere between two to two and a half weeks in the hospital because of acute non-A, non-B viral hepatitis.

By the time I was discharged for the second time, I was living with horribly debilitating fatigue. It took me several years to very slowly and completely recover. My plans to return to classes at UCLA to complete my Bachelor's degree in the Fall of 1988 got pushed out to Winter quarter 1989. Instead of going back to college full time, I needed to adjust my schedule and take classes part-time. It took five quarters instead of three to complete my Bachelors degree, but what matters most to me is that I received my degree in June 1990.

I spent that first Thanksgiving after the one-two punches of cancer treatment and acute hepatitis helping to prepare dinner from a seated position at the kitchen table. I bought a copy of Jane Brody's Good Food Book and I was learning how to cook a liver friendly diet full of vegetables and fruits. I remember I made her mashed potato stuffing for the turkey that year and was roundly criticized by my family for that choice!

Back in 1988 they called what I had non-A, non-B hepatitis because they hadn't yet identified the virus that causes Hepatitis C. When the Hepatitis C test came out in 1992, my doctor ordered the test for me. It was not a surprise when the results came back. I was HCV positive.

Perhaps the only good thing that came out of this ordeal was knowing that I had hepatitis. This knowledge made it clear to me that I needed to take good care of myself and I was advised by my doctor to avoid drinking alcoholic beverages. Believe me, there were times I wished I could join my friends trying the latest drink sensation--like cosmos in the 1990s. But I chose to abstain because I never want to be as sick as I was back when I had acute hepatitis. Turns out, avoiding alcohol was very good advice. Research shows that moderate to heavy drinking can increase the progression of Hepatitis C infection resulting in more severe liver damage, cirrhosis and an increased risk for liver cancer (read more here.)

I have known for 22 years that I have been living with Hepatitis C. I am one of an estimated 3.2 million Americans living with it each and every day. If it hadn't been for my severe bout of acute hepatitis, which is a very rare occurrence, I might be one of the many people who don't know they are infected. Yes, I am one of the one in twelve people worldwide living with viral hepatitis. And tomorrow on World Hepatitis Day, May 19, 2010, I am going to ask you the question, "Are you number 12 too?"

**ADDENDUM: I can look back on that episode with my mother and laugh now. In contrast, it makes all the things my dad did for me during that time, like taking me to the ER and hospital multiple times, seem almost heroic. She didn't know how to be caring, but thankfully my dad did. She passed in 1999 from colon cancer and I chose to care and be there for her. I know there is some irony there and a lesson too: we all do the best we can with the cards life deals us.
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Monday, May 17, 2010

World Hepatitis Day 2010: How I Became HCV+ (#thisishep)


As I gear up for World Hepatitis Day 2010 which is this upcoming Wednesday, May 19th, I want to share my story of how I became Hepatitis C positive (HCV+)...

It was January 1988 and I have just been diagnosed with acute promyelocytic leukemia. After months of not feeling quite right after a viral infection and my doctors playing a 'let's wait and see' game, I've made it to the hospital in pretty bad shape, with a white blood cell count of .9 and severely immune compromised. I knew before the doctors told me that things were very serious and didn't flinch when I was told I was in for the fight of my life. Without a sibling match, the treatment plan went from a bone marrow transplant to four courses of chemotherapy.

I soon learned how leukemia treatment worked. Each time I entered the hospital for a month-long course of treatment, they gave me enough chemotherapy to wipe out my bone marrow but preserve my stem cells. Without my bone marrow to generate new cells, my doctors relied on multiple blood transfusions to get me through the weeks when I could not make my own red blood cells, platelets and clotting factors. Soon I lost count of the number of blood transfusions I received.

Years later, when I reread my cancer treatment consent forms, I saw the mention of the risk of non-A, non-B hepatitis from blood transfusions. However, in the moment, that risk was not enough to stop me from signing the forms and agreeing to treatment. Back then,
my attention became firmly focused on how I was winning my fight with leukemia with the completion of each course of chemotherapy. By August 1988, the fight concluded. I was in remission, cancer free and done with my treatments.

Yet on a celebratory trip to San Diego a week later, I started feeling poorly. I cut short a night of dancing with my friends to head back to our hotel room so I could lie down. I don't know what possessed me to exam my face in the bathroom mirror when I entered the room, but as I stared at myself I saw that my eyes had a yellowish tinge to them. I asked my friends to confirm what I saw, but they didn't notice the subtle change. I spent a restless night with nausea and stomach pain, feeling anxious to get home. I endured the return trip lying down in the back seat of my friend's car, sipping a bottle of Gatorade and trying to enjoy the end of a trip that seemed to be headed in the wrong direction.

Once home, I called my oncologist and was instructed to immediately go to the Emergency Room. It was there that I learn I was experiencing the symptoms of acute hepatitis as they prepared to admit me back into the hospital...


TO BE CONTINUED

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Sunday, May 16, 2010

My Plans for a Sensational Summer

Reminiscing SummerImage by Lin Pernille ♥ Photography via Flickr


Ah, summertime and the living is easy. I love the summers here in Southern California. I love the sunshine, the extended light into the evening hours and the warmer temperatures. Summer lures me outside of the house, even on my bad days, and into my garden. I also gets me thinking about vacations and walks down by the beach in Oxnard or San Diego.

So as I think ahead to the summer months, I've already started a list of things I want to do during my favorite season:
  1. Try new things in my container garden, like growing tomatoes upside down, planting some different vegetables, like okra and Brussels sprouts, and getting my garden planted earlier in the season.
  2. Work with my dog Brunswick so that he passes the Canine Good Citizen test.
  3. Start working on handmade Christmas gifts in July, like amigurumi dolls and loom knitted hats, gloves and scarves.
  4. Try some new medications with the help of my neurologist and try a new chiropractic treatment for my fibromyalgia.
  5. Get some help to: 1) get the metal frame gazebo I bought a while back at The Home Depot finally erected on my backyard patio; 2) pull the wicker furniture out of the garage and place it onto the patio to create the outdoor room I've been wanting; 3) clean up the BBQ and start grilling up some great summer meals.
  6. Break out the T-Tapp More Rehab Program DVDs I purchased and try out this new approach to exercise.
While all these activities build on things I already do, I think I need to do something new, different and out-of-the ordinary this summer too.

So while I am laying on the grass in the backyard, looking up at the clouds, birds and airplanes passing by, I am going to start dreaming up a new life for myself. Yes, I am going to let go of the past and all the dreams that frustrate me because they never came to fruition. I am going to replace those old dreams with new dreams born of experience, understanding and a renewed sense of possibility. My goal is to shake off the last vestiges of a life that was not meant to be and make deliberate steps away from an existence where I just mark time until somebody heals me.

Yes, I am going to do what I like to refer to as a "Madonna": I am going to reinvent myself ( '80s clothes, hair and accessories optional.) I am going to have a summer of adventure, rediscovery and prospects. From my vantage point, lying on the grass in my backyard, this summer the only way to go will be up! The sky will be my limit, full of promise and possibilities. I will pick myself up and start over.

If I can reinvent myself and come away with new goals, new prospects and a new sense of purpose for my life by the end of September, what a sensational summer this will be.


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Saturday, May 15, 2010

The Real Truth About Me

EmotionalImage by KaitlynKalon via Flickr

Yesterday got me in touch with some truths about myself that I hadn't experienced in a while.

Day-to-day, I try to convey information in an optimistic tone on my blog, sharing my discoveries, coping strategies and words of encouragement. Yesterday I wondered if sometimes I avoid talking about how much of a struggle life with chronic illness really is and how chronic illness evokes a wide range of emotions in me. You see, I have started reading some new blogs and following some new people on Twitter who don't hold back and tell it like it is for them, so I began to wonder if I need to be more real and talk about ALL my feelings too.

So I want to set the record straight.

For me, living with chronic illness seems to be about adjusting to lots of grief and loss. As a result, I feel a lot of different things about living with chronic illness. Elisabeth Kubler Ross' five stages of grief pretty accurately describe the experience: denial, anger, bargaining, sadness and acceptance. As life would have it, just when I think I have finished adjusting, something new pops up and I go through the whole cycle, again and again. So that would be denial, anger, bargaining, sadness, acceptance, repeat, denial, anger, bargaining, sadness, acceptance, repeat...

My feelings of grief and loss can be triggered by many things:
  • disillusionment when a new treatment option doesn't bring the relief promised
  • unfair comparisons to healthy people that leave me feeling less than
  • dissatisfaction about where I am in my life versus where I want to be and where I dreamed I would be
  • reminders that I am not living up to other people's expectations of me
  • overt and covert accusations that I can't have THAT much pain, fatigue and impairment
  • frustration about not getting the help I need from family and friends to do every day, ordinary things
  • annoyance at my limits and limitations
  • disappointment when those around me experience temporary lapses in caring and act as if they have forgotten that I struggle with chronic illness 24 hours a day, 7 days a week, 365 days a year
Most of all, I am keenly aware that I am not a normal, healthy person. I admit that I don't travel well, I can't keep up, I say no a lot, I cancel plans, I make a lot of requests, I require many accommodations and I am, in general, very high maintenance. In short, I make a lousy friend! I realize that the way I am is not at all ideal, which is why I overcompensate by trying to be easy going, like keeping my mouth shut and putting up with a lot of guff from people rather than getting into it with them.

But then yesterday I started to question if this is really the best approach FOR ME. 'Maybe I just need to stop being so inhibited and start being more myself,' I thought. I pondered whether assuming the role of Ms. Fibro-friendly really sends the right message. Does presenting an image of myself as coping "so well" send a mixed message?

"She says she has a lot of pain and fatigue but then she seems to be doing, saying, going out, living and smiling."

It seems living my best life with chronic illness may be fraught with some contradictions.

To Be Continued.....



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Friday, May 14, 2010

Health Care Reform: Will It Limit My FSA?

President Barack Obama speaks to a joint sessi...Image via Wikipedia


I was wrong and I am big enough to admit it.

A while back, I wrote a blog post saying that health care reform wouldn't affect me. Well, I have recently learned otherwise. Turns out, health care reform is going to have a negative impact on our family's ability to contribute to and use our (FSA), a benefit currently offered by Robert's employer. In addition, there is speculation in the media that employers may stop offering FSAs to their employees as they begin to implement the provisions in the health care reform law.

Surprisingly, we haven't used a FSA until this year, so I definitely see the irony in this situation.

In previous years, I committed myself to saving all our medical receipts and trying to deduct part of our out-of-pocket medical expenses on our income taxes. And let me tell you, as a person living with chronic illness, I racked up the out-of-pocket medical expenses. Using this method, I could only deduct expenses that were over 7.5% of our adjusted gross income (AGI). (Since I am not an accountant, I let Turbo Tax figure this out for me.)

With the FSA, we now use pre-tax dollars from Robert's paycheck towards things like medical and dental visit co-pays and deductibles, prescription co-pays, over-the-counter medications, durable medical equipment and supplies for my CPAP machine.

I am learning that the benefits of a FSA include:
  • peace of mind knowing that we have a nest egg of money available to pay our out-of-pocket medical expenses, even when money is tight
  • having all the FSA money upfront at the beginning of the benefit year to help us meet our insurance plan deductibles (which keep going up and up)
  • not having to put a doctor's appointment off or worry about filling a prescription because we don't have the money for the co-pay
  • coverage for over-the-counter medications, like newer allergy and heartburn medications which no longer require a prescription
  • not having to worry about accumulating receipts totaling 7.5% of our adjusted gross income in order to qualify for a tax credit for medical expenses
Sounds good, huh?

Unfortunately, the recent health care reform legislation is going to negatively impact FSAs in two ways: 1) decrease how much money can be contributed to them and 2) restrict the use of FSA money to purchase over-the-counter medications. As explained by the website Save Flexible Spending Plans:


Health Care Reform Limits Flexible Spending Accounts

The recently passed health care legislation caps annual contributions to flexible spending accounts (FSAs) at $2,500 beginning in 2013 in order to fund a small portion of (health care) reform. The new law also restricts FSAs by cutting over-the-counter medicines from the approved uses for FSA monies for individuals purchasing items without a prescription.



While the efforts of FSA supporters successfully prevented this benefit from being eliminated (entirely), the fight to preserve FSAs is likely to continue in the coming years.



Beyond the use of FSAs as a valuable budgeting and cost-saving tool, the benefit enables users to take responsibility for their health care regime and treatment. The benefit is particularly valuable for individuals and families battling chronic conditions who require ongoing care and medical supplies.(That would be me!)



President Obama and Congress should protect FSAs from additional restrictions and allow the program to continue to serve as a safety net and solution for millions of Americans to cover their out-of-pocket health care expenses.



What Can You Do?

Please visit Save Flexible Spending Plans to learn the facts about FSAs and how they
especially help persons living with chronic illnesses. Then visit the Action Center tab to send an e-mail to your elected officials to tell them how you feel about the upcoming changes to how FSAs will work. Be sure to mention how a FSA helps you or your family member better manage the out-of-pocket expenses of their chronic illnesses.

The more I educate myself, the more I realize what a powerful tool a FSA is. I am literally kicking myself for not taking advantage of it until now. If you take the time to explore the Save Flexible Spending Plans website, I guarantee you'll be signing up for a FSA the next time open enrollment time comes along.

Please help me preserve and expand this benefit for all Americans, especially those of us living with and managing chronic illnesses.


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Wednesday, May 12, 2010

Make Fibromyalgia Visible: How You Can Help


Now don't be shy; you can help spread awareness too! Even if you only have 60 seconds, there are four things you can do to spread awareness and Make Fibromyalgia Visible (courtesy of the National Fibromyalgia Association):

  1. Add a Make Fibromyalgia Visible graphic to your emails and website (like the one at the top of this blog post.) Download the free logo here.
  2. Become of fan of the National Fibromyalgia Association on Facebook by clicking here.
  3. Take the Pledge to Care and let your name be counted among all the family members, friends and healthcare providers of people living with fibromyalgia who support the National Fibromyalgia Association's advocacy efforts. Click here to take the pledge now.
  4. Show you care by making a purchase at the NFA store. Click here to preview the awareness merchandise specifically for the 2010 campaign.
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Make Fibromyalgia Visible: Quick Facts About Fibromyalgia

PAIN Knuckle Tattoo 11-23-09 IMG_9890Image by stevendepolo via Flickr


You can't make fibromyalgia visible if you don't know that fact. So here they are, the quick facts about fibromyalgia,
courtesy of the Fibromyalgia Network (www.fmnetnews.com):

  • Fibromyalgia affects 3 to 5 percent of the population (that means almost 1.5 million people in the United States live with fibromyalgia)
  • It 0ccurs in people of all ages, including children
  • More women are diagnosed with fibromyalgia, but men can have it too
  • Fibromyalgia is a condition that is chronic and long-term, but the severity of symptoms can fluctuate throughout the day
  • About 25% of people with fibromyalgia are unable to work due to the severity of their symptoms
  • The first drug specifically for fibromyalgia was approved by the FDA in 2007 and more treatments are currently under development

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    Make Fibromyalgia Visible: Top 10 Signs You Are Living with Fibromyalgia

    fibromyalgia awarenessImage by veganjoy via Flickr


    Today is Fibromyalgia Awareness Day and I am spreading awareness through my blog and on Twitter. The theme of this year's awareness campaign is Make Fibromyalgia Visible, which got me thinking about all the ways fibromyalgia affects my day-to-day life. I started composing this Top Ten list in my head yesterday. Hopefully all the wittiest items made it out of my head and into this post...

    Top Ten Signs You Are Living with Fibromyalgia
    1. The first thing you do when you enter a room is look for a place to sit down.
    2. You keep a rolling walker in the car, a cane by the door and a mobility scooter in the garage.
    3. You find yourself frequently asking your spouse, "Please bring me the thing. You know, the whosy whatsit. Arrgh. You know what I mean. The whatchamacallit! "
    4. You calculate whether you can meet a friend for coffee or see a new doctor based on your "comfortable driving distance."
    5. You realize that most of your hobbies involve your television, your TiVo and your computer.
    6. You only buy relaxed fit pants with pockets, comfortable t-shirts and leisure bras. You have put everything form-fitting, sexy and revealing in mothballs.
    7. You made a t-shirt that says, "I'm not lazy, I'm pacing myself."
    8. You walk your dog using a mobility scooter.
    9. You accept that a good night's sleep means fall asleep before 6 a.m. and getting up sometime in the afternoon.
    10. You don't care anymore if your family or friends believe you have fibromyalgia because all your new friends believe you because they are people living with it each and every day too.

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    Make Fibromyalgia Visible: Take the 'Pledge to Care'

    Fibromyalgia AwarenessImage by Kindreds Page via Flickr


    Do you know and love me?

    If you do, then I want to ask you to do something very important to me. I want you to take the National Fibromyalgia Foundation Pledge to Care on Fibromyalgia Awareness Day, TODAY, May 12, 2010. I want you to add your name to the list of people that love and support persons living with fibromyalgia each and every day.


    So what do you say? Will you Pledge to Care for me? Click here to be redirected to the National Fibromyalgia Association website to add your name to their online "We Care" web page.

    Thank you for your support!



    Family & Friends Pledge to Care



    We pledge to:

    • ALWAYS STAND BESIDE LOVED ONES with fibromyalgia, and support the patients’ quest for a better quality of life.


    • ACT AS AN ADVOCATE to insure that loved ones receive the best possible medical care.


    • BE RESPECTFUL OF LOVED ONES’ PHYSICAL LIMITATIONS, and help—or get help—when it is needed.


    • EDUCATE OTHERS about fibromyalgia and encourage them to provide people with fibromyalgia with support and understanding.


    • ADVOCATE for improved treatments, expanded research and an increased awareness and acceptance of fibromyalgia.


    • UNCONDITIONALLY LOVE the people in my life who have fibromyalgia.


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    Tuesday, May 11, 2010

    Fibromyalgia Awareness Day 2010 Press Release: Make Fibromyalgia Visible









    From the National Fibromyalgia Association website:


    “Make Fibromyalgia Visible”



    National Fibromyalgia Association commemorates National Fibromyalgia Awareness Day with 3rd Annual Walk of Fame and Concert at Cal State Fullerton




    ANAHEIM, Calif.—(29 March 2010)—The National Fibromyalgia Association (NFA) will commemorate National Fibromyalgia Awareness Day on Saturday, May 15 at California State University Fullerton (CSUF) with free day-long activities that include a Wellness Fair, educational seminars, 1K and 5K walk.



    In the evening, R&B singer and new NFA spokesperson, Tony Terry, whose wife has fibromyalgia, will perform a special concert during the closing “Lights of Hope” candle lighting ceremony. Terry will also debut a new song from the National Fibromyalgia Association dedicated especially to the over 10 million people affected by fibromyalgia in the U.S. and 3-5 percent worldwide.



    “Make Fibromyalgia Visible” is the NFA’s theme for this year’s National Fibromyalgia Awareness Day, officially observed on May 12. Awareness Day is designed to increase awareness and understanding of fibromyalgia a chronic pain disorder usually characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue and often psychological distress.



    The May 15 event is co-presented by CSUF’s Fibromyalgia Research and Education Center. For sponsorship opportunities and more information, contact Karen Wiley at 714-921-0150 or kwiley@fmaware.org.



    About the National Fibromyalgia Association



    The National Fibromyalgia Association is a 501(c) 3 nonprofit organization headquartered in Anaheim, California whose mission is: To develop and execute programs dedicated to improving the quality of life for people with fibromyalgia. The NFA publishes FM Aware magazine, which recently went digital in 2010.



    Media Contact: Corin Ramos, APR, corin@walsonpr.com
    (w) 714-970-2268 or (c) 714-865-4147



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    Monday, May 10, 2010

    A Story in 140s: Persons Living with Fibromyalgia (PWFs)

    The Twitter fail whale error message.Image via Wikipedia


    Inspired by a comment from my friend Mo, here is a story about connecting with others through Twitter:


    In college I had a bulletin board on my dorm room door. I often posted short poems on my door for passersby to read. I also had a white board for people to leave me messages. I really enjoyed coming back to my room to see all the random messages, poems and quotes my neighbors left on my door.

    Yeah, I went to college in the dark ages, before texting, IMing, e-mail, Facebook or Twitter. I guess that makes me a dinosaur...

    Luckily I have a fondness for technology and have been an early adopter of new and novel ways to communicate. That includes joining Facebook, writing a blog and tweeting. I am plugged in and unabashedly plugging myself using social media.

    Wondering what in the world I do on Twitter?

    Well, I recently plugged into a community of persons living with fibromyalgia and other chronic illnesses on Twitter. Each time I found a fellow ChronicBabe, I hit their follow button and added them to my list. Now I am starting to have conversations with them about the issues we collectively face each day. Granted, the conversations take on a relaxed and leisurely pace, can last for days and sometimes do not have an obvious start or conclusion. But on Twitter, there isn't the pressure to respond right away, or even at all, if you don't want to or aren't up to it.

    With only 140 characters allowed per tweet, it's short, sweet and to the point.

    Wondering how you have a conversation on Twitter? Here is a recent example:

    My friend to the Twitterverse: People with fibromyalgia called: #fibromites, #spoonies or #fibromyalgiacs Are any of those terms respectful? #fibro my friendYou make a very good point. I've learned some of the nicknames from #fibro sites. Perhaps it's sending the wrong message...
    My friend replies to me: @selenamki yeah the nicknames are something to think about...


    My friend to the Twitterverse: My prob w fibro names explained! RT @Disabilitygov: Imagine referring to your friend as "the cancerous woman." http://bit.ly/cbdRk2 #Fibro

    I reply to
    my friend: I like the terminology 'person living with___' as in 'I am a person living with fibromyalgia."


    My friend replies to me: @selenamki that's a mouthful, but feels better. I am NOT my disease. I just saddled myself with the moniker. I crack myself up. Sort of.

    I reply to my friend: It's a mouthful, but much more empowering. Persons living with AIDS abbreviate it to PWA. So we could use PWF...


    My friend replies to me: @selenamki we could start our own trend #PWF YES!!! I didn't know people with AIDS called themselves anything but people w/AIDS. Go figure.


    My friend to the Twitterverse:
    #PWF=People with #Fibromyalgia instead of #fibromites What do you think? #fibro
    i K, better than 'I have fibro' #PWF=People with #Fibromyalgia instead of #fibromites What do you think? #fibro
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