Tag Archives: Lupus

Its awareness time for Invisible Illnesses!

A Invisible illness is a illness that you have that can’t be seen, MS, SJorden’s, Cluster headaches, migraine headaches, gastroparesis, Huntington’s disease ,fibromyalgia,chronic fatigue, lupus,reflex sympathetic Dystrophy, Myalgic Encephalomuelitis, Crohn’s disease, cystic fibrosis, RA, Prinz Metals Variant Arigina, Asthma, Hypogamma-globulinemia, PTSD, concussion, post concussion syndrome, Hep C, Chronic Back injury, Diabetes, cancer, autonomic neuropathy, autonomic small tissue neuropathy, autonomic dysfunction, Autoimmune disease of the inner ear, AIED, Menieres, So many there isn’t enough pages to list all the invisible illnesses.

The key to Invisible Illness is yet the hardest thing to do is diagnose a invisible illness, but the sooner you get diagnosis, get the right treatment, most invisible illnesses don’t have a cure. just comfort measures.

I have a invisible illness, several to be exact and I can tell you the hardest thing is having to defend your illness to everyone, they don’t believe you, they think you are doing it for attention. Believe me I would do anything to have my old life back, be able to work, go for a walk, hike, go have vacations, go to the mail box, walk in a line, Sleep! Sleep is so important and as a patient with invisible illnesses, I feel like I can sleep all the time, my brain is working on over time every day, just to get out of bed, just to do my hair..

I call it payback, if I go do something fun, the energy it takes to get ready and get somewhere be normal for a few minutes and then go home and crash, the pay back! the more stress the more pay back. It can take hours to get ready just for a simple dinner but I can sleep 14 hours after. Any Dr appointments wipe me out, specially if testing is to be done. So I plan. everything has to be planned, If I can make dinner I have to make it early so I am not sleeping when it’s dinner time, If I clean up the laundry room, I have to sleep after, I will do 1 load of laundry and pay.

When you have to defend your illness, its hurts inside, when your family doesn’t believe you it breaks your heart, your always on the defense. Your friends disappear, family disappears whether its because they can’t handle it or because they don’t want to. That’s the killer. You become the scape goat for family issues because your crazy. Its a awful place to be, your not only alone but your alone with your disease, not knowing what tomorrow may bring or if tomorrow will come or if you even want it to. Having a invisible illness F g sucks! more bad days than good, never being able to make plans.

So If you take anything from this post today is we are telling the truth, we are sick, we need your support not your drama. We don’t need to explain our illness or defend it and if you can’t be supportive then let the person go. Just be honest, Just tell the person, write them a letter, e mail them, so they don’t have a false representation of what your intentions are. That’s kinder to a person than to hang on and be a fake friend. Or family member. Every Dr that I talk to says the same thing, the hardest thing is the lack of support from family and friends and there not believed. Those are the words of the Doctors, it’s the highest complaint. Very Sad, that amongst the illness we don’t get the recognition that we are even sick let alone support from the people in your life. So if you are a family member of someone with invisible illnesses, learn about the disease, learn how you can help, not behind the patients back but from the patient “What will make your life easier”? Its not science, it doesn’t cost you anything, but be there! Remember we all die some day, some have a longer illness or life than others, so instead of nit picking, being abusive verbally, be supportive. Nothing hurts worse then being sick alone.

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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)

to me
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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Missing link between brain, immune system with major disease!

Missing link found between brain, immune system — with major disease implications

Implications profound for neurological diseases from autism to Alzheimer’s to multiple sclerosis

Credit: University of Virginia Health System

Vessels directly connecting brain, lymphatic system exist despite decades of doctrine that they don’t
Finding may have substantial implications for major neurological diseases
Game-changing discovery opens new areas of research, transforms existing ones
Major gap in understanding of the human body revealed
‘They’ll have to change the textbooks’

CHARLOTTESVILLE, Va., June 1, 2015 – In a stunning discovery that overturns decades of textbook teaching, researchers at the University of Virginia School of Medicine have determined that the brain is directly connected to the immune system by vessels previously thought not to exist. That such vessels could have escaped detection when the lymphatic system has been so thoroughly mapped throughout the body is surprising on its own, but the true significance of the discovery lies in the effects it could have on the study and treatment of neurological diseases ranging from autism to Alzheimer’s disease to multiple sclerosis.

“Instead of asking, ‘How do we study the immune response of the brain?’ ‘Why do multiple sclerosis patients have the immune attacks?’ now we can approach this mechanistically. Because the brain is like every other tissue connected to the peripheral immune system through meningeal lymphatic vessels,” said Jonathan Kipnis, PhD, professor in the UVA Department of Neuroscience and director of UVA’s Center for Brain Immunology and Glia (BIG). “It changes entirely the way we perceive the neuro-immune interaction. We always perceived it before as something esoteric that can’t be studied. But now we can ask mechanistic questions.”

“We believe that for every neurological disease that has an immune component to it, these vessels may play a major role,” Kipnis said. “Hard to imagine that these vessels would not be involved in a [neurological] disease with an immune component.”

New Discovery in Human Body

Kevin Lee, PhD, chairman of the UVA Department of Neuroscience, described his reaction to the discovery by Kipnis’ lab: “The first time these guys showed me the basic result, I just said one sentence: ‘They’ll have to change the textbooks.’ There has never been a lymphatic system for the central nervous system, and it was very clear from that first singular observation – and they’ve done many studies since then to bolster the finding – that it will fundamentally change the way people look at the central nervous system’s relationship with the immune system.”

Even Kipnis was skeptical initially. “I really did not believe there are structures in the body that we are not aware of. I thought the body was mapped,” he said. “I thought that these discoveries ended somewhere around the middle of the last century. But apparently they have not.”

‘Very Well Hidden’

The discovery was made possible by the work of Antoine Louveau, PhD, a postdoctoral fellow in Kipnis’ lab. The vessels were detected after Louveau developed a method to mount a mouse’s meninges – the membranes covering the brain – on a single slide so that they could be examined as a whole. “It was fairly easy, actually,” he said. “There was one trick: We fixed the meninges within the skullcap, so that the tissue is secured in its physiological condition, and then we dissected it. If we had done it the other way around, it wouldn’t have worked.”

After noticing vessel-like patterns in the distribution of immune cells on his slides, he tested for lymphatic vessels and there they were. The impossible existed. The soft-spoken Louveau recalled the moment: “I called Jony [Kipnis] to the microscope and I said, ‘I think we have something.'”

As to how the brain’s lymphatic vessels managed to escape notice all this time, Kipnis described them as “very well hidden” and noted that they follow a major blood vessel down into the sinuses, an area difficult to image. “It’s so close to the blood vessel, you just miss it,” he said. “If you don’t know what you’re after, you just miss it.”

“Live imaging of these vessels was crucial to demonstrate their function, and it would not be possible without collaboration with Tajie Harris,” Kipnis noted. Harris, a PhD, is an assistant professor of neuroscience and a member of the BIG center. Kipnis also saluted the “phenomenal” surgical skills of Igor Smirnov, a research associate in the Kipnis lab whose work was critical to the imaging success of the study.

Alzheimer’s, Autism, MS and Beyond

The unexpected presence of the lymphatic vessels raises a tremendous number of questions that now need answers, both about the workings of the brain and the diseases that plague it. For example, take Alzheimer’s disease. “In Alzheimer’s, there are accumulations of big protein chunks in the brain,” Kipnis said. “We think they may be accumulating in the brain because they’re not being efficiently removed by these vessels.” He noted that the vessels look different with age, so the role they play in aging is another avenue to explore. And there’s an enormous array of other neurological diseases, from autism to multiple sclerosis, that must be reconsidered in light of the presence of something science insisted did not exist.

Published in Nature

The findings have been published online by the prestigious journal Nature and will appear in a forthcoming print edition. The article was authored by Louveau, Smirnov, Timothy J. Keyes, Jacob D. Eccles, Sherin J. Rouhani, J. David Peske, Noel C. Derecki, David Castle, James W. Mandell, Lee, Harris and Kipnis.

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The study was funded by National Institutes of Health grants R01AG034113 and R01NS061973. Louveau was a fellow of Fondation pour la Recherche Medicale.

Disclaimer: AAAS and EurekAlert! are not responsible for the accuracy of news releases posted to EurekAlert! by contributing institutions or for the use of any information through the EurekAlert system.

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A new Diagnosis

As the last 2 days have set in my mind, a blurred diagnosis, with blurred game plan, what it all means, what’s the next step, I just keep hearing this is abnormal, this is abnormal, this is abnormal ect. I don’t think Doctors realize it’s a lot to take in in a 15 minute appointment.

After crying in the parking lot, I realized that was getting me no where. I needed to help myself, The Doctors are not going to help me through this. It must be me. I have to do research on treatment, diet, exercise, medications, everything involved.

But I feel like a cake adding one layer on top of layer of diagnosis. When does the top come on. So for me, I have hard a really two days of just pure fatigue, but I went swimming anyway, Did some art, and cried a lot. Now I had my sympathy party and now it’s kick butt time. Those who know me, know I must help others in my same place. So that’s a given. I am thankful for my journaling class beginning next week, I am going clean in my diet, green in my house, exercise no matter how hard it is. Drink tons of water to help my liver and kidneys. I am also grateful for the friends that have contacted me to check in, David Morrill, Frank Covert, Karen Polly, Tracy Fox, Amanda Parks,, Kristina Greaney, Bonnie Burgess Barbara Suiter, Lindsay Gauger, and Kathy Merrill, Russ Brean Holly Kelly, Jennifer Pokorski, Holly Torgeson and my new dear friend DA Cole, your support means everything.

So just so you know, I am kicking butt mood and I am going to win. Kelly

Thanks for all your support, love and friendship,

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What is an Invisible Disability?

March30,2016
What is an Invisible Disability?
Invisible Disabilities Association – InvisibleDisabilities.org

By Guest Blogger Wayne Connell, Founder, Invisible Disabilities Association

What is an “invisible disability?” Is it a specific illness or condition, such as multiple sclerosis, fibromyalgia, bipolar disorder, diabetes, a Chiari malformation or syringomyelia? Is it the symptoms of an illness or disability, such as pain or fatigue or neuropathy or brain fog? Why do we even use the phrase or where did it come from? Isn’t a disability just a disability, no matter if you can see it or not? Are people treated differently because their disability manifests itself visibly? Is having a disability different from being disabled? All great questions! Is someone, who has an illness or is in pain or has a disability or is disabled, a bad person who should be treated like a lesser human? I can answer that one. NO!

Twenty years ago in 1996, my wife, Sherri, coined the term “invisible disability.” Why did she come up with it? After receiving a diagnosis of primary progressive multiple sclerosis and chronic late stage Lyme disease in 1991, at the young age of 27, Sherri endured the stares and accusations and disbelief of strangers and friends that questioned how she could be disabled and still walk with seemingly unapparent outward signs of her disabilities. People would often scream at her when she parked in an accessible space or ignore her when she collapsed on the floor of a department store. So the phrase, “I have an invisible disability,” became an apt description of what she was living with.

As a tech guy, I decided to use some of Sherri’s pamphlets she wrote to help friends and family better understand what she was going through such as “Multiple What? Untangling the Perplexities of Multiple Sclerosis” and “Don’t Judge by Appearances – Parking with Invisible Disabilities” and created the InvisibleDisabilities.org website. That is when The Invisible Disabilities Advocate® was launched (which became the Invisible Disabilities® Association (IDA)). Almost immediately, 25,000 people a month started coming to IDA’s website and said that we put into words what they had been trying to tell their friends and families. “Invisible disabilities” progressed from a very descriptive term to an international organization and movement.

Of course, the question most-asked of our organization is, “what is an ‘invisible disability?’” In general, the term “disability” is often used to describe an ongoing physical challenge. This could be a bump in life that can be well-managed or a mountain that creates serious changes and loss. Either way, this term should not be used to describe a person as weaker or lesser than anyone else! Every person has a purpose, special uniqueness and value, no matter what hurdles they may face.

In addition, just because a person has a disability does not mean they are disabled. Many living with these challenges are still fully active in their work, families, sports or hobbies. Some with disabilities are able to work full or part time, but struggle to get through their day, with little or no energy for other things. Others are unable to maintain gainful or substantial employment due to their disability, have trouble with daily living activities and/or need assistance with their care.

According to the Americans with Disabilities Act of 1990 (ADA), an individual with a disability is a person who: has a physical or mental impairment that substantially limits one or more major life activities; has a record of such an impairment; or is regarded as having such an impairment.

Furthermore, “A person is considered to have a disability if he or she has difficulty performing certain functions (seeing, hearing, talking, walking, climbing stairs and lifting and carrying), or has difficulty performing activities of daily living, or has difficulty with certain social roles (doing school work for children, working at a job and around the house for adults).”

Often people think the term “disability” only refers to people using a wheelchair or walker. On the contrary, the 1994-1995 Survey of Income and Program Participation (SIPP) found that 26 million Americans (almost one in 10) were considered to have a severe disability, while only 1.8 million used a wheelchair and 5.2 million used a cane, crutches or walker. In other words, 74 percent of Americans who live with a severe disability do not use such devices. Therefore, a disability cannot be determined solely on whether or not a person uses assistive equipment.

The term “invisible disability” refers to symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences and mental health disorders, as well as hearing and vision impairments. These are not always obvious to the onlooker, but can sometimes or always limit daily activities, range from mild challenges to severe limitations and vary from person to person.

Also, someone who has a visible impairment or uses an assistive device such as a wheelchair, walker or cane can also have an invisible disability. For example, whether or not a person utilizes an assistive device, if they are debilitated by such symptoms as described above, they live with an invisible disability.

Unfortunately, people often judge others by what they see and often conclude a person can or cannot do something by the way they look. This can be equally frustrating for those who may appear unable, but are perfectly capable, as well as those who appear able, but are not.

International Disability expert Joni Eareckson Tada explained it well when she told someone living with debilitating fatigue, “people have such high expectations of folks like you [with invisible disabilities], like, ‘come on, get your act together.’ But they have such low expectations of folks like me in wheelchairs, as though it’s expected that we can’t do much.”

The bottom line is that everyone with a disability is different, with varying challenges and needs, as well as abilities and attributes. Thus, we all should learn to listen with our ears, instead of judging with our eyes.

At the Invisible Disabilities® Association, we do not maintain a list of specific illnesses and diagnoses that are considered invisible disabilities. There are thousands of illnesses, disorders, diseases, dysfunctions, genetic defects, impairments and injuries that can be debilitating. Therefore, all conditions that are debilitating are included when we talk about invisible disabilities. However, our focus is not to attempt to provide a vast amount of information about thousands of specific conditions (there are plenty of amazing organizations that do that).

IDA is here to provide awareness, education, connection and support for everyone who lives with a debilitating condition. We do this by offering articles, pamphlets, books, resources, radio interviews, video, seminars, symposiums and more to give hope and compassion to all living with invisible disabilities as well as information for loved ones to better understand.

IDA’s mission is to encourage, educate and connect people and organizations touched by illness, pain and disability around the globe. Hard to believe it has been twenty years yet there is still so much more work to do. Will you join us on this journey and envision a world where people living with illness, pain and disability will be Invisible No More®?
About the Guest Blogger

Wayne Connell, the founder and president of the Invisible Disabilities® Association (IDA), established IDA twenty years ago in 1996 out of the desire to educate friends and family about his wife’s debilitating illness. Soon afterwards, people around the globe began sending emails sharing how IDA had changed their relationships with their loved ones. He is co-author of the book, “But You LOOK Good, How to Encourage and Understand People Living with Illness and Pain.” Wayne’s background fueled his passion for helping people living with illness, pain and disability. His experience includes that of a professional, multitasking husband caregiver with an extensive background in management, media and technology. This man on a mission quickly launched IDA into a world-wide outreach for millions living with invisible disabilities.

Make sure you check out IDA’s website for additional resources and stories at www.InvisibleDisabilities.org. Share your personal video story with us at www.InvisibleNoMore.tv. You can also be part of other people’s stories by joining them at www.Facebook.com/invisibledisabilities or becoming a member of InvisibleDisabilities.Inspire.com. Join IDA at our 2nd annual Brain IDEAS Symposium on August 5th. Invisible Disabilities Week is Oct 16 through 22, 2016. Our 9th Annual Awards Gala, “Jazzed About You” will be Octob

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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

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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.

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What is renal failure?

What is renal failure?

Renal failure refers to temporary or permanent damage to the kidneys that results in loss of normal kidney function. There are two different types of renal failure–acute and chronic. Acute renal failure has an abrupt onset and is potentially reversible. Chronic renal failure progresses slowly over at least three months and can lead to permanent renal failure. The causes, symptoms, treatments, and outcomes of acute and chronic are different.

Conditions that may lead to acute or chronic renal failure may include, but are not limited to, the following:

Acute renal failure

Chronic renal failure

Myocardial infarction. A heart attack may occasionally lead to temporary kidney failure.

Diabetic nephropathy. Diabetes can cause permanent changes, leading to kidney damage.

Rhabdomyolysis. Kidney damage that can occur from muscle breakdown. This condition can occur from severe dehydration, infection, or other causes.

Hypertension. Chronic high blood pressure (hypertension) can lead to permanent kidney damage.

Decreased blood flow to the kidneys for a period of time. This may occur from blood loss or shock.

Lupus (SLE). A chronic inflammatory/autoimmune disease that can injure the skin, joints, kidneys, and nervous system.

An obstruction or blockage along the urinary tract.

A prolonged urinary tract obstruction or blockage.

Hemolytic uremic syndrome. Usually caused by an E. coli infection, kidney failure develops as a result of obstruction to the small functional structures and vessels inside the kidney.

Alport syndrome. An inherited disorder that causes deafness, progressive kidney damage, and eye defects.

Ingestion of certain medications that may cause toxicity to the kidneys.

Nephrotic syndrome. A condition that has several different causes. Nephrotic syndrome is characterized by protein in the urine, low protein in the blood, high cholesterol levels, and tissue swelling.

Glomerulonephritis. A type of kidney disease that involves glomeruli. During glomerulonephritis, the glomeruli become inflamed and impair the kidney’s ability to filter urine. Glomerulonephritis may lead to chronic renal failure in some individuals.

Polycystic kidney disease. A genetic disorder characterized by the growth of numerous cysts filled with fluid in the kidneys.

Any condition that may impair the flow of oxygen and blood to the kidneys such as cardiac arrest.

Cystinosis. An inherited disorder in which the amino acid cystine (a common protein-building compound) accumulates within specific cellular bodies of the kidney, known as lysosomes.

Interstitial nephritis or pyelonephritis. An inflammation to the small internal structures in the kidney.
What is end-stage renal disease (ESRD)?

End-stage renal disease is when the kidneys permanently fail to work.
What are the symptoms of renal failure?

The symptoms for acute and chronic renal failure may be different. The following are the most common symptoms of acute and chronic renal failure. However, each individual may experience symptoms differently. Symptoms may include:

Acute (Symptoms of acute renal failure depend largely on the underlying cause.):

Hemorrhage

Fever

Weakness

Fatigue

Rash

Diarrhea or bloody diarrhea

Poor appetite

Severe vomiting

Abdominal pain

Back pain

Muscle cramps

No urine output or high urine output

History of recent infection (a risk factor for acute renal failure)

Pale skin

Nosebleeds

History of taking certain medications (a risk factor for acute renal failure)

History of trauma (a risk factor for acute renal failure)

Swelling of the tissues

Inflammation of the eye

Detectable abdominal mass

Exposure to heavy metals or toxic solvents (a risk factor for acute renal failure)

Chronic:

Poor appetite

Vomiting

Bone pain

Headache

Insomnia

Itching

Dry skin

Malaise

Fatigue with light activity

Muscle cramps

High urine output or no urine output

Recurrent urinary tract infections

Urinary incontinence

Pale skin

Bad breath

Hearing deficit

Detectable abdominal mass

Tissue swelling

Irritability

Poor muscle tone

Change in mental alertness

Metallic taste in mouth

The symptoms of acute and chronic renal failure may resemble other conditions or medical problems. Always consult your doctor for a diagnosis.
How is renal failure diagnosed?

In addition to a physical examination and complete medical history, diagnostic procedures for renal failure may include the following:

Blood tests. Blood tests will determine blood cell counts, electrolyte levels, and kidney function

Urine tests

Renal ultrasound (also called sonography). A noninvasive test in which a transducer is passed over the kidney producing sound waves which bounce off the kidney, transmitting a picture of the organ on a video screen. The test is use to determine the size and shape of the kidney, and to detect a mass, kidney stone, cyst, or other obstruction or abnormalities.

Kidney biopsy. This procedure involves the removal of tissue samples (with a needle or during surgery) from the body for examination under a microscope; to determine if cancer or other abnormal cells are present.

Computed tomography scan (also called a CT or CAT scan). A diagnostic imaging procedure that uses a combination of X-rays and computer technology to produce horizontal, or axial, images (often called slices) of the body. A CT scan shows detailed images of any part of the body, including the bones, muscles, fat, and organs. CT scans are more detailed than general X-rays. Contrast CT usually cannot be done when there is kidney failure.

What is the treatment for acute and chronic renal failure?

Specific treatment for renal failure will be determined by your doctor based on:

Your age, overall health, and medical history

Extent of the disease

Type of disease (acute or chronic)

Underlying cause of the disease

Your tolerance for specific medications, procedures, or therapies

Expectations for the course of the disease

Your opinion or preference

Treatment may include:

Hospitalization

Administration of intravenous (IV) fluids in large volumes (to replace depleted blood volume)

Diuretic therapy or medications (to increase urine output)

Close monitoring of important electrolytes such as potassium, sodium, and calcium

Medications (to control blood pressure)

Specific diet requirements

In some cases, patients may develop severe electrolyte disturbances and toxic levels of certain waste products normally eliminated by the kidneys. Patients may also develop fluid overload. Dialysis may be indicated in these cases.

Treatment of chronic renal failure depends on the degree of kidney function that remains. Treatment may include:

Medications (to help with growth, prevent bone density loss, and/or to treat anemia)

Diuretic therapy or medications (to increase urine output)

Specific diet restrictions or modifications

Dialysis

Kidney transplantation

What is dialysis?

Dialysis is a procedure that is performed routinely on persons who suffer from acute or chronic renal failure, or who have ESRD. The process involves removing waste substances and fluid from the blood that are normally eliminated by the kidneys. Dialysis may also be used for individuals who have been exposed to or ingested toxic substances to prevent renal failure from occurring. There are two types of dialysis that may be performed, including the following:

Peritoneal dialysis. Peritoneal dialysis is performed by surgically placing a special, soft, hollow tube into the lower abdomen near the navel. After the tube is placed, a special solution called dialysate is instilled into the peritoneal cavity. The peritoneal cavity is the space in the abdomen that houses the organs and is lined by two special membrane layers called the peritoneum. The dialysate is left in the abdomen for a designated period of time which will be determined by your doctor. The dialysate fluid absorbs the waste products and toxins through the peritoneum. The fluid is then drained from the abdomen, measured, and discarded. There are three different types of peritoneal dialysis: continuous ambulatory peritoneal dialysis (CAPD), continuous cyclic peritoneal dialysis (CCPD), and intermittent peritoneal dialysis (IPD).

CAPD does not require a machine. Exchanges, often referred to as passes, can be done three to five times a day during waking hours. CCPD requires the use of a special dialysis machine that can be used in the home. This type of dialysis is done automatically, even while you are asleep. IPD uses the same type of machine as CCPD, but treatments take longer. IPD can be done at home, but usually is done in the hospital.

Possible complications of peritoneal dialysis include an infection of the peritoneum, or peritonitis, where the catheter enters the body. Peritonitis causes fever and stomach pain. Your diet for peritoneal dialysis will be planned with a dietitian, who can help you choose meals according to your doctor’s orders. Generally:

You may have special protein, salt, and fluid needs.

You may have special potassium restrictions.

You may need to reduce your calorie intake, since the sugar in the dialysate may cause weight gain.

Hemodialysis. Hemodialysis can be performed at home or in a dialysis center or hospital by trained health care professionals. A special type of access, called an arteriovenous (AV) fistula, is placed surgically, usually in your arm. This involves joining an artery and a vein together. An external, central, intravenous (IV) catheter may also be inserted, but is less common for long-term dialysis. After access has been established, you will be connected to a large hemodialysis machine that drains the blood, bathes it in a special dialysate solution which removes waste substances and fluid, then returns it to your bloodstream.

Hemodialysis is usually performed several times a week and lasts for four to five hours. Because of the length of time hemodialysis takes, it may be helpful to bring reading material, in order to pass the time during this procedure. During treatment you can read, write, sleep, talk, or watch TV.

At home, hemodialysis is done with the help of a partner, often a family member or friend. If you choose to do home hemodialysis, you and your partner will receive special training.

Possible complications of hemodialysis include muscle cramps and hypotension (sudden drop in blood pressure). Hypotension may cause you to feel dizzy or weak, or sick to your stomach. Side effects are avoided by following the proper diet and taking medications, as prescribed by your doctor. A dietitian will work with you to plan your meals, according to your doctor’s orders. Generally:

You may eat foods high in protein such as meat and chicken (animal proteins).

You may have potassium restrictions.

You may need to limit the amount you drink.

You may need to avoid salt.

You may need to limit foods containing mineral phosphorus (such as milk, cheese, nuts, dried beans, and soft drinks).

Long-term outlook for ESRD

People with ESRD are living longer than ever. Dialysis treatments (both hemodialysis and peritoneal dialysis) are not cures for ESRD, but will help you feel better and live longer. Over the years, ESRD can cause other problems such as bone disease, high blood pressure, nerve damage, and anemia (having too few red blood cells). You should discuss prevention methods and treatment options for these potential problems

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