Vlog & FMS | Funny ‘Ish’ People Say If You Have Fibromyalgia (“You Don’t Look Ill”)

Snapshot 1 (25-Jan-15 17-36)

Over the years, I’ve heard a lot of interesting comments about fibromyalgia, whether directed at me or at others. Just for fun, I decided to put together a little video sketch about these experiences.

If you have fibromyalgia, then I hope you will connect with this video and have little laugh about our shared experiences.

If you don’t have fibromyalgia…then one of these character might be you. 😉

Enjoy!

FMS | FibroArt Monday! :)

Image from Rhonda Moss on Pinterest

Image from Rhonda Moss on Pinterest

I came across this great image on Pinterest (pinned by Rhonda Moss).

It is truly fascinating to me that there are some people who do not understand that fibromyalgia is a chronic illness, i.e. lifelong…no end in sight…you have to live with it, etc., etc.

At the same time, it is important that we, who have FMS, do not become overly frustrated with such questions.  In my opinion, they stem from feelings of helplessness.  It is not easy to watch someone close to you (or not) go through such a difficult time.  In this era of information overload and quick-fix, I think that we have come to believe that everything has to have a readily understandable explanation and an easy method of resolution–unfortunately, it is not so simple with FMS.

So, to everyone who asks such a question: No, we’re not better yet.  No, we don’t know when we will be. 🙂

FMS | MyClaimSource: Know Your Rights in Filing Insurance Claims

Image by Randy Glasbergen: http://www.glasbergen.com/

We’ve all been there, in one form or another: waiting for hours on end, listening to crappy elevator music or even being transported back to the 80s when Billy Ocean was a recognizable name, checking and rechecking the policy number on the front of our health insurance cards, and jumping with hope every time there’s that brief moment of silence, thinking that…the wait is over. It never seems to be.

It’s enough just being a person who knows the names of all the people in your local hospital, staff and patients…because you’re there on an almost daily basis, since your doctor can’t figure out your illness. It’s enough being poked, prodded, and loaded up with so many different medications every few weeks…because your doctor or your specialist our your psychiatrist doesn’t think whatever else you’re doing is working and you have to be fixed.

It’s really all enough. Then you find yourself, phone in hand, trying to explain your recent health escapade and why it isn’t your fault that you’re sick, and trying to help the person on the other end do their job and not make your life a living hell by telling you things like…you had a pre-existing condition that doesn’t qualify for medical reimbursement.

Image by Mark Anderson: Found on http://seriousstartups.com/

I’ve spent a lot of time dealing with the claim process, both in the US and in Italy. Heck, I’ve even delegated the task to my poor ex-wife (Hey, April!), because the whole thing just stressed me out…which only made me more and more sick. This is why I was so glad to have heard about MyClaimSource.com, a website devoted to helping any and everyone who has to go through the experience of filing a claim–Thanks, Hannah!

The site offers not just information but advice on how to navigate the sometimes treacherous waters of health insurance companies. Even if you don’t have to deal with filing a claim now, still check it out.

You never know when you might need the knowledge they have to provide.

Below is an excerpt from the site’s main page:

“We founded Myclaimsource.com after several frustrating experiences filing insurance claims. When we needed help and advice on how to file a claim, the information just wasn’t there. Even when the insurance agents were well-intentioned and well-trained, they still didn’t seem to have the practical, “ground level” experience we needed to answer our questions. “Am I eligible to file a claim?” “Is this covered by my policy?” “How do I get start with my claim?” “How long should I expect to wait for an answer?” On this site, we have researched every provider policy we could find to try and answer these key questions for you. We’re also aiming to provide an open forum to connect those looking to file claims with people who already have, and who may be able to offer tips and advice on claim filing with a given provider. We hope that you find this site helpful, and that it can save you time and frustration as you go about the already no-fun task of filing your insurance claim.”

Remember, there is always a new path to be found…you just have to choose to follow it.

Until Next Time,

D.

FMS | PainMaps.com: A New Nerve Pain Resource Site

Image from PainMaps: http://www.painmaps.com/

If you are like me, then living in a world of pain is just part of the package of your existence.  Pain is pain, no matter how it manifests or what it is labeled: Fibromyalgia (FMS), Chronic Fatigue Syndrome (CFIDS), Multiple Sclerosis (MS), Rheumatoid Arthritis (RA), Irritable Bowel Syndrome (IBS), Osteoarthritis, Neuropathic Pain, and Complex Regional Pain Syndrome (CRPS) as well as many others on the ever-growing list of syndromes and disorders.

I know first-hand that living with an invisible illness, which chronic pain of is, can mean being disregarded, misunderstood, or even blatantly being called a liar or crazy or whatever else makes someone else feel better for not being able or knowing how to help. This is one of the reasons why I shifted my blog’s focus to discussing living with FMS, because I understood that there were others going through similar experiences.

We, who are living with pain, need more community as well as resource outlets. This is why I was so glad when I received a message from Jessica Mendes, the founder of PainMaps.com, a resource site dedicated to providing resources for those who experience and those who want to understand chronic pain.

Mendes, who is a ghostwriter and intuitive translator, has been living with CRPS for many years, and began PainMaps as a way of providing outreach with an alternative touch; it’s about allowing ourselves to rethink how see, understand, approach, and care for pain, particularly (but not exclusively) in regards to CRPS, which is also known as Reflex Sympathetic Dystrophy (RSD).  It is a collaborative site that invites contributions for all those who would care to share their experiences and knowledge.

Harkening back to my Boston days, I’d have to say that I am wicked excited about this site, and hope you will be as well.

 Let’s build more community by venturing new paths! Visit PainMaps.com!

Until Next Time,

D.

FMS | Yoga in Bed & ATR Challenge Update!

I have been a seeker and I still am, but I stopped asking the books and the stars. I started listening to the teaching of my Soul. ~ by Rumi 

Today, the yoga mat looks too far away–to be honest, for two days I denied the existence of my mat…What mat?–and I don’t know that I feel like excessive movement is an option for me today, much like yesterday and the day before that.

Still, I am into opposite action, so I unroll the mat.  Like the walls and most everything else in my room, the mat is  pink, a nice loving colour, and I need some unconditional love right about now.

Fun fact: I’ve practiced yoga since the age of 3

I take a moment just to be in tadasana, listening to and regulating my breathing while centering my core.  Today, given my level of pain and fatigue, I will only do a modified Surya Namaskara or Sun Salutation–slowly.

—-

 

So, Why Yoga? And How Does FMS Fit into All of This?  

As I’ve mentioned in an earlier post, yoga is extremely useful for people who suffer from chronic illnesses, which would include fibromyalgia.

Just search online for yoga and fibromyalgia and you will see the many sites that have dedicated a page or two to discuss the benefits of yoga.  One of the first is a 2010 article by WebMD that discusses a study done on yoga and women with fibromyalgia.  Here is an excerpt:

Women with fibromyalgia can reduce symptoms of the disease and improve their function by practicing the mind-body techniques of yoga, a new study says.

Researchers in Oregon who enrolled 53 women aged 21 or older for the study say that women who participated in a “Yoga of Awareness” health program showed significantly greater improvement infibromyalgia symptoms

Women in the “Yoga of Awareness” class participated for eight weeks in a program of instruction and exercise.

Classes included 40 minutes of gentle stretching poses, 25 minutes of meditation, 10 minutes of breathing techniques, 20 minutes of teaching presentations on using yoga principles for coping, and 25 minutes of group discussions, in which participants talked about practicing yoga in their homes.

So, What Can You Do?

Well, I always believe in meeting yourself where you are.

  • Locate and Assess your level of pain.  What and how much you can do depends upon your understanding of where and how severe your pain is.
  • Ask yourself lots of  questions, like “Can I  leave the house? Can I get out of bed?”
  • Depending on your answer, use the yoga resource that is most beneficial to you.  If you can go to a recommended class, then go.  If you cannot, YouTube and Amazon.com could serve as potential resources–of course, use your own judgement to decide what practice is safest for you to do.    

 

Below is an example of a resource that may be useful for you if you are experiencing low mobility, i.e. getting out of bed is not an option.  It is the Yoga in Bed Morning Stretch Series; there are 6 videos durations ranging between 6-11 minutes.

Good luck!

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ATR Challenge Update: Days 12 & 13

Wow, it continues! 🙂  Yesterday, I was unable to do much of anything, but I think I have already made up for it today.

So, What is right in my life?

Increasing Self-Love |Improving Self-Efficacy | Believing in Self-Worth

Connecting with the New| Reconnecting with the Old | Externalizing Love

Extending Help | Breathing Sunshine | Sleeping to Rain

Watching Cartoons | Laughing with my Child-Self | Laughing with my Pain

Laughing with my Hope | Laughing with my Sincerity | Laughing with my Life

Discovering Happiness | Enjoying Happiness | Accepting Sadness

Comforting Anger | Welcoming Mindfulness | Welcoming Internal Peace

Welcoming solitude | Welcoming togetherness | Welcoming Simplicity in

Everyone | Everything.

—-

In essence, it’s all good, because I believe and know it is–even if I’m stuck in bed. 😉

Until Next Time,

D.

Many, Many Thanks to My New Followers!

It’s one of those hazy Roman September mornings: the kind that isn’t so hot that you feel like your only option is to remain indoors, fixed permanently in your bed or under your shower.  Still, it is the kind that makes you a bit lazy about getting up or even bothering with finding mental clarity.

Rome, on these kinds of days, becomes a centrifugal blend of noises: the distinct songs of cicadas, the cobblestone scraping of straw brooms, the random knock of a hammer, the friendly greetings of neighbours, the midday ring of the church bells and the frustrated blares of traffic.  It’s that kind of morning.

Leaves stand still, birds have gone incognito, laundry dries on clotheslines, and there isn’t a soul in sight–even if voices can be heard in between the sadness of moving sirens.

I’ve woken–sort of–to this kind of day: depleted of energy and bogged down in thoughts.

Go through the routine: meditate, stretch (on bed, too tired to stand), effectively putz around room and find: necessary papers, missing perfume bottle, a collection of hairpins, and worn out fortunes from the local Japanese/Chinese restaurant that has yet to reopen since the start of summer and is “Chiuso per Ferie,” feel pleased that the room has been swept, books have been stacked, and mind has woken just a bit more.

I take a look at my computer: glance at Facebook, post something personal and then professional; think about email and decide to avoid it for now; visit school/work blog and then personal, and find myself at this moment of…

Gratitude.

Thank you to my new followers for taking a chance on supporting my blog.  Thank you to my old followers for your continued support.  Thank you to my visitors for acknowledging my presence.

All of you have made this hazy day much less hazy–

You let me know that I continue to take the right steps on my path.

Until Next Time,

D.

P.S.

Interested in the Gratitude Journal in the image above?

Visit Rosetta Thurman’s Happy Black Woman for more details.

P.P.S.

ATR Challenge Day 10: Getting up & Getting Grateful! Thanks! 😀

 

FMS | Was it Chickenpox? ( Article: Is Herpes Virus Connected to Fibromyalgia?)

Image found: http://krnb.com/

Seriously, now.

Another balmy Saturday. Me? Glued to computer screen with fingers on auto-type while my mind wonders about what fruit will be available in the rapidly depleting fruit section of my local supermarket.

In between finger taps, the consistent yappage of my neighbour’s invisible dog, and my acknowledgements that the world isn’t so bad after all, a random thought comes to mind. Well, not really a thought, but a memory; one that I thought was pretty useless…until now [cue dramatic suspense music here].

Picture it, me at 16 and in my last semester of high school…confined to my bed because of the chickenpox.

Yes, I know.  Chickenpox is something you get as a kid, not as a teenager when everything is all about image–actually, I didn’t really care, but still–and the sight of a pimple can send even the most popular of cheerleaders into a moment of panic.

But that was soooo long ago.

It’s one of many memories I shoved far into the black hole of my mind, so much so that even when I see the resulting scars on my face, I don’t register them as having anything to do with chickenpox.  It’s my defense mechanism checkmate, especially because I am into denial and apparently amazingly good at suppression.

Let’s get back to this moment though, where I am sitting on my bed and typing this post that I’d like to be less than 300 words.

For whatever reason, the words chickenpox and fibromyalgia flashed across my mind and thus my auto-typing fingers tapped them right into Google search and hit the Enter button.

The result?

Well, it seems that a lot of people have been wondering about the relationship between chickenpox and fibromyalgia, although there doesn’t seem to be a great deal of research about it.

Still, it might help to check out the links below to understand why some are wondering:

Is Herpes Virus Connected to Fibromyalgia?

Virus Related to Fibromyalgia?