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A Yes/No Question

I thought it would be quicker to ask on social media than to try to find the information on my HMO’s clunky website, or calling and attempting to reach someone in the department directly.

I Tweeted out a basic question:

Can I schedule an x-ray?

And the text above is the response I received, a day later after sending another email through their crazy secure messaging system.

All I asked was a yes/no question.

I know HIPPA is a good thing – privacy and all that. But I spend my work life looking for answers to questions and it frustrates me when the safeguards put in place for privacy put barriers in front of getting information.

How many patients give up, once they can’t get the needed information in a medium they use? How many never bother to take the next step?

I will call or hunt around the web tomorrow, because my feet and legs hurt too much to not do something.

But I don’t like encountering barriers to getting the information I’m seeking.

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Thanks & Peace & Love

I started this when I was at the National Institutes of Health last February, and finally finished coloring the last part in today.

It was appropriate for today. I am thankful for so much of the love that is around me and am hopeful for peace, both internally and externally.

I’m going to put this up somewhere as a blazing bright reminder to find the peace and love that is everywhere.

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Chronic Illness Bloggers Holiday Giveaway #spon

Who doesn’t like holiday freebies? Lots of awesome raffle prizes are available through the Chronic Illness Bloggers Holiday Giveaway – click the graphic and choose which prize packs you want to enter for!

This giveaway is sponsored by Chronic Illness Bloggers. Prizes have been donated by the following: Alisha Nurse – https://theinvisiblef.com/; Aromafloria – http://www.aromafloria.com ; BackPainBlogUK – https://backpainbloguk.wordpress.com/ ; Bridgwater Crafts – http://www.bridgwatercrafts.com/ ; BeingFibroMom – http://www.beingfibromom.comBroken Teepee – http://brokenteepee.com/ ; Chronically Content – http://www.chronicallycontent.com ; Chronic Mom Life – http://www.chronicmomlife.com ; ColitisNinja – http://www.colitisninja.com ; The Fay Farm – http://www.thefayfarm.com ; Fed Up with Fatigue – http://www.fedupwithfatigue.com ; FibroCane – http://www.fibrocane.com ; Fresh Assist Spray – http://www.freshassistspray.com ; Gupta Programme – http://www.guptaprogramme.com/ ; HFactorWater – http://hfactorwater.com/ ; Kirsten Schulz – http://www.kirstenschultz.org/ ; Living Well Today – http://www.livingwelltoday.com ; Living Grace Blog – http://livinggraceblog.com/ ; Lupus Chick – http://LupusChick.com ; Megan Schartner – http://www.liveken.com Melissa Swanson – http://www.fibrowarriorslivinglife.com ; Mini2z – http://www.mini2z.com ; Natalie Abbott – http://www.stillicantbesilent.com ; Organic Aromas – http://www.OrganicAromas.com ; Oska Wellness – http://www.oskawellness.com ; The Pain Free Life – http://thepainfreelife.com ; Patient Playbook – http://patientsplaybook.com ; Perfectly Ambitious Blog – http://www.perfectlyambitious.com/ ; Posture Pump – http://www.posturepump.com ; ProHealth – http://www.prohealth.com ; Rebuilding Wellness – http://rebuildingwellness.com ; Strength Flexibility Health EDS – http://www.strengthflexibilityhealtheds.com ; Sylk USA – http://www.sylkUSA.com ; Theraspecs – http://www.theraspecs.com ; Vital Plan – https://vitalplan.com 

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Back brace as fashion statement

My favorite brown pants. Black v-neck. One of my favorite sweaters that I can only wear when it’s sort of chilly so it doesn’t itch but not too chilly that it’s not warm enough. And an Ace bandage back brace hidden beneath it.

That’s what I wore to work today.

And that is how I feel I live my life right now, not necessarily hiding things but just not having enough time, mental energy, willpower, who knows what to address.

I can get it together to get to work on time, have successful work days at my new and sometimes challenging job, do the volunteer commitments I have and have a bit of time for other fun things… 

But sometimes I wish I could approach everyone I see and tell them that I hurt right now and everything I’m doing is informed by that. I have no idea what that would actually get me, since I abhor unnecessary sympathy – but maybe a bit of understanding?

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The Aerochamber Bears

Since apparently only children need aerochambers with masks, I’ve been greeted with this aerochamber bear family for the last 20+ years.

I could be argumentative about it, about the infantilizing of products that can really help anyone and so on and so forth. But… I rather like these bears.

My particular favorite is the one on the bottom, with his happy wave to match his happy lungs. 

I guess slightly childish things aren’t all bad.

And to make this a totally asthma post, this is living dangerously, chronic illness style (don’t worry, I have another ready to use now!)

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The elusive cure

This is the text of my 2016 Stanford MedicineX Ignite talk.

 

An estimated one in three hundred thousand to one in a million people are born with Moebius syndrome. I am one of those ones.

The defining symptom of Moebius is facial paralysis — people with Moebius cannot fully smile, frown, move their eyebrows or move their eyes laterally, and many have limb differences and neuromuscular issues. There is currently no known cause for classic Moebius syndrome, and there is no cure beyond surgeries, therapies to alleviate the major symptoms.

Since Moebius syndrome is a rare disorder, I spend time with the rare disease community – supporting things like Rare Disease Day, GiveRare fundraising day, and assorted other dedicated days.

But sometimes I don’t feel like I belong. I’m not one of those who can hope for a cure.

A cure makes a good headline. A cure is a finite resolution. And researching cures for rare diseases can unlock clues about how to treat patients with more common diseases, which is one motivating factor why pharma companies are interested.

What I hope for is a new system that values support, relationships and learning from peer-to-peer networks the same way we value the elusive cure.

Moebius syndrome patients rely on eye medications, breathing medications, g tube and tracheostomy supplies, orthotics, dental interventions, strong prescription sunglasses since we cannot blink or squint in the sun. We definitely spend entirely too much on medical things. But we apparently aren’t exciting enough. Large pharmaceutical companies aren’t interested in providing information to patients, or donating to family conferences, or even in donating something as simple as a eye drops. Why?

Is the lack of payoff for an uncurable disorder not enough to justify supporting it?

How can we make improving quality of life – through both pharmaceutical and social interventions – as coveted as a cure? Studies have shown that social support is vital for people living with Moebius syndrome, and is life-changing for the nearly 100 people with Moebius syndrome and almost 300 family and friends who gather at our conferences.

It is often the first or only time every two years where their differences are normal. And that is invaluable.

The symptoms of Moebius syndrome can lead to tremendously awkward and sometimes offensive interactions where assumptions are made by appearance alone. A few months ago as I was toileting my service dog in my apartment’s courtyard, a man walked up to me and out of the blue asked me if I was on Section 8, because of the way I look. I was too shocked to come up with an intelligent comeback besides “no” as I hurriedly threw dog poop in the trash. Everyone with Moebius syndrome, or any visible disability, has had those moments. And they sting.

But rare isn’t so rare when there are 100 of you.

How might we value hope. support and relationships and learning the same way we value the elusive cure? Moebius syndrome can lead to these painful interactions, but it can also lead to resilience, creativity and strong connections. How might we value and prize the social connections and the power of community as much as we value a cure? How do you put a monetary worth on something unquantifiable?

Moebius syndrome will not be cured in the traditional sense. Missing cranial nerves and  skeletal anomalities cannot be solved by a pill. And that is what it is.

So how might we advocate for increased industry support for patients where – while they rely on pharmaceuticals to improve, but not change, their lives – the main change will come from within? Is a change aided peripherally but not defined by pharma interventions worth investing in?

For those of us who are living it, yes.

Instead of hope for a cure, for me and others with incurable conditions, hope is the state of mind fostered by a strong community who knows and accepts the fact that not all things in life can be cured. Hope comes through connections, resources, strength and time, instead of in a pill. But hope is as valuable as a cure.

And some memories in photo form from the weekend.

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Caffeine, Canines & Camaraderie

This is a sponsored post for Self Care Catalysts. I have been compensated through the Chronic Illness Bloggers network. All opinions remain my own and I was in now way influenced by the company.

Sometimes I majorly fail at self care. I have things to do, work to do, lots of deadlines and should-do’s in both my work life and other life (which isn’t work but certainly feels like it sometimes). But I try. So, going in order with my alliterated list (because, really, alliteration makes everything better).

Caffeine


I love my coffee. Whether it is fancy independent roasters or your run of the mill Starbucks or something else (well, nearly, I am admittedly a coffee snob!) my coffee makes me happy. It also helps me with fatigue and I swear it helps with chronic pain – or else it just makes you so buzzed it doesn’t matter as much! My morning is made by my morning, and midmorning, coffee. I’ve learned that I have to be careful, so part of my self care is to stay away from the coffee after 1 pm if I want to sleep. Because actually being able to sleep is good!

Canines


My Canine Companions for Independence service dog is s huge contributor towards my self care! He helps me conserve my pathetically low energy by opening doors, carrying things, and picking up all sorts of stuff! These are all things I can do myself but that take a tremendous amount of effort and energy. And using that energy means that I have less physical energy for other things. And honestly, nothing sucks as much as having lots of mental energy but no physical energy. That’s a recipe for self-pity. My dog, in his role just as a dog and not as a service dog, is also paramount to my mental self care! Animals are awesome in this way. And yes, an equine is crashing the canine party because that’s also important to my self-care. The physical and mental exercise I get from riding are life-changing.

Camaraderie

For me, a connection to others with chronic illnesses and disabilities, both my particular condition and others, is vital to my self care! It is reaffirming and sometimes life-changing. I get this connection in many ways – through the groups dedicated to my condition, from cross-disability groups, from my service dog group, and from conferences such as MedX which bring together people of many different backgrounds, both epatients and supporters, all interested in self care through education and empowerment and working together. The rush I get from the interactions I have with people who have experienced what I have is vital.

Having Said All This

Somehow this post makes it seem like I have everything in control with my self care. And… I don’t! I push myself, putting way too much on my plate – and then regret it! But self care and relying on what I outlined above are goals I’m always striving to achieve.

Photo: Rick Guidotti

My name is Natalie, and I ride horses. I also have Moebius syndrome.

http://www.selfcaremvmt.com facebook.com/selfcaremvmt @selfcaremvmt @selfcaremvmt

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