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Friday, October 29, 2010

Not All Dreams Come True

A débutante wearing a traditional white evenin...Image via Wikipedia
One of my favorite dreams is from my childhood, inspired by Walt Disney films I am sure. I am a princess dressed in a white ball gown with gold accents. I am waiting for my prince to come. I know that he is on his way and I am feeling excited and happy. I envision him in my mind, as he arrives dressed in a white military style suit with gold trimming atop a white horse. But in my dream, he never arrives.

More recently, I dreamed that I didn't have chronic pain anymore. I was very disappointed when I awoke to find it wasn't true. As if to correct a mistake, the next night in my dream I couldn't remember what it felt like not to live with chronic pain. I woke up and realized that was true.

Dreams are devious things. The ones that happen when we are asleep are a curious mix of the real and the symbolic, with a dash of the events of the previous day mixed in. Nothing is as it seems and trying to figure out what they mean is the subject of many, many books.

Then there are the dreams we create in our minds when we are day-dreaming. You know, when you focus on your wishes and desires and convince yourself that those are things that you want, you need and you can have. The dreams we create to deal with or escape from the boredom, frustrations and limitations of our daily lives.

Some day-dreamers say that if you can imagine it, you can achieve it. Sure, we all know people who seem to have attained their dreams: dream job, dream house, dream car, dream marriage. There are tons of inspiring stories, from fairy tales to documentaries, about people obtaining their dreams and lots of self-books that show us how to do it.

But lately I find myself asking, 'Are all dreams truly achievable?'

You see, my life with chronic illness seems to be thwarting some of my dreams. Using all these self-help techniques and strategies aren't helping to make them a reality. Some of my dreams don't seem to be possible in light of all the things that life has thrown my way, like illness, financial constraints, adversity, reality and limitations.

Which makes me wonder if the deficiency lies with my dreams or me, the dreamer...

In reality, there are just as many stories about
unfulfilled dreams as there are about dreams coming true. In fact, some of the best stories I have read involve things like unrequited love, missed opportunities, unforeseen tragedies and frustrated ambitions. In these messy moments of anger, frustration, disappointment and sorrow, I find myself connecting to the people in these stories much more than with the ones who live blissfully in their perfect, dream-fulfilled worlds. Like the heroine in one of my favorite childhood stories, the original The Little Mermaid.

As much as I would like to live my dreams, I am constantly reminded that this is not a perfect world. Life can be unfair and difficult. Life doesn't promise us a huge house on a hill with a rose garden. So while day-dreams may serve a purpose, like being a refuge from the onslaught of real life to a source of inspiration when we are feeling down, I accept that not all dreams can and do come true.

I guess that revelation should make me sad. But instead I chose to focus on how truly special it is when, despite living in an imperfect world, one of my dreams does come true.


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Thursday, October 28, 2010

Fall Down Seven Times, Get Up Eight

A traditional Daruma doll, with one eye filled...Image via Wikipedia
Did you know that I am in a multiracial marriage? My husband is of Japanese descent and I am of German, Irish and French descent. Being exposed to different ideas, traditions and legends is one of the benefits of being in a multicultural marriage.

This is how I learned about the legend of Daruma and the Japanese proverb nana korobi yaoki, which translates to “Fall down seven times, get up eight”.

Daruma essentially is a wishing doll. You focus on an intention, then color in one of his blank eyes. That's when he goes to work for you, reminding you of your commitment to your goal. When your goal is achieve, you celebrate by filling in his other eye. Read more about Daruma here.

His rolly-polly shape embodies the spirit of the Japanese proverb “Fall down seven times, get up eight.” Knock him over and because of his shape, he'll spring back into his upright stance. (Which makes me wonder if they got the idea for Weebles toys from the Daruma!)

Could my life with chronic illness have a more fitting byline than “Fall down seven times, get up eight.” or a more fitting mascot than Daruma?

Over the past six years learning to live with fibromyalgia, I have endured many setbacks, flare-ups, brick walls, frustrations and disappointments. What has kept me going is persistence and patience. I don't give up when I fall down, I figure out how to get back up. Granted, it might take me a while to work out exactly how I get back up, but eventually I always seem to push my way back to upright.

Plus the many health adversities
I have faced in the past 20+ years, like cancer, diabetes, Hepatitis C and infertility, have taught me to reframe problems as challenges to be faced and mastered. Along the way, I've discovered that I'm a girl who is always up for a challenge. I have also learned to how to endure setbacks. What makes this possible is knowing that setbacks do not last forever, especially if I am patient enough to wait them out and persistent enough to get up and move forward again.

Which brings me to one last pearl of Japanese wisdom: tamashii. This is the Japanese word for indomitable spirit, a word used to describe the traits and attitude of a successful warrior.

Oh my, how my life with chronic illness has developed my tamashii!


How do you face the setbacks and challenges of life with chronic illness? Do you have an inspiring mascot or byline? Share your thoughts by leaving your comment below.

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Wednesday, October 27, 2010

Wordless Wednesday: Sorrow





Image by dcubillas






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Tuesday, October 26, 2010

Welcoming A New Member to the Cancer Club

Beschreibung: Konventionelles Röntgenbild des ...Image via Wikipedia
I have a friend who was just diagnosed with lung cancer last week. It was a diagnosis that came out of the blue, without rhyme or reason.

Coincidentally, I already had plans to see her this past weekend at the annual Halloween party that she and her husband throw.

To be honest, I thought they were going to cancel the party. When they didn't, I thought that the party might be awkward in light of her diagnosis. Not that I felt awkward about her news--as a cancer survivor, I really get it that other people get cancer and really wanted to have an opportunity to show my support for her. It's just that I know some people who haven't had illness in their lives often get weird around people who are newly diagnosed.

The party was a success, even though it wasn't as well attended as in previous years. The theme this year was Moroccan nights and the spread of Moroccan-inspired food was delicious. I loved how they turned their living room into a tent to give it an authentic Moroccan bazaar atmosphere.

The thing is, the best part of the party was when everyone else left and it was just me, my husband and our friends. I got to have a heart-to-heart with my friend and ask her how she was doing with her diagnosis and all the tests. I got to break that weirdness barrier and have a real conversation with her.

I admit that in my mind, I had prepared an agenda of sorts for our conversation. You see, I wanted to impart a message of hope and understanding to her. I wanted her to embrace that she was already a cancer survivor and that every day she lived past her diagnosis was another day of survival. I wanted her to know that this was going to be a battle and that parts of this journey were going to suck. I wanted her to ignore the statistics about her disease and focus on taking things one step at a time, one piece of news at a time, one test at a time, one feeling at a time.

I also wanted her to know that I wanted to be there for her, however she wanted my support.

It is truly heartbreaking for me when others join the "cancer club." But as a 22 year member, I also feel a responsibility to reach out to fellow cancer survivors, whether newly diagnosed or new to the reality of cancer treatment long term and late effects. I feel a calling to welcome them to the "club" and give them an orientation if they want one.

As much as I want cancer to be a part of my past, clearly it is not done with me. It reminds me of this every time it continues to affect the people in my life. I am not afraid to stand up to cancer, reach out and provide support to people living with it and it's aftermath. As a cancer survivor, I know this is the most important thing I can do.


Please send some healing thoughts to my friend as she gets her complete diagnosis and treatment plan this week.


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Monday, October 25, 2010

Question of the Week: What Qualities Do You Want In a Doctor?

The Doctor, by Sir Luke Fildes (1891)Image via Wikipedia
If you read my post Building the Perfect Doctor, you know that:





  1. With regarding to my chronic pain and fibromyalgia, I have not found my Doctor Right yet
  2. and
  3. while I have several Good Enough Doctors cobbling together a chronic pain and fibromyalgia treatment plan of sorts, all those doctors put together do not equal a Doctor Right.
In addition to medical knowledge, the qualities I am looking for in a doctor include:
  1. An appreciation that medicine is an applied science AND art.
  2. An acknowledgment that for treatment to successful, a doctor needs to look at a patient from a biopsychosocial perspective and prescribe treatments that build upon a patient's strengths.
  3. A commitment to using medicine as both a way to cure disease AND relieve suffering.
  4. A passion for caring for patients that is unaffected by the stress of the job or the difficulties of the medical system.
  5. A way of viewing medical problems as challenges and opportunities for learning and professional growth.
  6. An attitude of persistence: continually striving to understand patients' medical problems, sticking by them even when the course of treatment is unclear and never giving up on a patient.
  7. A plan of attack that recognizes that sometimes simple is the best approach to problem-solving.
Since this is the question of the week, I want to know what YOU think.

Have you found your Doctor Right? Do you think having a Good Enough Doctor is enough? Did I leave something off my list that you would include? Is there something on my list that you would delete?

Please share, either here or at the Oh My Aches and Pains! Facebook page at www.facebook.com/OhMyAchesandPains.


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Sunday, October 24, 2010

Building The Perfect Doctor

Lady FrankensteinImage via Wikipedia
I have been thinking about what combination of qualities would make my ideal doctor. You see, despite searching for years for the perfect doctor to treat my chronic pain and fibromyalgia, I have yet to find this mythical creature. So since I have not met my "Doctor Right" and I am currently trying to get by with a few "Good Enough Doctors," I starting thinking that building my own perfect physician might be my best bet.

I know, this seems like equal parts science fiction, horror and fantasy combined, but hey,
if Dr. Frankenstein can dabble in beast building, why can't I?

Like Dr. Frankenstein's monster, I decided to take pieces from real, famous doctors throughout history and cobble them together. My plan: instill these qualities into a top of their class medical student, fresh out of school, stirring them into the cutting edge medical knowledge they just received. (I just haven't figured out the instilling and stirring part yet...)

Like in any good monster movie, with a flip of a switch, a bolt of lightening and an evil cackle, I bring my creation to life!

One Part Dr. Benjamin Spock

Yes, he is a world famous pediatrician and author of the best-selling book
Baby and Child Care. He is also famous for this quote which was his advice to new mothers, "You know more than you think you do." He was one of the first physicians to study psychoanalysis so he could better understand the needs of the children in his care.

KEY QUALITY: Dr. Spock knew medicine is an art, an art of understanding the patient from all viewpoints and formulating a treatment that builds upon the patient's strength and helps them discover their own healing power.

One Part Dr. Guy de Chauliac

This physician, who was the personal physician to three Popes, lived in the 14th century. He is recognized as the first doctor to employ experimental methods to the practice of medicine. For example, he advised other physicians in his time to dissect corpses to gain important knowledge about human anatomy. Using scientific methods, he also dispelled the myth that the plague was caused by poisoned well water, an erroneous but commonly held belief. During a plague outbreak in Avigon, he stayed to treat the sick instead of fleeing as most of the residents did to avoid catching the illness. He eventually got sick himself, but eventually recovered.

KEY QUALITIES: Dr. de Chauliac knew that medicine is a science and the physician must always be questioning, investigating and learning. He also displayed courage when he practiced his profession despite the great risk to his own health.

One Part Dr. Ignaz Semmelweis


Dr. Semmelweis' message was simple: wash your hands to prevent the spread of disease. His recommendations were widely criticized in his day, but his advice is widely heeded today to prevent the spread of germs like bacterium and viruses. His discovery led to a simple yet effective method to prevent communicable diseases. (I wonder what he would have thought about modern day hand sanitizer...)

KEY QUALITIES: Dr. Semmelweis knew that 1) Sometimes something commonplace, overlooked and simple can be the answer you are looking for and 2) Always wash you hands!

One Part Dr. Elizabeth Kubler-Ross

A Swiss-born psychiatrist, Dr. Kubler-Ross' work was a powerful force in the creation of the hospice and palliative care moments, which seeks to bring comfort to those with serious and chronic illness. While talking to patients who were terminally-ill, she not only illuminated the dying process but highlighted the importance using medical care to preserve quality of life when medicine could not provide a "cure" for the patient.

KEY QUALITY: Dr. Kubler-Ross knew it is important to use medicine to relieve the discomforts of illness, like pain, fatigue, nausea and difficulty sleeping.


One Part Dr. Elizabeth Blackwell

Dr. Blackwell holds the distinction of being the first American female physician. She faced a particularly difficult uphill battle getting her medical degree, being the target of harassment from her fellow students and faculty alike. You see, the medical faculty at Geneva College only admitted her because they thought her application was a joke. To their surprise, Ms. Blackwell showed up and diligently attended all her classes, receiving her medical degree on January 23, 1849.

KEY QUALITY: Dr. Blackwell knew the power of persistence and never let go of her dream to be a doctor and help patients in need despite all the discrimination she faced in becoming and practicing medicine.


So what do you think of my perfect doctor? If you built your own perfect doctor, what qualities would you give your creation? Leave a comment here or head over to the Oh My Aches and Pains! Facebook page and join the discussion there.





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Thursday, October 21, 2010

Death by Donut & Other Side Effects Your Doctor Forgot to Mention

Krispy Kreme doughnuts being made at the Krisp...Image via Wikipedia
If you have chronic illness like I do, chances are pretty good that you take several medications.

When faced with new prescription, I always mention my current medications to make sure there are no drug interactions. I ask my doctor about the pros and cons, which usually includes a discussion of side effects. I go through the same drill with my pharmacist when I take the prescription to be filled and make sure I read the literature that comes with a new medication to triple check.

So when I went to see my diabetes doctor on Tuesday, I mentioned to her that I am more episodes of nausea and vomiting since I start Victoza, the once-a-day GLP-1 agonist that I wrote about in my post Ode to My Cereal Bowl. I told her the latest episode was on Sunday morning, two days before my appointment.

"So what did you eat Saturday night?" she asked.

"I had a turkey burger and fries," hoping that I wasn't going to get busted.

"That's probably it," she said. "It was probably the fat in your meal that caused the problem. GLP agonists can cause problems when you eat too much fat in a meal. Next time, when you have the occasional burger and fries, just take less of the Victoza and you should be fine."

Seriously? I am causing this to myself based on my food choices and lack of understanding on how a GLP agonist works?

Well, apparently being told this didn't really sink in, because I ate a Kripsy Kreme donut yesterday.

In my (feeble) defense, it was the last one in the box and I rarely eat donuts. But my hubby wanted some a few days ago and I didn't want to feel left out, so I got a couple too. The cake ones didn't seem to bother me, but this fried one was a different story. The good news is that this 'experiment' proved the point that I cannot eat something so high in fat when I take a full dose of Victoza. The bad news is that I felt lousy all day long.

All day long I kept asking myself, 'I wonder if anyone has actually died right after eating a Krispy Kreme donut?'

Then I realized that on top of the turkey burger and fries I had Saturday night, I came home and had one of those $@&*! donuts for dessert.

Yeah, no more fried donuts for me.


PS I did a quick Google search and only found one mention of problems eating high fat meals when taking Victoza. It was a comment left by someone over at the diabetes website tudiabetes.org


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Wednesday, October 20, 2010

100 Words: On Bad News

National Museum CardiffImage via Wikipedia

Two of my friends
received bad news:
a death
and a troubling diagnosis.


And everything I want
to say
to comfort them
sounds so overused.


In my search
for the message I want to convey,

I remember my own bad news
and
how I felt to receive it.
I run my fingers over scars,
saying kind words to soothe them
and sigh with relief
that I survived those bad times.


I realize then what I really want to say:

I AM HERE FOR YOU
if you need me.


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Tuesday, October 19, 2010

A Diabetes Meme

The blue circle symbol used to represent diabetes.Image via Wikipedia
I know I write more about my chronic pain, chronic fatigue and fibromyalgia. While they have taken the spotlight over the past six years, they aren't my first chronic illnesses. No, my first 'official' chronic illness was type 2 diabetes, diagnosed in January 1999.

So in the interest of giving some equal time to all my chronic illnesses here on my blog, I am completing this diabetes meme, just like Amy of Diabetes Mine and Kerri of Six Until Me (two great diabetes blogs, by the way.)

What type of diabetes do you have?

I have type 2 diabetes.

In this type of diabetes, the pancreas makes insulin, but the body is having problems using insulin to shuttle sugar from the blood into the muscles. In response, the pancreas makes more and more insulin trying to overcome this insulin resistance. At a certain point, the pancreas can not make enough extra insulin to compensate for the insulin resistance and blood sugar levels soar. It is at this point that the diagnosis of type 2 diabetes is given.

It is thought that my chronic Hepatitis C infection is the catalyst of my type 2 diabetes. Researchers in Australia have found that having Hepatitis C 1) increases insulin resistance in muscles and 2) causes those with the genetic predisposition to type 2 diabetes to develop the disease decades earlier than those without Hepatitis C.

When were you diagnosed?

I was diagnosed with type 2 diabetes in January 1999 ... almost 12 years ago.

What’s your current blood sugar?

My current blood sugar is 96. (Yeah!)

What kind of meter do you use?

I LOVE the Bayer Contour USB meter! I recently switched to this meter because it is compact and easy to use: no coding of the test strips, small blood sample size and it connects via the USB port on my computer so I can download and analyze my results.

How many times a day do you test your blood sugar?

I test about 3 times a day. I always test every morning when I get up. I test after one or two of my meals daily to check a postprandial reading. I occasionally test before I go to bed. I also test when I am not feeling quite right. When I start a new treatment or I am sick, I test more often to monitor my blood sugar more closely.

What’s a “high” number for you?

1) Any fasting blood sugar over 140 and 2) any blood sugar over 180 two hours after a meal is high for me.

What do you consider “low”?

While 70 is technically not low, I don't feel very good when my blood sugar gets this low. I think the lowest reading I ever had was a 60.

What’s your favorite low blood sugar treatment?

I like the orange-flavored Dex4 fasting acting glucose tablets. Sure, I could eat candy or drink a regular Coke, but these tablets work fast and are easy to carry in my purse. Since I only use them for low blood sugar, I don't have to worry about being out of them when I really need them because I used them as a snack.

Describe your dream endocrinologist.

My dream endocrinologist is my doctor, Dr. Anne Peters. What make her so great is that she listens to me and understands how complicated my health is. Since she is a top expert in diabetology, she knows all about the medications in the pipeline and won't hesitate to switch me over to something new if it will help me manage my diabetes better.

What’s your biggest diabetes achievement?

Getting my blood sugar under tight control, which I have learned is the combination of the right medication, smart and balanced eating and exercise. With my chronic pain and chronic fatigue, the exercise component of this equation has become much more difficult in the past several years and I have come to rely on medications more.

What’s your biggest diabetes-related fear?

Developing complications, like eye, kidney or nerve damage or having a heart attack or stroke.

Who’s on your support team?

My endocrinologist plus the diabetes educator and nutritionist in her office, my primary care doctor and my husband make up my diabetes support team.

Do you think there will be a cure in your lifetime?

I'm not sure there will be a "cure" for type 2 diabetes.

There is a genetic component to the diagnosis, but I don't see there being a gene-based treatment for it any time soon.

I think that better prevention efforts that focus on identifying people at risk and getting them to eat better and exercise more are the key to combating type 2 diabetes. It would greatly help if we could create global norms about healthy eating and make fast food = healthy food.

What is a “cure” to you?

No more death and disability because of type 2 diabetes.

The most annoying thing people say to you about your diabetes is…

People make assumptions about what I can and can't eat when I say I am diabetic. What I try to teach them is that I can eat just about anything, as long as I balance my meals between fats, proteins and carbohydrates. So yes, I can eat something with sugar in it.

What is the most common misconception about diabetes?

I think the biggest myth is that eating sugar causes diabetes.

If you could say one thing (or three) to your pancreas, what would it be?

I'm sorry you have to work so hard because my muscles are so insulin resistant. I appreciate all your efforts to help me get back into blood sugar balance. Please don't give out on me!


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Monday, October 18, 2010

Question of the Week: How Do You Manage Sick on Top of Chronic?

Poster encouraging citizens to "Consult y...Image via Wikipedia
A lot of what I write about is inspired by my day-to-day life with chronic illness. So since I have spent the last 16 hours bellyaching--literally, because of a stomach virus--I thought it was time to talk about how I manage sick on top of chronic. You know, how I deal with the occasional to frequent stomach viruses, colds, influenza and other acute and self-limiting illnesses that everyone gets.

Plan B

While most healthy people seems to be able to soldier on when they get sick, for me catching a cold or stomach bug means implementing Plan B. This includes:
  1. Canceling out-of-the-house trips
  2. Enlisting my support system's help
  3. Scheduling tons and tons of extra rest
  4. Using a grocery delivery service like Yummy.com to deliver sick day staples
  5. Going to, or at least seriously considering, a trip to the doctor
  6. Cutting back on my daily activities

Patience


I also know that I am going to have to be patient while I battle a viral illness. In the past, it has taken me up to two weeks to get over a simple common cold. Then I have to anticipate the post-illness flare-up of my fibromyalgia pain and chronic fatigue symptoms. Which means returning to my normal baseline from a common cold can take 4 to 6 weeks total.

Prevention

In light of the major changes a cold or flu brings, I have spent some time research preventive measures that I can take to avoid getting sick. I am diligent about washing my hands and avoiding touching my face with my hands, especially when I am out in public. Certainly spending most of my time at home has cut down on my exposure to viral illnesses. Well, that is until my husband brings something home and gets sick himself...

When I was first diagnosed with diabetes in 1999, I got the pneumonia vaccination. I also used to get an annual flu shot up until 2008, when the shot that year provoked a massive migraine headache. Since then, after talking to my doctor about it, I have decided to skip the flu shot.

One positive change I have noticed is the result of taking a daily Vitamin D supplement after being diagnosed with a low Vitamin D level. I've definitely seen a decrease in the number of viral infections I get since my levels have returned to the normal range. When I do get sick, my symptoms don't seem to last as long. Apparently there is scientific research to back up the cold and flu prevention power of Vitamin D.

So What Do You Do?

I'd love to hear about your sick day Plan B and what prevention measures you take to avoid colds and the flu. Please leave a comment here or head over to the Oh My Aches and Pains Facebook page and join the discussion there.



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Wednesday, October 13, 2010

The 'Facing Your Fears' Edition of the Patients for a Moment Blog Carnival

Sam close up by Sammylee Welcome to the Face Your Fears edition of the Patients for a Moment blog carnival. This time patient bloggers were challenged to write about their fears: what they are, how they face them and what they do to overcome them. The results are, in a word, fantastic. Not only are there plenty of tips, tricks and strategies shared in this collection of 14 posts, there are wonderfully encouraging and reassuring examples of how people living with illness are successfully facing all sort of challenges that life is throwing their way.

The Really Big Fears

In her post Fear, Amanda recounts her journey with a chronic and progressive liver disease that resulted in her liver transplant on August 31, 2010. She makes a very compelling case for changing how we think about the uncertainties in our lives. Read her encouraging and heartwarming story at Amanda's Journey.

Joanna is kind of enough to share a lot of things with us about her fight against thyroid cancer, including her method for fighting her fears. Now she is in control! Get the details when you visit her post Life Redefined: Unlearning Fear over at Dear Thyroid.

Lauren calls her latest hospitalization a "veering off the road and into the dark unknown." And it has been one scary ride! How she faces the fear entangled with a new diagnosis turns out to be a lesson for us all, as you will discover in Myasthenia Gravis: A New Diagnosis Knocks Me From My Path at her blog Novel Patient.

Questions and Answers

Embrace that your worst fears about your health have just come true? Don't be taken aback by this bold question posed to us by SR at How Can I Explain It to You? The Life of a Grad Student with Lupus. Read the post Sunday Breakfast Club: Worst fear? Check. and benefit from the words of wisdom she provides.

You have to admire Aviva's honesty and candor when she talks about the three things that scare her the most in Things That Go Bump in the Night. This Sick Momma also shares her coping strategies, which include taking things one minute, one hour and one day at a time.

"Can you believe that she has Fibromyalgia?" Rosemary Lee thinks fighting the disbelief she faces from her friends and family makes it harder for her to face her own fear about living with chronic illness. Get the whole story in Fear and Loathing in Las Vegas over at her blog Seeking Equilibrium.

In just a short year and a half, Annie has made some extraordinary progress in her battle against her fears. Sharing her advice, you can just feel her building strength, courage and winning attitude. Read What Am I Afraid Of? Almost Everything! at It's Time to Get Over How Fragile You Are and see how Fragile Annie is coping with her physical and mental illnesses.

Humor and Insight

It is worth a trip over to visit Rachael at Glass of Win just to see the humorous cartoon she uses to illustrate the first of the four fears she discussed in PFAM: Frightfully Fearful. We can relate to her discussion about "medical upkeep" and hope the new health care reform law will address this important issue.

Leave it to witty Nessie at lipstick, perfume and too many pills to inspire our fight against fear with, among other things, a quote from a famous science fiction novel. Read this quote and all the other useful and uplifting insights about fear she uncovers in litany against fear.

Do you try to sweep your fears under the rug, only to have them pop back out because you've stuff too many of them under there? Boy can Jamie, the Chronic Migraine Warrior, relate. She share four tips on how to cope and would like you to add to her list with your comments. Check out Fear in the Life of a Chronic Migraineur.

Crying by the pool might not be cute, but it was just the thing ChronicBabe Jenni needed to do. In that moment, she realized she needed to face the fears that were holding her back from the life she wanted to be living. She showing us all we can have the life we want too, despite chronic illness, in her post It's Time for Some Big Changes at ChronicBabe HQ.

The Every Day Fears

Sure, she's had cancer. But it was all the little things Selena here at Oh My Aches and Pains! had to do to restart her life after cancer treatment that scared her the most. In her post Nothing to Fear, she describes how she felt the fear and began to live her life once again.

Face life....one fear at a time. at it's no more in my head is a simple but elegant explanation of how chronic illness can transform ordinary things like taking a walk alone and or saying no into everyday fears. Shweta tells us about a time when illness gave her nothing to look forward to, so she decided to reframe her fears into challenges and in the process created a new element of excitement in her life.

Sometimes it's the little reminders of your chronic illness that cause the most fear, like weigh gain, hair loss and pudgy fingers. So Phylor decided to try to the "light of day" approach with her post fears, phobias, philosophizing, and PFAM at Phylor's Blog to see if she could move beyond her self-described phobias.


So did you get inspired and motivated reading all these great posts to face your own fears too? We hope so!

Thank you to all the patient bloggers who submitted their posts for consideration. Thanks to Leslie who manages this blog carnival and to the carnival founder Duncan Cross. We had a great time here at Oh My Aches and Pains! hosting once again and look forward to the next time.

We are please to announce that Rachael of Glass of Win is hosting the next edition on October 27, 2010. If you'd like to participate, please visit the Patients for a Moment website for more information, including submission guidelines and information on how you can host PFAM on your blog too.


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Tuesday, October 12, 2010

Nothing to Fear

Maria Yakunchikova "Fear" 1893-95Image via Wikipedia
It's weird to think that I have lived a life full of illnesses and health problems that other people fear.

Living this kind of life, I have come to equate the word fear with the words decision and risk. You see, when things get really scary, it usually means that I have a decision to make or a risk I must consider taking. Somehow I have always found the courage to make all those tough decisions and take those imposing risks.

Perhaps it is because, before my life with illness began at 22, I was already well on my way to developing the skill of stepping out of my comfort zone and taking risks.


I moved out of my parents house at 18.

I figured out how to go to college, work and support myself all at the same time.

Living in the dorms my first two years of college, surrounded by new people, I tried lots of new things: music, points-of-view, food, clothes, perspectives, cultures and experiences.

I asked boys out on dates instead of waiting around for them to ask me.

By 22, I had made lots of decisions and lots of mistakes, many of which provided valuable lessons.

Some might say that I was courageous in the face of fear because I was diagnosed with cancer and went through eight months of chemotherapy to beat it. Perhaps I was, but I don't remember it that way. Because once I heard the word cancer and the path of treatment was laid before me, I knew I had no choice but to go in that direction.

It wasn't until after my cancer treatment that I truly faced my fears. And there were so many things to be fearful of:


I was scared when I returned to my college studies, knowing that all my friends had graduated and moved on without me.

I was scared about living a life with viral hepatitis, knowing that future health problems might be lurking around the corner.

I was scared that boys wouldn't find me attractive any more, since my cancer treatment made me unable to have children.

I was scared that being a cancer survivor would make it harder to make new friends to replace all the ones that I lost during my cancer experience.

I was scared about spending the next five years waiting to find out if my cancer would be cured or if it would return.

Looking back, I see the courage it took to start my life over again after I had cancer. I see how many decisions I made and risks I took to overcome my fears. Most of all, I see how confronting my fears and taking these risks paid off.

Here now today, I acknowledge that these past six years of living with chronic, disabling illnesses have been a new and difficult chapter in my life. There have been many scary moments, full of fears about what impact chronic illness would have on my life and how I would have to change and adapt to my new circumstances. Once again, there have been many decisions to make and risks to take.

Through it all, I have been constantly amazed at how things seem to work themselves out. The more I deal with life and it's uncertainties, the more I realize that there is nothing to fear. There is nothing to fear because, in the end, I will be O.K. As long as I do my part, by taking risks and making decisions, the Universe will take care of me.

I just need to keep feeling the fear and living my life anyway.


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Monday, October 11, 2010

Question of the Week: Where Do You Find New Friends?

The Tortoise and the Hare, illustrated by Milo...Image via Wikipedia
This weekend reminded me, once again, that it's pretty hard to get together with your healthy friends when you live a mostly homebound life because chronic illness.

I've talked before about how my life resembles aspects of the fable The Tortoise and the Hare.

Once again, it hits home for me about how chronic illness has transformed me from a hare into a tortoise. In the fable, the tortoise wins the race. But in real life, I am the loser. My friends are still all hares and they are moving fast. I can't keep up, which means I keep missing out on all the fun.

I'm missing out because:
  • I physically can't drive in traffic 30 to 45 minutes each way to meet up with my friends
  • I'm broke because I live on Social Security Disability
  • I don't do well in the crowded, noisy places where all the fun is at
  • I need to be sitting down all the time--no standing, dancing, walking, bowling, etc.
  • even when I really push myself, I can't last more than a few hours doing any activity
So instead of being disappointed all the time when I'm not invited or plans don't work out, I started thinking maybe I should broaden my social network and befriend some people who are tortoises like me. Only, I have no idea how I would even go about doing this. I mean, where do young, hip, fun tortoises hang out?

So as I pondered this question while sitting down taking my shower, I realized that my real problem was I that I just wasn't old enough yet. Sad to say, I think the real solution to my problem is to wait until I am a senior citizen.

Think about it: there are senior centers all across the country and their sole purpose is to engage older people. These centers offer transportation, meals, activities and opportunities for socializing. When it comes to services designed to get you out of the house and into the community, senior citizens have a huge advantage over younger people living with disabilities.

Which made me sad to envision that my current, middle-aged years living with chronic, disabling conditions were going to be my lonely, homebound years.

But maybe I am wrong.

Maybe you, my readers know something I do not.

So this week I am asking you to share with me your advice on how I can meet new people who are looking for a tortoise for a friend. People who live close to me. People that I can get together with, face-to-face, and go to the movies, get a bite to eat or hang out at a quiet neighborhood coffee shop
every once in a while. People who don't mind slowing down and spending some time with a tortoise...

I am really interested in hearing what you have to say on this subject, either by leaving me a comment here or heading over to the Oh My Aches and Pains Facebook page and joining the discussion there.

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Thursday, October 7, 2010

Why You NEED to Get Your Colonoscopy Too

Stomach colon rectum diagram.Image via Wikipedia
O.K., I'm doing this today. Yeah, I'm nervous about the whole thing, from the prep to the procedure. So I am using this post to remind myself and all of you why we need to get our colonoscopies.


  1. The older you get, the greater your chances of getting colon cancer. So once you turn 50, it's time to start screening. If you are at higher risk like me, you need to start sooner. Your doctor can advise you at what age you should begin.
  2. If everyone age 50 and older completed regular screenings, 60% of colon cancer deaths could be prevented. All I can say is, 'Wow!'
  3. If colon cancer is found at an early stage, treatment often leads to a cure. That's another 'Wow!' from me.
  4. Men, women and persons from all racial and ethnic groups are at risk for developing colon cancer. Sorry, but no one is getting a pass on this one.
  5. Colon cancer is the 3rd most common cancer in men and women and is the second leading cause of cancer-related deaths.
  6. People with colon cancer don't always have symptoms. In my mother's case, she didn't develop symptoms until after the cancer spread to her liver, making it very difficult to treat.
  7. Colon cancer screening save lives. Period.


For more information, visit the Center for Disease Control and Prevention's (CDC) colorectal (colon) cancer website for prevention, screening and fact sheets. This is where I learned the facts that I shared with you in this post.

Knowing that I can prevent colon cancer through screening gives me peace of mind. In fact, I am more worried about the actual procedure than whether or not I have colon cancer. That's because I feel confident that my doctor and I are doing all we can do to prevent me from getting colon cancer in the first place. And since I am going for early screening based on my risk factors, I feel confident that if there are problems, we will be catching them at an early, treatable stage.

Thanks to everyone who has left messages of support here, as well as on Facebook and Twitter. You all are helping me get over my anxieties about doing this for the first time. I really appreciate your support! Let me know when I can return the favor...

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Wednesday, October 6, 2010

Wordless Wednesday: Getting Ready for My Colonoscopy



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Monday, October 4, 2010

Question of the Week: Have You Had Too Many Medical Tests?

A needle used for bone marrow aspiration, with...Image via Wikipedia
I've had so many medical tests, I lost count somewhere way back in the 1980's. I guesstimate I've had enough tests for several 'average person' lifetimes. So no wonder along the way I've developed a healthy fear of medical tests, which borders on mild panic and anxiety every time a medical professional decides another one is needed.

The Lowlights

During my second chemotherapy treatment for leukemia, the doctors gave me so many chemo pre-meds that I literally cannot remember an entire week of my life. I don't remember changing my underwear, going to the bathroom, eating or changing my clothes. According to my friends and family who visited me during that week in the hospital, I had lively conversations with them, of which I cannot remember a single word I uttered.

Is it any wonder I don't like being sedated?

During that same time period, I had a Hickman catheter inserted and multiple bone marrow biopsies done. Sure, they use local anesthetic to numb the parts of my body involved, but I was awake the entire time during these procedures. For the Hickman catheter, they put a box with hole cut into it over my head so I couldn't see what they were doing while they worked for about 40 minutes. For the bone marrow biopsies, I needed to lay face down on an exam table and keep still for about 10 minutes.

It is any wonder I get nervous when they want to poke and prod me in the present day?

Getting Through It

Unfortunately, medical tests and chronic illness seem to go hand-in-hand. I have come to accept that radiology scans and various procedures are needed to diagnose or rule out conditions and provide medical treatment. So despite all my traumatic medical test baggage, I've needed to figure out how to endure and survive the medical tests that my doctors and I agree to be necessary and reasonable.

My Coping Strategies

During the week before:

  1. Learn as much as I can about the procedure or test.
  2. As for anti-anxiety medications for procedures like MRIs that provoke my claustrophobia.
  3. Distract myself as much as possible with fun things to do in the days leading up to the event.
  4. If I find myself worrying about the test, I set up a 5 to 10 minute appointment with myself each day to do all my fretting. Any distressing thoughts outside that appointment are stopped and saved until my worry time.
  5. Schedule extra rest in the days leading up to the procedure, since I know my insomnia will be worse the night before my appointment.
  6. Visualize a positive outcome whenever I think about the upcoming test.
On the day of the procedure:
  1. Bring along a family member or friend. Hopefully they will be driving me to and from my appointment too.
  2. Give myself plenty of time to get to the medical facility.
  3. Repeat my mantra: 'I am good, I am fine, I'm O.K." liberally and often.
  4. Bring along my MP3 player or a book to occupy myself while sitting in the waiting room.
  5. Ask if my companion can be in the room with me during the appointment. (My husband actually sits in the MRI room and holds whatever is sticking out of the machine to keep me calm.)
  6. Breathe.

So have you had too many medical tests too? How do you cope when your doctor decided you need just one more? Share your stories and thoughts here and join the discussion on the Oh My Aches and Pains! Facebook page.


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Sunday, October 3, 2010

"Chronic illness is ___________ ."

You can play Mad Libs in bed
Let's play a game! Do you remember Mad Libs from when you were a kid?

Mad Libs

For those of you who have never played, let me explain this "world's greatest word game." You start with a page of text with words missing. Without seeing the paragraph on the page, you provide random verbs, nouns and adjectives so your partner can fill in the blanks. When the text is read back with your random contributions, the results can be hilarious. Or not.

Mad Libs, Fibro-style

Jump to one of my bad fibro-fog days and trying to communicate is like playing a wacky and warped version of Mad Libs.

My favorite nouns are (in order of preference): thing, whatchamacallit, thingamajig and whoosie-whatsit. When I'm not trying to remember what things are called, I specialize in calling objects by the wrong name. For example, I've called the vacuum cleaner a computer and asked my husband to put a trash can in the bag (that one should have been the other way around.)

For verbs, I seem to use can a lot, like 'Can you get me my thing?' and 'Can you please just help me?'

My favorite adjective, you ask? I think that might just be damn.

Honorable Mentions

There may be a few other games that describe aspects of my life with chronic illness. The ones that come to mind are:

Aggravation, Boggle, Chill Out, Clue, Don't Break the Ice, Hungry, Hungry Hippos, In a Pickle, Kismet, The Game of Life, Sleuth, Sorry!, Trouble and Win, Lose or Draw.
So Let's Play...

Chronic illness is ________ .

Here are my choices:
  1. all fun and things
  2. a big pain in the damn whatchamacallit
  3. a thingamajig you can help me with

Dear Reader, please vote for your favorite or suggest your own by leaving me a comment. I'll tally the votes and announce the phrase with the most votes on Saturday October 9th.



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Friday, October 1, 2010

October 2010: Welcome to the Big Time

Kirnu, a steel roller coaster in Linnanmäki.Image via Wikipedia
So, wow, it's November October already. That last sentence was a huge Freudian slip on my part. I understand why--I just finished looking at my calendar for this new month.

Yup, I'm pretty sure I can't wait until this month is over.

You see, I have doctors' appointments every week this month of October. Which, by the way, is a pretty doable schedule, especially since I will have Robert's help for each appointment. If they were all routine follow-ups, I'd say, 'No big deal.' Except the first two appointments this month are a big deal.

Week One

On Friday, October 8th I have my first routine colonoscopy. I am starting early because my mother died at age 61 from metastatic colon cancer. She had her first colonoscopy at 50 and everything was fine. Then she somehow she never made it back for another one at age 55...

I'll never forget April 13, 1998. It was the day after Easter and a month and a half before my wedding. Robert and I spent the previous day at my parents' home enjoying Easter dinner. She called early the next morning with abdominal pain, needing a ride to an Urgent Care appointment.

After spending several hours in the clinic, they transferred her to the Emergency room. It was there that a scan was performed and the truth revealed. At age 60, she had a large tumor in her colon that had spread to her liver. During surgery the next day, the surgeons discovered so many tumors on her liver that they only counted the largest ones. With stage 4 cancer, her prognosis was not good. She died 11 months later.

Despite my anxiety and fears about this procedure, I am determined not to let this happen to me. It's all about prevention!

Week Two

I'm going down to Orange, California on Thursday, October 14th. My destination is very close to Disneyland, but I won't be visiting Mickey Mouse. Instead, I'm getting some medical tests which might just be the medical equivalent of a roller coaster ride.

I'm visiting the University of California, Irvine Neurology clinic for a consultation in the morning regarding my dysautonomia. Then I am having autonomic testing done in the afternoon (aka the roller coaster ride.) I anticipate that this may include a tilt table test and whatever else they do to diagnose dysautonomia.

The outcome I hope for is better treatment of my dysautonomia symptoms from a doctor who is a true expert in the field.

(Why they don't have a clinic like this at UCLA, I'll never know...)

The Hard Parts

I don't like be sedated, so that part of the colonoscopy for me is anxiety-provoking. Since I have sleep apnea, I'm also concerned about what precautions the medical staff will take to ensure this doesn't complicate things. The prep for the colonoscopy seems like no fun at all and I am worried it will make me physically sick.

My biggest fear about the autonomic testing is passing out. (Yeah, I really don't like being unconscious.) I am also realistically worried that the testing will flare me up. Plus chances are I am going to be somewhat sleep deprived that day because of the time of the appointment, which will already make me more symptomatic.

Most of all, the hardest part for me about the next two weeks is overcoming my fears about the unknown.

Plan of Attack

Being a former Girl Scout, I'm taking the motto Be Prepared very seriously. So for the next two weeks, I am going to talk about how I face my fears, get ready and get through these medical appointments and procedures. Which means you can look forward to posts with lots of ideas you can try to help you cope with big time medical appointments too.

I am also going to ask you, my readers, to share your tips and tricks with me too. Comments showing your support and encouragement will be greatly appreciated too.


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