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Thursday, April 28, 2011

Mission 2011: Some Final Thoughts on Exercise

Two views of local Extension leaders drilling ...Image by Cornell University Library via Flickr
Yesterday I finally touched base with my best friend and learned that she is currently participating in a boot camp style exercise program. She described for me in detail what her workouts look like and how much fun she is having doing them. She admits that exercise has never really been her thing, but this whole boot camp approach has recently changed her mindset on exercise.

Then she told me how sore she was from today's workout and said, "I bet this is how you feel all the time."

I certainly appreciated her empathy, but I have to admit that her description of her current exercise program made me 1) feel like a big, fat slug and 2) realize that I live in an entirely different world than she does.

Exercise has always been a part of my life since I was a kid. I can remember dance lessons, bike riding around our local park, hiking and backpacking as a Girl Scout and years spent as a member of the local YMCA swim team. In high school, I was my mother's companion at the gym, riding my bike to meet her there and then taking aerobics classes and working out on the weight machines.

Exercise became even more important to me when I was diagnosed with type 2 diabetes in 1999. I discovered just how powerful it was in helping to maintain tight control over my blood glucose number. I also discovered the elliptical machine at the gym, which quickly became my new favorite piece of exercise equipment.

The irony has not escaped me that my entrée into life with fibromyalgia was a trip-and-fall accident that occurred while I was taking a brisk walk around the building while on a break at work.

While I have been exploring exercise in my blog posts during this past month, I have learned that I need to work on my acceptance of how fibromyalgia has completed and totally changed what exercise looks like for me now. I can more clearly see that my expectations about what I should be able to do are a complete mismatch with what my body can do. I can hear that tiny, critical voice inside my head saying, "You can only do three minutes of exercise, three time a week?!?" Yeah, that little, judgmental voice needs a reality check.

But I also understand: that voice is the part of me that misses being busy getting things done. It's really hard for me to be home all day and unable to get done all the things I need and want to do because I lack the physical energy to do so. It's those physical limitations, the by-product of living with chronic and disabling pain and fatigue 24/7/365, that are the hardest part of my current health situation.

I think spending this past month adjusting my attitude towards exercise will help me be more successful with my current endeavor to implement the exercise advice I got last month from my new neurologist.

To that end, I am pleased to report that I am slowly building up the number of reps and number of exercises I do on a daily basis from the Exercises to Help Manage Orthostatic Hyptension handout. I light of my recent diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS), I am putting together the money to purchase a recumbent bicycle, since it is now clear to me I need to engage in seated exercise. Perhaps I can get a good quality used one from a second hand exercise equipment store.

I am also practicing more patience and understanding with my body. After all, it is doing the best it can despite all my health challenges.

So you see, like my best friend, I am working on changing my mindset when it comes to exercise.








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Wednesday, April 27, 2011

My "Bust an Infertility Myth" Blog Post


Today I am participating in the Bust an Infertility Myth Blog Challenge, a National Infertility Awareness Week® blogging event sponsored by RESOLVE: The National Infertility Association.

As I've mentioned in my blog post about the Livestrong Young Adult Alliance, one of the issues facing childhood and young adult cancer survivors is infertility. The radiation and chemotherapy treatments that save so many lives unfortunately deprive many cancer survivors the opportunity to become biological parents. I know this because I am one of many cancer survivors who is unable to have children.

When I signed a consent form for my cancer treatment, it clearly stated that infertility was a common side effects of the treatment I was choosing. As much as I wanted to start a family one day, in that moment I needed to focus on treating a cancer that had a 67% chance of killing me. Back in 1988, there were no fertility preserving options available to me. Even if there were, my cancer had progressed to the point where it needed to be treated immediately and could not wait for me to preserve some of my eggs.

After I completed chemotherapy in August of 1988, I experienced premature menopause. That led to a series of consultations with several different gynecologists to talk about approaches to managing this situation. An unexpected part of those consultations was listening to advice about how I might be able to become pregnant in the future if I so desired.

Unfortunately for me, getting pregnant was the furthest thing in my mind at that time. For starters, I had been dumped by my boyfriend a month after my cancer diagnosis and didn't think that dating was going to be part of my immediate future. I was also dealing with some body image issues that were the result of the aftermath of my cancer treatment and subsequent premature menopause. Plus having just finished chemotherapy, I couldn't quite imagine wanting to subject myself to more medical procedures anytime in the near future.

When I finally found a gynecologist I felt comfortable with, I started on hormone replacement therapy (HRT). I remained on HRT for about six years until something strange happened on the day of the Northridge earthquake, January 17, 1994. In response to the earthquake, I got my period. In and of itself, that wouldn't have been very remarkable, except for the fact that I was in the wrong phase of my HRT to be getting my period. Which led to the discovery that my cycles had returned on their own and after a few months I discontinued HRT.

Which brings me to the infertility myth I am busting in this blog post: just because you are having regular periods doesn't mean you can get pregnant.

Despite full disclosure of my cancer treatment history to my gynecologist, she told me when my period returned that I could get pregnant. Because infertility has been one of the hardest things for me to accept in my life post-cancer, I grasped onto this hope and let myself believe that what she was saying to me could be true.

I became reacquainted with the truth when I was finally ready to start family building with my husband and found myself unable to get pregnant after months and months of trying. I am sure that the infertility doctors I consulted thought it was a bit strange that I was so upset with their diagnosis in light of the information I shared with them about my cancer history and treatment.

It wasn't that I was upset about being told that I was infertile; I was upset because I let myself believe for so many years that I was not.

Today I am choosing a life without children. I still wish that I could have children, however I feel that in my current situation, dealing with several chronic and disabling medical problems, it is impossible for me to be a "good enough" mother at this time. It is my hope that one day my health will get better so my husband and I can pursue adoption as our family building option.

Until then, we offer our home to a collection of homeless pets seeking "furever" homes and lavish them with the love and attention we are able to offer.

To learn more about the real truths about infertility, visit RESOLVE today.

Click here learn more about National Infertility Awareness Week®.



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Tuesday, April 26, 2011

Guest Post: YOU MATTER


Selena's note: There are some people who come into your life and you feel immediately drawn to them. Juliana is one of those people for me. She exudes warmth, vitality and love. When I heard about her project, Loving It All, I wanted to help. I offered Juliana the opportunity to guest post and share her passion with you.

YOU MATTER. You are an unrepeatable miracle. We need your piece of the puzzle to heal the world.

This is the message of Loving it All, the documentary movie I’m creating to share the story of my life post-diagnosis with life-threatening chronic illness. It is what I’ve learned in 15 years of living with lupus, fibromyalgia, IBS, scleroderma, and more. (Yes, there’s more!)

I heard the doctor outside my exam room telling his student that “we need to find out how fast it’s moving and how long she has.” At that point, my lungs—I suppose I should say “lung”—was working 38% as effectively as a normal person’s. And lung damage from scleroderma is reported to be irreversible.

I’m happy to report that the reports are wrong! My most recent Pulmonary Function Tests show my lungs functioning at 71%, which makes me able to get out of bed almost every day!

I want to share with everyone coping with chronic conditions-or facing adversity of any kind-the tools that helped me. The film’s purpose is manifold: to educate civilians about what life as a woman with chronic illness is like—how strong we are, how much we cope with, how civilians can be helpful to us; to inspire people facing adversity to create their own coping strategies that work especially for them because we all know there’s no such thing as one-size-fits-all; and to offer the coping strategies that worked for me in case there’s something in my story that will resonate with you.

Most importantly, I want you to know that YOU MATTER. When I had days weeks months years of feeling worthless and like I had nothing to give the world, I didn’t realize that just my presence, just my breathing and smiling, and just my love was enough— and more than enough. No one told me that I matter just because I’m me. I want to be sure to tell you.

So please watch and enjoy the video below. I’m especially fond of the part that compares us spoonies with Samuel L. Jackson. If you’re able to donate, please do. If I don’t raise the funds, the movie won’t happen, and the deadline is approaching.

I receive each $1 with immense gratitude. Without funding, this project will not happen.

If this project moves you but you’re not in a position to donate, please share it with your friends and friends you haven’t met yet! All together we can make a difference. WE MATTER.







PS Would you like the opportunity to guest post on Oh My Aches and Pains? Contact me with the details of what your would like to share with my readers.


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Monday, April 25, 2011

Question of the Week: How Do You Get Your Exercise?

Tandem, Bike for fourImage via Wikipedia
If you've been following along with my Mission 2011 posts on Thursdays, then you know that I have been devoting April to the topic of exercise.

Of all the self-help strategies I employ to manage my fibromyalgia symptoms, exercise is the one that presents the most challenges for me. I've talked a little about my struggles with post-exertional fatigue and shared a new approach to exercise that was shared with me at the Mayo Clinic in Arizona last month. I even wrote a pretty interesting post last week on how having fibromyalgia redefines the word exercise...because it certainly does for me!

So I've been wondering: how do you get your exercise?

--> For those of you who have figured this exercise thing out, I'd love to hear about what works for you.

--> For those of you who are struggling like me, share what hasn't worked and then tell us about what you are going to try next.

I'm a firm believer in learning from my peers, so I hope you'll take this opportunity to start a discussion either here in the comments area or over on the OMA&P! Facebook page.


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Saturday, April 23, 2011

Thank you, thank you, thank you!





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Friday, April 22, 2011

Break Cancer: My Young Adult Cancer Experience


As a 23 year cancer survivor, sometimes I am asked how I found out that I had cancer. So today I'd like to share that story with you.


The Fall of 1987

September

My September that year started out like it had for the past four years. I was returning back to my undergraduate studies at UCLA. Only this was my senior year and the pressure was on to figure out what I was going to do with the rest of my life once I graduated with my Bachelors of Science in Kinesiology.

Then I got sick with some viral infection. To be honest, I can't quite remember if it was a stomach bug or some kind of a cold. What I do remember is that I didn't quite feel fully recovered from it once most of the symptoms had resolved. I kept going back to Student Health complaining that I wasn't feeling better.

October

By Halloween I still wasn't feeling 100% better, so I sought out a referral to a good general practice doctor in the vicinity of campus. I was able to see a regular doctor because at age 22 I was still on both of my parents' health insurance policies. After listening to my symptoms, completing an examination and taking some blood, this new doctor thought I was experiencing some kind of post-viral syndrome. He also mentioned that my white blood cell count was a little on the low side, but opted for a wait-and-see treatment approach.

November

I spent the month, and the Thanksgiving holiday, staying home from classes, taking it easy, getting extra rest and following up with my new doctor.

December

With no improvement, I started feeling frustrated. So I contacted my pediatrician in the San Fernando Valley and made an appointment to see him. Then I head to Santa Monica to get my records from the doctor there and discovered that it wasn't just my white blood cell count that was low--my red blood cell count was low too.

It felt weird being the oldest patient sitting in the waiting room of my pediatrician's office reading a copy of Highlights magazine, but I trusted that my pediatrician could figure out what was wrong with me. I hadn't seen him in over four years, so we spent a little time catching up before getting down to business. When all was said and done, he wanted to wait just a little bit longer to see if my counts would come back up on their own.

So I spent the week of Christmas 1987 and the week of New Year's 1988 trying my hardest to get better.

The Winter of 1988

January

I headed back to see my pediatrician the Monday after the New Year's. More blood was taken at that appointment and I received a call a few days later with the results. I learned that instead of improving, my blood counts have gotten worse, with my white blood cell count now at 0.9. (For reference, the normal range of the white blood cell count is 4.3 to 10.8 x 109 cells per liter in international units (IU).) The next words out of my pediatrician's mouth were, "I'm setting up an appointment for you to see a hematologist here in my building for later this week."

After three months of waiting, things started happening very quickly.

I saw the hematologist on Thursday and he scheduled a bone marrow biopsy for the next day. The following Wednesday I returned for the results of my biopsy and was told that I had leukemia. I was offered the option to start treatment at the community hospital a few blocks away from the hematologist's office, but I decided I wanted to go to UCLA for a second opinion and treatment. My parents drove me from that morning appointment straight to UCLA for an afternoon appointment in the Bowyer Oncology Clinic. By 5 PM I had been admitted into the hospital.

The View from 2011

I can see today that some of the early warning signs of my cancer had been missed by the doctors treating me back in 1987. Clearly my diagnosis of leukemia was delayed; fortunately for me my diagnosis didn't come too late. I was also incredibly fortunate to have my parents' medical insurance and I truly believe that participating in a clinical trial at UCLA increased my chances for becoming a cancer survivor.

It saddens me to learn that the survival rate for young adults with cancer has remained the same over the past 30 years. Since 1988, I thought there had been numerous advances in cancer early detection and treatment. Quite frankly, I expected that my diagnosis story would have been ancient history by now, not current events. We all have heard that early detection and early treatment of cancer yields a much better prognosis. I think it's about time young adults benefited from this reality.

This is why I am asking you today to help me Break Cancer.

I dare you: leave me a comment on this blog post. Help me set a record for the "Most Comments Received on a Cancer-Related Blog Post in 24 Hours." Together let's raise awareness about the issues facing young adults diagnosed with cancer today. Together, let's Break Cancer!


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Thursday, April 21, 2011

Mission 2011: Fibromyalgia Redefines Exercise


Fibromyalgia fundamentally changes your relationship with your body.

One of the greatest losses that I deal with on an ongoing basis is my inability to do whatever I want, whenever I want. I simply don't have the energy to live the active life I used to lead.

Yet one of the great paradoxes in the current state of fibromyalgia treatment is the recommendation of regular exercise as a means to manage symptoms.

I think that what many of the people making this recommendation forget is that fibromyalgia makes each and every activity during the day into exercise. Or that chronic pain and chronic fatigue makes everything in life more difficult to do, especially when it comes to physical activities. They don't acknowledge that physical activities may need to be modified so that pain and fatigue are not aggravated or made worse. Nor do they talk about the very troublesome problem of postexertional fatigue, that very tardy message from your body telling you did way too much yesterday.

Trying to figure out the how's, what's, when's and where's of making exercise fibro-friendly can be daunting. For starters, you need to start looking at exercise in a whole different way. I mean, you can't just stroll into the gym like you could before, work out for half an hour and expect to feel okay over the next 72 hours. Exercise means something completely different when you have fibromyalgia.

So for example, if your fibromyalgia symptoms include dizziness or fluctuations in your heart rate or blood pressure, doing exercise in a standing position may not be the best choice for you. If you have problems tolerating heat, working out in a warm water pool might not be a good idea either. If you are dealing with moderate to severe fatigue, just getting to and from an exercise class might be more activity than your body can handle; between the travel and the class, you might find yourself completely wiped out.

When it comes to how much exercise and for how long, I think the adage start low and go slow perfectly applies here. Since it's so easy to overdo it and derail your exercise efforts, it really makes sense to start with just a few stretches done just a few times. Or maybe just a few minutes of walking or biking three times a week. If postexertional fatigue rears its ugly head it's a sign to cut back and try again. If you can tolerate just this little bit, then play it safe and add a tiny bit more over time: one new stretch, two more reps or one or two more minutes of cardio.

I share these thoughts with you today because I know that all too often the recommendation to exercise doesn't come with fibro-friendly instructions. My hope is that if you can remember that having fibromyalgia means having to redefine what the word exercise means, you can take that recommendation and make it work for you.

This post is for informational purposes only and doesn't take place of the advice of your health care team. (Yeah, the irony of this statement in light of the discussion above is not lost on me.)


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Wednesday, April 20, 2011

Wordless Wednesday: Phonebook + Duct Tape = Solution



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Tuesday, April 19, 2011

Mayo Clinic Follow-up: Side-tracked by Side Effects

An 80mg capsule of PropranololImage via Wikipedia
If you have been following along with my Mayo Clinic story, you know that I have been having one heck of a time with a new beta-blocker prescribed by my new neurologist.

Well, last week I finally decided to throw in the towel after I read this post over at ChronicBabe.com and realized that taking Inderal (propranolol) was causing this side-effect too. I am so glad that Jenni wrote this post and clued me in to this! I also really feel there needs to be more discussion about the sexual side-effects women experience from medications like beta-blockers and antidepressants.

I tried very diligently to connect with my new doctor and get him to prescribe the second choice beta-blocker he mentioned to me. Unfortunately he was out of town two weeks ago and then swamped catching up last week, which sort of left me in the lurch. So after consulting with my family medicine doctor back here in Los Angeles, I went back on Coreg CR, the beta-blocker I have been taking since the Fall of 2007.

There is nothing like making a change to get you really in touch with how bad things were before.

In my case, I am surprised how much better I feel off the Inderal and back on the Coreg CR. I can now clearly see that the Inderal was really making my fatigue much worse, causing several different side effects and overall making me feel sluggish and unfocused. Which is all really too bad, since my neurologist really likes this medication for controlling the symptoms of postural orthostatic tachycardia syndrome (POTS).

I am also quite amazed at myself that I actually tried to tough it out for almost a whole month taking a medication that my body really, really, really didn't like.

Personally, this positively reinforces my usual approach to medications and side-effect management. My philosophy has been that for each new medication I try, if I run into side-effects that I cannot tolerate, I stop the medication immediately.

Looking back, I wish
I would have stopped the Inderal and insisted that I needed to try something else once it caused shortness of breath and swollen ankles--both considered severe side-effect according to the handout I got from the pharmacy.

Now I know my doctor was hoping that maybe if I started on a lower dose I could get used to the medication, which seemed like a reasonable idea. Problem is, my body is pretty sensitive to medications and it pretty adamant when it doesn't like something. Like me, it is pretty stubborn and apparently doesn't change its mind when it decides it doesn't like something.

Because persistence is one of my better qualities, I will continue to follow-up with my new neurologist and get that prescription for the next beta-blocker he wants me to try.

Which means this is all "to be continued..."

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Monday, April 18, 2011

Question of the Week: Can You Help Me @BreakCancer?


Okay, so I admit that this is more of a request and less of a question this week.

I want to ask all of my readers for their help with my impromptu Break Cancer event that I have scheduled for this Friday, April 22nd.

As I mentioned at the end of my Saturday post In Focus: Livestrong Young Adult Alliance (YAA), I got inspired to participate in the Break Cancer project. This is a collaboration between the YAA and URDB World Records. I am setting out to break a record for the "Most Comments Received on a Cancer-Related Blog Posts in 24 Hours" on a post I will be writing for Friday about my experience as a young adult cancer patient.

I can't do this without your help.

I need as many people as possible to come by my blog between 12 midnight to 11:59 PM Pacific Daylight Time on Friday and leave me a comment. In return, each commenter gets the satisfaction of knowing that they are helping to raise awareness of the issues facing young adults diagnosed with cancer, which is one of the primary goals of the YAA.

Please don't feel intimidated by the thought of leaving a comment. I'm just asking you to share a few words like "Great post." or "Good job." or "Good luck setting the record." or " Way to go." or "Break cancer!" or "Hey, come over and comment on my blog now."

Plus I want to take this opportunity to remind you that I do have anonymous commenting enabled, which means you don't need to share any of your personal information to leave a comment.

So, this Friday can you help me Break Cancer?

Please feel free to share the details below with anyone else you'd think would like to participate in this event:

What: Help Selena Break Cancer with the Livestrong Young Adult Alliance
When: Friday, April 22 from 12 midnight to 11:59 PM Pacific Daylight Time
Where: Selena's blog Oh My Aches and Pains! (http://www.ohmyachesandpains.info)
How: Selena is setting out to break a record for the "Most Comments Received on a Cancer-Related Blog Posts in 24 Hours." She needs you to leave a comment on her post this Friday titled BreakCancer: My Young Adult Cancer Experience. In return for just a few minutes of your time, you'll get the satisfaction of knowing that you are helping to raise awareness of the issues facing young adults diagnosed with cancer.

You can also share this message on Twitter:

Save the Date: Fri, April 22, 2011 any time btwn 12 midnight-11:59 PM PDT. Help @SelenaMKI @BreakCancer! http://bit.ly/f0bPvw Pls RT

Let me know what you think of my Break Cancer world record attempt here or over on the OMA&P! Facebook page.

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Saturday, April 16, 2011

In Focus: Livestrong Young Adult Alliance

From time to time, I write about a lot of different nonprofit organizations here at Oh My Aches and Pains! The truth is, I have received support from many different organizations through my experiences with cancer, diabetes, hepatitis C, fibromyalgia and chronic pain. Taking the time to write about these different organizations gives me the opportunity to pay them back, raise awareness about their programs and services and invite you to get involved with them.

Today I want to talk about a committee within an organization you've all heard of: The Lance Armstrong Foundation, more commonly known as Livestrong. Specifically, I want to highlight the work of the Livestrong Young Adult Alliance.

Did you know that every year almost 70,000 young adults between the ages of 15 and 40 are diagnosed with cancer?

Did you also know that the survival rate for this age group has remained the same over the past three decades?

Boosting cancer survival rates and improving the quality of life for young adults with cancer are the dual purposes behind the work of the Livestrong Young Adult Alliance. The alliance is comprised of a coalition of organizations, like the National Collegiate Cancer Foundation, National Coalition for Cancer Survivorship and the I'm Too Young for This! Cancer Foundation, that are working to solve this problem and promote young adult cancer research. Knowing that unity is strength, together they strive to raise awareness of this problem and discover effective solutions.


Some of the conditions thought to contribute to this problem are:
  • delays in diagnosis
  • lack of health insurance coverage
  • overlooked early warning signs of cancer
  • lack of participation in cancer clinical trials

In addition, young adult cancer patients face unique challenges:
  • long-term effects from cancer treatments that need to be addressed over their lifetime
  • obstacles in reentering school or the workforce after treatment
  • health insurance coverage issues
  • infertility resulting from cancer treatments

How do I know so much about these issues?

In January, 1988 at the age of 22 I was diagnosed with leukemia, a blood cancer. After my diagnosis I faced many of the issues I have listed above, only at that time I didn't have the support and services of Livestrong to help me. It wasn't until 2006, when the UCLA-Livestrong Survivorship Center of Excellence opened its doors that I started getting help addressing all the late and long-term effects from my cancer treatment.

I wholeheartedly support the efforts of the Livestrong Young Adult Alliance and the work of The Lance Armstrong Foundation. They have been making a huge difference in my life for the past five years. I can honestly say that they are deserving of your support and your donations of time, effort and money on their behalf.

During National Young Adult Cancer Awareness Week earlier this month, April 3-9, I've learned about Break Cancer, a countrywide young adult cancer awareness project sponsored by the Livestrong Young Adult Alliance in partnership with URDB World Records. Inspired by Heidi Adams, who set a goal to receive the "Most Hugs Against Cancer" and set a world record at 575 hugs, I am setting out to break a record for the "Most Comments Received on a Cancer-Related Blog Posts in 24 Hours" on Friday, April 22 from 12 midnight to 11:59 p.m. Pacific Daylight Time. In that post, I will be writing about my experience as a young adult cancer patient.

I invite you to help me and the Livestrong Young Adult Alliance raise awareness about the issues facing young adults diagnosed with cancer. Please come back on April 22 and add your comment to my Break Cancer blog post.



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Thursday, April 14, 2011

Mission 2011: Exercises for Dysautonomia


Today I am sharing with you the exercise handout I received from my new neurologist during my visit to the Mayo Clinic in Arizona.

Strengthening my muscles is the purpose behind all the exercises below. Stronger muscles help prevent blood from pooling in my lower extremities when I stand, as well as help my body maintain a more consistent blood pressure. It is my understanding that my body's inability to compensate correctly when I stand is what causes me to get dizzy. While I have never fainted from standing up, I do get dizzy, light-headed and woozy.

Hopefully these exercise will help minimize these symptoms over time.

I have been instructed to start with the first three exercises, all done while laying down. Once I have mastered these, I am to add the rest of the exercises, one at a time, to my routine. After a month or so of doing all the exercises every day, I then will add some cardiovascular exercise, like biking or walking, starting at three minutes, three times a week.

The goal with my exercise program is to start out easy and work very slowly towards adding more exercise for longer periods of time. This is definitely not your typical exercise program, but it is a good fit for where I am currently with my multiple health problems that interfere with me being able to exercise in a more typical fashion.




You'll find this handout loaded into Google Docs, which will allow you to download and print it for your own personal use. Be sure to discuss it with your medical provider to make sure these exercises are right for you and your unique medical situation.

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Wednesday, April 13, 2011

Come join me for WEGO Health’s Webinar: Navigating Your Health Narrative!


I just signed up for an awesome webinar over at WEGO Health and I wanted to share all the details with you and encourage you to join me:

What: Navigating Your Health Narrative Webinar
Who: the Health Activist Panel includes Lisa from Brass and Ivory: Life with Multiple Sclerosis and Rheumatoid Arthritis, Erin from Healthy Unwealthy and Becoming Wise, Jenni from ChronicBabe.com, and Amanda from WEGO Health
When: Thursday April 21st 8 p.m. EST/5 p.m. PST
Where: click here to get all the details

Description: The webinar is for anyone from seasoned bloggers to blog-readers who want to start their own blog. The webinar will cover the basics of blogging and include more advanced tips and tricks for promoting posts, managing your time, and establishing your blog “voice” and how to raise awareness about your condition through blogging.

When I signed up I got a chance to submit my blogging questions to the Health Activist Panel which will be answered during the live question and answer portion of the webinar. Plus I'll get access to the archived version of the webinar so I can listen to it again in case I miss anything during the live event.

Did I mention that this event is free of charge? Or that you can participate either by using your telephone or your computer's speakers and microphone?

Free, informative and interactive -- three great reasons to join me on April 21 for the WEGO Health webinar Navigating Your Health Narrative.

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Tuesday, April 12, 2011

Mission 2011: Exercise, Exercise!

Bob McAllisterImage via Wikipedia
As I mentioned last month, the topic for my Mission 2011 posts in April is exercise.

Funny thing is, as I thought about this topic, a song about exercise from my childhood popped into my brain and stubbornly got stuck there. That led to a several day quest to find the song and then figure out a way to be able to present it here on my blog.

All I knew a few days ago was that the song began, "Exercise, exercise! Come on everybody do your exercise." What I learned from my Internet search is that this song was from a segment on the 1970s children's TV show called Wonderama. This song was sung by the show's host Bob McAllister and the children in the audience.

It took some finagling, but I finally figured out a way to capture the song using my video camera. The audio and video quality of the clip below isn't that great but I hope it's good enough to convey all the reasons why this song caught my attention when I was a kid and has been stuck in my brain ever since. My hope is that the infectious tune and upbeat nature of this little ditty will get you into the proper mood to tackle the topic of exercise this month.

Enjoy!



Exercise, exercise!
Come on everybody, do your exercise.
Exercise, exercise!
Come on everybody, do your exercise.

Jumping Jack, Jumping Jack!
Come on everybody, do the Jumping Jack.
Jumping Jack, Jumping Jack!
Come on everybody, do the Jumping Jack.

And freeze!

Exercise, exercise!
Come on everybody, do your exercise.
Exercise, exercise!
Come on everybody, do your exercise.

Hands on hips, hands on hips!
Touch your toes with your fingertips.
Hands on hips, hands on hips!
Touch your toes with your fingertips.

And freeze!

Exercise, exercise!
Come on everybody, do your exercise.
Exercise, exercise!
Come on everybody, do your exercise.

Stand up straight, shake around!
Let me see you twist your body all about.
Stand up straight, shake around!
Let me see you twist your body all about.

And freeze!

Exercise, exercise!
Come on everybody, do your exercise.
Exercise, exercise!
Come on everybody, do your exercise.

Now rest!


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Monday, April 11, 2011

Question of the Week: Side Effects--When Is Enough, Enough?

YUCK snow in MinneSNOWta[Day338]*Image by Chapendra via Flickr
It seems like I've been a little bit off my game lately and I finally figured out why last weekend. Since March 17 I've been trying a new medication, one that the neurologist I saw at Mayo Clinic Arizona highly recommended. Unfortunately for me, this medication has been giving me a lot of side effects over the past several weeks.

Too Much, Too Soon

This new medication is the beta-blocker Inderal. Having been on Coreg CR, a different kind of beta-blocker, for the last 3 1/2 years, I honestly didn't think that switching to a different beta-blocker was going to be problematic. So, after I got the prescription filled, I started right away with the 10 mg dose twice today.

Boy was that a mistake.

Within a few days, I developed shortness of breath and swelling of the ankles. I consulted the written information I was given with my prescription and discovered that these were some of the severe side effects. Of course I made this discovery over the weekend when my doctor was not available, so I decided since I had only been on the medication for three days that I should stop it.

Start Low and Go Slow

When I was finally able to connect with my doctor the following Monday, he suggested restarting the medication at a lower dose with the goal of gradually working my way up to the 10 mg dose. Since the tablets were scored, he suggested breaking them in half and starting with a 5 mg dose twice a day. Feeling a little gun shy after my crash and burn experience, I decided to start at a quarter pill twice a day, which is equivalent to 2.5 mg.

I touched base with my doctor a week later, at which time I let him know I was doing okay on 2.5 mg twice a day without side effects, but wasn't sure if that low dose was really addressing my dysautonomia symptoms. He encouraged me to try increasing the dosage up to 5 mg twice a day. So I decided to give it a try.

After about four days on the 5 mg dose I started having side effects again. This time, I developed severe dry mouth, some shortness of breath and persistent diarrhea. Once again, I realized what was going on over the weekend when I was unable to reach my doctor. So once again I decided to stop the medication until I could speak to someone in my doctor's office.

Third Time's the Charm?

I spoke with the nurse in the doctor's office last Monday who informed me that the doctor was out of town. Since she wanted to consult the doctor before changing my medication, she asked me to go back down to the 2.5 mg dose twice a day until she could do so.

To be honest I was hoping she would change the prescription so I could try something different since it seemed to me that Inderal was not a good fit. But I've been a good patient and stuck with the quarter pill twice a day all this past week.

Hopefully I will hear from the doctor today about he would like me to do moving forward.

So When Is Enough, Enough?

In contemplating my own situation, I'm curious to know how you deal with side effects. Do you stick with a medication your doctor wants you to take even if you're having a lot of side effects? Or do you give it a certain amount of time and then let your doctor know you can't tolerate the medication and don't want to take it anymore?

Please share with us your strategy in approaching this subject as well as your experiences by leaving a comment here or heading over to the Oh My Aches and Pains! Facebook page to join the conversation there.

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Friday, April 8, 2011

Nothing But the Truth

WHOLE TRUTH THIS WAYImage by miss kim marie via Flickr
Last Friday I had a little fun and wrote five stories that I shared with you in my post Would I Lie to You?

If you haven't yet read that post, I suggest you go there now so that the answers I reveal below makes some sense to you.

To recap, I asked readers to guess which of the five stories I presented was 100% the truth. What made this a difficult challenge was that all of my stories contained an element of the truth. As I mentioned last week, I got the idea for this post from my blogging friend Laurie over at HibernationNow who presented me with this challenge when she gave me The Meme-tastic Award a few weeks ago.

So without further a do, find out the truth by clicking the image below which contains all the answers. And thanks for playing my little April Fool's game.





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Thursday, April 7, 2011

I'm Turning the Other Cheek

CheekImage via Wikipedia
I'm inspired to write this post by a friend who sent me a tweet last night asking me how I was doing. She also mentioned that she hadn't seen me on Twitter much over the past week. Touched by her concern, I replied back letting her know that I was OBE: overwhelmed by events.

It seems like since I've gotten back from my trip to the Mayo Clinic in Scottsdale, Arizona, people back home here in Los Angeles have all gone a little crazy. Not that they weren't crazy before I left, just that it seems like they've taken crazy to a whole new level. Unfortunately for me, this new level of crazy involves pulling me into situations that require my attention. So I've decided to turn the other cheek.

You're probably wondering right about now, "What in the world does she mean?" So let me explain.

You see, I've been thinking about the way I've been handling the recent set of circumstances presented to me. While I am not particularly religious person, I still do want to try to be a good human being and handle things in the best way possible. Given my Catholic upbringing, I guess there's a little bit of What would Jesus do? floating around inside me. Which got me thinking about what Jesus said: If someone strikes you on the right cheek, turn to him the other also.

Concerned that maybe I hadn't responded in this manner, I decided to do a little research and figure out what this command really means. What I discovered is that you can't truly understand what this statement means unless you understand it in context. In the case of this phrase, this is what I learned:

From Wikipedia: "A literal interpretation of the passages, in which the command refers specifically to a manual strike against the side of a person's face, can be supported by reference to historical and other factors. At the time of Jesus, striking someone deemed to be of a lower class with the back of the hand was used to assert authority and dominance. If the persecuted person "turned the other cheek," the discipliner was faced with a dilemma. The left hand was used for unclean purposes, so a back-hand strike on the opposite cheek would not be performed. The other alternative would be a slap with the open hand as a challenge or to punch the person, but this was seen as a statement of equality. Thus, by turning the other cheek the persecuted was in effect demanding equality."

I admit that this discovery was an unexpected but pleasant surprise. All these years, I thought that statement meant I was to somehow tolerate mistreatment, to ignore it and not respond to it. I am comforted to know that it actually encourages me to stand up for myself and asked for better treatment in the face of injustice.

Furthermore, I am pleased to share with you that how I've chosen to respond to the recent challenges presented to me has been to demand to be treated with respect, to have my voice be heard and to have my rights be honored. Yes, I have demanded my equality in ways that have been assertive, not aggressive.

I share this with you today because I think my recent experiences hold a message for all of us living with chronic illness.

As another friend mentioned over the weekend, sometimes healthy people see those of us who are sick as weak and vulnerable and try to take advantage of us. Because living with chronic illness does sometimes mean we are less able to stand up for ourselves, we may unwittingly find ourselves in a position of being less than.

In those moments I believe we need to find the courage to stand up for ourselves and say, "It's not okay for you to treat me unjustly."

In so many ways, living with chronic illness is hard. And this is on top of how hard just trying to live life and get along with other people can be sometimes. Thank goodness for the heavenly guidance that we can take a stand and not let life, or chronic illness, beat us up or take us down. I wholeheartedly agree that sometimes the only way to get equality is to believe that we deserve it and demand it from others.

In light of what I know now, I can now always feel good about turning the other cheek.

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Wednesday, April 6, 2011

Wordless Wednesday: The Desert at the Doorstep of Mayo Clinic Arizona

cactus in bloom





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Monday, April 4, 2011

Question of the Week: How Do You Deal with Conflict?

ConflictImage by Rishi S via Flickr
Wow, last week was rough and boy am I glad that it's over.

Getting through it got me thinking about how daily life and chronic illness intertwine, intersect and together can create a really big pile of problems, hassles and obstacles to overcome. I know that life is unfair, but I still find myself wishing that having chronic illness meant I got a hall pass so I could skip all the other crap that life piles on sometimes.

Last week also got me thinking about how having chronic illness has changed the way that I look at and deal with life.

I can definitely say that for the first several years of my life with chronic illness, I took a more passive role when it came to dealing with problems. Initially, I chose to avoid stressful situations and conflicts with other people because I thought it was easier than getting all flared up.

But a few years ago I realized that this wasn't really working for me and didn't fit with who I was before I got sick. I was always the kind of girl to tackle problems head-on and wasn't afraid of a little conflict. Being more passive just made me more angry and resentful, which in turn wasn't helping me feel any better.

My challenge was figuring out how to be more assertive without making things worse for myself.

Let me tell you, this is not an easy thing to figure out when you live with fibromyalgia as your daily companion. Over the years, I've found that this neurological condition makes me more vulnerable to stresses of every kind: physical, mental and emotional. Even good stress, like being excited about an upcoming fun event, makes my nervous system go a little wonky and gets me wired and overstimulated. This often translates into a vicious cycle some of my friends on Twitter call "painsomnia." In my case, being wired causes insomnia which leads to more pain which leads to more insomnia...

How I deal with conflict now is still work in progress, but here is what I've come up with so far:
  • Deal with conflict early in the day so there is time to calm down and relax before bed.
  • Only get worked up about the really important things.
  • Learn to let go and move on when things don't work out my way.
  • Recognize that if an issue keeps coming up, it's time to deal with it.
  • Remember that I always have options, even when I can't always see what they are.
  • Know that not everybody is going to like me, but at the end of the day I need to be able to like myself.
So has living with chronic illness change the way that you deal with problems and conflict?

I'd love to hear your thoughts on this subject so please leave me a comment here or head over to the Oh My Aches and Pains! Facebook page and join the discussion there.

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Friday, April 1, 2011

Would I Lie To You?

The Great LieImage via Wikipedia
So since today is April Fool's Day, I've decided I want to have some fun.

Based on idea I got from my blogging friend Laurie over at HibernationNow, I am posting five tales about myself today. Here it the kicker: only one of them is 100% the truth. The other four have elements of truth in them, but all contain a falsehood.

So have fun guessing which story below is 100% true and leave me a comment with your best guess. I've leave this up all weekend long for you to ponder and reveal which one below is the 100% true story sometime next week .

1) Lost In The Cornfields

My aunt lives in a small town about an hour and a half south of Chicago. One summer during my college years, back in the 1980s, I decided to go and visit her. That trip was a real adventure.

What I didn't realize is that her location is right in the middle of America's corn belt. There were literally miles of of cornfields stretching out in every direction. My cousin, her daughter, was gracious enough during my visits to drive me around to visit other relatives in the area. However, on a day she needed to work, I decided to venture out on my own to visit one of my uncles who lived in a small town a few miles away.

Armed with the directions she had written down for me, I headed out the door with my aunt's car keys in hand, confident I would have no problem finding my way to my uncle' s house. Boy was I wrong. I hadn't noticed when I was sitting in the passenger's seat that street signs for the country roads I was traveling on were few and far between. Without any mountains in the distance to use as a reference point, I got a hopelessly turned around. I stopped the car and got out in an attempt to figure out where I was; I even climbed onto the car in an attempt to get a better look over all of the cornfields and wound up putting a small dent into the roof of her car.

I was about to start panicking when I saw a truck coming towards me. As it got closer I started waving my hands wildly to get the driver to stop and help me figure out where I was. Turns out, the driver was my uncle who had gotten worried when I hadn't shown up and decided to come looking for me. He led the way back to my aunt's house, which took just a few minutes to get there.

Turns out, I had been driving around in a big circle because my cousin had written down the wrong directions!

2) Miserable In The Greek Isles

The summer after I graduated from college I decided to take a solo trip to the Greek islands.

On the first leg of my trip, I joined a tour group, which departed from Athens on a seven day cruise through the Greek islands and to ports in Turkey. My roommate on the tour was a young woman from South Africa who befriended me. We hung out with several other young people from Canada who were also part of our tour group. We all had a really good time together.

After the tour, I plan to travel by myself to a group of Greek islands we had not visited while on the cruise. I took a two hour bus ride north from Athens and then jumped on a ferry for a eight-hour ride to my destination. Tired and hungry I arrived on the island at two o'clock of the morning. All I could do at that hour was secured a hotel room. After I got settled, I collapsed on the bed and fell promptly to sleep.

The next day I woke up famished, so I headed down to a café for breakfast. It was there that I realize that I had traveled so far off the beaten path that I wound up somewhere where it seems no one spoke English. I went to the local tour office, the only place where I did find someone who could speak English, and learned that this island was actually a vacation destination for the Greeks.

At first I thought to myself ,'I'll just try to make the best of this.' But after several days without someone to talk to, homesickness hit me hard and I decided to head back to Athens early.

After that experience, I decided that I never wanted to travel all alone by myself ever again.

3) An Encounter With a Cactus

My recent trip to Scottsdale, Arizona, reminded me of the trips we took as a family when me and my siblings were growing up. We actually made several trips to Arizona to visit places like the Grand Canyon, the Painted Desert, the Petrified Forest and the O.K. Corral.

Seeing the tall saguaro cactus in the Sonoran Desert out the passenger's window of the car reminded me of an incident with my brother on one of these trips. Our mother told us that if we messed with a cactus and got the spines stuck in our skin we would have to go to the hospital to have them removed. My brother, however, seemed to not be paying attention. On the hike we took on a trail through the desert, he decided to kick a piece of dead cactus that was in the middle of the trail. Since he was wearing canvas sneakers, the spines went right through the fabric and into his foot.

I saw what happened and reminded him what our mother had said. He pleaded with me not to tell her. Instead, when we got back to the campsite, he headed to the restroom to work on removing all of the spines in his foot himself. I'm pretty sure that he got them all out himself, because he never complained about having any pain or needed to fess up to what he did because his foot got infected. Which made me wonder why, in the first place, our mother warned us about the whole cactus spines and needing to go to the hospital thing. Maybe it was just a ploy on her part to keep us from messing around with those plants.

4) Our Dog Nixon

When I was a teenager, my mother took us to a hairdresser who worked out of his home in Northridge, California. I'm not sure how she found him, but he did an okay job cutting my hair. After going to see him several times, he let us know that he was moving.

Now I can't remember this hairdresser's name, but I do remember that he had several big dogs and I guess he couldn't take all of his pets along with him when he moved. That's how we came to own a German short-haired pointer named Nixon.

Now I was always a little scared around bigger dogs, having been bit by a standard poodle while selling YMCA Christmas tree tickets in our neighborhood. German short-haired pointers are what I consider a big dog. But Nixon had a pretty laid back personality and, once I got to know him, I wasn't scared at all.

The longer we owned Nixon, the more we realized he wasn't the smartest dog on the face of the planet.

One particularly funny story has to do with Nixon and our sliding glass door. That door also had a sliding screen which we kept in place when the glass door was open. The four of us kids were sitting inside the house when the glass door was open and the screen door was shut. Nixon was on the other side of the screen door on the back patio. We all decided to call Nixon at the same time and he came running full tilt towards us. We all burst out into laughter when we saw the dent a stunned but unhurt Nixon left in the screen door.

Our dad, who had to repair the screen door, was not amused.

5) Fall Down, Go Boom

My sister will never let me live down this moment and to this day she bursts into laughter whenever she remembers it, much to my chagrin.

My sister decided she wanted to go to the local library and I decided to join her. She had just gotten her driver's license so of course she wanted to drive. The trip to the library was uneventful and we spent about an hour combing the stacks for books we wanted to read during our summer vacation.

After checking out, we headed back to the car, jumped in and were ready to head home. She pulled out of the parking lot and up to the traffic light which was red. Now at this particular intersection, which crossed Ventura Blvd., it seemed like it took forever for the traffic light to change so we could go. My sister got impatient and asked me to jump out of the car and head towards the traffic light pole so I could hit the walk button and trigger the light to change. It was no big deal, so I unbuckled my seatbelt, opened the door and headed out into the crosswalk.

I was in the crosswalk almost to the curb when all of a sudden the light decided to change without any intervention from me. Seeing the light change somehow sent a signal to my brain that I needed to turn around and get back into the car, pronto. Apparently there was some confusion getting that message from my brain to my legs, which resulted in one foot turning back towards the car while the other foot continued heading towards the sidewalk. This resulted in my legs getting all twisted and me falling to the ground in the crosswalk.

Embarrassed, I dusted myself off and got myself back on my feet as quickly as I could, while in the background I could hear my sister saying, "Hurry up! Hurry up!" between her giggles. By the time I got back in the car and put my seatbelt back on, she was laughing hysterically. "Stop laughing and let's get out of here," I said to her, as I started getting really annoyed. "And by the way, how about asking if I'm okay instead of laughing at me?" I chided her.

She says there was something about how I was standing one moment and on the ground the next that just makes her laugh uncontrollably. Over the years, I've learned to just be a good sport about it.

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