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Friday, December 31, 2010

My Readers Pick My Top Ten Posts from 2010

Go 10Image via Wikipedia
Since this is the time of year to look back and take stock of the past year, I've decided to compile a list of my top ten blog posts of 2010. I've done so with a twist. You see, I let you, my readers, determine the top ten based on the number of comments you left for me on individual posts.

I have to say you all did a great job of picking these posts. I think this list really does highlight some of my best writing in 2010.

So without further ado:

10. "Just Do It"--The Cure for Fibromyalgia?
9. He Wants Me Back ... And So Do I
8. My Dream Job
7. Chronic Illness: It Sucks ... and I Deal With It
6. There is No Way I Can Travel to Italy
5. A Saving Grace for When Everything Goes Wrong
4. All Flared Up, But Feeling Fine
3. "Chronic Illness Is _________."
..and the most popular answer was --> b. a big pain in the damn whatchamacallit
2. How To Really Help Me When I Ask For Your Help
1. Dear Doctor: My Wish List of Things You Can Do For Me

Thanks again for all your comments last year. I can't tell you how much they truly encourage me to keep writing and growing as a blogger. I send you all best wishes for a happy and healthy New Year and look forward reading the feedback, suggestions and questions you leave in your comments here or on the Oh My Aches and Pains! Facebook page in 2011.

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Thursday, December 30, 2010

Video: Getting into the Energy Envelope to Prevent Flare-ups






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Wednesday, December 29, 2010

Fibromyalgia Flare-up? Here's What To Do...

Ever watch a movie or TV show where the crew of a ship detects an enemy? What does the captain do next? Why, the captain orders the crew into battle stations and sounds a red alert.

Well, at the first sign of a flare-up, I go into my own red alert mode.

For me, that means doing things like:
  • canceling trips outside the home for appointments, engagements and events
  • cutting back on all physical activities--chores, driving, shopping, arts & crafts
  • scheduling lots and lots of extra rest and sleep
  • pulling out medications and self-care items to combat increased symptoms: pain medications and patches, muscle rubs, ice packs, heating pads
  • delegating tasks and asking for extra help from my support system
  • increasing the use of pleasant distractions, like music, movies and TV shows
  • engaging in a lot of soothing and encouraging self-talk, i.e. 'You can get through this.' 'With some extra rest, you will be O.K.' 'Just take this one day at a time...'

How long I need to do these things depends of course on how intense and severe my flare-up is. Early on, my flare-ups from overdoing things were pretty epic, requiring a few weeks to overcome. My absolute worse flare-up, after my failed attempt at Hepatitis C treatment back in 2007, took about 3 months of post-flare recovery time.

I developed my personal flare-up response plan over time. It became a real priority after I learned the hard way that ignoring a flare-up and continuing to push myself had big, bad consequences--like a 7 day migraine headache that required a trip to the Emergency Room. (By the way, like knee pain, migraines are a symptom I only get when I am flared up.)

To put things into perspective, having a flare-up plan isn't just another burden and bother of living with fibromyalgia. I've come to see it as an important self-management tool, one that people living with other chronic illnesses use too. For example, people with diabetes develop a sick day plan to deal with the high blood sugar that comes with having a cold, flu or stomach bug.

Getting a heads up when I am heading into a flare-up is one of the benefits I found to tracking my symptoms and their severity. So now, if I see that my symptoms are getting worse, I can cut back and rest up right away. I've discovered that an early response to a flare-up 1) prevents the flare-up from getting worse and 2) help me recover and get back to my "normal" chronically ill self sooner.

In addition to taking steps to recover and calm my body down, I also take some time to figure out the cause behind my flare up. I do this to learn what factors contribute to my flares, some of which I shared with you yesterday in the section So what causes flare-ups? My goal is to learn what factors are under my control and then take steps to prevent these things from flaring me up again.

This is not always as easy as it sounds, both in finding the culprits and figuring out how to combat them.

For example, I recently flared-up and found myself scratching my head. I know I hadn't overdone it and the weather wasn't the culprit. Turns out, a few days later I came down with a cold. It seems the cold virus started a flare-up several days before cold symptoms appeared.

I can't always prevent myself from getting sick, so this is one flare-up culprit I need to accept as being out of my control.

Tomorrow I am going to talk about how I learned to stop the push/crash flare-up cycle and move towards living life inside my energy envelope. Plus I want to share with you my current goal of finding to the "sweet spot," my term for living well with chronic illness while also storing energy for healing.


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Tuesday, December 28, 2010

The 411 on Fibromyalgia Flare-ups

I use a lot of chronic illness terminology here on my blog. I also try to take the time to explain what it means. Today I want to talk about flare-ups: what they are, how to tell if you are having one and what causes them.

What is a flare-up?
Our friends over at Merriam-Webster.com define a flare-up as:
: a sudden outburst of or increase in the symptoms of a disease or condition
How do I know when I am having a flare-up?

It's easy to assume that more intense and troubling symptoms means that you are having a flare-up. I found that tracking my chronic illness symptoms over time helps me decide if I am having a flare-up of my fibromyalgia or if something new and different is happening.

You can do the same using a symptom log form like the one I found at the CFIDS & FM Self Help website.
Knowing my symptoms helps me decide if I need to see my doctor when I seem to be having a flare-up. (Plus if I have recently injured myself, like when my shower bench broke underneath me, I get checked out because my doctor knows that my chronic pain can mask new problems.)

For example, knee pain wasn't one of my regular fibromyalgia and chronic pain symptoms. So the first time I had intense, sleep-disrupting knee pain, I went to the doctor for a work-up. When the doctor couldn't find anything wrong with my knees that would explain my intense, new pain, we determined it was part of a fibromyalgia flare-up.

So what causes flare-ups?

Just like your symptoms, the causes of your flare-ups can be very specific to you and your condition(s.) Here is a list of some things that cause me to get flared up, which I am sharing to help you get started in thinking about what contributes to your flare-ups:
  1. Overdoing or overextending myself physically, mentally and/or emotionally.
  2. Lack of sleep or changes in sleep pattern.
  3. Prolonged time in one body position, i.e. sitting in a movie theater or driving in the car.
  4. Viral and bacterial infections, i.e. getting a cold or flu or worsening of my other health conditions.
  5. Changes in my medications and/or over-the-counter remedies, herbs and supplements. (This might be something as small as a change from one medication manufacturer to another.)
  6. Over stimulation of any sense: taste, touch, sound, sight and smell.
  7. Seasonal variations in the weather.
  8. Mental and emotional stressors like lack of support, anxiety about finances and relationship discord.
  9. Hormonal changes associate with my monthly cycle, like peri-menopause and menopause symptoms. (This does apply to men as well.)
  10. Sensitivities or allergies to certain foods or hygiene products I use, like soap, make-up, laundry detergent, etc. (Note that new sensitivities and allergies can develop.)

The key I have discovered to uncovering my flare-up triggers is observing, tracking and recording the relationship between symptoms and things like sleep, rest, activities and events by using an activity log.

I know it seems like a lot of work to figure out your symptoms and flare-ups triggers, but tomorrow I am going to discuss the payoffs for fibromyalgia scientists who take this approach to managing their fibromyalgia (and other chronic illnesses.)


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Monday, December 27, 2010

Question of the Week: Are You Flared Up?


How was your holiday weekend?

Can you believe that after weeks of preparation, Christmas Day has come and gone? So has Boxing Day. Kwanzaa just got started and New Years' Eve and Day are just five days away.

We all tend to overdo, overextend and overindulge ourselves this time of year.

My mother used to call overdoing it "burning the candle at both ends." Ironically, I think this has become the standard by which most people seem to live their lives now. After all, modern life is all about the hectic pace: getting up early and going to bed late and being hard working and productive all the waking hours in-between.

To be honest, over-doing it wasn't such a big deal for me until I started living with fibromyalgia.

Now overdoing it comes with some pretty nasty consequences, from worsening the symptoms I already have to causing the development of brand new symptoms. It's a mighty thin line between managing my symptoms and crashing and flaring up. It has taken me six long years to really start learning how to get through the holidays without winding up in bed
afterward and needing several weeks to return to my baseline level of functioning.

So I want to know Are you flared up today? and really hoping your answer is no. But don't worry if it is yes; I'll be back tomorrow and the rest of this week with some tips for getting through a flare-up and back to your routine.

Submit your answers using the PollDaddy widget embedded below and compare how you are doing with your fellow readers.





We are also taking this conversation over to Facebook later today where you can leave a comment or join the discussion at the Oh My Aches and Pains! page.

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Friday, December 24, 2010

Merry Christmas Eve to All My Readers


Merry Christmas Eve to all my readers!
Happy Kwanzaa and Boxing Day on the 26th.
(What holidays did I forget to mention?!?)

The Christmas Elf Dance



Christmas Song Medley






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Thursday, December 23, 2010

Bits and Pieces: New Discoveries

Have I Got News for YouImage via Wikipedia
So here are some of the things I've been reading and contemplating amidst my efforts to keep my Christmas preparations on track.

Coffee for Hepatitis C?

Here is a good reason to keep visiting my local Starbucks or Coffee Bean and Tea Leaf on a regular basis. Research published in the November 2010 issue of the journal Hepatology shows that regular coffee drinking, equivalent to 3 cups a day, results in slower disease progression in person who has Hepatitis C related fibrosis or cirrhosis. Of particular interest to me, drinking coffee seems to prevent the development of hepatocellular carcinoma, a.k.a. liver cancer.

I've written before how having both Hepatitis C and Type 2 diabetes puts me at increased risk for developing liver cancer and how concerned I am about this. While it seems that one large cup of coffee is my limit for caffeine for the day, this research has convinced me that cutting back on my coffee intake is probably not a wise choice for me.

Tracking My Fibromyalgia Symptoms

My friend the Fibrochondriac is looking for a hi-tech way to track her daily fibromyalgia symptoms. I remembered that I was doing this online for awhile, but then realized that I was doing this as a participant in the Fibromyalgia Wellness Project research project, which stopped collecting data in September 2010.

So I embarked on a search for either an online program or a smartphone app to do this. Unfortunately, I didn't find exactly what I was looking for. I got close with the online fibromyalgia, dysautonomia and pain trackers at MedHelp.org and the Illness Tracker app for Blackberry or iPhone.

None of these are quite what I had in mind, but I did uncover a promising lead after contacting the good folks over at WellApps. They already have a fab app for tracking GI symptoms (take note those with IBS) on Andriod, Blackberry and iPhone and have plans to create an app for fibromyalgia in 2011. They promised to keep me in the loop and I promise to share new developments with you here at OMA&P!

This concludes another edition of Bits and Pieces. I'm off to bake some homemade sugar-free gingersnaps which I am using as the crust for a no-bake ginger pumpkin pie. I hope all your holiday preparation are coming along well too and you've set aside some time to both rest and enjoy the season.

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Wednesday, December 22, 2010

Wordless Wednesday: Me and My Dad



In Memory of My Dad
Gerald E. Keerbs
12/31/1933 - 12/22/2004




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Tuesday, December 21, 2010

WE FEEL: Fibromyalgia Is a Burden

Pain by artist007
We really need more research on the impact fibromyalgia has on a person living with it.

So when I learned about the WE FEEL survey (Women Expressing Fibromyalgia's Effects on their Everyday Lives), I knew I needed to share an overview of the results here as well as spread the word about this study on Twitter.

While the results certainly don't surprise me, I think it is important for health care providers, family member and friends to read these results.

  • For many, life with fibromyalgia is burden of moderate to severe symptoms that interfere with quality of life
  • Many patients feel their symptoms are not taken seriously
  • Many patients suffer for years before they get a fibromyalgia diagnosis
  • An early diagnosis can often mean a better outcome
  • Having fibromyalgia makes it difficult to do things like household chores or work outside the home
  • Persons with fibromyalgia enjoy less quality time with family and friends
  • Positive social support and adequate coping resources are often limited
  • A combination of medical treatment and social support was found to be helpful in decreasing fibromyalgia symptoms and increasing the ability to manage day-to-day life
I also found the following results about treatment modalities interesting as well.
  • Four in ten patients (42%) who take prescription medication said that their drug therapy was successful in improving fibromyalgia symptoms
  • Exercise (46%) and alternative therapies (43%) like massage, meditation, and chiropractic care were identified as treatments that improved fibromyalgia symptoms
  • Just over half of the respondents (51%) said that lifestyle changes helped improve fibromyalgia symptoms
  • Those participants who reported receiving more support from their spouse (56%) and/or children (61%) also reported more positive benefits from treatment
The take-away message for me is that people living with fibromyalgia need more support from medical providers, family and friends. Better drug therapies that do an improved job of targeting symptoms are needed. Health insurance needs to cover proven alternative therapies and occupational therapy programs that teach lifestyle changes so that patients have a chance to obtain better symptom management.

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Monday, December 20, 2010

Question of the Week: What Are Your Favorite Holiday Activities?

blue Christmas tree make with shopping carts
So after last week's crazy--dealing with a cold and then finding myself behind on doing everything--this week I seem to be starting in a better place.

I got my Hallmark ornament shopping/collecting done (thanks to help from eBay and my mother-in-law), went grocery shopping (in the rain), got all my gifts (thanks in part to Amazon.com) and even picked up little Theodor's doggy car sickness medication (also in the rain.)

This week, it's baking, cooking and figuring out what to do with 10 pounds of ham...

Oh yeah, and staying inside most of the time, because it's going to be raining, non-stop, for at least five days in a row.

But I digress...

So now that I am done panicking about being behind and worrying about the rain, I plan to move on to celebrating the holiday season this week. That means getting focused on the things I can and like doing this time of year. Time for fibro-friendly things like:
You see, living with chronic illness doesn't have to take all the Ho, Ho, Ho! out of your holidays. A little bit of re-focusing and swapping simple, nourishing activities for busy, energy-draining ones and you can have yourself a merry little Christmas too.

So now I am wondering what your favorite, fibro-friendly holiday activities are. Leave a comment here or head over to the Oh My Aches and Pains! Facebook page and share your answer to this week's question.

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Friday, December 17, 2010

Thoughts About My Health Care in 2011

Having chronic illness changes a lot of things in my life.  For example, while other people are writing out wish lists for Santa this time of year, I am thinking about my health care and what I wish it would look like in 2011.

Ironically, Santa and my version of good health care have a lot in common: they both are great ideas that just don't exist!

To be honest, the feeling I associate most with my health care right now is disappointment.

I am disappointed that the repository of health care knowledge is so limited for my condition. I wish some really smart researcher(s) would hurry up and figured out what fibromyalgia is, how to test for it and how to treat it.

I am disappointed that the Hippocratic Oath isn't inspiring my providers to do more for me. Is it really so horrible to want my health care providers to make some kind of concerted effort to lessen my symptoms and make me feel more comfortable with the medications they do have?

I am disappointed by my health care providers' reactions towards me. Six years into this, I still feel like I have to justify why I haven't gotten better yet.

To be honest, in writing this, I realize that I've gotten to a point where I don't really expect to get much out of my health care visits anymore. In fact, during the past six years, my health care resolutions have moved me away from the medical model to the self-help model of health care:
  1. focusing on living with chronic illness instead of having my life revolve around medical appointments
  2. scaling back on the number of my medical appointments
  3. cutting out unhelpful members from my health care team
  4. conducting limited time trials of treatment modalities (like physical therapy, acupuncture, chiropractic, etc.) and stopping those that don't help
  5. limiting spending on out-of-pocket medical expenses
  6. using self-care and self-help techniques to manage the symptoms of my chronic illnesses instead of looking to health care providers to "fix" me
And yet I still wish I had the backing of a true health care team. You know, like the team Dr. House has assembled for his diagnostic medicine department at Princeton-Plainsboro Hospital. I'd love to have the attention of top medical minds, figuring out new and novel treatment approaches, initiating treatment trials and supporting me through it all...

Oops, I seem to have crossed over into fantasy land again.

For 2011, perhaps I will add these new resolutions to my existing health care strategies:
  1. Find healthy ways to deal with the stigma and lack of understanding about fibromyalgia I experience.
  2. Move beyond my disappointments over the current state of my health care.
  3. Continue to live my best life with chronic illness by trusting my body, respecting my limitations and working my self-management program.
  4. Consider interviewing for a replacement rheumatologist.

Have you given any thought to your health care resolutions for 2011? In an ideal world, what kind of health care would you be receiving? Have you given up on getting a lot from your medical providers too?

Leave a comment and share your thoughts on this important subject.




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Thursday, December 16, 2010

Ho, Ho, Oh! How Am I Not Ready for the Holidays?

Hallmark Frosty Falls 2010 magic ornament

It is clear that this year I have not followed my special event planning guide well enough, because I find myself all flustered 9 days before Christmas.

To be fair, I have been sick since last Friday, the 10th. Being sick wiped out last weekend as viable 'get it done with help from the hubs' time. Getting sick wasn't part of my holiday planning, but I think I've learned a valuable lesson here. It's no surprise that this is cold and flu season too, so I really should add a cold and flu variable to my holiday prep equation.

Leave it to the Universe to reinforce this point yesterday.

Last weekend was supposed to be the big trip to the Hallmark store to pick up my ornaments--specifically ornaments featuring penguins--something I save up for and collect every year. Well, that didn't happen. So when I went yesterday, I got a shock when many of the ones I wanted were simply out-of-stock, gone and weren't there.

Then I got a half sympathetic, half sarcastic reminder from the salesgirl when I mentioned that several of the ornaments I wanted weren't on the shelves. She said, "It's 10 days before Christmas and a lot of people came in here last weekend to buy ornaments."

'Wow, really, you don't say,' I wanted to snark back, but I just smiled instead.

I wish I could say that this was the only hiccup on the road to Ho! Ho! Ho!, but it's not. There is still grocery shopping to do, baking to get done, gifts to acquire and wrap, side-dishes to plan and prepare ... plus things to do to get the dogs ready to travel with us down the highway and next to the beach to grandma's house.

O.K., so I need to stop panicking and start formulating plan B. That means three things:
  • scale down
  • scale back
  • slash
So instead of HO! HO! HO!, I might be looking at ho, ho, ho this year.

If nothing else, living with chronic illness has taught me how to be resourceful and tackle the unexpected. It's all about being in the moment and becoming better at managing my circumstances and situation. Maybe next year I can incorporate what I've learned and try getting prepared earlier, like at the beginning of November instead of the beginning of December.

Better yet, I should take a cue from Hallmark: after all, those ornaments start showing up in stores in July!


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Wednesday, December 15, 2010

Wordless Wednesday: Gentle Kleenex

Kleenex ad

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Monday, December 13, 2010

Question of the Week: What Are Your Comforts & Joys?

hot toddy for mishaImage by skampy via Flickr
It's that time of year again. No, I'm not talking about Santa, and ho-ho-ho, and mistletoe and presents for pretty girls. I'm talking about that other season that coincides with the holidays: the cold and flu season.

Yup, I am sick with a cold. Not sure if my husband brought it home with him from work or I picked it up at the germ factory, a.k.a the doctor's office, when I went for a checkup last Tuesday. Either way, I have been sick since Friday and will probably be looking like Rudolph the Red-Nosed Reindeer for several more days.

Being sick, I've been actively trying to do things to help me feel better. A new comfort I discovered in the past two days is my take on the hot toddy. Since alcohol is a big no-no for someone with HCV, my version is sans the brandy.

Here is my recipe:
I put the tea, lemon zest and juice in a teapot and pour the hot water over the ingredients. I let it steep for about 5 minutes, then pour the tea into a cup and add honey to taste.

All this got me wondering what comforting rituals and little pastimes of joy you indulge in when you are sick with a cold or feeling down because of your chronic illness.

So this week leave a comment here or head over to the Oh My Aches and Pains! Facebook page and share the things that bring you comfort and joy. I bet we can all learn something new from each other with this assignment. I look forward to reading all your comments. Plus, if you have any other tricks to share for dealing with cold symptoms I'd love to hear those too.

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Friday, December 10, 2010

Rain, Rain Go Away ... From My CPAP Hose!

There are estimates floating around the Internet that up to 80% of people diagnosed with fibromyalgia have sleep apnea.

My Sleep Apnea Story

About a year and a half into my workup and treatment for fibromyalgia, I was sent for a sleep study. I actually had to spend two nights in the sleep lab, on two separate occasions, because I only slept two hours the first night, which was not long enough to complete the split night protocol of sleep without, then with, a CPAP machine and mask.

After two night of being monitored and a grand total of about 6 hours of sleep between the two sessions, I came away diagnosed with sleep apnea and other sleep disorders. (And by the way, I really don't snore that much and my sleep studies confirmed this.)

Getting Used to CPAP Therapy

I've talked before about living with sleep apnea in my posts The Elephant in My Bedroom and My Routine: Trying to Get a Good Night's Sleep. Needless to say, it takes a great deal of effort on my part to make sleep apnea therapy using a CPAP machine and mask comfortable and manageable. As I mentioned before, I use a whole host of tricks and tips to increase my compliance with nightly therapy.

For the most part, I can be compliant with therapy, but it's not always easy...

Rainout in My Hose and Mask

Today I want to talk about rainout, a complication of using a CPAP machine, especially in colder weather.

I have a CPAP machine with a heated humidifier. The heated humidifier increases the humidity of the air being sucked into the machine and delivered to my nose via a 6 foot tube and a mask. Without the humidifier, my nose gets really dry, irritated, stuffy and swollen on the inside. Contrary to the name, a heated humidifier doesn't make the air coming through the machine any warmer; the humidifier chamber heats distilled water inside it to release water molecules into the air.

When the air in the bedroom gets colder, like in the winter, the cold room air cause the water vapor in the air leaving the machine to condense along the tubing and mask. The result: I wake up several times a night with a puddle in my mask and water droplets up my nose. Nothing is quite as shocking and disruptive to my sleep as breathing in water!

So when a cold snap hit Southern California a few weeks ago, I had no choice but to turn my heated humidifier off. That resulted in no rainout, but lots of nasal discomfort. Unhappy with this fix, I started with an Internet search for a solution that could help with rainout.

A New Machine Solves the Problem

So it turns out that CPAP technology is evolving and now there is a machine with an integrated heated hose that virtually eliminates this problem.

The bad news for me is that my health insurance won't pay for a new and improved CPAP machine until May 2013 (that is every five years.) You see, health insurance won't pay for CPAP machine rentals. Once they pay out the equivalent of the purchase price, I own the machine. I guess it saves them money on their end, but it really doesn't help me take advantage of technology advances and machines with better compliance features.

A Universal Heated Hose

My search lead me to SleepZone in Australia, the country that is home to the inventor of the PAP machine, a precursor to the CPAP. SleepZone sells a universal heated hose that can work with my machine. Only problem is that this medical device is not FDA approved and not available for sale in the USA. (Which made me wonder, since they didn't get it FDA approved, did that open the door for American CPAP manufacturers to steal the idea and include it into newer generation machines?)

I could buy it from SleepZone in Australia, but would need to save up about $140 to do so. And since hoses don't last forever, I would need to find $280 a year in our budget to pay for this hose solution.

CPAP MacGyvering

Next I called my CPAP supply company and told them about my problem. They offered to sell me a CPAP hose cover, which I already have. Then they suggested I place an old fashioned hot water bottle, filled with hot water, in front of the CPAP air intake opening to try and heat up the incoming air. They also suggested I take my hose off the hose caddy and place as much of it as I could under the bed covers with me to keep it warm.

I tried their suggestions and they seem to work, but it's not a perfect solution. It appears I've gotten rid of rainout in colder weather, but replaced it with anxiety about rolling over onto my hose in bed, damaging it or cutting off my air supply and suffocating myself, then either waking up gasping for air or pulling my mask off in my sleep.

A Better Way?

All this research and problem-solving has me asking, 'Isn't there a way insurance can work with me to make my CPAP therapy more comfortable and easy to use? Why can't I rent a machine and swap it out when a better, more patient-friendly one becomes available?'

I know that a lot of people have problems getting used to CPAP therapy. I have heard stories of people giving up when faced with how uncomfortable it can be. I make a huge effort to try and stick with it and I am proud to say that I am about 99% compliant.

That said, I resent that my insurance company limits their assistance in helping me achieve comfortable CPAP therapy. After all, if I am compliant, I am saving them money on health care for sleep apnea complications like:
  • high blood pressure
  • heart failure
  • coronary artery disease
  • stroke
  • sleep deprivation and fatigue, which increase the risk of accidents
In the meantime, I'm really going to try and save up the money to purchase the SleepZone universal heated hose. After all, this solution is cheaper than buying a new machine out-of-pocket.



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Thursday, December 9, 2010

There Is No Way I Can Travel to Italy

Poster with train schedules for northwestern I...Image via Wikipedia
The other night a nightmare woke me up. I was dreaming about a friend I met through work many years ago. She was making an announcement to a group of family and friends that she and her husband were moving to Italy. She said, "I will remain friends with all of you, even though we are moving to Italy."

I shook my head and said, "No, you won't."

She replied, "Oh course we will. You can come and visit us in Italy any time. It really isn't that far away."

I responded, "I have all these illnesses that make traveling next to impossible. There is no way I can travel to Italy, which means we aren't going to be friends anymore."

Then I burst into tears.

At this point I woke up. After I got my bearings, my first thought was 'Why was this dream a nightmare?'

You see, this friend did make a similar promise to me several years ago when she moved from Los Angeles back to the East Coast. Predictably, we lost contact after she moved. But then a few years ago, she moved back to Los Angeles. Unfortunately, that hasn't translated into us seeing each other, even though she lives only 2 miles away from me.

I'll admit that I am a bit disappointed we haven't resumed our friendship, but I am not at all surprised. I no longer think it is a realistic goal to stay in contact with every friend I make and now accept that most of the people in my life will come and go.

Perhaps a clue to what made my dream a nightmare lies in this exclamation:

"I have all these illnesses that make traveling next to impossible. There is no way I can travel to Italy, which means we aren't going to be friends anymore."

Living with chronic illness and being disabled makes the reality of both travel to Italy and maintaining friendships a much more difficult proposition.

I think the biggest obstacle I face is how much the people around me underestimate the impact illness has on my life. They really have no idea how little energy I have and how much energy it takes for me to get together with them. Then factor in my limited ability to drive to meet up with friends and the unconventional hours I keep due to my sleep disorders and it seems my lifestyle doesn't mesh with most of my peers' schedules.

Yes, for me right now, having many close friendships is a lot like traveling to Italy: a beautiful dream, but a logistical nightmare.


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Wednesday, December 8, 2010

Wordless Wednesday: Fibro-friendly Low Altitude Holiday Decorating

a Southern California snowman







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Monday, December 6, 2010

Question of the Week: What Illness-related Surprises Bug You?

BugsImage via Wikipedia
Many of you that come here to my blog live with chronic illness(es) like I do. For each illness, there are symptoms that are expected, identified and the subject of treatment.

For example, fibromyalgia causes body-wide pain, fatigue, problems sleeping, impaired ability to recover from exercise, headaches and fibro-fog.

Over time, I have come to accept the presence of these symptoms as part of my daily life.

But then there are the weird symptoms that pop up from time to time that are related to our chronic illnesses. I've come to see them as little surprises or "unadvertised specials." With time, I've learned that some of these new symptoms are associated with flare-ups and illness exacerbation. Others, according to the medical professionals that I have seen, are logical parts of the disease spectrum, even if my fibromyalgia books, trusted online resources and doctors don't happen to mention them.

One such illness-related surprise is my occasional problems with swallowing.

This little "unadvertised special" started appearing a few year into my life with fibromyalgia. After many bouts of choking, I happened to mention this problem to my sleep specialist, who sent me for a swallowing study. What I learned from the study was that when I eat solids and liquids together, sometimes the liquid sneaks past my tongue and down my throat before I am ready to swallow. The speech therapist I was then referred to for treatment said this makes sense: fibromyalgia effects muscles and my tongue is a muscle too.

After several sessions, I learned some exercises to help reduce the problem. But every once in a while, if I am not careful, the problem can rear its ugly head, like last week when a whole mouth-full of diet Coke when down the wrong tube. (Gasp! Bleck! Cough, cough cough! Ugh!)

So this week I want to know--what illness-related surprises bug you? What unusual symptoms have you developed? What "unadvertised specials" came along with your diagnosis and what have you done to cope with and manage them?

Leave a comment here and let us know your answer to this question. Or head over to the Oh My Aches and Pains! page on Facebook to leave a comment and join in on the discussion.


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Friday, December 3, 2010

Today is the International Day of Persons with Disabilities

Emblem of the United Nations. Color is #d69d36...Image via Wikipedia
Did you know that December 3rd is the International Day of Persons with Disabilities, an annual observance (since 1981) of the Convention on the Rights of Persons with Disabilities of the United Nations?

Well, neither did I...

Now that I do know, have visited their website UN enable and read the assignment for this year's celebration, I am ready to highlight an obstacle in implementing disability-sensitive policies right here in my community.

Did you know that it is not required for stores to provide a shopping scooter for their disabled and mobility-impaired customers?

I talked to a very nice clerk at the Trader Joe's in Santa Monica, which has two shopping scooters for patrons by the way, about this issue a few months back.

He told me that one of his relatives was forced to sue their local grocery store because they refused to provide a shopping scooter after requesting one many, many times. I discussed with this clerk my frustrations with two local Trader Joe's locations: one which did not have a scooter and the other where the scooter was broken and unusable. We talked about how it would see that, under the Americans with Disabilities Act, providing a shopping scooter would be required. Much to our dismay, apparently it is not.

For those of you who visit my blog, you know I advocate using a shopping scooter to stay within your energy envelope when grocery shopping. Every time I ignore my own advice, or I am forced to forgo using a scooter because the store doesn't have one, it is being used by someone else or the one they have is broken or not charged and ready to go, I always regret it.

Grocery shopping is like running a marathon for me. Without the shopping scooter, I feel dizzy, faint and utterly exhausted by the time I reach the cash register. There have even been a few times where I have actually abandoned my shopping because I get too tired to continue.

I don't understand how a grocery or retail store can say they are implementing disabled-sensitive policies if they don't provide a way for a mobility-impaired disabled person to travel around their store. After all, we need to shop for things like groceries, clothes and personal care items too. I have made it a policy not to shop at stores that don't provide shopping scooters as a way to protest, but I am not sure this is enough to force these retailers to change.

So I'm going to ask you to do two things:
  1. The next time you are out shopping, take a moment and look to see if your favorite stores offer shopping scooters to their disabled patrons.
  2. If they do not, speak up and say something to the manager like, "I see you don't have shopping scooters for disabled persons. My (wife, sister, daughter, friend etc.) couldn't shop here without one and you are losing her business."
Making the world more inclusive of persons with disabilities requires a bit of effort from all of us. On this International Day of Persons with Disabilities, stand up and demand that they are included and can participate in all aspects of daily life, just like all the healthy people out there can.

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Thursday, December 2, 2010

100 Words: I Wonder What Would Happen....

A Letter To PonderImage via Wikipedia
When something "good" happens, we rarely question our favorable circumstances. We revel in the moment and praise our good luck, hard work or a good and merciful God.

When something "bad" happens, we often moan, cry and complain. Then we search for a reason why and blame everyone and everything in our lives for our misfortunes.

I wonder what would happen if we took away our judgements of "good" and "bad" and spent a few moments contemplating each thing that happens to us--what insights could be gained, what choices would be made, what lessons learned and what wisdom gained?




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