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When Anger Is a Hidden Sign of Ehlers-Danlos Syndrome

Woman holding her face in her hands

When people ask me what I have done to hurt myself I want to make up some really cool story to tell them instead of the truth. The truth is that I hurt myself by just sleeping wrong, by reaching up in the cupboard to get a cup, by braiding my hair, etc. I hurt myself daily because Ehlers-Danlos syndrome means that my joints are weak and pop out of their own volition. Sometimes I hurt myself worse than others. I have already had three surgeries on my shoulders (two on my right, one on my left) to repair and stabilize them from previous times I moved the wrong way, in fact the last surgery I had for this was in July of 2016. It hasn’t even been a year and I have hurt myself seriously again, this time my left shoulder. As I am writing this I am in excruciating pain, pain that is a step above the pain I feel on a daily basis. I have a high pain tolerance, but when I injure myself like this the pain becomes nearly unbearable.

I am writing this because it honestly makes me so angry. I am angry at my own body for being so fragile and I am angry with life for dealing me these horrible cards. The anger I have boils inside me because I do not have anything to direct it at. The pain brings me to tears, but so does this rage I feel. I am tired of having to go through things like this, of having to see doctors and of having surgery. I am tired of the doctors always being baffled, of looking at me like I am a complete mystery. I am only 25 years old, but Ehlers-Danlos syndrome makes me feel like I have lived a long, agonizing life already and when I think of the pain I will feel in years to come a new anger and dread fills my head. I know I am not the only one who feels this way, I know that there are many other people with various chronic illnesses who are as angry and upset as I am.

When I feel this way I know that I often direct my anger towards those I love the most. I become irritable and yell at people (or my pets) when they didn’t do anything wrong, but sometimes I just can’t take the pain. What do I do with this rage, how do I blow off steam before I explode in a fury of tears and unwarranted cursing? For me I write. When I feel like this I grab a pen and paper and pour all of these horrible feelings onto the page. I write poetry that tells the world how I feel and what it is like living with a chronic illness. I also paint or do other creative activities. I find that this is the best way for me to blow off some of this steam. It is different for everyone, but I truly hope that everyone who feels the way I do right now can find an activity or hobby that can help them to deal with the floating anger that comes with chronic illness.

I write this now because I want to get some anger out of my system, but I also write because I want other people who don’t have a chronic illness, people whose bodies don’t fail them, to understand what it is like for those of us who deal with this type of anger and pain day in and day out. I write this because maybe someone has a loved one with a chronic illness, perhaps Ehlers-Danlos syndrome, who is going through this despair and they do not quite grasp the situation. It is my hope that maybe by reading this they can begin to understand.

I think the best thing to do for someone who feels this type of anger is to let them express it and maybe help them find a viable way for them to blow off some steam. It is also important to understand that when we sound irritable towards someone or yell or curse, it likely has nothing to do with them and everything to do with they desperation we are feeling. So although it might not be pleasant to be around someone who feels the way I do right now, it is important not to take anything that is said personally. We need our loved ones to be the solid ground in the middle of an ocean of rage and pain.

SOURCE;THEMIGHTY.COM

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You Can Dislocate a Rib By Sneezing; My Life With Ehlers Danlos Syndrome

People with EDS are sometimes called Zebras.

Fuck that. I’m a goddamn magical unicorn.

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I’ve talked about celiac disease before. It’s annoying but ultimately not the worst thing that I have to deal with. It’s come up before because we talk about the fact that no, gluten isn’t going to make my dick fly off.

(Because my dick is in a drawer next to the bed. Thanks Hitachi corporation!).

I don’t talk about Ehlers Danlos as much because, first, it’s really personal and I don’t want pity for what I’m going through. I just want better medical care. Second, the thought that someone else is in chronic pain makes people uncomfortable. And then it makes people ask questions.

And then it makes people, even science minded people, skeptical. Not capital S, Skepticism-GMOs are fine-vaccines are good for you-shut up and take your science- Skeptical. But skeptical like “you cannot possibly have all this shit wrong with you” skeptical.

Trust me, I prod my doctor about that every time I’m in for my more-frequent-than-I-would-prefer doctor’s appointments.

“I can’t possibly have all this shit wrong with me.”

I am sure that, when they were passing out bodies, I got a genetic lemon and somebody fucked up. Unfortunately, unlike an honest car dealership (lulz), I can’t trade this one in, and the best that I have to deal with is whatever modern medicine will hand me. So strap in, have a drink, I’ll try to make you comfortable.

“You’re not supposed to bend that way.”

It started when I was stretching for volleyball when I was a kid. Everyone else would pull their arms over their head and stretch like a normal human being. A little bit of a tricep and lat stretch. My shoulder blade, with a normal pulling motion, pulled halfway out of the socket.

My friends thought it was alternately gross or a neat party trick. By high school, my left shoulder did a weird popping motion. With all the volleyball I played, and the fact that I could spike with both arms, I eventually fucked up my left shoulder with damage to all of my glenohumeral ligaments and my labrum. Over the course of six years starting my junior year of college, I needed three shoulder operations.

I just have a bad shoulder, right?

Up came the pain.

I’ve talked about my headache before. It was the first big sign that this was more than a shoulder I screwed up from one too many dives on the high school volleyball court. Who the fuck gets a permanent headache? It’s not normal.

The first week of it you think… this is going to go away. I’m overtired. I’m dehydrated. MAYBE I DID LOOK TOO CLOSE TO THE SCREEN AT WORK. GET ME A HIGH DEF SCREEN!

The second week, you’re alternating between denial and bargaining. This is not real pain. I was hallucinating the last two weeks. I’m not really FUCK WHY IS IT BACK AGAIN WHY WHY WHY WHAT IN GOD’S NAME DID I DO TO DESERVE THIS I’LL DO ANYTHING TO MAKE THE PAIN SHTAAAAP!

By month two, I was damn near losing my mind. I was wrongly diagnosed at first with cluster headaches. It was a constant dull ache, a stabbing pain centered around my left eye that would flare up about 60 times a day for anywhere from 30 seconds to several minutes. It was coupled with tearing, left nostril congestion, and the left side of my face would droop like I had a stroke.

The pain is similar in terms of intensity to cluster headaches, but clusters last for an hour or so. They’re also known to be seasonal, attacking some sufferers at the same time of day or year on the clock. They don’t come and go off and on all day every day.

As bad as it was for me, I was living with my mother at the time. I’d moved home after ending one job a few states away and starting one job locally, and wanted to save some money. Then I stayed at home for longer because we didn’t know if I had… a brain tumor? MS? Squirrel? And my mother, saint that she is, felt helpless while she watched me in pain every day. At the same time, my brother was suffering with lupus across the country. Whatever my mother was going through watching it all, she always smiled, always had a hug. One of few things that we found helped was caffeine. It at least made the headaches a little less evil. I was working second shift at my lab, and she tended to wake up before me and make coffee.

There are little things in life that you might not think matter, but curling up on the couch clutching a cup of coffee that my Mom had used to nurse some life back into me when I was just trying to not be miserable? It got me through some days.

As much as I tell people now not to try to be their own doctor, I was desperate. I started researching headache variants online because the rare headaches seemed to be a blind spot, even amongst neurologists. An average neurologist, even specializing in headaches, can go an entire career without seeing a headache variant like mine. I went through eight neurologists before finding one who specialized in craniofacial pain. Some doctors were dismissive. One tried to take me off a medication that was working solely because she thought I was “enjoying the weight loss side effect.” It was true, I wasn’t against the side effect, but I was happier than anything that it was making the pain not be a thing. 

Unfortunately, it made me understand why people turn to alternative medicine. We still don’t have a perfect understanding of some of the more difficult to treat conditions, and desperation and frustration will make even science minded people leave the system and seek other answers. I went organic. And vegan. And anti-GMO.

(You guys know the punchline to that though, right?)

Depending on the doctor I go to, I still have doctors who diagnose me with a different headache condition separate from EDS. The closest condition they can figure is that it’s a trigeminal nerve headache that’s related to Ehlers Danlos or that it’s SUNCT Syndrome. Whatever you call it, it’s not a migraine. I’m not light/sound sensitive, it never makes me nauseous, and man, without the medication that they took a year to figure out, I’d be in such intense pain that I wouldn’t be able to function.

But I thought that was the end of the story. I thought… I’m in my late-twenties. I’ve already been through enough of stupid painful bullshit for a lifetime. Can I go through the next thirty-ish years of shit not hurting? That’s a normal age for stuff to start breaking down, 60ish. I could live with that. Is there a goat somewhere that I can sacrifice to make that be a thing?

Hip pain, scoliosis, and rip dislocations, oh my!

I ran a few marathons. Because I’m an idiot. And because one of the few things that made my head feel better was working out.

(Like I said, it was definitely not a migraine).

But, the downside to this is that if you have already-bad-joints, you will fuck them up more without knowing it.

I did something to my left hip on a seven mile training run. My doctor, kind as he was, didn’t see anything in it on the x-rays or initial MRI. So I ran two marathons. During the time that I was marathon training, I also had a car accident.

They spotted scoliosis on my spinal x-ray. Huh. That was new.

But but but… I CAN’T HAVE ALL THIS SHIT WRONG WITH ME. I’M A GODDAMN MARATHONER. THE MILES COWER BEFORE ME.

(I sound like a really serious scientist right now, amirite?)

After I ran my last marathon, I took time off to finally investigate why it felt like an angry honey badger decided my left hip was his hidey hole. Finally on an MRI with contrast, they spotted a torn labrum. In the post-op x-rays, they saw that my hip sockets are mal-formed, and I’m going to need a replacement or a restructuring by the time I’m 50.

And then I dislocated my first rib. At which point I thought I should have started asking questions about a decade ago.

Ehlers Danlos Syndrome, the key to life, the universe and everything. 

So I had a few friends with Ehlers Danlos who said “why the fuck haven’t you been tested for Ehlers Danlos because no really why the fuck?”

That sounded medical, I’m sure.

But I had the symptoms. And I’d moved at this point enough times that my doctors could have missed over a decade of medical history. Between work and school, I’d lived in four states and two countries. Even calling every doctor’s offices that I’d visited in every state and country and requesting all my old medical records, it would be no guarantee that my new doctor would just magically see a pattern. So I requested an appointment with a rheumatologist and said “will you just take a look at my joints?”

At the beginning of the appointment, he said “there’s no reason to suspect that you have Ehlers Danlos,” because how many doctors love self diagnosis? About as many as comics who enjoy being told “hey, that’s funny, you should use that in your act.”

(Are you new? The number hovers at around zero).

It’s understandable, because when you hit Google MD, you tell it that your back hurts and it turns out that you have testicular cancer even if you don’t have testiculars.

At the end of the appointment, after doing a full joint exam, seeing the range of flexibility, my flat feet (that I didn’t even know was a symptom), scoliosis, and history of dislocations, he was giving me instructions on how to handle life with Ehlers Danlos.

Finally. There’s at least a reason for life the universe, and everything. I had a 42.

Where does it hurt?

I still have to manage my headache pain with medication. And some days my shoulder hurts because if you have three operations worth of scar tissue in a joint, it’s surprising if it doesn’t hurt. The scoliosis isn’t terrible, but it doesn’t exactly tickle.

Exercise is rarely what does damage. Most recently I dislocated a rib so severely in my back that I’m on a round of steroids. This is the second time this has happened. It wasn’t from heavy breathing from exercising (because at least the breathing from exercising is rhythmic and steady). It wasn’t from being hit or bumping myself.

It was from a really hard sneeze.

I’ve been in more pain this last week than I was after each of my shoulder operations.

I made a video talking about it this week to address why I haven’t been writing as much lately. It’s difficult to focus when I’m in severe pain. I’m on a round of prednisone for the inflammation and oh man, they do make you hyper (as was evidenced by the rapid fire talking in the video). I want to clean everything in my house, run a marathon, cook everything in the kitchen, record a new video every hour, get a pet dinosaur, get six pet dinosaurs, give Science Dog a bath, and did I mention…

There are negative side effects too.

Like bloating. And weight gain. And getting chipmunk cheeks. And the day after you get off of them, you feel like it’s the worst caffeine crash of your goddamn life. If you’re awake for four hours, it’s a lot.

It already feels a lot better than it did a few days ago. It’s a good start. But steroids every time something hurts is not an option. It suppresses the immune system, thins the bones, and did I mention weight gain? As much as I’m capable of loving my body, I don’t want to buy new clothes literally every time I sneeze. Also, if I have a disorder that causes joint pain and dislocation, weight gain can easily exacerbate joint pain.

I’m being very careful about my diet lately and counting macros like a fiend. And when my joints allow, I exercise. More yoga, more cycling. As much as it pains me mentally, less running.

What are the impacts on the life of someone with this disorder?

For people without a chronic condition, pain is a sign that something is severely wrong. For someone with a condition, it’s just Tuesday.

It’s different for everyone. This may surprise you if you don’t know anyone with EDS, but I have a mild/moderate case. I’ve seen colleagues need to take an entire year off from work to get their spine fused. It can be a nasty bugger. It leaves people in chronic pain.

Right now people are talking a lot about opiate pain medication in the media. There’s a lot of misunderstanding about their role in the pain sphere. Is there a role for these medications? Absolutely. Are they overprescribed sometimes? Absolutely.

I am rarely on opiate pain medications. I’ve taken them this week because, when it literally hurts to inhale, that’s a good litmus for taking strong pain meds. Most of the time my various little aches and pains are nipped by anti-inflammatories. I know people with EDS who need opiates on a regular basis and handle them under doctor supervision and monitoring with regular drug testing to prevent doctor shopping and other types of abuses, and I know people with EDS who don’t need them at all who have similar physical problems. A few years ago, pre-headaches, I probably had a lower pain tolerance. Being in chronic pain changes how you handle it. Now, even when I’m in severe pain, I’ll go for hours before I even reach for an anti-inflammatory, thinking “this will pass.”

The handful of little problems that you don’t think of are the worst part. I’ve had to move for work a few times, and it’s landed me in different medical systems. If you don’t have any conditions, all you think is “will my doctor warm the stethoscope before applying it to my back?” If you have a handful of conditions to manage, it’s anxiety provoking.

Will the doctor try to change my medications that are working well?

Will they try to re-diagnose me?

Will they take my conditions seriously?

When last I changed systems, I got a great neurologist. The time before that, the neuro tried suggesting four different new meds before I said “no, really, the one I’m on is great, I’m not here for a ninth opinion, I’m here because I moved across the country.” The rheumatologist in my new system had never treated for Ehlers Danlos Syndrome and said that rheumatologists didn’t treat Ehlers Danlos.

That thing I said earlier about understanding why people seek out alternative medicine? Yeah.

Where do I go from here?

The thing with a chronic condition is that there’s no cure. But there’s good news and it has nothing to do with my Geico payment.

As much as I could sit here and whine about it (which, I apologize if this writing has come across as whiny), it’s just life. Most of the time, I’m fine. This is the first time in a while that I’ve been incapacitated by something, and it’s reminded me that this disorder is much more than taking a few pills every morning. Average day, I wake up, take a few pills, and get on with my day.

New therapies are coming out all the time for EDS, and with more awareness, more doctors are going to get involved in research. It’s generally been defined as a rare disease, but rates of diagnosis have historically been low because of a lack of awareness even within the medical community. With more awareness will come more accurate diagnosis and better treatment plans both to prevent pain and help care for it, hopefully without long term use of addictive medications.

If you have a friend in your life with EDS, listen to them. The suffering is real, and it does suck to not know what part of your body is going to hurt next. From sneezing.

As for me? Don’t worry about me. That job is for my doctors and for researchers. And my family and loved ones who are far too kind to a loud mouth jackass like me, but the worry is not for you, the very kind folks across the internet who come to my website generally to be amused by my rantings about science. And as we’ve seen over the long arc of history, things are always getting better in medicine. And it’s going to get better.

And I’m going to be a happy unicorn. Or zebra. Whatever.

source;http://scibabe.com

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3 Types of Days I Have With Ehlers-Danlos Syndrome

Living with a chronic illness is hard to explain to the outside world. I have hypermobile Ehlers-Danlos syndrome (hEDS). I find I have three kinds of days.

Side view of sick woman having coffee on sofa in living room

My favorite days are simple: no dislocations, no subluxations, mind engaged and body somewhat agreeable. No day is 100 percent pain free. No day starts with me jumping out of bed happy to greet the sun, but some days fortunately come after a decent night’s sleep and a dose of meds – these are what I’d call my “normal.”

These are my favorite days. They come and go and I enjoy myself, my family, my life and I can deal with the moderate pain and brain fog and exhaustion. Sometimes on these days you’ll see me walking slowly, using a cane or even a wheelchair. Or I may appear totally fine. I may be smiling. I will have my hair done and some makeup on and I’ll be happy. No day is ever fully pain-free, but I push through.

My middle days are actually the high pain days. The days my hip decides to dislocate, the day I can’t get out of bed because I’m so tired, and the day my brain feels like mush from the brain fog. Those days I can cope. I take pain medication. Sometimes I sleep and I give in to the pain and the exhaustion, and I just let the world slip by. Sometimes sleep or pain meds are not an option so I go on with life.I may be out and about in a ponytail, jeans and a comfortable shirt. I may not be smiling fully but I’ll tell you I’m fine. I have come to terms with the idea that I am going to have one of these days at least once every two weeks when life catches up to me. As much as I can I get into pajamas, let the dishes sit, let the laundry go, let the kids watch TV and let my husband take over fully. I let go. I get as comfortable as I can in bed, sometimes let the dog lay on me, sometimes not. I use a heat pad or an ice pack. I use my tens unit. I soak in the tub or just melt into pillows. I let my body rest and mostly sleep to help it heal as best it can. These days sound miserable to the outside world and usually these are the days people feel bad for me. Others offer to help and send me well wishes, but these days aren’t as bad as you’d think. On these days my mind is able to stop. I binge Netflix, movies and just don’t think at all.

My worst days will surprise you. They are what I call the in-between days. Today is one of them. I’m tired and have aches. I don’t have severe pain, but I’m not feeling good either. To give you an idea, it’s like day one of the flu. I’m not feeling good, but I’m not feeling so terrible that I can do anything about it. I’ll take my medications and try to sleep, but my brain is still going strong. It feels like nothing helps on days like today. I have errands to run, things to do, but my body won’t let me. It’s as though my brain and my body are no longer connected.

I would love to do some shopping as I need new sneakers and some new summer clothes, but my body won’t tolerate the drive or walking — let alone the shower and getting ready. TV isn’t holding my attention long enough for me to really get into a show or even zone out.

Sleep is out of the question. I slept last night and I can’t seem to force a nap even though my body feels tired. My brain won’t shut down enough for that. I’d love to lay outside in the warm sun and enjoy the weather, but I don’t have anything comfortable enough to sit or lay on, and I don’t feel up to heading somewhere public to lounge.

I don’t have it in me to be social today. I don’t want to text or even pick up my phone. But my brain won’t stop going. I can think of a million things I should be doing, need to do, but I can’t find the energy to even open my email and read messages and respond. My brain says, “Go, go, go,” but my body says, “Yeah right!”

I want to play a game with my kids, but sitting at the table sounds like torture right now with wooden chairs and noises from all around. I’d love to visit a zoo, or even a park, and enjoy this weather. However, I can barely type this, so taking a shower and getting up to go isn’t going to happen.

These days are the worst because they make me sad. They fill me with regret for all I’m not doing and they make me long for the days when I didn’t feel this way.

They are the hardest to explain to anyone outside of my EDS support groups. How do I explain to someone who casually asks, “How are you today?” that I’m not OK – but I’m still here? On days like this, time moves slowly. I find myself wishing I could sleep, but I know it won’t happen.

Days like this make me depressed, but I know I will be better once this day is over.

Days like this make me angry. Angry I have this condition. Angry at a world that doesn’t understand invisible illness.  Angry for no reason at people who are out enjoying a fun day while I struggle. Angry at doctors for not finding a cure or giving me better ways to cope.

But in the end days like this give me hope. I know today is going to suck. But knowing I can get through today means I can deal with the other stuff too. Tomorrow will be better. I’ll have a good day because I’m struggling today. I’ll make it through today and live to see another day with my family and friends.

Days like today give me compassion. Compassion for those who are fighting right along side me. Hope for all of us that someday we’ll find a better way to handle days like today.

Knowing today is my worst means tomorrow won’t be so bad. I’m hanging onto that like a lifeline. Tomorrow I’ll be able to enjoy things again. I’ll be walking and talking, living the way I want to be. That makes today bearable.

source;themighty.com

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The US beauty queen making her invisible illness visible

Victoria poses in an open ball gown showing a 25 inch scar from her surgeries down her spine

“It’s not easy to stand on stage in a bikini in pageants. I have a 25-inch scar that runs down my spine.

“And people can see it… like, really see it.”

Victoria Graham, a 22-year-old student from Manchester in the US state of Maryland, had an untraditional journey into the glitzy world of US beauty pageants.

She may look like any other contestant at first glance, but Victoria has Ehlers-Danlos Syndrome (EDS) – a rare genetic condition that affects her connective tissues.

Recalling her first competition, she says: “I walked into orientation in a neck-brace, surrounded by all of these gorgeous sky-tall women.

“I looked to my Dad and asked ‘What in the world am I doing here?’… It was comical.”

Media captionWatch: As part of her role, Victoria visits children in hospital

Victoria wasn’t always so open about her condition. “Until I left school at 19, I hid my illness from others,” she says.

“I would rather have my legs dislocate than someone see me in a knee brace.”

But she’s since realised that speaking out makes her feel empowered – and enables her to help others in the same situation.

‘My injuries weren’t normal’

Victoria grew up practising gymnastics and was told she was “too flexible” by her coaches.

She became aware something was really wrong after a gymnastics accident when she was 10.

“I’d get injuries that weren’t normal – things weren’t adding up,” she says.

Victoria Graham in her latest pageantImage copyrightALLYKATPHOTOGRAPHY
Image captionVictoria’s platform is ‘But you don’t look sick? Making invisible illnesses visible’

EDS is notoriously difficult to diagnose, and she spent three years seeing different specialists, trying to pin down the problem.

Eventually her family found a geneticist who gave her a diagnosis aged 13.

“It was weird because although there’s no treatment and no cure, we were ecstatic because we finally had a name for what was going on,” she says.

In the family

It then became apparent that Victoria’s condition was inherited – only then did her mother, brother and other family members find out they also had lesser forms of EDS.

“My grandmother lived with EDS for nearly 70 years without knowing and my Mom had it 40 years.

“Nobody should have to live that long before finding out what’s going on with them,” she says.

Victoria pictured when she was young, with her mother who also has a form of EDSImage copyrightVICTORIA GRAHAM
Image captionThrough her diagnosis, it emerged her mum, Mary Beth, also had a less severe form of the condition

Over a two-year period from 2014, Victoria had to undergo 10 operations on her brain and spine.

“I’m fused from skull to my bum – all the way down,” she says. “Because I was able to move so much before, the vertebrae were dislocating themselves.

“I have a limited range of motion now, but I need to be stiff so my brain stem isn’t under pressure and my spinal cord isn’t being crushed.”


What is Ehlers-Danlos Syndrome?

  • Ehlers-Danlos syndrome (EDS) is the name for a group of rare inherited conditions that affect connective tissue
  • Connective tissues act like a ‘glue’ to support the skin, tendons, ligaments, blood vessels, internal organs and bones
  • Victoria has a severe form of EDS which means she has cranial and spinal instability
  • She also lives with dietary limitations because of how her condition affects her internal organs
  • For more information go visit the Ehlers-Danlos Society website

Victoria’s EDS affects a lot of aspects of her body, including blood flow.

She says she has to take 20-25 tablets every two hours. Some are for pain relief, but others are supplements to ensure her body keeps functioning correctly.

“I know plenty of girls who are in a near similar situation as me medically who are bed-bound, but I believe lifestyle has a lot to do with your attitude and how you view your situation.”

Victoria leaps into the air in front of the oceanImage copyrightVICTORIA GRAHAM
Image captionDespite her condition, Victoria has been able to live an ordinary lifestyle

Despite the severity of her condition, Victoria finds herself often dismissed and discriminated against because of the invisible nature of her illness.

At school she consistently struggled with teachers’ unwillingness to make accommodations. And she says she often gets shouted at in public for using a disability parking pass.

As part of her efforts to raise awareness and educate people, Victoria now performs a monologue about her condition at pageant competitions.

She says she entered her first competition as part of a ‘bucket list’ deal with a friend after an operation.

Victoria Graham holds a sign saying 'I have an invisible illness' in her pageant crownImage copyrightVICTORIA GRAHAM
Image captionVictoria talks about her condition at the competitions

She won her first local title just months later and now holds Miss Frostburg – a local title within the Miss America Organization.

Through this platform she has been able to meet and support other people with EDS.

“Its not always easy, sometimes you want to be normal – you don’t want to be that girl with those scars on stage,” she says.

‘Medical Zebra’

Despite being only 22, Victoria now runs her own non-profit EDS support group called ‘The Zebra Network‘.

“I was seeing people who were struggling – doctors were often recommended through word of mouth.

“I saw a dire need for a network of sufferers and for someone to dedicate their life to that” she says.

A group of EDS sufferers and supporters hold 'zebra strong' plaquesImage copyrightROSS LEWIN
Image captionShe says her group’s goal is to have a global EDS support system

“I know I’m young and its a bold decision to make without a college degree – but if someone else wasn’t doing it, I would be that someone.”

She explains the network’s name: “In medical school, doctors are trained to think of the common thing when diagnosing through the phrase, ‘When you hear hoofbeats, think of horses not zebras.’

“So if a kid has runny nose or a cough they most likely have a cold rather than a rare form of cancer. But those rare things do happen and are often called ‘medical zebras’.

“So we say, ‘Think zebras, because zebras do exist’.”

Despite her confidence now, its been a fraught journey to this point for Victoria.

Victoria Graham in a hospital bed, showing her IV line and in a head brace.Image copyrightVICTORIA GRAHAM
Image captionVictoria had to undergo ten major operations within two years

At Eastern University in Philadelphia, she was on the soccer and lacrosse teams, but was forced to move colleges to a more flexible programme because of her operations.

She says she also lost friends as she went through so many procedures.

“Maybe my illness is something they can’t deal with or put up with,” she says. “I don’t know what the reason is.”

She also describes having relationships with boyfriends suffer.

Victoria Graham in her lacrosse uniform at Eastern University, with her parentsImage copyrightVICTORIA GRAHAM
Image captionVictoria played soccer and lacrosse throughout school and college.

“I try to be very understanding and not take it personally,” she says.

“You have to think of the other side of things. I think that’s one of the ways I’ve been able to combat the negativity.

“If people are able to be empathetic to my situation in the same way – by recognising some illnesses aren’t as obvious as others – it would make it a lot easier.”

source;bbc.com

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What No One Told Me About Ehlers-Danlos Syndrome

I have Ehlers-Danlos Syndrome (EDS). It affects the collagen in my body, and along with it comes dislocations, subluxations, chronic pain, and fatigue. I was diagnosed with this three years ago when I was 14, but I had a lot of other health issues.

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My EDS wasn’t that bad, so it got pushed to the back burner until just a couple months ago, when it rapidly got worse. I wasn’t sure what was happening to me, why my entire body felt like it was breaking. But then I remembered something they told me I had… Aye-something…Inlos-something…Ehlers-Danlos! I remember my doctor saying it was the reason I was injured often, why my elbows stretched the other direction, why my ankle caused so many issues, but that’s about it. No one prepared me for this. No one told me my life would be like this.

I’ve come up with a list of things no one tells you when you’re diagnosed with EDS.

1. No one tells you about the pain.

Obviously you’re going to have pain when something dislocates. But what about the pain that isn’t caused by a dislocation or subluxation? The pain that is there when you’re laying in your comfy bed and nothing seems to be out of place. But for some reason, your back hurts so bad. Your spine just doesn’t seem to want to act right. The pain that still creeps up on you, even right after you’ve gone to the chiropractor who put everything into place. There is always pain. 24/7, something hurts.

2. No one tells you about the exhaustion.

We have to hold our own bodies together. We can’t just be standing and let our arms hang, it hurts! Every moment of every day, our bodies may not be able to relax. Our spines may not line up correctly when we sit, our knees might twist when we bend our legs. Our muscles might work five times as hard to hold our bodies together, and it gets so tiring. We can wake up after sleeping a nine hour night, and need a nap three hours later. Our bodies are constantly working, and it is so exhausting.

source;themighty.com

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How Rescuing a Puppy Changed My Life With Ehlers-Danlos Syndrome

 

Dear Rory,

Out of the three humans who take are of you, I know I am not the best at it, nor am I your favorite — unless you consider ankle-biting to be the utmost sign of your affection, then yes, I am your most beloved human.

woman holding dog with cone on head

I know you are a dog and writing to you is silly, but I need to explain why.

After rescuing you in early December, my life changed dramatically. Not as drastic a change as chronic symptoms, but a change nonetheless. I was forced out of my fatigue-insomnia-pain ridden state I’d been slowly retreating into over the past couple of months. Due to work and stress all the while being in pain, I began losing energy, and losing it fast.

I couldn’t adjust automatically to your puppy schedule, but once I did, I was taking part in feeding you, cleaning up after you, and watching you constantly to make sure you didn’t pull out staples from the carpet stairs and get into all sorts of other mischief. I began staying awake longer, sleeping better, eating more, talking more, communicating better with doctors, even reading more, and slowly but surely, I found my way to a life that I could proud of. If I don’t accomplish much during my time, then I’ll contribute. I’ll never be able to go back to the way my life was before my Ehlers-Danlos syndrome got worse, but I will be able to move forward so much more than if I didn’t have you to keep me going.

 

So I understand that you are a dog, and writing to you is silly, but with my actions I hope I can say, “Thank you, Rory, for rescuing me.”

source;http://themighty.com

 

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People With Ehlers-Danlos Syndrome Explain What It Feels Like

(EDS) is a group of connective tissue gene disorders, and symptoms include skin that tears or bruises easily and unstable joints prone to frequent dislocations, among other issues.

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EDS affects somewhere between 1 in 2,500 to 1 in 5,000 people in the United States, but understanding of the disorder tends to be limited among society and medical professionals. Some individuals with EDS remark that their doctors don’t even know how to spell it, and the most common analogy likens the body of someone with EDS to that of a house built with faulty materials.

“Our EDS community formed out of a need to understand ourselves even when medical professionals did not,” a spokesperson for the Ehlers-Danlos National Foundation told The Mighty. “Awareness about EDS leads to better lives. Although EDS is not curable, early diagnosis can limit long-term damage as problems can be treated as they arise, and sharing information in our communities about what has worked for each of us can help all of us.”

We teamed up with the Ehlers-Danlos National Foundation to ask their Facebook community how they would describe the disorder to someone who doesn’t have it.

Here’s what they had to say:

1. “It feels like I’m 80 when I’m 40.” —Kimberly A. Bates

A quote from Kimberly A. Bates that says, “It feels like I'm 80 when I'm 40."

2. “It feels like having the flu all the time.” —Linnie Lin

A quote from Linnie Lin that says, “It feels like having the flu all the time."

3. “I feel like an alien on a planet where I don’t belong.” —Yolanda Smith

4. “It feels like I’m slowly disintegrating into particles…” —Sarah-Marie Zeraphic-McFarlane

A quote from Sarah-Marie Zeraphic-McFarlane that says, “It feels like I'm slowly disintegrating into particles…”

5. “It feels like my body is falling apart at every joint.” —Breanna Griggs-Meloy

6. “It’s like a big pair of knickers with no elastic left.” —Christine Di Ciacca

A quote from Christine Di Ciacca that says, “It's like a big pair of knickers with no elastic left.”

7. “It’s like having the flu, a hangover and getting hit by a bus all at the same time.” —Irene Beck

8. “I feel like a marionette and someone else is in charge of the way I move.” —Nicole Hess

A quote from Nicole Hess that says, “I feel like a marionette and someone else is in charge of the way I move.”

9. “It feels like your body is trying to turn itself inside-out, piece by piece.” —Aria Eragon

10. “It feels like I’m made of rubber bands that are about to snap.” —Katie Thomson

A quote from Katie Thomson that says, “It feels like I'm made of rubber bands that are about to snap.”

11. “It feels like you’ve lifted a car off someone all day every day.”—Melissa Conder

source;http://themighty.com

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10 Things You May Not Know About My Ehlers-Danlos Syndrome

When the media features Ehlers-Danlos syndrome (EDS), the focus is usually on those of us who dislocate multiple times a day, the chronic pain, those who can contort their bodies into extreme positions, and sometimes extremely stretchy skin. EDS, a genetic connective tissue disorder, is very under-recognized, even by the medical community, as most doctors, when they have heard of EDS, are only familiar with the well-emphasized symptoms. The lack of emphasis on the other signs means that those of us who present more subtly may struggle immensely in finding answers. Some of us, like me, even know our diagnoses going into our appointments and yet still struggle to find a doctor willing to learn and listen long enough to provide us with the “official” medical confirmation. Don’t get me wrong, we all struggle. From the obvious to the subtle, to live with EDS is to suffer, but even a small amount of recognition and a slight increase in awareness of our disease could go a long way towards improving all our lives.

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EDS does have a very distinct clinical picture, but I don’t believe that’s the picture that’s well-known presently. The lack of awareness around EDS and its multi-systemic presentation needs to change.

The first time I complained of recurrent chest pain and pain in my arms and legs, I was 4. Doctors searched for the source of my chronic hip pain multiple times throughout my childhood, but they never found anything, and eventually they stopped trying. Eleven years ago, I began reporting chronic fatigue. I was provided a variety of seemingly disconnected diagnoses, but it never made sense to me that everything wasn’t all connected. Four years ago, frustrated with no doctor even making an attempt to help me, I started reading medical research myself. Having now found a lot of my answers, I’m still frustrated for every individual who has to go through similar experiences, including having to repeatedly face pervasive intolerances and a complete lack of understanding. 

I’ve learned a lot during my journey, but the fact that’s become most apparent to me is that nothing is going to change if no one talks about their experiences. So, in honor of all the zebras out there, here are 23 things people may not know about my invisible disabilities.

1. The chronic conditions and diagnoses I live with are: Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome /dysautonomiafibromyalgia, chronic fatigue syndrome, attention deficit disorder, asthma, cervicalgia, occipitoatlantal instability, loss of cervical lordosis, hyperhidrosis, orthostatic hypertension, hypertonic pelvic floor dysfunctionacrocyanosis, erythromelalgia, Raynaud’s syndrome, scoliosis, hypokyphosis (flattened thoracic spine), vertebral rotations, temporomandibular joint dysfunction, chronic intermittent paresthesiaschronic migraine, bilateral headaches and allergies. Every day’s a surprise symptom party…

2. The biggest adjustment I’ve had to make is: Knowing I can’t do everything.

3. Most people assume: Everything comes easy to me, and because I look fine, I am fine.

4. The hardest part about mornings are: Getting out of bed + showers. Heat and prolonged standing exacerbate and intensify my dysautonomia symptoms. Washing my hair even causes symptomatic problems, as holding my hands over my head reduces blood flow return to my heart, causing my heart to beat even faster, making what should be a simple act of showering into an exhausting and fatiguing experience, as my heart works overtime trying to pump blood to my body.

5. A gadget I couldn’t live without is: My computer (research is my superpower).

hand showing fingers due to raynaud's syndrome6. The hardest part about nights are: Knowing I’ll be having the *terrible morning, can’t get up, fatigue even worse than usual* feeling all over again.

7. Each day I take __ pills and vitamins: 11

8. Regarding alternative treatments: I am not opposed, but I want to do my own research.

9. Regarding working and career: I have too many interests for my own good. I want to do everything, yet – see #2.

10. People would be surprised to know: I’ve had never-ending fatigue every single day since 2005.

source;http://themighty.com

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Being Comfortable With the Uncomfortable

Invisible illness is a term those affected use to explain that while we may look “put together” on the outside, inside we are falling apart. In my case, I am literally falling apart. I have Ehlers-Danlos syndrome hypermobility type. I used to be able to go out in public and blend in with the crowds around me. No one could tell that my legs felt like lead from walking, or my swollen chest was making it hard to breathe. Until now. Now when I go out I am followed by a giant billboard that screams, “Hey look at me, I’m disabled!” That billboard is my service dog Rembrandt.

Woman training dog.

We have only been working together for five months, but already I have gotten used to the litany of questions and remarks I get from people while we are out. They usually are about his age, his breed (he’s a standard poodle), his height, what type of working dog he is, how cute he is, all of which are quick and easy to answer. Though lately I have been noticing a trend. An individual will see me working with him, asking for commands and rewarding with treats, and they will ask “Are you training him?”

I reply “No, he’s mine,” with a smile. Then it happens. Their face will change, eyes widen with shock and their expression softens to one of sympathy. That’s it. The conversation is over. The individual will then turn and walk away without any further questions or comments. I can understand a person not wanting to seem rude or intrusive (and I have no problem telling someone if they are) but is encountering a disabled person that uncomfortable?

Being comfortable with the uncomfortable is something that people who are chronically ill understand well. We often don’t like dealing with doctors, medications, and the gamut of problems our bodies serve us every day, but we deal with it. We are comfortable with ourselves; why shouldn’t others be as well? What is so jarring about meeting someone with a disability that some people feel the need to turn and walk away? I may never know the answer. Having been on the receiving end of the phasing-out period that occurs when friends no longer want to have a disabled friend, I may not want to know. Now that is uncomfortable.

I can advocate for the invisibly ill until I lose my voice, but there will continue to be those who remain uncomfortable with the disabled community. Until then, Rembrandt and I will continue to walk along, answering simple questions and waiting to find someone willing to push past the stigma and have a conversation.

source;http://themighty.com

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15 ESSENTIALS TO A SUCCESSFUL CAREER WHILE LIVING WITH A EHLERS DANLOS SYNDROME

15 essentials to a successful career while living with a chronic illness

When you go through a health crisis or even have to face going on disability (either through your employer or through social security), most of the time your life is turned upside down; focusing on your health is now all-consuming.  It is hard to imagine going back to work, even if you find some sort of stability, because your days are spent trying not to spiral down again.  This is what I call The EDS Spiral.  The EDS Spiral is my own term, based on my experiences of going through the ups and downs of living with numerous chronic health conditions and how this roller coaster ride affects my mental, physical and emotional health.  The same phenomenon has occurred with countless people, so much so that research on Ehlers-Danlos Syndrome is now regularly discussing it.

Still, how do you climb out of the spiral, find a way to go back to work, and have a successful career, if that is your goal?  Below, I have listed the top 13 things that I have found are essential to having a successful career while living with a chronic illness.

1. Taking care of my whole self first, no matter what – physically, mentally, emotionally and spiritually. For me, proper nutrition and exercise daily is crucial, and a way of life. It’s non-negotiable. Additionally, proper exercise and nutrition helps me meet the needs of taking care of the mental, emotional and spiritual aspects of my health. IMG_2564

2. Personal Growth – Personal growth is essential to me being the best person I can be (see number 10). By having a consistent willingness to think outside of the box and view things from a different perspective, I cultivate my own sense of optimism and possibility. Being my best self, affects my overall health and wellbeing, which also greatly impacts my symptoms and issues with EDS.

3. Learn to trust again – I tend to think that people have a genuine desire to be honest, trustworthy and will do unto you as you have done for them. However, I have found that sometimes those who you are closest to and do love you, can really hurt you.  It is very hard to trust anyone, when someone closest to you has hurt you deeply.  Finding a way to let go of the pain and trust again is therapeutic and healing.

4. Commitment – this has to do with reliability & accountability to those who are depending on you, including yourself.IMG_2641

5. Look from the outside in – I try to focus on being present in the moment.  I try to view myself from an outside perspective, especially with my kids, because even though our intentions may be good, and our actions and words seem justified, our mannerisms, the words we use, and our overall demeanor can give off a completely different feeling.  We all deal with our own internal chaos, especially those of us with chronic health issues or pain. By checking-in with how that may or may not be affecting others, we can ensure that our impact today matches our intentions in the long run.

6. Always telling the truth and not stretching the truth – honesty and integrity are crucial to building trusting relationships whether in business, friendship, marriage, or with family.  And why stretch the truth either, even just a little? Stretching the truth just a smidge, still damages trust in relationships.IMG_4882

7. Controlling my emotions & reactions amidst a tornado that is happening around me – Some of the best advice ever given to me was to learn to control my own reactions, despite the reactions of those around me.  No one makes you do anything or react a certain way.  Each one of us owns our own actions and reactions no matter what. It is easy with a chronic condition to try to excuse or justify behavior, but by being accountable, we become more reliable for others, and have greater control of our selves.

8. Not caring if people not like me or what I do – Haters are gonna hate and opinions are like b_tt holes (proper medical term – the anus), everyone’s got one.  Personally, I am more affected by the opinions of my family versus strangers. Unfortunately, there are some incredibly vindictive and malicious people in this world.  The more visibility you have, the more opportunity to cross paths with different people and you become more open to a whole lot of nonsense.

9. Facing fears and being willing to take calculated risks – fear can be paralyzing, but taking calculated risks is the only way to fulfill your aspirations.  I am far from a risk taker or thrill seeker by nature, but I have pushed myself to take small baby steps with things outside of my comfort zone.IMG_2504

10. Being ok with failure – I’ve learned to become quite comfortable with what many would consider failure.  Failures are learning experiences for me.  Most times, I have no idea what I’m supposed to learn from a failure or why life has put a certain challenge in my path, but changing my view on my failures has been freeing.IMG_4702

 

 

11. Learning to let go – Starts with being real with what is; for example, managing my OCD and accepting that I am very ADD, which means it’s hard to accept that I do not have control all the time.  Letting go of things outside of my control, or accepting what is humanly possible in a give day, is very challenging.

12. Have at least one mental dump each day – I need to regularly mentally dump the long-list of things I need and want to do.  Writing things down that are in my head at then end of the day, helps my productivity the next day.  I also benefit by doing something mindless, and quiet.  I need time to think, and covet my time alone.  Learn to be ok with taking time for self-care.

13. Learn my true priorities on a given day or at a specific moment – Know what matters first: for me it is my health. Many times I have chosen a workout over housekeeping, because working out is way more important to my overall health and well-being, and productivity in business. And as long as I workout, I have the strength and the stamina long-term to keep up with the housework and keeping things organized.

14. Focus on what I CAN do vs. what I CAN’T – This goes for anything in life, such as things I want to get done each day, as well as pertains to relationship struggles.  The cognitive effects from the whole shebang of issues that I deal with daily have proven pretty devastating.  However, I’ve had to learn to focus on very small, immediate steps to get anything done. It does not matter that I am just not as fast as I would like, or used to be.  There are countless times when I cannot immediately finish something I’ve started, because I just do not have the time.  For someone who likes to finish what I’ve started, THIS is so hard.  This is where focusing on what I can do each day versus what I cannot is imperative, as is number 20.IMG_4235

15. Find something that you like to do and is flexible (pun intended) – Sometimes a job is a means to an end and that is perfectly fine.  I think flexibility is key here and if you like what you do, huge bonus.  However, liking to work in general is great too, even if you do not like aspects of your job, but if it provides flexibility — priceless.

The idea of a physical spiral that also affects our mental and emotional health, all stemming from living with Ehlers-Danlos Syndrome and its comorbidities, can apply to any chronic health condition or disease. The only person who can really help each one of us climb out of the spiral, and go on to achieve our goals, is the person we face willingly in the mirror each day.

SOURCE;http://strengthflexibilityhealtheds.com/