Tag Archives: autoimmune disease

What exactly is POTS!!!!!!!

WHAT IS POTS?

Dysautonomia is an umbrella-term used to define conditions caused by a malfunctioning autonomic nervous system. Postural Orthostatic Tachycardia Syndrome (POTS) is a form of Dysautonomia. POTS is most often seen in women of child-bearing age but can and does affect people of all different ages, genders, and races. Just like all chronic illnesses, the degree of severity can range from mild to completely disabling. Approximately 25% of patients with POTS cannot work, go to school, or keep up with daily tasks due to their condition. The autonomic nervous system is responsible for every bodily function you do not have to think about at this very moment. You do not have to tell your heart to beat, nor do you have to instruct your lungs to inhale or exhale, as both are done automatically. With POTS, there is dysfunction with these automatic functions. The autonomic nervous system is responsible for so many bodily functions which is why no two patients with POTS are ever exactly the same.

The symptoms seen in POTS can vary greatly but an increase in 30+ bpm (40+ in adolescents), or a HR that goes above 120bpm, within the first 10 minutes of standing is seen in all patients. This increase in heart rate is responsible for the “T” in POTS: Tachycardia. Tachycardia is defined as an abnormally high heart rate. The average resting heart rate is anywhere from 60-90 (some athletes experience bradycardia, or low heart rate). This average resting heart rate would remain the same when going from sitting to standing in a healthy individual, or would change slightly. With POTS, the heart rate increases as the body’s way of trying to compensate for the blood that is starting to pool in the lower extremities. Our heart rates increase to try to work extra hard to pump our blood back to our heads, with little success.

This increase in heart rate is diagnostic criteria for POTS and is seen with or without a decrease in blood pressure. It is a common myth that patients with POTS always have low blood pressure but that’s not accurate. In fact, the increase in heart rate can be accompanied with a stable blood pressure, a drop in blood pressure, or even an increase in blood pressure. Orthostatic hypotension is a different form of Dysautonomia in which the blood pressure drops when standing but the heart rate remains the same.

Although POTS is often characterized as a fainting disorder, it can more accurately be described as a presyncope (the feeling of lightheadedness, dizziness, and confusion experienced right before one faints) condition. In fact, fainting and a decrease in blood pressure are not diagnostic criteria for POTS.
POTS was termed in 1993 but several medical and historical documents describe patients with POTS symptoms under different diagnoses including “soldier’s heart.” Current research is suggesting that POTS is an autoimmune condition. An autoimmune condition means that the body’s immune system is attacking the body itself instead of intruding threats. More research is necessary in order to understand more about POTS and eventually find a cure!

For me personally, I have experienced all the symptoms, but first started with Vertigo and ear pain, hearing loss, visual changes, dizziness, nausea vomiting, Took 57 Dr’s to correctly diagnose me correctly, Started with autoimmune disease of the ear, then it seemed it snow balled out of control as if the autoimmune disease was attacking my Brain and then my body. I had Chemo with zero results and IVIG which is intravenous immunoglobulin for 9 months 5 days a week 7 hours a day. Didn’t work! So as of now there is no cure just symptom control.

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A request from your chronically ill friend: What I need when we talk about my sickness.

A request from your chronically ill friend: what I need when we talk about my sickness.

When I meet new people, I often struggle to explain what I need. This is it.

When I was 14, I woke up with a fat face.

I was sick with a fever higher than I had ever felt. My face felt like a sumo wrestler had crammed a cantaloupe into my ear.

My mom took me to the emergency room in the closest town to our family’s remote lake house in North Carolina. Receptionists shooed me in, nurses injected butt shots, and doctors gave me doe-eyed stares. They had no idea what was wrong with me.

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This routine of waking up suddenly sick, with a fat face and a spiked fever, continued for years.

Finally, when I was 16, doctors handed me a diagnosis and a pill regimen and told me I might be sick forever.

I was young enough that my pediatric doctor called to give my mom the diagnosis over the phone. The most dramatic part happened before the diagnosis, though, when they told my mom that they had somehow lost my eight vials of blood (which had taken hours of sweat and tears and people holding me down to get). Otherwise, the phone call was short and I could hear the words through the phone my mom held up to her ear.

“I’m so sorry,” the pediatric doctor said to my mom. As if we knew anything about an autoimmune disorder called Sjögren’s syndrome, with hallmark symptoms of dry eyes and a dry mouth, and why we should possibly join the doctor in feeling sad.

Now, more than 10 years later, I’m living fairly well with this autoimmune disorder.

But still, when I meet new people, I struggle with how to explain what I need. Part of my introduction to new people has to include these words: “I’m sick.” And that’s not easy.

So hello, new friend. Here’s what I need you to try to understand when we talk about my life with a chronic illness:

1. I need you to let me have my green couch moments.

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After that first day at the hospital in North Carolina, they sent me home without answers and I slept on the green couch at my family’s lake house for days. I remember feeling sad, watching my cousins jump off the diving board at the end of the dock.

Photo via iStock.

But I mostly remember feeling sad about how my family looked at me. They all had the saddest eyes, like they knew something about my future that I couldn’t comprehend at the age of 14.

For some reason, I’ve continued to have a lot of different green couches over the years in various houses and apartments. Sometimes when my sickness takes over, I have to spend days — or weeks — recovering on my green couch. I need you to let me stay there to rest and wait for Netflix to ask me, “Are you still watching ‘Friends’?”

2. I need you to show up.

No one knows what tomorrow holds. But if my tomorrow puts me in the hospital, I need you to come. I need you to show up. Sure, you can bring me flowers, but I really just need you to be there at my bedside, hanging out.

In high school, when my hospital visits lasted for 12 or 14 days of sucking on lemons in the pediatric wing to trigger my salivary glands and going for walks wheeling my IV bag, I remember the friends who showed up. And I remember the friends who only came after my parents bribed them to sit with me for a couple hours so they could go home to shower.

People were afraid. I get it. I was afraid, too.

3. I need you to stop asking why doctors can’t fix me.

The autoimmune disorder that I have is chronic, meaning there isn’t a cure, just like many other people in the world with chronic illnesses. I know it’s confusing — you come down with a cough and you go to the doctor to get better.

For me, it’s not that simple. I take a couple of medications that help tackle my individual symptoms and improve my quality of life with pain management, but that’s it. That’s all doctors can do at this point.

Please stop asking why. Doctors don’t know. I don’t know.

4. I need you to try to see my invisible pain.

All those years when I woke up with a fat face were just my invisible illness trying to make a guest appearance for one episode. Mostly, my body suffers in ways that you can’t see.

Photo via iStock.

The more visible symptoms happen in cold weather when the blood rushes away from my hands and feet. This is when you watch in amazement because my white hands look like a dead person’s. I need you to know that the invisible pain hurts just as bad as the visible pain.

5. I need you to stop asking me how I feel today.

Some days, it’s a big deal to just get out of bed because my joints ache and after even 10 hours of sleep, I still feel like I have a hangover. My right foot and my back feel broken, and my dry eyes build a white film on my contacts that feels like I’m watching the world through a dirty fish bowl.

When you ask me how I feel today, the answer is complicated. The list of pain that’s both inflamed or subsided is longer than we need to hash out. And sometimes the answer to your questions makes me sad, grieving the loss of a dream of a pain-free life I think I deserve.

6. I need you to let me weep in my mom’s arms, even as a grown adult.

Next month, I turn 27. Recently, I wept in my mom’s arms in a shaking way that startled even me. It was the day I got another doctor’s bill for hundreds that I couldn’t afford, and I wasn’t sure if I could even go to my specialist appointment because it might mean I couldn’t pay rent or buy groceries for a couple of months.

My health insurance doesn’t get it. They cover so little, deeming appointments and blood work as “medically unnecessary.” But truthfully, nothing about this sick life is easy to handle, even as a pretty independent adult. I need you to let me weep from the deepest places and not tell me to just shake it off.

7. I need you to stop telling me I can’t.

I told my parents I wanted to go on a mission trip to Africa. Instantly, they said, “You can’t.”

I’ve heard these words before, about studying abroad or becoming an elementary school teacher, with planes and buildings and countries with germs lurking behind every corner. Their advice comes from places of love. But I can’t have you joining in on this whole “You can’t” chant.

Until a doctor gives a definite “No, you can’t do that or go there,” then I need you to invite me to go places. I need you to challenge me and dream with me.

8. I need you to let me be stubborn.

I have a cousin who’s searching for a diagnosis for something autoimmune right now. My biggest prayer for her is that she stays stubborn, even after she knows she’s sick. She studied abroad before she got sick, before anyone tried to tell her she can’t.

The last couple of years, I moved to a new time zone, even when some told me I couldn’t. You might get to know me now and want to protect me in a plastic bubble everywhere we go. Please don’t. If you’re planning a trip somewhere exotic, invite me. I’ll tell you if it’s too much.

Photo via iStock.

Let me wrestle in the dark with my own stubbornness, just like when I was a little girl and insisted on riding my new bike with shiny tassels on the very first night, even though it was too big and pitch dark outside. I might fall down and get hurt, but I promise you I’ll learn from stubbornly ditching the training wheels in the dark.

9. I need you to tell me to stop staring at that hospital waiting in the sky.

I live in Dallas with a clear view to Baylor hospital in the skyline. Sometimes, while I’ve sat by the pool at my apartment, I’ve caught myself staring for too long at the hospital waiting in the sky for my future arrival.

You might be familiar with how we tell the “sick narrative”: sick, sicker, dying, gone. I have a higher risk of lymphoma and other complications, but this doesn’t mean that’s definitely how my story will end.

So if you catch me anxiously staring at my scripted future, stop me. I need you to remind me that the story can twist in so many directions, especially with technology and modern medicine that completely shatter traditional death sentences.

10. I need you to let me change the world today. Now.

The best (and worst) part about being sick: It moves me into action. I don’t have time to wait. I probably quit jobs sooner than you would or chase after dreams in frantic ways while you put yours on the back burner. I also don’t have time to waste.

It’s scary and exciting all wrapped into one. I need you to help me figure out how little me plays a part in this big story. Let me fight for things that matter today because tomorrow is just a gift.

11. I need you to love me like the 80-year-old grandma I am.

I’ve finally found a pill box that fits all the vitamins and medications that I need to sort out for designated times each day. My dream night is one cozied up and warm on the couch, followed by a 9:30 bedtime. Sjögren’s means I don’t produce enough tears, but if I did, I would cry while laughing at how many times I have to go to the bathroom because of all the water I have to drink to stay hydrated.

Yes, me and your 80-year-old grandma probably have more in common than you and I do. I’ve completely accepted this fact. Especially since I’ve been 80 since I was 16.

So love me like a grandma! Stop inviting me out to all-nighters and saying it’s so funny how I go to bed early and love warm socks. It’s not funny or cute. It’s who I am.

My autoimmune disorder is in no way categorized as “the worst.”

Believe me, people suffer every day with far worse, much more incurable diseases than mine. Some days, my illness feels mostly annoying, like an accessory I carry around and must remember to bring with me when I leave the house.

But I hope you will one day meet one of my best friends, a woman who has learned to love me and my sickness. She remembers little details, like how I lack the saliva required to eat dry pretzels filled with dry peanut butter. She figures out how to eat each pretzel with a huge swig of water so I won’t choke, and she does it with me, too. Together, we laugh.

She sits with me on the green couch for Netflix marathons when I’m sick. And together, we cry.

That’s what I want, what I need, and what I want you to know about me, friend: We all have our stuff, and this is mine.

I thought Ashley’s story was exactly what we all wish we could say to family and friends,  I wanted to state a few extra things I would like to add to this article.

Stop telling me to stop trying to find a cure!  I am not going to just take this laying down.  I need to research for my own sanity, start a support group, start a blog, to keep me busy and active with my brain.

Stop telling me a new treatment you heard of from a friend of a friend that you know will cure me.  Including coffee enemas.  or some crazy diet or pyramid business that supplements will cure me.

Stop telling me to stop Gluten, been there done that.

Stop judging how I should feel on certain days because it may interrupt our plans.

Stop saying you will help out when needed and never come by.

Stop telling me to not  be sad, or depressed with my diagnosis.  Some days, I just can’t be positive.

Kelly Helsel

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Positive Thinking doesn’t work, Positive Action does

Positive Thinking Doesn’t Work – Positive Action Does
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Mind over Meniere’s via mail88.atl11.rsgsv.net

May 26 (8 days ago)

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Positive Thinking Doesn’t Work – Positive Action Does

Living with chronic illness is hard in the age of the 24-hour news cycle.

The never ending circus of tragedy, crisis, and fear is hard to avoid. Somehow, we’ve decided that the darkest aspects of humanity are what want to see, and all the time.

It finds us on Facebook and Twitter, where the celebrities we follow, and our family and friends, parrot the fear.

We’ve never been more connected, but so many people just use that connection to spread negativity. You see it on social media, in the comments on YouTube, and on blog posts and articles. Everyone’s a critic now.

It’s way too easy to see the world as a depressing place because, from a lot of angles, it is. But it’s also beautiful, and finding a sense of happiness is so important, especially when you have a chronic illness.

I believe in the power of positive thinking, but I also know it’s not practical advice. Happiness and positivity require positive action.

“Action may not always bring happiness, but there is no happiness without action.” – Benjamin Disraeli

So today, I offer you a set of actions that can help boost your happiness. It is possible to live well with chronic illness; it just takes a bit more work.
1) Avoid the news:

While I don’t believe you have to practice positive thinking, you should make an effort to avoid negativity.

The news today is like a fire hose of sadness. It’s a constant barrage of negativity, hopelessness, and despair, without ever offering any solution. Every now and then we’ll see a positive piece thrown in for good measure but the overall trend is unmistakable, and it’s impacting you whether you realize it or not.

“News is to the mind what sugar is to the body.” – Rolf Dobelli

Just imagine what your life might look like if it was the opposite were true. If 99% of the news covered the triumph of the human spirit, our capacity to help others, and our greatest achievements, while only 1% was negative. I know I would be a happier person.

And while it may not be possible to avoid negativity altogether, you can get half way there by choosing to avoid the news. If anything truly important ever happens, you can be sure you’ll hear about it, one way or another.
2) Listen to something inspiring:

It’s important to cut out the negative content you consume, but you will also probably need something to replace it. It’s good then that we have more choices than we’ve ever had before.

The internet has given us access to an unfathomably large new source of information, content, and entertainment. Streaming services like Netflix, YouTube, and Amazon, have changed the way we watch TV, giving us access to the shows we want when we want. But in my opinion nothing is more powerful than audio entertainment, and we happen to be in a golden age of audio.

The internet has not only breathed new life into audiobooks but has also created the opportunity for anyone to have a radio show, called a podcast, that can reach millions of people. Over the last few years, podcasts have exploded in popularity, quality, and quantity, and there is now something for everyone.

Audio is so powerful because it forces you into the present moment, holding your focus and attention, as it activates your imagination. I find that listening to an inspiring story, audiobook, or interview, works wonders on my mental state when I’m struggling with Meniere’s disease.

Some of my current favorite podcasts:

This American Life – The most popular podcast in the US. Highly produced radio documentaries featuring inspiring storytelling on a new theme each week.

Radio Lab – “Radiolab is a show about curiosity. Where sound illuminates ideas, and the boundaries blur between science, philosophy, and human experience.”

Serial – “Serial tells one story—a true story—over the course of a season.” I highly recommend season one. It’s fantastic!

The Tim Ferriss Show – An interview show where Tim deconstructs top-performers in a wide variety of fields to extract the tools, techniques, and routines they use to be so successful.

Reply All – An amazing storytelling show about the weird world of the internet.

Audiobooks: You can use this special link to get 2 free books on Audible (it’s part of Amazon.) You have to sign up for the 30-day free trial of their paid subscription service, but you get to keep the books, even if you cancel before the 30 days are up!
3) Surround yourself with positive people:

We may not get to choose our family, but we can choose to spend time with the right people.

The motivational speaker Jim Rohn used to say, “You are the average of the five people you spend the most time with.” Who are the five people closest to you? Do they support you and your ideas? Do they make you laugh? When you are with them, do you feel like you matter? Or do some of them drain energy, and fill your life with constant and unnecessary drama?

“Let go of the people who dull your shine, poison your spirit, and bring you drama. Cancel your subscription to their issues.” – Dr. Steve Maraboli

Living with a chronic illness is hard enough. You don’t need the added headache of emotionally toxic people. You deserve to be supported, loved, and inspired, and you have a say in whether that happens or not.

Keep the people who truly care, who motivate and uplift you, close to you, and try to spend less time with anyone who brings you down.
4) Hand write a thank you card to someone you love:

If you are already lucky enough to have positive and supportive people in your life, let them know how much they mean to you.

There is something deeply personal about hand writing a sincere and heartfelt thank you note to someone special. It’s such a simple act and one that can have such profound impact on your personal happiness.

“It is not happy people who are thankful. It is thankful people who are happy.” – Unknown

First are foremost, you will strengthen your relationship with that person. Let them know that you care about them, and that having them in your life makes a difference.

It’s also a great way to practice gratitude. When you live with a chronic illness, it’s very easy to get caught up in self-pity and resentment. You may be limited in what you are physically able to do, and that can be hard to accept. But hand writing a heartfelt letter forces you to find and focus on something positive, someone you are grateful for, and gives you the opportunity to express it to them directly.

I challenge every single one of you to hand write and send a thank you card to someone important in your life today. It’s such a simple thing to do, and it will immediately put you in a better mood.
5) Do what you can to help others:

When you live with a chronic illness, you are predisposed to hardship, adversity, and pain. Suffering is usually a part of the deal. But you can alleviate your own pain and suffering, by alleviating the suffering of others. There is nothing in this world that does more to raise the human spirit, than helping others in need.

“Life’s most persistent and urgent question is, ‘What are you doing for others?'”- Dr. Martin Luther King Jr.

Helping others can be as simple as being there to listen to someone in need. You may not be able to solve their problems, but you can be the one to understand their pain.

You can share your story with others, to inspire, or teach, or to help people avoid the same mistakes that you’ve made. You can start a blog for free at wordpress.com, or even just leave a comment on this page. Starting Mind Over Meniere’s has been one of the most rewarding decisions I’ve ever made.

“No one is useless in this world who lightens the burdens of another.” – Charles Dickens

You can also volunteer your time for a charity that means something to you, helping them make a difference by spreading the word, raising money, or doing whatever it is that you can to help the cause. Volunteering for the Vestibular Disorders Association has been a wonderfully rewarding experience for me, and one that I recommend highly.
6) Achieve a small win:

When you live with a chronic illness, odds are, you are going to have difficult days. And it’s hard to feel positive when you’re too sick to accomplish anything important, or anything at all for that matter.

But even on our worst days, it’s rare to be completely incapacitated the entire time. One of the best things you can do is focus on achieving a small win.

What this involves, exactly, is going to be different for everyone. But you can always make the choice to take some small action, to achieve some small obtainable victory, and it can make all the difference.

“If opening your eyes, or getting out of bed, or holding a spoon, or combing your hair is the daunting Mount Everest you climb today, that is okay.” – Carmen Ambrosio

For me, that might mean going for a walk when I don’t feel like leaving the house, or meditating if I’m too fatigued. It could mean eating a something healthy when all I want is comfort food. Sometimes, if I’m working on a book or a blog post, it means just writing a couple of sentences. More of the time, however, it means allowing myself to rest without feeling lazy or guilty.

Whatever small win is within your reach today, take it. It will make you feel better.
Conclusion:

You don’t have to practice positive thinking to be a positive person. It can help, sure. But nothing beats positive action. The things you choose to do make just as much, if not more of an impact, than how you choose to think. And when you act first, the mindset follows.

“The measure of who we are is what we do with what we have.” – Vince Lombardi

I hope you will give some of these suggestions a try. You didn’t choose to live with a chronic illness, but you can choose what you’ll do next. I hope you choose something positive.

Written by Mind over Meniers.

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25 Secrets of People with chronic Illness

25 Secrets of People With Chronic Illnesses
Elisabeth Brentano By Elisabeth Brentano Feb 11, 2016
This article discusses aGeneral topic in our community

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Nearly 133 million Americans have some sort of chronic illness, and that number is expected to reach 157 million by 2020, according to data on the Invisible Illness Week website.

From exhaustion to migraines to fatigue, many chronic illness symptoms aren’t visible to the naked eye, which makes them even more difficult to diagnose — and understand.

With a growing number of people affected by chronic illnesses like fibromyalgia, arthritis, Lyme disease, Crohn’s disease and diabetes and more, it’s important to both raise awareness and let others know how to respond to the needs of individuals living with these conditions.

So we asked readers in our Facebook community what truths about chronic illness they wish others understood. Here’s what they had to say:

1. “Some days you can function, some you can’t.” —Amber Wandmaker

Woman on beach

2. “I’m not lazy. I’m in pain, exhausted and quite possibly depressed because I feel useless and cannot make others understand what I go through on a daily basis.” —Jodie Farber Brubacher

3. “It’s not in my head.” —Christine Olson Smith

Writing on notepad

4. “When I’m pushing through… I’m really pushing myself too hard.” —Debra Declue

5. “Just because you can’t see it doesn’t mean it’s not real.” —Rhonda Miller-Solomon

Magnifying glass, close-up, cropped

6. “Accepting the fact that I will never get better is what has allowed me to live my life and continue to work towards my goals without waiting to ‘get better.’” —Joan Elizabeth

7. “A good day for people with chronic pain… is often just ‘less of a bad day.’” —Ann Webb Bradford

8. “Being immune compromised/suppressed isn’t a game; it’s dangerous. When I say I can’t get sick, I’m not being paranoid; I’m being careful. Life’s no good when you’re dead!” —Arianna Nyswonger

9. “I’ve become an expert on hiding my pain from everyone.” —Beth Cox Harrell

Woman looking through blinds

10. “Chronic illness often comes in multiple versions; treating one can mean making another one worse.” —Zoann Murphy

11. “I can’t remember what ‘well’ feels like.” —Sandra Williams

12. “Good can change to bad in a matter of minutes. There are good days and bad days, but there are also good hours and bad hours, good minutes and bad minutes. Chronic illness does not see or understand time.” —Deanna Guarino-Embry

Clock on wall

13. “There’s no such thing as ‘too young;’ we can’t just show out bodies ID and tell the illness to come back in 10-20 years!” —Jen Andrew

14. “It doesn’t get better. It is this way. Every day. Forever. If you’re in my life, please don’t ask me if I’m feeling ‘better’ today.” —Wendy Rose

Old man feeling sick

15. “We shouldn’t be treated like drug addicts or hypochondriacs and denied the care we truly need.” —Amy Brandborg

16. “I live a double life. What you see when I am at work: someone who is well put together, always dependable, smiling, will always tell you she is doing fine. My reality: I’m a mess, in so much pain, my smiles are forced, sometimes I have to find a quiet place to cry. But it’s much easier for me to fake it because coworkers don’t want to hear my truth day after day.” —Amber Weller

Woman in front of mirror

17. “A ‘good attitude’ doesn’t take away pain or improve mobility. I am still human and I will have days when I just can’t drum up that ‘good attitude.’” —Vicki Gomes Petilli

Woman standing in field barefoot

18. “I didn’t do this to myself. I didn’t not pray hard enough or believe hard enough. I didn’t not eat well enough or not exercise enough.” —Barb Silvestro

19. “It hurts to be forgotten because we have said no to so many events, parties, family gatherings, shopping trips, etc. I want them to still ask just so I know they are still thinking of me.” —Victoria Sinclair

Upset woman with grey hair

20. “There is no magic cure. I don’t want to be sick, but this is my reality. I can’t wish it away or cleanse it away or take supplements because your sister’s boyfriend’s mother did.” —Christina Marroquin-Mauricio

Spoon with heart in it

21. “People don’t choose to feel horrible every day and lose the person they used to be.” –Caitlin Hoechst

22. “What I can do one day I might not be able to do the next.” —Becky Rider

23. “I’m not making it up. If I wanted to fake an illness, I would choose something that people would believe!” —Faith Merryn

Upset man

24. “My downtime doesn’t mean I’m depressed or isolating. It’s a time for me to heal and recharge.” —Kate Wilhelmi

25. “My illness does not define me, my dreams or who I am!” —Judy Fox Berryan

Woman on the beach

What’s one truth about chronic illness you wish others understood? Let us know in the comments below. And be sure to visit our new Facebook page, Chronic Illness on The Mighty.

All images via ThinkStock

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My thoughts of 2015

As this year comes to a close, I would like to reflect on this past years events, feelings and New Years resolutions.  To begin with the starting of the support group I hope has been such a gift to the members as much as to myself.  The support group some days larger some days smaller groups but it seems even if it’s just a few, it was meant to be just the few of us.  The biggest gift is the understanding that we all are experiencing different and some of the same symptoms, and we are all feeling alone in this disease.  I have also had the gift of getting to know the other side from the spouses on what they go through, which has helped me in my own life.  I have also learned the lack of communication between Doctors is our biggest hurdle and lack of public recognition of this disease with family, friends, co workers and the general public.  Example:  If I share I have a Vestibular dysfunction autoimmune disease, people will say “oh” and continue there own conversation, If I said I had a broken leg, MS or cancer, the response would be completely different.  Not because people are rude but because people don’t understand or have never heard of this disease.

This year has been has been extremely difficult for me, My symptoms worsened, I am disabled and yet I am so grateful that I am still mobile and have my family to help me when needed.  The biggest change in my health has been the visual changes on a regular basis and my drop attacks ( I fall with out any notification) There is no bracing yourself, or putting your arm up for protection, I just do it, end up where ever I fall, then instantly want to throw up.   Then I feel so tired, like I can’t get up, function, takes me a day or so to recover, forget the bruising, knots on the head or sore body, it’s the cognitive and fatigue that is the hardest to recover from, almost feels like getting run over by a truck.  But I feel I am still trying to learn my limits and if I push them I pay.  But for me, the support group has become my safe place, my place I can be my self, say how I really feel and cry if I need to with out any judgement.

This next year my goal is to increase the group size even just a little,  write letters to all the Doctors involved in our care explaining what patients with our illness go through and need from them.  I would like to establish a newsletter to send to them on a regular basis, I would like to raise awareness about Vestibular dysfunction as much as a I can.  I would also like to continue having some speakers for different aspects of our disease, we know there is no cure, but just to help us understand what’s happening to us.  To provide support and education for us. I also want so desperately to make Doctors to understand the depression aspect of our disease.

On a personal level, I have to still adjust to the new me and hope  I can accept this person and learn to love this person with out guilt of who I use to be, the guilt of not being able to participate in every function, or do more than I can or even contribute as much as I use to.  This is the hardest hurdle for me.  So I am looking forward to 2016.  I am hoping trying so hard to be happy with me.

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Autoimmune disease, vestibular Dysfunction, Fibromyalgsia took my health and my career

I have always worked in my life, Proud of being being able to raise my kids and live our life the way we did, we hadn’t gone to Disney land, or drove a fancy car, but we had a home, home made food, nothing out of a box, the boys were in Soccer, Karate, Swimming, cub scouts, and boy scouts, Our house was the neighborhood house, I loved having all the kids at our house, although our house wasn’t 3000 square feet it was home and nice home, and although we couldn’t really vacation , we camped in the back yard and used a tent trailer in the front yard and made up vacations in our imagination, food and house decorations to match the vacation, I worked in the hair business for a while before realizing it wasn’t coming from my heart, so I started working in the medical field, first in the operating room then Labor and delivery then 15 years at a Dr’s office and I loved my job, it didn’t feel like work to me, I was doing what I was meant to do.  I believed in everything The Dr I worked for did, I really believed his first interest was the patients. My loyalty will always be there.   But my illness took that away from me, how devastating that was to me to give up what I believe was meant to do.  But with employers it comes down to, you become a liability, there afraid you are going to make mistakes, although there wasn’t any made.  The comments said behind your back about working with a employee with a disability was heart crushing to me, Co workers I thought that were my friends, my family and I came home from work the last 6 months crying every day because of how I was being treated by a particular employee at my job, she made me feel so bad about myself and I was allowing her to make me sicker and sicker and my husband said there is no job worth this.  I thought about it and he was right, I was loyal for 15 years and my intention was to retire when the Doctor did, but this particular employee did everything  she could to make my life a living hell.  The Doctor didn’t want to hear it, so  I went to a disability attorney and found out my rights and found out I could sue due to her behavior, her discriminating words not only against me but applicants for jobs,  but I didn’t want to hurt the Doctor or the practice or keep the negativity in my life.  She was toxic and broken and I couldn’t let her treat me that way anymore, so I left.  It was the best decision I ever made.  Although I am still sick I don’t have that added stress and toxicity in my life.   My job was for the patients, and that’s why they liked me and felt safe with me, they knew I would take care of them.  But most patients are on my facebook page and keep in contact.  When I run into patients they hug me and tell me how much they miss me and the office isn’t the same with out me.  So I know I made a impact and now my heart is to help others with invisible illnesses.  So i am still doing my hearts work just in a different way.  My support group is awesome and when we share our tears and we share our stories, I know I am on the right road.  Kelly

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What is Autoimmune Disease!

The Immune System

Your immune system is the network of cells and tissues throughout your body that work together to defend you from invasion and infection. You can think of it as having two parts: the acquired and the innate immune systems.

The acquired (or adaptive) immune system develops as a person grows. It “remembers” invaders so that it can fight them if they come back. When the immune system is working properly, foreign invaders provoke the body to activate immune cells against the invaders and to produce proteins called antibodies that attach to the invaders so that they can be recognized and destroyed. The more primitive innate (or inborn) immune system activates white blood cells to destroy invaders, without using antibodies.

Autoimmune diseases refer to problems with the acquired immune system’s reactions. In an autoimmune reaction, antibodies and immune cells target the body’s own healthy tissues by mistake, signaling the body to attack them.

Autoimmune Diseases

Autoimmune diseases can affect almost any part of the body, including the heart, brain, nerves, muscles, skin, eyes, joints, lungs, kidneys, glands, the digestive tract, and blood vessels.

The classic sign of an autoimmune disease is inflammation, which can cause redness, heat, pain, and swelling. How an autoimmune disease affects you depends on what part of the body is targeted. If the disease affects the joints, as in rheumatoid arthritis, you might have joint pain, stiffness, and loss of function. If it affects the thyroid, as in Graves’ disease and thyroiditis, it might cause tiredness, weight gain, and muscle aches. If it attacks the skin, as it does in scleroderma/systemic sclerosis, vitiligo, and systemic lupus erythematosus (SLE), it can cause rashes, blisters, and color changes.

Many autoimmune diseases don’t restrict themselves to one part of the body. For example, SLE can affect the skin, joints, kidneys, heart, nerves, blood vessels, and more. Type 1 diabetes can affect your glands, eyes, kidneys, muscles, and more.

No one is sure what causes autoimmune diseases. In most cases, a combination of factors is probably at work. For example, you might have a genetic tendency to develop a disease and then, under the right conditions, an outside invader like a virus might trigger it.

The list of diseases that fall into the autoimmune category includes

  • alopecia areata
  • autoimmune hemolytic anemia
  • autoimmune hepatitis
  • dermatomyositis
  • diabetes (type 1)
  • some forms of juvenile idiopathic arthritis
  • glomerulonephritis
  • Graves’ disease
  • Guillain-Barré syndrome
  • idiopathic thrombocytopenic purpura
  • myasthenia gravis
  • some forms of myocarditis
  • multiple sclerosis
  • pemphigus/pemphigoid
  • pernicious anemia
  • polyarteritis nodosa
  • polymyositis
  • primary biliary cirrhosis
  • psoriasis
  • rheumatoid arthritis
  • scleroderma/systemic sclerosis
  • Sjögren’s syndrome
  • systemic lupus erythematosus
  • some forms of thyroiditis
  • some forms of uveitis
  • vitiligo
  • granulomatosis with polyangiitis (Wegener’s)

 

The treatment depends on the disease, but in most cases one important goal is to reduce inflammation. Sometimes doctors prescribe corticosteroids or immunosuppressive drugs.

Progress and Promise

Further research should continue to enhance the understanding of the genetics and causes of autoimmune disorders and result in improvements in diagnosing and treating these diseases. For information on autoimmune disease research that is supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases, visit www.niams.nih.gov/Research/default.asp. For a listing of federally and privately supported clinical trials for a variety of autoimmune disorders, visit www.clinicaltrials.gov.

Key Words

Acquired immune system. The part of the immune system that develops as a person grows. It employs antibodies and immune cells to fight harmful substances.

Antibody. A special protein produced by the body’s immune system that recognizes and helps fight infectious agents and other foreign substances that invade the body.

Antigen. A foreign substance that triggers the production of antibodies when it is introduced into the body.

Autoimmune disease. A disease that results when the immune system mistakenly attacks the body’s own tissues.

Corticosteroids. Potent anti-inflammatory hormones that are made naturally in the body or synthetically (man-made) for use as drugs. They are also called glucocorticoids. The most commonly prescribed drug of this type is prednisone.

Diabetes, type 1. A condition in which the immune system destroys insulin-producing cells of the pancreas, making it impossible for the body to use glucose (blood sugar) for energy. Type 1 diabetes usually occurs in children and young adults.

Graves’ disease. An autoimmune disease of the thyroid gland that results in the overproduction of thyroid hormone. This causes such symptoms as nervousness, heat intolerance, heart palpitations, and unexplained weight loss.

Immune system. A complex network of specialized cells and organs that work together to defend the body against attacks by foreign invaders, such as bacteria and viruses.

Immunosuppressive drugs. Drugs that suppress the immune response and can be used to treat autoimmune disease. Unfortunately, because these drugs also suppress normal immunity, they leave the body at risk for infection.

Inflammation. A reaction of body tissues to injury or disease, typically marked by five signs: swelling, redness, heat, pain, and loss of function.

Innate immune system. The part of the immune system that is more primitive. It employs types of white blood cells called granulocytes and monocytes to destroy harmful substances.

Psoriatic arthritis. A type of arthritis associated with psoriasis, a chronic skin disease that occurs when cells in the outer layer of the skin reproduce faster than normal.

Rheumatoid arthritis. A disease in which the immune system attacks the linings of the joints. This results in joint pain, stiffness, swelling, and destruction.

Scleroderma/systemic sclerosis. An autoimmune disease characterized by abnormal growth of connective tissue in the skin and blood vessels. In more severe forms, connective tissue can build up in the kidneys, lungs, heart, and gastrointestinal tract, leading in some cases to organ failure.

Systemic lupus erythematosus. An autoimmune disease affecting primarily young women. Many parts of the body can be affected, including the joints, skin, kidneys, heart, lungs, blood vessels, and brain.

Thyroiditis. An inflammation of the thyroid gland that causes the gland to become underactive. This results in symptoms such as fatigue, weakness, weight gain, cold intolerance, and muscle aches.

Vitiligo. A disorder in which the immune system destroys pigment-making cells called melanocytes. This results in white patches of skin on different parts of the body.

# # #

The mission of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), a part of the U.S. Department of Health and Human Services’ National Institutes of Health (NIH), is to support research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases; the training of basic and clinical scientists to carry out this research; and the dissemination of information on research progress in these diseases. The NIAMS information clearinghouse is a public service sponsored by the NIAMS that provides health information and information sources. Additional information can be found on the NIAMS website at www.niams.nih.gov.

The National Institutes of Health (NIH)—The Nation’s Medical Research Agency— includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary Federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit http://www.nih.gov.

For Your Information

This publication contains information about medications used to treat the health condition discussed here. When this publication was developed, we included the most up-to-date (accurate) information available. Occasionally, new information on medication is released.

For updates and for any questions about any medications you are taking, please contact

U.S. Food and Drug Administration

Toll Free: 888-INFO-FDA (888-463-6332)
Website: http://www.fda.gov

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Womens immune system genes operate differently from men’s

Women’s immune system genes operate differently from men’s

A new technology reveals that immune system genes switch on and off differently in women and men, and the source of that variation is not primarily in the DNA.

Jul 29 2015

Howard Chang

Howard Chang and his colleagues have developed a technology that enables to sample living cells in real time to better understand how they operate.
Steve Fisch

A new technology for studying the human body’s vast system for toggling genes on and off reveals that genes associated with the immune system toggle more frequently, and those same genes operate differently in women and men.

Some genes are virtually always on, like the clock light on a microwave; others sit unused for years at a time, like some regrettable appliance you bought, stuffed into the back of the closet and forgot. Some genes can be always on in one person and always off in another. A minority of genes switch on and off, like a favorite cell phone app. A new technology, which makes it possible to study the molecules that regulate all of that switching in living people as they go about their lives, has revealed some intriguing surprises, according to a study from the Stanford University School of Medicine.

One of those discoveries is that the genes that switch on and off differently from person to person are more likely to be associated with autoimmune diseases. Another is that women and men use different switches to turn on many immune system genes. It’s too soon to be sure, but that difference in activity might explain the much higher incidence in women of autoimmune diseases such as scleroderma, lupus and rheumatoid arthritis.

“Part of why this is possible is a new technology that was invented at Stanford for measuring the accessibility of the genome to regulatory elements,” explained the study’s senior author Howard Chang, MD, PhD, professor of dermatology.

The new technique, called ATAC-seq and developed by Chang’s team, lets researchers sample living cells in real time to see what they are up to. “In the past,” he said, “people needed a huge number of cells to do this kind of measurement. You’d actually need a pound of flesh to get certain rare cell types. So you can’t get that out of a live person — and certainly not more than once, right?”

Examining the source

Researchers coped by growing cells in the lab, so they had enough cells to study. “But now,” continued Chang, “you are studying copies of copies; you aren’t studying the original cells anymore. Those months of being grown in the lab completely changes how the cells are behaving and so you are no longer looking at the personal. How the laboratory cells behave has nothing to do with what the person just ate, whether they had a fight with their girlfriend or whether they had an infection,” said Chang. With lab-grown cells, the cells haven’t experienced any of those things, all of which can alter the regulation of individual genes.

The new study, published July 29 in the new journal Cell Systems, took ordinary blood samples from 12 healthy volunteers to measure how certain genes are switched on and off, and how that measure varied from individual to individual. Chang’s team also looked at how much change occurred at different times in the same volunteers. The researchers looked exclusively at specialized immune cells called T cells, which are easy to isolate from a standard blood test, easy for volunteers supply and an important component of the immune system.

The single greatest predictor for genes’ tendency to turn on and off was the sex of the person.

One goal of the study was to establish a baseline measure of how much this gene-switching activity varies among healthy people. That way, when other researchers make similar measures in people who are ill, they’ll have an idea of what is normal. Another goal was to refine the new technique for measuring gene activity in standard blood samples.

“We were interested in exploring the landscape of gene regulation directly from live people and look at differences,” said Chang. “We asked, ‘How different or similar are people?’ This is different from asking if they have the same genes.” Even in identical twins, he said, one twin could have an autoimmune disease and the other could be perfectly well. And, indeed, the team reported that over a third of the variation in gene activity was not connected to a genetic difference, suggesting a strong role for the environment. “I would say the majority of the difference is likely from a nongenetic source,” he said.

The sex factor

Across the 12 healthy volunteers, 7 percent of the genes were switched on in different patterns from person to person. For each person, these patterns persisted over time, like a unique fingerprint. “But the single greatest predictor for genes’ tendency to turn on and off was the sex of the person. In terms of significance,” said Chang, “sex was far more important than all the other things we looked at, perhaps even combined.” When the team measured gene activity levels from 30 of the top 500 genes the researchers expected would show gender-influenced activity, they found that 20 of the 30 genes showed significant differential activity between men and women.

Chang directs the Center for Personal Dynamic Regulomes at Stanford University, which aims to map the “regulome” — the complete set of all the switches that turn genes on and off in real time.

Other Stanford-affiliated authors of the paper are Kun Qu, PhD, senior research associate; Lisa Zaba, MD, PhD, instructor of dermatology; Paul Giresi, PhD, former postdoctoral scholar; Rui Li, life science research assistant; Michelle Longmire, MD, clinical instructor of dermatology; Youn Kim, MD, the Joanne and Peter Haas Jr., Professor for Cutaneous Lymphoma Research; and William Greenleaf, PhD, assistant professor of genetics.

This work was supported by the National Institutes of Health (grants P50HG007735 and U19AI110491), the Howard Hughes Medical Institute, the Stanford Cancer Center, the Scleroderma Research Foundation and the Haas Family Foundation.

Information about Stanford’s Department of Genetics, which also supported the work, is available at http://genetics.stanford.edu.



Stanford Medicine integrates research, medical education and health care at its three institutions – Stanford University School of Medicine, Stanford Health Care (formerly Stanford Hospital & Clinics), and Lucile Packard Children’s Hospital Stanford. For more information, please visit the Office of Communication & Public Affairs site at http://mednews.stanford.edu.

The intent of this site is to help others through sharing information.  Kelly Helsel does not endorse or intend to mislead any readers as to the content of any articles or books on this site.

 

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