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My son with Down syndrome is everything I never knew I wanted.

My son with Down syndrome is everything I never knew I wanted.

CNN PRODUCER NOTE     When Sabrina Moyer was pregnant with her son Colton, the last thing she considered was that her son would have special needs, let alone Down Syndrome. After he was born, Moyer came across a flood of unsympathetic statistics about children with Down Syndrome, but also very little information about the positives of raising a child with the genetic disorder.

For weeks she was in a state of mourning, she kept asking herself, “why me?” But after weeks of torturing herself over the news, she realized she was asking the wrong questions. “I should have been asking, ‘Why not me?’” she said. So she made a resolution to be her son’s biggest advocate, and started a Facebook group called Special Miracles to share the positive and inspiring testimonies of raising a children with special needs.

Colton, who is turning 2 years old in September, is an irreplaceable part of the family. “My family and I went through a tumultuous time, but we have banded together and overcome the pitfalls that life has brought us. Today, Colton is a happy, healthy child,” she said.

He and his older brother Remi, who is 7 years old, have an especially close relationship. One that she did not expect. “Sometimes I still think of the future and wonder how Remi will handle things when we go, but his devotion to his little brother is so great that I think these are thoughts of my losing control of the situation after I am gone rather than any real fear or worry,” she explained.

She expects great things from both her boys as they grow older. “Colton’s future is just as dazzling, and I have come to the understanding that it is not if he will achieve milestones, it is merely a question of when,” she said.
Jareen, CNN iReport producer

Colton was born on September 12, 2012.

He was a big baby. But I already knew that.

He had a full head of hair, and after months of heartburn, I knew that too.

He also had Down syndrome and that, I did not know.

Over the course of Colton’s life thus far, I have learned so many things. I have met; I have inspired; I have been inspired; I have cried; I have been mad; and I have cherished, with everything that I possess in me, my son, who has Down syndrome.

When we first started this journey together, there was nothing that could have prepared me for the heartache, the fear, or the suffering that would take hold of me when the doctor first spoke those words. And neither could the speaking of those words ever prepare me for the beauty, the joy, or the overwhelming love that I feel for my child.

The first things I think about when I wake up in the morning are my sons, and the last things that wonder across my thoughts as I am drifting off to sleep at night are my sons. They are the light of the universe to me, though they are as night and day to one another.

It was only after reflection however, that I was able to overcome the pain that Colton’s diagnosis brought to me and to my family. I had to fight to regain control of everything that I thought mattered most importantly in life.

It felt as if I had simply been struck down, flattened by some impossibly large tide that swept me far, far away from the place I thought I belonged to. But I was wrong.

Once I climbed out of that maelstrom, I found myself standing in stranger waters. But there was something different there. The light was just a little bit softer, the sounds a little bit louder. But the imagery, the landscape was constantly changing.

In one moment everything was clarity and sunshine, and in others it was hail and furious storm clouds.

I spent weeks shouting myself hoarse, screaming, pleading, begging with…the air maybe, to come and rescue me. I hid from the colors and I hid from the powerful landscape that was all around me because it was so fierce in comparison with where I had come from.

But eventually I had to stop hiding, I had to come out or I would have sat in the dark forever, never understanding or fully realizing what had just happened to me.

So I stepped out, and I faced the storm.

I clambered out of that dark pit and I brought myself up to face whatever dark and terrible thing was going to ruin my life for good here, in this strange place.

But nothing ever came.

No terrible monster ever shot out of the dark, no big bad beast ever showed its face. There was nothing in the dark places, nothing at all, but me. I was putting myself there, and if I wanted to be free of them, I just had to walk away.

So I did.

I realized that there would be stormy days with my son, as there would be stormy days with his brother. I also had to force myself to realize that there will be just as many sunny days, and I cannot abide by slinking about, saddening myself over an idea that has passed me by.
Particularly when the one that stuck was so much better.

I will raise my son to the best of my ability, with my entire family at my back. Together, we will give Colton everything that he will ever need in life, and in return, we will get his smiling face, his big brown eyes, and his love and affection.

Is this not what every parent expects of their children?

Remi will have the same opportunities, the same love and devotion, the same wonderful memories, and some of them will be exclusively between the two of them.

I could not have asked for a better family, we fit like pieces to a puzzle. There are some days when I look at my sons, either of them, and ask myself how I got along without them in my life. It’s stunning to think that Remi is already in school, and Colton is already nearing two years old!

My heart feels as if it were about to burst sometimes, picturing the road we have taken, and imagining the journey yet to come. I know that one day soon these moments will just be memories, and I will find myself astonished, horrified, breathless and out of words as I realize that my boys are grown up. Then I have to laugh, because this means that one day I will be saddened at the loss of these days.

How ironic that I will soon covet the memories that we made here when not so long ago I was a hopelessly emotional wreck, sobbing my fears and sadness that my youngest was just a little bit different.

With time comes wisdom, I suppose.

I have taken such a winding journey that I wonder if everyone does this, or if I happened to take the scenic route. So many ups and downs and confusing states of mind that I cannot count them all, but as I look back over them, I realize they were all leading to one place.

I was always going to be okay.

When I gave birth to Colton all I could think about, over and over, was how his life was going to turn out. How my life was going to be. Everything seemed so terrible, dark and ugly. I could not wrap my mind around the situation; much less fathom a happy story for us.

I understand now that it was only the shock talking.

Almost two years later I am the happiest I have ever been in my life, and my sons are entirely to thank for that. My husband has stood at my side and we have grown closer and stronger than ever before because of the fear we faced together.

Is this not what we strive for in life?

I am today a much stronger, wiser, educated individual, and I would never have made it this far without the shove that Colton’s birth gave me. I would never have dreamed of creating a platform like Special Miracles, not in a million years.

But now that I have, I am saddened to think that if Colton had been born as anybody else, I would never have done it. I would never have met all of the wonderful people that have become a part of my life, or made some of the friendships that only happened because I was thrown into that circle of people by his diagnosis.

It would be like losing a limb.

How has this never been a part of my plan to begin with?

Life, certainly takes some strange and unexplainable twists, but where you wind up is half the surprise, I suppose. It has been a magnificent journey for me thus far. It doesn’t make a lot of sense. How could something that started out so terrifying become this, which is so delightful that I simply do not have the words to describe it? I don’t have an answer for that, but I do have some words for any other parent who is going to go through it, or is in the process of going through it now.

That feverish, crushing despair will end. You will be happy again. Your child will light up your world, even if it takes time for you to see it.

Some events in life far outstrip the others when it comes to how deeply they affect us, and Down syndrome is high on that list, but it doesn’t bring the world to a stop.

Take it as a new direction, a fork in the road where you have a choice. You can be defeated, or you can defeat it. However you do that is entirely up to you, but there’s a reason that medical advances, medications, and laws pertaining to Down syndrome and other conditions like it are improving. More and more parents are choosing to fight, and along the way they are making strides in overcoming the stigmas and setbacks associated with raising a child with special needs.

The diagnosis does not define your child, they will define what it means to have Down syndrome as they grow.

And when the day comes where you wake up and realize that it just doesn’t matter as much as you thought it would, walk with your head high because you’ve done something many people claim they could never do themselves.

You’ve beaten the most frightening monster of all.

Your own fears.

source;ireport.cnn.com

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10 Myths Everyone with Autism is Tired of Hearing

Autism is a condition that is often misunderstood and misrepresented. While it continues to increase in prevalence, most of society doesn’t understand the condition and relies on hearsay and half-understood truths to form their perspectives.

Myths and misconceptions are not helpful for anyone living with autism, their families, or the people interacting with them.

Here’s some of the most common autism myths we hear and the truth behind them.

MYTH 10: AUTISM IS A NEW CONDITION

Truth: While the prevalence of autism is on the rise, autism is not a new condition. It was first described by scientist Leo Kranner in 1943. The earliest recorded descriptions of people exhibiting autistic behavior were documented in 1799.

MYTH 9: AUTISM IS CAUSED BY “REFRIGERATOR MOMS”

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This idea was created and popularized in the 1950’s when moms’ so-called “emotional frigidity” was blamed for the development of autism. It’s simply not true, and is totally unfair to the mothers of these special kids. Autism has nothing to do with parenting.

MYTH 8: AUTISM IS CAUSED SOLELY BY ENVIRONMENTAL FACTORS

The exact cause of autism is not known for certain. It’s believed that genetics plays a role in the appearance of autism. Studies have shown that parents whose first child has autism are more likely than the general population to have a second child with autism.

MYTH 7: AUTISM ONLY AFFECTS MEN

While autism is certainly more prevalent in men and boys, it isn’t solely a male condition. One in four people with autism are women and girls. It’s unclear what causes the uneven male-to-female ratio, but the current prevailing theory suggests that a nature vs. nurture issue makes diagnoses in girls and women less common.

Autism is a condition that is often misunderstood and misrepresented. While it continues to increase in prevalence, most of society doesn’t understand the condition and relies on hearsay and half-understood truths to form their perspectives.

Myths and misconceptions are not helpful for anyone living with autism, their families, or the people interacting with them.

Here’s some of the most common autism myths we hear and the truth behind them.

MYTH 6: AUTISM IS CAUSED BY VACCINES

There is no scientific proof that shows that vaccines cause autism. A 1998 study linking autism with vaccinations has been disproved and retracted. You can read more about childhood vaccines and their impact on child health in Childhood vaccines: Tough questions, straight answers by the Mayo Clinic.

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MYTH 5: AUTISM IS A MENTAL HEALTH CONDITION/MENTAL DISABILITY

Autism is a neurological disorder. Studies of people with autism show they have abnormalities in brain structure and neurotransmitter levels. It is not a mental disability, as people on the autism spectrum show a wide range of intellectual abilities.

It’s important to remember that “autism” is a spectrum and what is difficult for one individual is simple for another. Each case is different.

MYTH 4: ALL PEOPLE WITH AUTISM HAVE SAVANT ABILITIES

While people with savant abilities and autism often attract considerable attention, it’s not true that everyone who has autism will have these gifts. It is true that savant abilities have a higher prevalence among those with autism than neurotypicals, representing about 1 or 2 in 200 individuals in the autistic population. The spectrum of autism is wide and diverse, and simply having autism does not imply inherent savant abilities.

MYTH 3: REPETITIVE OR RITUALISTIC BEHAVIORS SHOULD BE STOPPED

One of the classic symptoms of autism is repetitive and ritualistic behaviors, according to the Diagnostic and Statistical Manual of Mental Disorders (DSM IV). While these behaviors can seem strange, the serve an important purpose of calming and reassuring people with autism.

Unless these behaviors are interfering with family life or prevent the individual with autism from functioning independently, they should not be stopped. Children might outgrow repetitive behaviors in time, but it’s not certain.

MYTH 2: PEOPLE WITH AUTISM CANNOT FEEL EMPATHY OR LOVE

It’s not that people with autism can’t feel empathy, but rather that they express it in ways that are harder for neurotypicals to understand. People on the spectrum often struggle with processing social signals and body language, which is the root of this insidious misconception.

Man comforting his sad mourning friend

A recent New York Times feature on a couple with autism has shown the world what many with autism already know: that autism doesn’t preclude them from being amazing partner, parents, or friends.

MYTH 1: AUTISM CAN BE CURED

While people with autism can be taught to cope with a neurotypical world, there is currently no way to cure someone of autism. Some with higher-functioning autism have even said they would not want a cure, because it is integral to who they are.

What other common myths and misconceptions are you tired of hearing?

source;http://blog.theautismsite.com

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Student With Down Syndrome Learns He Got Into College

This is the heartwarming moment a student with Down syndrome learned he had been accepted to college.

Heather Griffith, of Alabama, began filming the moment her son Keith, 19, prepared to rip open his acceptance letter on May 4.

‘Open it buddy, let’s see if you got in,’ she was heard, excitedly encouraging her son off camera. ‘Are you excited?’

This is the heartwarming moment a student with Down syndrome learned he had been accepted to college.

Heather Griffith, of Alabama, began filming the moment her son Keith, 19, prepared to rip open his acceptance letter on May 4.

‘Open it buddy, let’s see if you got in,’ she was heard, excitedly encouraging her son off camera. ‘Are you excited?’

'I'm so proud of you,' Heather Griffith said, taking her son into her arms for a big hug

Keith, very slowly and carefully began opening the envelope, tearing off pieces bit by bit until his mom urged him to ‘just rip it open, baby.’

The teen finally opened the letter and a smile spread across his face.

‘I got in’, he said quietly. ‘I made it.’

‘I’m so proud of you,’ Heather Griffith said, taking her son into her arms for a big hug.

‘I love you.’

Keith, who graduated from Satsuma High School in 2016, was accepted onto a program at the University of South Alabama, which helps students with disabilities learn how to live independently and acquire job search skills.

The teen finally opened the letter and a smile spread across his face. 'I got in', he said quietly. 'I made it'

And his family have big hopes for the 19-year-old who was his high school’s prom king, captain of the bowling team, and played football for their little league, Fox reports.

‘I had no idea what to expect when he opened it just hoping get for good news,’ his mum wrote online after posting the video.

‘The only reason I shared it is because I had some friends family that wanted to see his reaction.’

The footage has since gone viral with mor ethna 50,000 views and hundreds of comments from people across the United States praising the moving moment and congratulating Keith.

source;http://www.dailymail.co.uk

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Saturated Fat Gets Vindicated by Mainstream Media on Stunning Time Cover

For decades we’ve been told that saturated fat is bad for you, that it causes heart attacks/disease and that it makes you fat, but the latest research is proving this wrong.

I ran across a 2014 article from Time Magazine regarding saturated fat. You can read the entire article by clicking on the link at the bottom of this blog. I’m sharing quotes from and excerpts of it here.

=====Excerpt======

In a provocative cover story, Time said the 40-year demonization of saturated fat as the cause of obesity, diabetes, and heart disease was based on flawed data, citing a March 2014 Cambridge University study published in the Annals of Internal Medicine.

“It’s not saturated fat we should worry about,” said cardiologist Dr. Rajiv Chowdhury, lead author of the study. “It’s the high-carb or sugary diet that should be the focus of dietary guidelines.”

=====End of Excerpt======

=====Excerpt======

An international research collaboration led by the University of Cambridge analysed existing cohort studies and randomised trials on coronary risk and fatty acid intake. They showed that current evidence does not support guidelines which restrict the consumption of saturated fats in order to prevent heart disease.

For the meta-analysis, the researchers analysed data from 72 unique studies with over 600,000 participants from 18 nations. The investigators found that total saturated fatty acid, whether measured in the diet or in the bloodstream as a biomarker, was not associated with coronary disease risk in the observational studies.

within saturated fatty acid, the researchers found weak positive associations between circulating palmitic and stearic acids (found largely in palm oil and animal fats, respectively) and cardiovascular disease, whereas circulating margaric acid (a dairy fat) significantly reduced the risk of cardiovascular disease.

=====End of Excerpt======

Dr. Ravi Chowdhurty is the lead author of the study, and he states, “It’s not saturated fat we should worry about, it’s the high-carb or sugary diet that should be the focus of dietary guidelines.”

He along with a growing list of medical experts are “working to dispel the myth that saturated fat is the cause of obesity, diabetes, high cholesterol, and cardiovascular disease. A high-carb diet — particularly one high in sugar and refined carbs — is to blame for these illnesses.”

These conclusions were drawn after data from 72 published studies of more than 600,000 people from 18 countries was reviewed.

Cardiologist Aseem Malhotra has also stated that saturated fat is good for you. Dr. Malhotra states that “there’s no evidence that unprocessed saturated fat causes heart attacks, obesity or diabetes. If anything, he said consuming healthy fats (like those found in grass-fed meat, nuts, coconut oil, butter, olive oil, salmon and avocados) protect against these diseases.”

Investigative journalist Nina Teicholz, author of “The Big Fat Surprise” shares this view. She says “The true cause of heart disease and weight gain is a high-carb, sugar-rich diet. Eating too much refined carbs and not enough unprocessed fat is what has led to the tsunami of overweight, diabetic, sick Americans.

=====Excerpt======

According to obesity experts, a high-carb diet promotes disease and weight gain by causing pro-inflammatory spikes in blood glucose and blood insulin. By limiting those surges in blood sugar, we dramatically reduce inflammation, which is what fuels disease, they say.

Obesity expert Dr. Eric Westman said low-carb, high-fat eating plans like the ketogenic and Atkins diets not only spur rapid weight loss, but combat epilepsy, type 2 diabetes, and heart diseases.

Dr. Jeff Volek, author of The Art and Science of Low-Carbohydrate Living, told me the ketogenic diet can also improve mood and reduce inflammation. Volek said the LCHF ketogenic diet is beneficial both for elite endurance athletes and the average sedentary individual.

“There are very few people that a ketogenic diet could not help,” said Dr. Volek, who has followed the ketogenic diet for the past 20 years.

=====End of Excerpt======

As Dr. Westman says, “I tell my patients not to fear the fat, eat lots of fat. Fat makes you feel full. There’s no problem with fat. In fact, saturated fat — the fat that we’ve been taught not to eat — raises your good cholesterol best of all the foods you can eat.”

The more I’ve been reading and researching the LCHF/ketogenic way of eating, the more I’m realizing that what we’ve been told for the last 40-50 years is wrong, is not based on good science and is actually making us fatter and sicker and killing us.

I know I might sound like a fringe lunatic to some, but I urge you to also research the information that’s out there and find out for yourself.

Start with the people mentioned here and see where it takes you 🙂

Now I’m going back to my buttered hamburger topped with some cheese, sour cream and half an avocado on top of a bed of red and green spinach! Yum!

source;sparkpeople.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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5 Things I Learned During My Battle with Eczema And Hashimoto’s Disease

5 Things I Learning During My Battle with Hashimoto's Disease

When Carrie Vitt was diagnosed with Hashimoto’s disease, she was put on an elimination diet to cleanse her system that removed gluten and grains. Failing to find recipes that followed her strict diet guidelines and still were delicious, she began experimenting in her own kitchen. Through organic, unprocessed, grain-free foods Carrie has reversed Hashimoto’s, chronic migraines, IBS and eczema.

 

Sometimes life takes a turn and you end up on a path you never expected or even imagined. That’s what happened to me. In 2008 I suddenly developed hives from the neck up that wouldn’t go away. My hair began falling out. I became very depressed and spent many days in bed with ice packs on my face because my skin was burning, red and peeling.

I spent nine months going from doctor to doctor without anyone really listening to me or running tests. I finally found a doctor who investigated and ran the required tests. In the spring of 2009, he diagnosed me with an autoimmune disease called Hashimoto’s Thyroiditis.

The doctor’s prognosis was unsatisfying: I could take a drug to potentially manage my symptoms, but my thyroid would eventually stop working and I’d be on medications for the rest of my life. I decided to look for another path.

I turned to a nutritionist who helped me find the root cause of my disease. She prescribed a grain-free, nutrient-dense diet, gentle detox therapies and plenty of rest. After many years of hard work and discipline, I’m happy to say my disease is in full remission!

Today, I’m sharing with you the top 5 things I learned during my battle with Hashimoto’s Disease.

1. You have to find your root cause.

Hashimoto’s is an autoimmune disease, but the reason why the immune system is attacking the thyroid may be different for each person.

My husband was the one who figured out my root cause. We were sitting at home one evening (this was just a few months after I started working with my holistic nutritionist) and he said, “Carrie, none of this makes sense. You were totally fine and then suddenly your health went downhill.” He got out a calendar and started tracing back. He backtracked to the day I had an amalgam filling (improperly) removed and said, “Look! This was the day it all started.” I took this information to my practitioner, we did some testing, and what do you know – we discovered an overabundance of heavy metals. From that point on, we focused on gentle detox to aid the natural healing process.

Other reasons why your thyroid might not be working at the optimum level:

Viral infection

Bacterial infection

Stress

Too much radiation for your body (from cellular phones, wifi, etc.)

Toxicity

2. It’s best to avoid gluten when struggling with thyroid disease.

There’s no “80/20″ rule when it comes to gluten. If you’re gluten intolerant, you have to be 100% gluten-free to prevent immune destruction of your thyroid. The immune response from gluten can last up to six months each time you eat it!

To take that a step further, my nutritionist taught me that all grains can irritate the thyroid when you’re struggling with thyroid disease, so it’s best to completely avoid them. When grains enter the body, they cause the insulin levels in the blood to rise. When they’re eaten in excess over time, the body becomes overtaxed, and eventually the excessive grains cause inflammation in the body.

3. It’s important to reduce inflammation.

Many health issues and diseases can be caused by inflammation: allergies, arthritis (inflammation in the joints), atherosclerosis and all forms of heart disease (inflammation in the arteries or veins), autoimmunity (inflammation in any associated tissue, organ or gland being attacked by WBC), bursitis, cancer, diabetes and neurological disorders (ADD/ADHD, Alzheimer’s disease, multiple sclerosis, Parkinson’s disease; all indications of inflammation in the brain), and tendonitis (inflammation in the tendons).

Inflammation begins as the body attempts to eliminate various immune complexes (antigen-antibody complexes) and heal damaged tissue, often from chronic infection. Chronic infection can stem from an imbalance in the micro biome residing within the gut. A grain-free diet may help the body rest, heal, and reduce inflammation.

If you’re ready to reduce inflammation, where should you begin? The best place to start is by eliminating all processed foods. Yes, all. Eat traditionally prepared, real food – ideally foods free of pesticides, herbicides, and all chemicals. Foods derived from animals raised 100% on pasture or wild meats can be anti-inflammatory. I know this may sound extreme, but to give the body time to rest and heal, it needs to be nourished with the right foods. I’ve walked down this path and, yes, it can be difficult at times, but after seeing how foods can heal, I would certainly do it all over again.

5 Things I Learned During My Battle with Hashimoto's Disease

4. Vitamin A from animal foods is essential for proper detoxification.

Detox was a huge part of my recovery process (I explain this in detail in my cookbook). Yes, your body can naturally detox, but only when armed with the right tools. Unfortunately, in today’s world, a perfect diet isn’t enough – especially if you’re struggling with an autoimmune disease.

Foods, especially grass-fed animal foods, play a critical role in our ability to detox. Vitamin A is found only in animal foods.

“Your richest sources are liver (beef, lamb, duck, chicken), cod liver oil, butter, egg yolks, raw cream and cultured raw sour cream. It protects against the myriad of environmental toxins. It protects the body from damage caused by free radicals. Vitamin A is the only source of essential fatty acids that can make the claim of lowering levels of free-radical lipid peroxides. Other essential fatty acids actually increase levels of lipid peroxides. Lipid peroxidation is the process by which free radicals steal electrons from the lipids in cell membranes. This results in damage to the cells. We see this process in polyunsaturated fatty acids (those fatty acids derived from vegetable oils).

There is a HUGE misconception out there that vegetables, especially carrots and squashes, are excellent sources of vitamin A. This is absolutely false. Vegetables are wonderful sources of beta-carotene. But beta-carotene is only useful to humans as it is broken down and converted in the body to vitamin A by the body’s vitamin A stores. This presents a tremendous challenge and serious health problem for vegans. This also explains why most long-term vegans eventually present with disorders linked to liver congestion and why it is not uncommon to see jaundice in vegans. While most vegans have good intentions, they may not have been properly educated as to the significant role vitamin A plays in detoxification as well as in skeletal formation and thyroid function”. Kim Schuette, CN

5. Exercise, but not too much.

My body couldn’t handle intense workouts when I was healing from the disease (I would be in bed for days if I overexerted myself). So I took long walks as a gentle way to exercise and allow my lymphatic system to flush out.

This was difficult for me, but I had to realize that I was working to heal my body, not fit into my skinny jeans.

5 Things I Learned During My Battle with Hashimoto's Disease

Recovery doesn’t happen overnight. I wish it did! It takes the body time to slow down, reverse inflammation, reduce antibodies, and come to a place of health. So many times I felt like I took two steps forward and one step back, but in the end, it was all worth it.

If you’re struggling with chronic health issues, I encourage you to seek out a nutritionist, osteopath, naturopath, functional or integrative medicine doctor or nutritional therapy practitioner who can help guide you to better health. Even if everyone around you says it can’t be done, keep searching for answers. Follow your instincts – if you think it’s possible, you may be right. After my experience, I truly believe many diseases can be avoided or reversed with the right foods, detox and support.

source;http://hypothyroidmom.com

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KETO SPAGHETTI SQUASH SAUSAGE LASAGNA BOATS-DIET PROGRAM

Spaghetti Squash Lasagna Boats – everything you love about lasagna, chicken sausage, tomato sauce, ricotta, parmesan and mozzarella cheese only lower in carbs.

If you’re craving something decadent and delicious without overdoing the calories, you’ll love these delicious spaghetti squash boats filled with everything you love about lasagna – chicken sausage, tomato sauce, ricotta, parmesan and mozzarella cheese.

I even used whole milk mozzarella cheese because I wanted it to melt nice, I just used it in moderation. I’m reviving this from the archives because it’s a great, low carb, low calorie recipe for under 300 calories, 7 Smart Points if you’re on Weight Watchers, and it’s filling! It’s also gluten free and so delicious.

Spaghetti squash when cooked has a lot of liquid, so I find it helpful to place it in a colander over paper towels to help get red of the excess moisture and it works perfectly.

image: http://www.skinnytaste.com/wp-content/uploads/2015/12/spaghetti-squash-paper-towels-550×367.jpg

You can prep this ahead of time, then put it on the oven just before you’re ready to bake. If you happen to only find large spaghetti squash, you can place the mixture in a 9×9 baking dish instead of the shells. Enjoy!!

 

Spaghetti Squash Lasagna Boats – everything you love about lasagna, chicken sausage, tomato sauce, ricotta, parmesan and mozzarella cheese only lower in carbs.

Spaghetti Squash Sausage Lasagna Boats
Skinnytaste.com
Servings: 6 • Size: 1 boat • Points +: 8 pts • Smart Points: 7
Calories: 246 • Fat: 13 g • Protein: 17 g • Carb: 17 g • Fiber: 2 g • Sugar: 7 g
Sodium: 701 mg • Cholesterol: 71 mg

Ingredients:

  • 3 small to medium spaghetti squash (about 5 cups cooked)
  • salt and fresh pepper, to taste
  • 1/3 cup part skim ricotta cheese
  • 2 tbsp grated parmesan cheese
  • 1 tbsp chopped parsley (or basil)
  • 3/4 cup whole milk shredded mozzarella cheese

For the sauce:

  • 1 tsp olive oil
  • 1/2 onion, finely chopped
  • 3 cloves garlic, minced
  • 14 oz Italian chicken sausage
  • 14 oz (1/2 can) crushed tomatoes (I prefer Tuttorosso)
  • salt and fresh pepper, to taste
  • 2 tbsp chopped basil
  • 1 bay leaf

Directions:

Preheat oven to 400ºF. Cut spaghetti squash in half lengthwise and scoop out seeds and membrane. Season lightly with salt and black pepper; bake about 1 hour, or longer if needed on a baking sheet, cut side down. 
If you prefer the microwave, cut squash in half lengthwise, scoop out seeds and fibers and place on a microwave safe dish and cover. Microwave 8-9 minutes or until soft.

 

In a small bowl combine the ricotta cheese, 2 tbsp parmesan cheese and parsley.

In a large deep sauté pan, heat oil and add onions and garlic; sauté on medium-low for about 3 to 4 minutes, until soft. Add the sausage and cook, breaking up into smaller pieces until browned and cooked through. When cooked, add the crushed tomatoes and adjust salt and pepper to taste. Add the bay leaf and cover, reducing heat to low. Simmer 20 to 30 minutes, then add in fresh basil at the very end.

When spaghetti squash is cooked, let it cool for about 10 minutes keeping the oven on. If you microwaved this, preheat the oven to 400°F.

 

Spaghetti Squash Lasagna Boats – everything you love about lasagna, chicken sausage, tomato sauce, ricotta, parmesan and mozzarella cheese only lower in carbs.

When the spaghetti squash is cool enough to handle, use a fork to remove flesh, which will come out in spaghetti looking strands reserving the shells. Drain the squash on a paper towel to soak up any excess liquid, then toss with half of the sauce. Place the spaghetti squash back into the 6 shells and place on a baking sheet.

Top each with remaining sauce, 1 tbsp ricotta cheese mixture, and 2 tbsp mozzarella cheese.

image: http://www.skinnytaste.com/wp-content/uploads/2015/12/Lasagna-Spaghetti-Squash-Recipe-550×550.jpg

Bake in the oven for 20 – 30 minutes or until everything is hot and the cheese is melted.
source;skinnytaste.com

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How to Recognize Auditory Processing Disorders in Children

boy taking hearing test

What is an auditory processing disorder?

The simplest way to explain what defines an auditory processing disorder (APD) is to realize the role of the central nervous system, or CNS, in APD. The CNS malfunctions and causes an uncoordinated relationship between the ears and the nervous system’s ability to fully process sounds and language.

APD causes issues with:

  • Understanding language
  • Remembering information
  • Processing conversation

However, several other disorders share these hallmark symptoms. Similar disorders that might get mistaken for APD include:

  • Autism
  • Attention deficit and hyperactivity disorder (ADHD)
  • Developmental disorders

To understand how to differentiate APD from other disorders, it helps to recognize that it does not stem from any other greater cognitive or language disorder. Although these other issues might exist in conjunction, many children with APD don’t experience any other disorders.

How is a child diagnosed with auditory processing disorder?

APD is a complex and nuanced disorder, so best practice requires performing an accurate and detailed assessment of any child presenting with the following symptoms:

  • Difficulty discerning words in a noisy environment.
  • Problems following directions.
  • Issues differentiating between speech and other sounds.
  • Problems spelling or reading.
  • Understanding information in the classroom.

These symptoms in and of themselves don’t necessarily indicate APD, so perform a careful and in-depth evaluation of the entire spectrum of issues a child with suspected APD might potentially experience. A multidisciplinary team working together can most fully identify and explain APD’s symptoms. Professionals usually involved in diagnosing the condition include teachers, psychologists, speech-language pathologists and audiologists.

Effective treatment doesn’t always follow a clearly defined path and each child often responds quite differently. Some children seemingly recover fully, while others operate with some degree of difficulty due to APD for their entire lives.

source;http://blog.asha.org

Stella Fulman, AuD, CCC-A, is co-founder of Audiology Island, a private practice on Staten Island. She specializes in patient advocacy and education regarding hearing services. sfulman@audiologyisland.com

Zhanneta Shapiro, AuD, CCC-A, co-founder Audiology Island, also provides pediatric services at the NYU Langone Medical Center and serves as adjunct professor at the City University of New York Graduate Center at Brooklyn College. zshapiro@audiologyisland.com

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7-Year-Old Girl Explains Down Syndrome: ‘It’s Not Scary, It’s So Exciting’

The mom wanted to speak on behalf of her two children – her 8-year-old son, Joaquin, and 7-year-old daughter, Sofia – who have the genetic disorder.

But this year, she decided to let her daughter speak for herself.

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Sofia, age 7.

SOFIA-SANCHEZ.COM

One day, while laying on her daughter’s bed with a cellphone in hand, Sanchez spotted the perfect opportunity to ask Sofia about Down syndrome.

“Little miss, do you have Down syndrome?” Sanchez asked.

“Yes, I do have Down syndrome,” Sofia stated matter-of-factly.

Sanchez continued, asking Sofia what Down syndrome is. Sofia explained that it’s in your “blood.”

“Down syndrome is in your blood? Does it make your blood special?” Sanchez responded.

“Yeah!” Sofia exclaimed.

“Is Down syndrome scary?” Sanchez then asked.

“No, it’s not scary; it’s so exciting!” Sofia said, while motioning with her hands.

The mother of four from Rocklin, California, couldn’t stop smiling as she listened to her daughter’s cute responses.

She wanted to share a little joy with her friends, so she posted a video of the minute-long conversation on her Facebook page. And to her surprise, the video went viral with more than 5 million views.

Sanchez’s inbox has been flooded with messages.

“I’ve read message after message saying, ‘It’s so inspiring to hear about someone who loves themselves so much,’” Sanchez told CBS News. “I realized that I don’t think people hear enough from people with the disability describe just how great they feel about themselves.”

Most moms say their children are special, but Sanchez says Sofia is really special.

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The Sanchez family poses for a picture.

SOFIA-SANCHEZ.COM

After Joaquin, her third son, was born with Down syndrome, Sanchez said her family was inspired to help other children like him. During Christmas, they donated to the Reece’s Rainbow Down Syndrome Adoption Grant Foundation, an organization that helps find families for orphans with Down syndrome and other special needs by raising funds for adoption grants.

That year, the Sanchez family sponsored a little girl. But after seeing her picture, somehow, she just couldn’t get the image out of her mind.

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This is the photo the Sanchez family saw of baby Sofia when they were sponsoring her through Reece’s Rainbow.

SOFIA-SANCHEZ.COM

“Why don’t we just adopt her?” Sanchez thought, while talking it out with her husband.

Her husband agreed – the little girl needed to be a part of their family.

When she was 16 months old, the family picked up the child from an orphanage in Ukraine, and the rest is history.

“I can’t imagine my life without her,” said Sanchez, gushing over her little girl.

Sofia is a bundle of energy.

She loves to act, dance, play soccer and do other things girls her age love to do.

But she also likes to speak up for “her people,” Sanchez said.

Sure, she experiences a range of emotion – sometimes she’s sad, angry, stubborn, competitive – but at the end of the day she “loves her life and she loves herself,” Sanchez said.

source;http://www.cbsnews.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