Dysautonomia Awareness Month 2016 Guest Posts. Devon. Living with Dysautonomia in Rural Kentucky.

Next up for Dysautonomia Awareness Month 2016 is Devon who lives in a rural part of Kentucky in the US. It's been really lovely to share a lot rural voices this year. Whether it be here in Australia the US or any area of the world patients living in rural areas experience a lot of similar issues. Things like distance, lack of facilities etc can make life difficult when you're not ill, but add in chronic illness and it ups the ante. Thanks for sharing your story Devon. 



My name is Devon McCormick. I am a 33 year old female preschool teacher from southern Kentucky. I am not married, but I have a boyfriend of nearly two years. I was diagnosed 6 months after we started dating.

I live in a very rural area. We have a Wal-Mart, three red lights, and a Taco Bell. I live alone, but I have a very close relationship with my family. I was diagnosed in April 2016 with hyper POTS at Vanderbilt by Dr. Biaggioni. I was misdiagnosed prior to that. I also have asthma, chronic allergies, and NCS. I have been sick since March 2015. I have had NCS since I was 5.

[Devon pre-sick is pictured above. 
The picture at the beginning is of the is Devon once month after becoming ill.]

I am a rural Southern Kentucky girl through and through. I wear my pearls to my teaching job Monday through Thursday and Friday through Saturday its school colors or UK blue. Sunday is church wear. We say ya’ll and bless your heart as both a term of endearment and insult without batting an eye. Life was good and simple.

My town was so rural that the biggest event was the new Taco Bell opening up. The nearest mall was 70 miles away. I had big dreams but never wanted to leave. I am highly educated with a bachelor’s and double master’s degrees in education. The ability to drive and leave this town gave me the ability to become educated. I was happy to teach in the elementary school I attended. I wanted to be the best at what I did.

Life was moving along well. My career was going well, my family life was fine, and I was Miss Independent. My biggest dream was to attend Vanderbilt and get my PhD. One day, I fainted. No big deal, people faint all the time. I hit the floor. Something wasn’t right. I just couldn’t seem to rally back from this. It was the first time in my life I wasn’t able to come back from something. I have always overcame every hardship and yet something as simple as standing would knock me down. I had hit the wall.

Suddenly, I couldn’t work anymore. I couldn’t drive. My mom had to move in with me. She helped me shower, dress, feed myself, and even use the bathroom. I was fainting 20-30x a day. A simple tilt test would have revealed the answer. However, it wasn’t done correctly. My grandmother worked for an amazing cardiologist who saw through the misdiagnosis and gave me some medication that helped some. Thankfully I returned to work and my mom was able to return home. I was still weak and having seizures.

Finally, I saw a top notch neurologist at Vanderbilt. He then referred me to the autonomic clinic there. The correct tilt table revealed I had hyper POTS. A simple beta blocker taken three times a day and lifestyle changes began making such dramatic differences. After 13 months, I was able to drive again. I also started getting my strength back. I always said I wanted to go to Vanderbilt. I should have been more specific and said as a student and not a patient!

It’s been 15 months since POTS entered my life. I am not the person I was before. In some ways I am better! I am stronger. Nothing will stop me. I will push on and persevere when others will quit. I teach preschool full time. It’s exhausting for a healthy person, let alone a chronically ill one. There are days when I am so tired I can barely stand and am angry and sad. I question why this happened to me. However, I will not stop!

Dysautonomia Awareness Month 2016 Guest Post Siobhan: The Need for Increased Telehealth Options for Rural Dysautonomia Patients.

Today's guest post for Dysautonomia Awareness Month 2016 comes from Siobhan. It's been great to read more submissions from rural patients this year. Living in a rural area patients face unique issues regarding access to care. As most regular readers know, like Siobhan below, I have to travel for the majority of my care as local specialists who are familiar with Dysautonomia are pretty much non-existent. Telehealth is one way we could improve this situation. I have a few doctors and allied health specialists who have been willing to conduct appointments via Skype or phone, but they are still in the minority. Having just read the stats on survival rates of rural vs metropolitan cancer patients it is clear that geography is a strong and sadly negative predictor of health across many conditions and part of that is due to access to specialist care from diagnosis to treatment. We have the technology to make the lives of rural patients easier, let's use it! (May be an area of personal passion). Thanks Siobhan for sharing your story. 


Siobhan is in her mid 20s and lives in country Victoria with her family, who act as carers. She put a promising career in psychology on hold to become a full-time sickie. She enjoys sewing and knitting to soothe her soul. You can read more from Siobhan at chronicallysiobhan.wordpress.com.

Imagine a day that begins at 4.30am. You drag yourself awake, get ready and race to the station to catch the train to the Big Smoke. After a 3.5 hr+ train ride, another obstacle awaits - navigating the city. For a rural dweller who is used to services a brief car ride away, the public transport and taxi services in the city can seem overwhelming. You somehow make it to your appointment in a far flung suburb, and wait a few hours for the privilege of spending 10 minutes with a doctor who tells you nothing you couldn’t learn over the phone. Now for the long trip back home, arriving at the station at 10.30pm. You are exhausted.

This seems like a big day for anyone. Now consider how it would feel being a person with a disability. Sounds like an impossible challenge - but this is the only option for treatment for many rural and regional patients.

Healthcare in the country is patchy at best. In my home town of Warrnambool, we do not have dermatologists, endocrinologists, and are soon to be without a single gastroenterologist. There is one private psychiatrist who charges $400 a session, no rebate available. We have only just opened a regional cancer centre in the past month. Before then, patients had to travel to Geelong and live in rented units for the full course of their treatment, which could be upwards of 6 weeks. The emotional and financial strain on such patients is immense.

For those who have complex and unusual diseases, such as dysautonomia, the situation is bleaker. Good medical care requires a relationship with a team that will understands your condition and will work to coordinate your care, from GPs to specialists, surgeons and other practitioners. But if specialised care is so far flung as to be administered hours away from your home town, the chance of a well coordinated management plan is slim. This is if you can find a GP who understands your condition at all - by want of being in the country, many GPs miss out on working and sharing knowledge with specialists who would otherwise be able to bring them up to speed on their patient’s unique medical conditions.

And as for those who cannot travel for treatment? I am such a patient, and have been for 6 years. For many of these years, I was told over and over again by doctors in town that there was no one, no one, who would consult with me over the phone. I was told I had to travel the 8 hour round trip to a specialist in Melbourne. Considering most days I couldn’t leave my bed, this was an impossible ask.

Luckily, I have found specialists in Melbourne who will consult by phone and Skype, and my health is much better for it. The prevailing attitude in the city is still that country patients should and will travel for appointments. I can only hope that medical professionals will increase their understanding of rural and regional patients and offer more flexible methods of treatment, such as Skype appointments, to meet their unique needs.

Dysautonomia Awareness Month 2016 Guest Posts: Patti Feeling Lucky. Dysautonomia over 50.

I really love this guest post from Patti for Dysautonomia Awareness Month 2016. Patti discusses her experience receiving a hyperadrenergic Postural Orthostatic Tachycardia Syndrome (hyperPOTS) in her early 50's. We don't often hear of the experience of older patients so it's lovely to be able to share her story. I particularly love the compassion she has for other patients and the way she has reframed her experience in such a positive light. Thank you for sharing your story, Patti.


Patti is a fifty-four year old woman who developed hyperadregenic POTS at the age of fifty-two. She is now housebound and reads, reads, reads. Prior to that she was a map librarian for several years. She then completed a PhD and was a lecturer in Geography. She has always been a mad keen gardener. She lives with her amazing husband and dogs in Wisconsin, USA. She's a lucky woman.

***

I feel lucky to have developed full blown POTS at the age of 52. Not that it doesn't suck becoming disabled by something you never heard of before, no matter your age.

I am lucky in that my primary care physician knew me and took me seriously from the beginning. Like many, I developed POTS after a viral illness. Mind-numbing fatigue was the symptom that occupied my mind early on. Being over fifty made him believe me but also never lead him to a diagnosis of a disorder that usually strikes young women or the later diagnosis of pre-lupus.

I am lucky that I was diagnosed in six months. I thought I had Chronic Fatigue Syndrome and read a book that indicated it was an autonomic nervous sytem dysfunction. I found a local neurologist who specializes in ANS disorders and booked an appointment. I was in the room with her for five minutes and she knew what was wrong with me! Some crazy term I couldn't pronounce. I was thrilled, well as thrilled as you can be in a hyperadregenic state. I assumed that there would be a magic pill and I would get my life back! Two years on I am still seeking that magic pill. Aren't we all?

I feel lucky to not have developed this condition as a teenager, young adult or child. I realize I have had symptoms all my life but they were subtle. Who knew my party tricks were really Ehlers-Danlos?  
I am lucky no one thought I was suffering anxiety or panic attacks. I carried the over fifty card where Drs tend to believe you. I can't imagine how difficult it is on younger people merely trying to maintain verticality and then be told it's all in their head.

I am lucky to have developed this after having worked since the age of 14. I have a long, strong work record which allows me to receive a disability check every month. I feel extremely lucky to have Drs who documented everything so that I became eligible for disability on the first application.

I am lucky to have a good Dr and fabulous Nurse Practitioner that care and take time with me.

I am lucky to have traveled most places in the world I wanted to see.

I feel lucky that I live the internet age where research is possible and others with this condition can bond.

I feel lucky this disorder is teaching me patience, something I have always lacked.

I am lucky I have good insurance and am comfortable financially.

I am beyond lucky to have an amazing, supportive husband who retired to take care of me and caring family and friends.

I still can't be vertical for more than 10 minutes but I am so much better off than so many and I am extremely lucky for that. With age comes wisdom?

Patti

Dysautonomia Awareness Month 2016 Guest Posts. Alexandria: When Weight Can Become an Impediment to Diagnosis.

Today's guest post for Dysautonomia Awareness Month 2016, is fellow Australian, Alexandria. Read about her experiences trying find a diagnosis as an overweight patient and living in a rural area and send her some love. Alexandria is definitely not alone in this issue and I hear of many patients who find themselves in the same situation. It really is an issue that needs to be spoken about and addressed. Thank you Alexandria for sharing your story.

My name is Alexandria. I am 25 and from regional Victoria, Australia. I was diagnosed with Inappropriate Sinus Tachycardia in April 2016 after suffering debilitating symptoms for the year previous. I cannot work currently, so I spend my time running a baby name website, which is a huge interest of mine, and keeps me occupied. I love spending time with my family and partner, as well as being kept company by my old dog and kitten. My hopes for the future are to find ways to spread awareness and hope for invisible illnesses.

***

Finding a diagnosis for an invisible illness can be a tough journey. We each face the struggle of finding people to believe what we’re feeling, investigate those symptoms, and refer us on to specialists. This is especially hard when you’re not considered a standard patient for the type of disorder.

Within the dysautonomia community, it’s very common for people to be of an average or slightly-below average weight. But for me, I started this journey overweight. Unfortunately, there’s a lot of bias towards obese people within the medical field, and I often found that my problems would be pinned on my weight without any questions or investigation. Discussions of seeing a blood pressure specialist due to suspicions of a low blood pressure disorder were completely off the table, with one doctor even diagnosing me as having high blood pressure without putting a cuff to my arm.

Of course, being in a rural town did not help this journey either. In a city, you have choices. If your doctor isn’t any good, there’s hundreds more around you – there are even GPs that specialise in certain areas. However, in a small country town, you are very limited; once you’ve crossed one doctor off your list, you’ve eliminated 33% of your medical options.

When I did finally get a referral to a specialist, I was very nervous that I was going to hear that it’s my weight again; that my efforts to lose it aren’t enough, and there’s nothing wrong with me apart from the fat on my body. I was so relieved when this specialist finally looked at me, and saw me as a whole person. They listened, took into account my symptoms, and ran all the tests that were required. That week, I finally got my answer: I had Inappropriate Sinus Tachycardia, a form of dysautonomia.

Although the trips to the city from my country town are long and draining, and the cost of travel and food is high, I did not regret seeing someone who would give me a chance, and see that not everyone fits the standard model of a dysautonomia patient.

I feel that it’s so important that doctors keep in mind that weight should not be the sole focus. Excess fat can certainly create a multitude of health issues, but there are also a multitude of health issues that exist that aren’t related to weight. By focusing on weight alone, my past doctors took away years of time that I could have been in treatment. Having a doctor that could see that made all the difference in my life, my treatment and even the way I saw myself. It made me feel like my symptoms were valid, and that I had a place within the dysautonomia community. I encourage all doctors to view patients as a whole, and take the time to investigate symptoms, so we can find our answers and learn to live our lives. 

Alexandria.

Dysautonomia Awareness Month 2016 Guest Posts. Sarah: Living with Dysautonomia in Rural Australia.

Today's guest post for Dysautonomia Awareness Month 2016, is fellow Australian Blogger, Sarah. Read about her experiences as a rural patient and send her some love. You can find more from Sarah over at her blog Reflections of a Bear.

Hi, I’m Sarah! Part girl, part bear. I’m 27, with a pacemaker, but still have to show ID to buy spray paint. I’ve been married to Mr Happy for nearly seven years *mushy sigh and starry eyes* I love crafty, creative, DIY stuff like cooking, sewing, painting, writing, sketching, woodworking and gardening. I love words (I even have a list of ones that I’m fond of). I play piano. I’m a Christian. I’m half Lebanese, half Australian (born in Australia). Oh…and I have dysautonomia (specifically NCS/NMH/VVS) among other illnesses.

I grew up (and still live) in a small country town in Australia. Beef farming is the main industry here: every year a whole week is set aside to celebrate it (with costumes, parades, markets, and lots of cows…and cow poo)! It’s a beautiful place: the scenery is gorgeous, the air is fresh and clean, op shops abound, and the CBD is just four blocks.

It’s the perfect place to live…unless you have dysautonomia, because a hub of medical facilities, this town is not.

I got sick with dysautonomia when I was 14. None of my local doctors had a clue what was going on with my body. So I spent my teens making more and more 6hr round trips to the city for tests and specialist visits.

What was that like? Well, imagine you’ve got the flu. You ache everywhere. You’re shivering. The light hurts your eyes. You’re nauseous. When you move, everything spins. Your heart thumps lamely. Your legs feel like concrete. A trip down the hallway to the toilet exhausts you.

Feel like going on a 6hr car trip? No? Tough. When you’re chronically ill, and live in a small town, you don’t have a choice.

Even with all those trips for testing and appointments, it still took six years before I was correctly diagnosed (and another year on top of that before we found someone who could start treating me). There’s a particular kind of despair reserved for when you’ve dragged your sick self 6hrs away for answers…but got none.

Living in a country town not only makes it harder to get diagnosed, it also restricts your access to treatments and therapies, sometimes even basic ones. Three weeks after pacemaker surgery, I ended up in my local ER with a tearing chest pain so strong that I could barely breathe. But there was only one doctor on duty, and he was busy performing emergency surgery on someone else. It took six hours for him to see me.

*squints and peers through screen*

I can see you shaking your head at me, saying, “Well, duh! Move to the city!”



I shake my head back at you, because it’s not that simple. When Mr Happy and I got married, we did discuss moving away. But here, in this small country town, we have wonderful family and Church family. The benefits gained by moving closer to specialists are easily outweighed by the loss of that support network. Plus, even if we wanted to live in the city (which we don’t!), there’s no way Mr Happy and I could afford to live there and pay for all the medications / testing / treatments we need.

Living with dysautonomia is hard, no matter where you live. But, in my experience, living in the country seems to add another layer of difficulty. I don’t have any solutions though. We’re happy here, surrounded by green paddocks. We’re part of a Church that really looks after each other. Our family is close by. Mr Happy loves his job. Those things matter too.

Sarah

Seeking Guest Posts for Dysautonomia Awareness Month: Theme this year is DIVERSITY

[Image: Background is my green velvet bird and flower pillow. Text reads: Seeking Guest Posts Dysautonomia Awareness Month Theme: DIVERSITY find details at livingwithbob.com]

Each year I try to have a different theme for Dysautonomia Awareness Month (October). I've had general open submission, a focus on Australian and New Zealand stories, and even an Arts program where patients expressed their life with Dysautonomia through everything from drawing to poetry and music ('twas rather awesome). Each of the guest posts in these themes have been brilliant and reflect an amazing and diverse group of people in our community. It's been and honour to be able to share so many voices. 

This year the focus is to be DIVERSITY. I want to focus on groups within the Dysautonomia community who are under-represented and have difficulties accessing medical care or diagnosis due to being part of these groups.  The impetus for this theme comes from the many emails and messages I receive with an ongoing theme of people feeling isolated from much of the Dysautonomia dialogue and media, which can occur for a whole host of reasons.

Information regarding Dysautonomia tends to focus primarily on POTS, younger patients, Caucasian patients, and women. It's the nature of many illness and disability groups that certain subgroups receive more attention (eg within dialogue around breast cancer there is little talk of men who, although a significantly smaller percentage, can also develop breast cancer and such a diagnosis comes with a whole host of issues specific to men), not through ill intent it just seems to happen, and Dysautonomia is no different. Intersectionality in all these communities is an area that needs far more work and exposure (#disabilitysowhite is an illuminating hashtag to follow on Twitter and I highly recommend checking it out). We know ethnicity, age, education, socioeconomic status, and geography, amongst many other factors can affect not only access to appropriate Dysautonomia diagnosis and treatment, but healthcare in general. Even simply having access to the Internet can make or break access to health care. Whilst I can bang on about these issues, it is only those with lived experience of these factors who can truly express their experience and needs with all the nuances that come from belonging to certain groups.

So I want to break out of the dominant pattern and offer up space on the blog for other less represented groups to share their stories. In reality Dysautonomia presents in many ways and doesn't discriminate based on sex, identity, geography, ethnicity etc. An appreciation and inclusion of diverse voices can only make our community stronger.

Bring on the DIVERSE voices!

SO

If you fit into one (or more) of the  groups below (or if there's one I've missed and you want to suggest) drop me a line. 

• Diagnoses under the Dysautonomia umbrella other than POTS (POTS will be heavily covered by all the Dysautonomia organisations during the month)
  I'm looking for submission from people with other forms eg, NCS/NMH/VVS, OI, AAG, OI, OH, AAG, PAF, MSA,, FD, or a more general Dysautonomia that doesn't fit a type.*
• Men
• People of Colour
• Culturally and Linguistically Diverse Groups
• Rural or remote
• Over 40 years of age
• LGBTQIA
• Disabled
• Countries where there is little to no awareness (I'd love to share stories from areas such as South and Central America, Europe, Asia, and Africa, I do get email queries from patients in these areas desperate for information, so I'd love to share more of their voices). 

*Having said that, if you are living in a remote location, live in a country with little awareness, or identify as LGBTQIA or fit into one of the other groups and have POTS, please feel free to apply as it is often these other aspects of life that can add another level of challenge in seeking care or living with chronic illness and disability.

How to Submit your story:

I'm looking for pieces focusing on how being part of one of the groups above has impacted positively or negatively on your diagnosis or access to treatment or simply living with chronic illness and disability? Do you have any solutions or ideas how to improve the situation? Or even how belonging to one of the above groups makes your Dysautonomia experience unique.

Submissions must include:

Short bio max 100 words.

Understanding that culturally, or for reasons of safety and privacy some posters may not wish to disclose their name, posters can be anonymous.

Max 500 words.

12 Times New Roman 

Please attach any photos or pictures using JPEG (Posts with photos tend to attract more traffic).

Depending on the number of submissions some pieces may not make it onto the blog. But I will attempt to get all submissions up during the month and some may be used in guest posts in the future.

I do reserve the right to edit to fit (but will let you know prior to publication), and wont accept any works that include hate speech. My blog is a place of inclusion regardless of sexuality, identity, ethnicity, religion, or lack there of etc. All who come with an open and welcoming heart are welcome.

Send to rustyhoe (at) livingwithbob (dot) com

Submissions close Saturday September 24th 2016

Looking forward to reading and sharing.

Michelle.

Julia: Exploring Dysautonomia Through the Arts for Dysautonomia Awareness Month 2014

(Wonder Woman)

The final piece for Exploring Dysautonomia Through the Arts comes from Julia. I loved this song from the first time I heard it and thought it was an appropriate way to end the month. Living with any chronic illness is filled with challenges and Dysautonomia is no different. But as hard as it is at times we all keep putting the next foot down on the path. We fight big and small battles each day, but we are all still standing. This month has really shown the creative spirit that exists in the community and I've found both inspiration and kindred spirits. Huge thank you to everyone who has submitted, read, commented or shared.



Julia contributed to last years Dysautonomia Awareness Month that focused on Australian and New Zealand stories. You can find her story here.

This is a song that I wrote (with the help of a friend whi is a music therapist). I was having a really rough time last year and couldn't sleep because of everything that was going on so I thought I'd put my words to music. It it the first song I have ever written.

I'm Up For the Fight 

I'm always behind

Always having to catch up,    

Catch Up

If I could just get through

With no hiccups,   

Catch up....  Catch up

If it’s not one thing

It’s another

But I'm always up for the fight

If it’s not one thing

It’s another

But I'm always up for the fight

If it’s not one thing

It’s another

But I'm always up for the fight

I'm done with one thing here comes another

But I'm always up for the fight

Every time I try to just, just be

Just be

It’s like my body is punishing me,    

Punishing me

Stop, punishing me

[CHORUS]

At night when my brain is spinning

Reality can hit hard

My days are filled with denial

Reality can be hard, 

Can be Hard

Reality can be hard

[CHORUS]

I'm up for the fight ----------- (x4)

[CHORUS] 

For more information on Dysautonomia be sure to check out:

DINET 

Dysautonomia International 

Dysautonomia SOS 

NDRF

Syncope Trust And Reflex Anoxic Seizures 

UK POTSies

Vanderbilt Autonomic Dysfunction Centre 

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,500, keep donating and hopefully we can reach $10,000.

Gracey: Exploring Dysautonomia Through the Arts for Dysautonomia Awareness Month 2014

Next up on Exploring Dysautonomia Through the Arts is, Gracey. Her work perfectly captures the experience of Dysautonomia. The people walking by while we are horizontal, two different worlds coexisting, yet often feeling so far apart.

I used to take being upright for granted. I could walk and run and play and sit and stand. I loved to shop, and I used to spend a lot of time shopping! I loved to play football and badminton. I liked riding my bike and going for walks through the countryside.

Now I find all those things very difficult. I have Postural Orthostatic Tachycardia Syndrome which is a type of dysautonomia. Everything upright is very difficult for me. Standing can make me dizzy and breathless, make me feel nauseous and in pain. Even sitting can make me feel awful. 

Sometimes I have good days when I manage to push through and do some of the things I have always enjoyed doing. And on the bad days all I can do is lie in a heap and watch the world rush past me. But I don't give up hope because every day gets us one day closer to the day when we find a cure!

For more information on Dysautonomia be sure to check out:

DINET 

Dysautonomia International 

Dysautonomia SOS 

NDRF

Syncope Trust And Reflex Anoxic Seizures 

UK POTSies

Vanderbilt Autonomic Dysfunction Centre 

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,400, keep donating and hopefully we can reach $10,000.

Soraya: Exploring Dysautonomia Through the Arts for Dysautonomia Awareness Month 2014

(Comfort, Edvard Munch 1907)

Next up on Exploring Dysautonomia through the Arts is Soraya. Soraya's poem, Comfort, explores the conflicts that many of us face when dealing with illness. Truth and comfort. Our need for both changes each day as we and our worlds change. Balancing both can be extremely difficult.

Soraya Ramhormoz is a writer, patient advocate, social justice and science literacy activist.
She writes about her experiences as a patient and as a human being moving through the world with a mysterious debilitating illness. She hopes her excruciatingly honest descriptions of her experiences will raise awareness, empathy, and compassion that will translate into advocacy for people with chronic and terminal illnesses.

In this poem, I tried to deal with the conflicting emotions brought out by the experience of having a chronic illness like Dysautonomia. We need both comfort and truth when dealing with a life-changing experience like Dysautonomia, but what happens when comfort and truth are in conflict? Which do we choose? For me, the answer can shift from moment to moment. I pride myself in my ability to deal with harsh truths, and I value honesty from medical practitioners and my family and friends alike. But having the comfort of denial stripped from me has been a painful, emptying experience.

I wanted to try to capture the emotional shifts we all have in dealing with chronic illness. And I want people to know that it's ok to be both angry when people we trust lie to us in the name of comforting us -and to wish they would lie to us to comfort us once again. We can be angry at the lie, and angry at the loss of the lie at the same time.

Comfort

"It'll be all right."
In the beginning, that's what they say.
You let the words settle into you, comfort you,
like you're supposed to.
Of course, it'll be all right.


You learn it's a lie in slow,


sudden
bursts


You're angry that they lie to you.


You wish they'd stop
They say that to everyone
It doesn't mean anything anymore —to you

Then they stop saying that —to you
They say that to everyone —else
It doesn't mean anything anymore —to them


You're glad —at first—
that they aren't lying
to you —anymore—


But what do you put
there,
where
the lie used to go?

What do you use
to fill the hole —besides the longing
for the lie?

For more information on Dysautonomia be sure to check out:

DINET 

Dysautonomia International 

Dysautonomia SOS 

NDRF

Syncope Trust And Reflex Anoxic Seizures 

UK POTSies

Vanderbilt Autonomic Dysfunction Centre 

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,300, keep donating and hopefully we can reach $10,000.

Kali: Exploring Dysautonomia Through the Arts for Dysautonomia Awareness Month 2014

Today's submission for Exploring Dysautonomia Through the Arts come from Kali. I love the thought Kali has put into her creation. Her explanation of all the aspects of the piece and her use of salt in the creation are quite fabulous.

My name is Kali and I'm 16 years old. I was diagnosed with POTS abotu 2 years ago but I've been struggling with it most of my life.

For the Dysautonomia awareness month contest I created a painting. The painting symbolizes a lot of patients with any form of Dysautonomia, and the butterfly is actually the color for Dysautonomia, which is turquoise. I worked really hard on this painting, and my hands are actually covered in dye and paint (which will wash off in actually couple days), but it's the thought that counts really, the thought that shows that I worked on something that I truly believe in.

In my painting it displays a butterfly on a flower. This butterfly is a great symbol for me because a butterfly has gone through many changes through its life, it's struggled to get where it's at, it had to adapt. All butterflies are unique, like this one, such as all people with POTS or anyone with Dysautonomia are unique because they have different symptoms. Like my GI doctor says "I'm a complicated and unique case". The butterfly is actually made out of salt and food coloring because people with POTS have to increase there salt intake to help with retaining fluids, so salt is very important to my everyday life. Overall, my painting symbolizes who I am.   

For more information on Dysautonomia be sure to check out:

DINET 

Dysautonomia International 

Dysautonomia SOS 

NDRF

Syncope Trust And Reflex Anoxic Seizures 

UK POTSies

Vanderbilt Autonomic Dysfunction Centre 

Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $3,400, keep donating and hopefully we can reach $10,000.