Audio of All Seminars On USB Flash Drive

September 27, 2012 by  
Filed under Announcements, What's New

usb iiwk12 300x300 Audio of All Seminars On USB Flash DriveFirst, thank you so much to all who came to CNN’s Health chat last week. We had a great turn out and everyone at CNN said, “Consider this a great success!”

Last week I ordered the USB Flash Drives and they are on their way! All the seminars for Invisible Illness Awareness Week have an audio MP3 file and these will be included on the USB drive.

Some people have asked, “Now, what is a USB drive? In case you don’t know, it is like a mini hard drive and can hold a lot of information. For example, only about 1 seminar would fit onto a CD, but we can fit all 19 seminars on this 1 GB flash drive and half of the USB will still be empty.

You can stick it into your computer’s USB drive and listen; you can download it to your computer, your iPod, your MP3 player, or anywhere that allows you to plugin a USB drive. (My car actually has a USB drive.)

look so good Audio of All Seminars On USB Flash DriveWe are selling these for $15 . . . AND, if you watched the first seminar with Wayne and Sherri talking about what to say and not say to a chronically ill person, you just know their booklet “But You LOOK Good!” is fabulous. We would love to help the, get this book into the hands of more people. So if you pre-order by October 15th, we will throw in this book for just 3.50, saving you a few dollars.*

All orders of the flash drive or combination flash drive/booklet, will be sent mid-October, as soon as we receive the flash drives. By pre-ordering you help us with inventory estimations.

So, here is hoping these two items will help you in the coming months. After all, those holidays are just around the corner, when understanding how to communicate your needs with family is vital! Right?

Order today and get both the booklet, “But You LOOK Good!” and the flash drive with all audio seminars for just $18.50, plus shipping.

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*This is a limited time offer and coupons cannot be used. Sorry, but we need to break even on our costs.

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Join Me Friday at CNN Health Chat – Here is Why!

September 18, 2012 by  
Filed under Announcements, In The News, What's New

cnnhealthchat Join Me Friday at CNN Health Chat   Here is Why!

CNN Health features a chat based on interest from Invisible Illness Awareness Week, with founder Lisa Copen, hosting.

Thank you for all your help with Invisible Illness Awareness Week. I have some follow up emails set to come out in future days, but this one took priority about the opportunity over at CNN Health.

When we live with invisible illnesses we often say no one understands. They don’t understand the pain, the fatigue, the strength it takes to push through it all. They don’t get our fear of infections, the stress of the bills, none of it.

And we wish the media would do more to cover invisible illness than just show celebrities who seem to be “back to their old life” once they have taken certain medications.

Well, CNN Health is paying attention! Last week they featured your “Images of Hope” from Invisible Illness Awareness Week. I was even asked to write an article for CNN Health on how to talk to one with a chronic illness.  And they received over 140 comments in just hours. They listened . . . to you!

This week, in response to the article and the commenters, CNN Health is hosting a chat over at their Facebook page, http://Facebook.com/CNNHealth . It will be this Friday, September 21, 2012 at 9 AM pacific, 12 Noon Eastern. And I will be co-hosting it along with Sarah from CNN staff.

80 percent Join Me Friday at CNN Health Chat   Here is Why!This is exciting, folks!

They are giving their readers a forum to discuss what is on our minds. And personally,
I would love for TONS of us to show up.

Now, this is for just 1 hour. I know some of you will not be able to come. If you cannot make it, will you take just a minute to comment on this post, and thank the health editor over at CNN Health, Ashley Hayes, for the opportunity. She is the one making a difference.

Too often we criticize the media. They don’t tell our story, or when they do, we complain that they didn’t tell our story the right way. But they are giving you and I a chance to tell our story–and that is vital.

If they do not hear from us, from people like you and I who live with invisible illnesses, they will not know that there is a story to tell. So, show up if you can. Put it on your calendar–right now. And if you can’t come, comment below.

Every little bit matters–because you–and your story–matter.

Special thanks to Elizabeth Cohen, CNN Senior Medical Correspondent for tweeting out about the chat!

cnnchat Join Me Friday at CNN Health Chat   Here is Why!

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What I Learned About The Variety of Illnesses During #iiwk12

September 17, 2012 by  
Filed under Guest Bloggers & Articles, What's New

what i learned What I Learned About The Variety of Illnesses During #iiwk12By Kathryn Treat

Sunday ended National Invisible Chronic Illness Awareness Week.  I first posted Monday on National Invisible Chronic Illness Awareness Week and included a link to this website  .  I have read all the blogs posted (70) as of this writing.  What I have learned is that I am far from being the only person dealing with this outside my group of friends I have met since my journey began.

I have also learned that there are many “brave” men and women out there trying to carry on with their lives the best they can despite reactions, pain, chronic infections, chronic migraines, and the battle with depression either on its own or as a side effect of their other illnesses.  The stories were not much different from mine.  Some illnesses I was familiar with or had heard of but didn’t know much about.  Other illnesses I had never heard of before which sent me on a quick Google search.

In honor of all those whose stories I have read over this past week, I wanted to share what I learned, and in honor of those whose stories are yet to be told, I say “GOD BLESS YOU” for hanging in there and for not giving up.

I am going to attempt to list all those illness that I read about here today.

Budd Chiari Syndrome  (I didn’t know about this ) a blockage of the hepatic vein which carries blood away from the liver resulting in liver damage.

Chronic Fatigue Syndrome  see ME

Chronic Pain (I think this speaks for itself) – chronic pain can be caused from anything from rheumatoid arthritis to injuries from an accident.

Cuada Equina Syndrome (CES) -  (One of so many illness that I was unaware of) this is a rare disorder that affects the bundle of nerves roots (cuada equina) at the lower (lumbar) end of the spinal cord.

 Cystinosis (another illness I was unaware of) - a rare genetic disorder that causes an accumulation of  cystine, an amino acid,  within cells.  This causes crystals to form and build up damaging cells.  The crystals can affect many systems in the body especially the kidneys and eyes.

Depression – this can be hard enough to deal with but could also be a direct result of any of these conditions.

Diabetes (something most people know about but it makes sense that it would be an invisible illness)

Dysautonomia or also referred to as POTS (I have heard this a lot among fellow EI and MCS sufferers) -This is a broad term that describes any disease or malfunction of the autonomic nervous system (ANS). The autonomic nervous system controls  heart rate, blood pressure, digestive tract, and sweating among others.   Some with dysautonomia are affected mildly while others can be left bed-ridden.

Ehler’s Danlos Syndrome  (I had never heard of this before) – A group of disorders marked by loose joints and hyperelastic skin that bruises easily.

Endometriosis  (I learned I had Stage IV while a hysterectomy was performed due to extreme hemorrhagic ovarian cysts and the possibility of ovarian cancer) - cells in the lining of the uterus grow outside the womb and attach themselves to other organs causing pain, sometimes debilitating pain.

Environmental Illness/Chemical Sensitivity (This describes me) - a controversial condition where slight exposures to a chemical or group of chemicals can cause a wide array of symptoms from severe headache and brain fog to neurological reactions and respiratory symptoms.

Fibromyalgia (I have this but not nearly as severe as others I know) - a common syndrome in which a person has long-term body pain and tenderness in the joints, muscles, tendons and other soft tissues.  It has also been linked to fatigue, sleep problems, headaches, depression and anxiety.

Food Allergies (I have this as well) - An allergy to many foods.  Reactions can vary from rashes and hives to anaphylaxis.

Glycogen Storage Disease or GSD (something I was not aware of)  - An absence or deficiency of on of the enzymes responsible for making or breaking down glycogen in the body. Depending on the type of GSD a person has, their enzyme deficiency may be important in all parts of the body, or only in some parts of the body, like the liver or muscle.

Graves Disease – a thyroid disorder that leads to the overactivity of the thyroid gland.

Lupus   Systemic lupus erythematosus (SLE) - an autoimmune disease which means the body’s immune system mistakenly attacks healthy tissue which leads to chronic long-term inflammation.

Lyme Disease (this is something that is finally making more headlines) – caused most predominantly by the deer tick.  Left untreated, later symptoms may involve the joints, heart, and central nervous system.

Migraine - a chronic disorder characterized by recurrent moderate to severe headaches.  Symptoms include nausea, vomiting, photophobia and phonophobia.

Myalgic Encephalomyelitis (I have heard this in terms of Chronic Fatigue Syndrome or Chronic Fatigue Immune Dysfunction Syndrome) - is used to designate a significantly debilitating medical order or group of disorders defined by persistent fatigue.

Mycotoxicosis (another diagnosis of mine) - refers to the poisoning from exposure to mycotoxins.  The symptoms depend on the type of mycotoxin, the concentration, and the length of exposure.  Age, sex, and health also are determining factors in symptoms.  Mycotoxins can potentially cause acute and chronic health effects from ingestion, skin contact, and inhalation.  Some of the health effects found in animals and humans include death, identifiable diseases or health problems, weakened immune systems, allergens, or irritants.

NASH or Nonalcholic steatohepatitis (I had never heard of this disease before) - is a common often “silent” liver disease.  It resembles alcoholic liver disease but occurs in those who drink little or no alcohol.  The main feature is fat in the liver along with inflammation and damage.

Parasitic Infections – Many different parasites (including that which causes Lyme) can cause devastating effects on the body.  Some I have read about during National Invisible Chronic Illness Awareness Week are Babesiosis, Bartonella and Ehrlichiosis.

POTS  Postural orthostatic tachycardia syndrome  is a condition of  dysautonomia (see above).   A change from  lying to standing upright causes an abnormally large increase in heart rate.

PVC or premature ventricular contraction (another invisible illness I had never heard of) - may be perceived as a skipped beat or felt as palpitations in the chest.  They are extra abnormal heart beats that begin in the heart’s lower chambers or ventricles causing insufficient circulation.

Rheumatoid Arthritis -  a long-term disease that leads to inflammation of the joints and surrounding tissues.  It can also affect other organs.

Sarcoidosis (A friend once told me she had been diagnosed with this) - Sarcoidosis is a disease in which inflammation occurs in the lymph nodes, lungs, liver, eyes, skin, or other tissues. The cause of the disease is unknown. Sarcoidosis can affect almost any organ of the body, but it most commonly affects the lungs.

Sjogren’s (again this was something I had heard about bud didn’t know anything about) - a chronic autoimmune disease in which white blood cells attack their moisture-producing glands.  Most known symptoms are dry eyes and mouth but may also affect other organs such kidneys, blood vessels, lungs, liver, pancreas and the central nervous system.  Another piece of information that I wasn’t aware of is that is one of the most prevalent autoimmune disorders and 9 out of 10 patients are women.

Wegner’s Granulomatosis  - a rare disorder in which blood vessels become inflamed, making it hard for blood to flow.  It mainly affects blood vessels in the nose, sinuses, ears, lungs and kidneys.  It is thought to be an autoimmune disorder.

I had never heard of National Invisible Chronic Illness Awareness Week until a week ago.  What I learned is that I am so glad that there is a venue where we can gather to tell our stories.  I was amazed at how many of us are blogging about our illnesses and the number of illnesses that I had not heard of before or had even thought of as being an invisible illness.  I have chosen to follow some of these blogs to keep up with the progress of others.

Kathryn Treat is the mother of two.  She was a stay-at-home mother who decided to return to the work force  in 1999 when her younger daughter was about to graduate from high school.  Shortly after returning to work she began getting sicker and sicker and discovered that she was being exposed to mold in her workplace.  After battling the workers’ compensation industry for years, she decided that she needed to write her story to let others know that mold indeed can make one sick.  She is in the process of preparing her manuscript for publishing this fall.  She also started a blog http://allergictolifemybattle.wordpress.com where she includes excerpts from her book and discuss things she has discovered, including what it is like to live with environmental illness (also known as multiple chemical sensitivity) and food allergies.

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3 Challenges of Being an Illness Advocate

September 14, 2012 by  
Filed under Guest Bloggers & Articles, What's New

illness advocate 3 Challenges of Being an Illness Advocate
Rhiann Johns

Is anyone out there?

One challenge that I particularly face, especially when one considers it is a rare condition–is simply by trying to find an audience for my blog. Again, as I have previously mentioned it is not a common condition with very little information on the Internet or in medical books and have not yet met anyone exhibiting the same condition as myself. As a result, I often wonder if anyone reading my posts can relate to them or if they are relevant to other conditions.

Many of the symptoms are general, such as the dizziness and vertigo can be applicable to many different conditions, and the spastic paraparesis is itself a symptom and can be found in patients with multiple sclerosis and Parkinson’s Disease. But still the question remains whether my blog is helping and making a difference to others. Do I have something of value to add and share with whole health community?

I am too tired to write

The second challenge is being able to keep up with the writing and health activism whilst feeling so very unwell. A lot of the time, I really feel so unwell that the last activity that I feel able to take part in is by going on the internet, and writing or taking part in some other activist related activity. Us health activists need to attempt to learn to balance our lives. Health activism is so important, it often gives us something to focus on besides our illness, and advocating for ourselves and others is an excellent approach to doing just that at, however, it is also important that we take time for ourselves and give ourselves a chance to recuperate when symptoms are bad and to rest as much as possible.

The challenge of educating those who are well

And the third challenge that I personally face, as a health activist is to effectively make people aware and to understand the challenges that patients with an invisible chronic condition face everyday, to let them know that although we make look well, that it is not always the reality.

And in addition to make others aware of the language that people often use around those with invisible chronic conditions – that they are not often useful or helpful and can be really hurtful. Some examples of things not to say to a person with an invisible chronic condition are:

“It’s probably just stress” – this undermines the severity of the symptoms being experienced; as if the person is exaggerating their symptoms as well as undermining the diagnosis given by a qualified medical practitioner

“It’s all in your head” – this can be really undermining and hurtful for someone with an invisible chronic condition; just because you are unable to see the problem does not mean that it doesn’t exist

“You’ve made it! You must be feeling better” – this fallacy is one that I get a lot and can be really infuriating. For my condition and many others there is no quick fix or even a cure and hearing tis proves that invisible chronic conditions are completely misunderstood and no effort is even being made to understand by others. For myself, I often try to make an effort to visit someone for their benefit as well as my own, often the worst thing to do is stay in and feel unwell and often like to leave the house to get fresh air and to have social contact with others

“Everyone experiences that” – I often get this directed towards the dizziness that I constantly suffers and feel that it often minimises the effects of the dizziness, yes, a lot of people experiences dizziness, but it many not be of the same severity that mine is, and often is not felt constantly as mine is.

And there are many more! Can you think of others that people say to you which are not helpful? Please share them with us and perhaps I can do a follow-up piece on the topic!

rhianna johns 3 Challenges of Being an Illness AdvocateRhiann Johns was diagnosed two years ago with what is called a long-standing brain stem lesion and spastic paraparesis. This basically means that she has scarring on the brain stem which, for her, causes chronic dizziness with frequent episodes of vertigo with visual disturbances. The spastic paraparesis causes stiffness and weakness in the legs, making it uncomfortable when walking and means that she is unable to stand for very long. Although, she was only diagnosed 2 years, she has had this since she was born, although the doctors are unsure of how it happened. Although, she has always had problems throughout her childhood and teenage years, she was able to still gain a BSc Psychology. Recently, her condition has deteriorated a lot.

She blogs about it frequently at My Brain Lesion and Me

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It is Thursday of Invisible Illness Awareness Week!

September 13, 2012 by  
Filed under What's New

events thursday2 It is Thursday of Invisible Illness Awareness Week!

Today we have Leslie Vernick who will discuss destructive relationships. What do you do when a friend or family member goes beyond not understanding your illness. Trish Robichaud talk about steps she took following open heart surgery (she also has MS) to get through recovery and what she recommends when you are facing this slow process.

Maureen Pratt will talk about steps to take when you are facing a crisis? What happens when a crisis happens in addition to coping with your illness. And at 5 PM Jenni Pettit discusses how to be an advocate for your illness. What can you do when you are exhausted all the time?

You will find it all here invisibleillnessconference.com

All videos are archived and don’t forget that below each video is an MP3 audio file. If you are on a limited data plan or having difficulty with the videos, we recommend listening in via the MP3 file.

If you haven’t “liked” our Facebook page, be sure to head on over to http://Facebook.com/invisibleillnessweek . We will be posting follow ups there in coming weeks.


Thanks to all of you who have been tweeting, pinning, and more. We have had over 300 people come to the #iiwk12 site from Pinterest. over 50,000 of you have visited our website and hundreds of you have helped spread the word with your blogs. And nearly 140 people have commented at our CNN.com article.

I know this week is a bit crazy, but please keep this email and when you begin to feel misunderstood or like no one really understands what you are coping with, this is a great source to come back to.
I hope you have a great day!

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Feeling “Naked” In a Crowd Due To My Invisible Illness

September 13, 2012 by  
Filed under Guest Bloggers & Articles, What's New

feeling naked Feeling Naked In a Crowd Due To My Invisible Illness
Suzy Raffensperger

Allowing your invisible illness to show is akin to “standing naked in a crowded room of well-dressed people.” I saw this statement on the blog site, Sick Momma and all I could picture was the story of the Emperor’s New Clothes.

In case you have forgotten it:


Once upon a time there was this Emperor that was so full of himself that he was easily trick by gangsters posing tailors. They said they’d make him some duds that only non fools could see. So when they bought the Emperor the suit and he couldn’t see it, he thought OMG, am I a fool or what. And not wanting to appear a fool, he pretended to put the invisible suit on, when in truth there was nothing there. So the old fool, the emperor, went out in public in his invisible clothes. No one wanted to tell the Emperor that he was naked except for a punk kid. But the Emperor continued to pretend he was still dressed because he didn’t want to appear the fool that he was.

 

The Emperor was “naked” in crowd of dressed people. That is how the people with an invisible chronic illness feel–naked. Those with invisible chronic illnesses feel vulnerable, living in a world of healthy and whole people.

Those with invisible chronic illnesses walk around with their mask on. They only let there mask slip a bit to let there nearest and dearest friends and family know about their illness. But they shouldn’t have to live this way. Having medical issues doesn’t mean the person was cursed by God, a sign of moral failings, a sign of weakness, or they in some way deserved to become ill. It just simply means they are ill.

Invisible chronic illnesses are easy to hide. You can hide them from others and you can deny them to yourself at times (especially if others don’t know you are ill).

I consider myself one of the lucky people with an invisible illnesses. . .

One of my illnesses is Post Traumatic Stress Disorder. During and educational seminar that I was helping to run, I had a flashback. Suddenly, about 50 people that I worked with became very aware that I had PTSD. My invisible illness was “outed” so to speak; my invisible illness was visible.

Being “outed” is probably the best thing that ever happened to me. Hiding an illnesses if a horrible way to live. It is living the life of a lie, it is not living in the reality of the truth. I think everyone with invisible chronic illnesses deserves the best in life they can get, and the best includes the truth. Now, I get to celebrate openly, the fact that I survived what was once an unspeakable time in my life. I get to celebrate that I am alive, living with chronic illness, but alive.

Now I am very upfront about my invisible chronic illnesses when appropriate. If people honestly want to learn about the illnesses I have, I am more than happy to teach them (I am a disable RN). I know that the best way to get rid of stigmas is to speak out about them; it is important to educate those around us. As for me, I like to share the hope and freedom I have gained by speaking out.

Suzy Raffensperger is married and has 3 adult children. She is the author of Mimi’s Tale: A Story of Transformation. She had a migraine variant that left her residual neurological deficits. The deficits affect her short term and working memory, and left her unable to continue working as an RN. Besides Chronic Migraines, Although Suzy has many chronic invisible illnesses, she finds her Mixed Connective Tissue Disease, Fibromyaglia, Asthma. Post Traumatic Stress Disorder, and Diabetes the ones that most interfere with her daily life.

Being unable to continue to function in a typical setting for a nurse, Suzy has taken to blogging as a way of chronicling her journey towards better health and passing on articles that she thinks may help others on similar situations. Her blog can be found at artfulabilities.blogspot.com

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It Is Hard to Explain Illness To Friends

September 12, 2012 by  
Filed under Articles, What's New

explain illness It Is Hard to Explain Illness To FriendsPart of the challenge of living with an invisible illness is explaining it. I mean, if we lived isolated and it was you and your illness on a deserted island, would it really matter if it was visible or invisible? Not really.

It’s trying to find our place in a culture that values health and who pretty much believes, if you are ill, you must have done something to cause it. We find ourselves defending it, trying to show the legitimacy of it. We can get caught up in explain illness and all that it entails rather than just focusing on being the healthiest ill person we can be.

Many of the seminars this week have focused on how to better explain your illness to those who expect to see the pain you are in. Wayne and Sherri discussed things people say that are not (and are) helpful; Georgia talked about how our personality styles can make a difference in how we respond to being “cheered up.”

Rosalind discussed what it’s like when your peers at work cannot see your illness. Mary talked about how much talk about it is too much. And Tiffany described ways to try to educate those around you. More seminars coming up talk about marriage, and recovery and trying to explain illness to those around us.

Can we admit. . . it’s tough, isn’t it? Even when we have people who sincerely want to learn what is helpful and hurtful, it’s still hard for them to remember all the time because (1) they don’t live in our shoes–or rather, in our body. (2) Since they don’t have the daily pain, they can easily forget. It just slips are mind. We all have a lot on our mind, so can we really blame them?

But the key here? We keep trying. We offer suggestions. We allow others to make mistakes. We give grace when we are angry. We learn to take care of ourselves, by stepping back from certain relationships, and we learn when to take what someone can offer and lower our expectations.

I put this little video together last year for Invisible Illness Awareness Week and it has nearly 9,000 views. You are not alone. We are in this together. And remember, when people say things that hurt, it is because they don’t know better. They don’t know it’s bad etiquette. Most the time, they are not trying to be hurtful–they just don’t know how to help.

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Did this hit home with you? Do us a favor and pass it along to encourage someone else. Share it, pin it, whatever — we appreciate it!

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Wednesday’s Happenings for Invisible Illness Awareness Week

September 12, 2012 by  
Filed under Announcements, What's New

events wednesday2 Wednesdays Happenings for Invisible Illness Awareness Week

Good morning!
It is Wednesday of Invisible Illness Awareness Week and today we add a fourth seminar through Friday at 5 PM pacific. We will be emailing this separately to our subscribers to ensure you get it in time.

Everything is available at http://invisibleillnessconference.com

Today we have some great seminars today at Invisible Illness Awareness Week, Mary Siegel, co-author of “Sick and Tired of Feeling Sick and Tired” (a classic!), working from home when ill with Jill Hart, finding yourself with Renee Fisher and parenting teens and tweens with Dena Dyer. All videos are archived and we love hearing from you. Tweet the parts you love with #iiwk12 – And thanks in advance for for sharing this email! You never know who you love who is suffering silently with an invisible illness.

PRESS!

I am so excitd to share that we have an article on CNN.com !They posted it yesterday and they also feature 10 photos from our “images of hope”campaign. And over at Huffington Post they featured “8 Ways to Annoy a Friend With a Chronic Illness.” It is exciting to see national media drawing attention to invisible illness.

Please take a moment this week to go to these two articles. Write a comment, click “like” and “share.” This is our opportunity to NOT be Invisible and instead, show the media that we are out here and these issues are worth calling attention to. Too often, when articles like this appear we all say, “oh, that is great!” to or computer screen but then we click away. Please help keep this issue in the spotlight by having your opinion known.

BUZZ!

Thanks to WegoHealth who has organized “Health Activist Inspiration Month.”  Yesterday they had a great chat on Twitter about invisible illness. You can see the tweets by searching Twitter.com for #HAchat.

We have a lot of people blogging for Invisible Illness Awareness Week and we encourage you to take time to visit at least some of the websites, even if it is not for a couple of weeks. There are about 60 blogs already of people who are “blogging for the cause.”

Below are a few of the kind comments you all have posted. We so love to hear if something has been helpful or encouraging for you, so please let us know.

Blessings,

lisa signature1 Wednesdays Happenings for Invisible Illness Awareness Week

 

 

 

 

“This was inspiring. I have been searching for such advice and this interview is very specific and really helpful. Thank you!!!” about Tiffany’s Who Am I Now? Seminar

“Thank you for working so hard to help so many living with illness and pain!”

“Tiffany’s insights not only have given me comfort in knowing I’m not alone in these challenges but also have given me a better understanding of this process as well as new ways of how to cope and adjust. I cannot tell you how incredibly encouraging, helpful, and inspiring this video has been to me!”

“Arlene and Lisa thank you! your talk was so amazing. I so appreciate your wisdom and insight. Thoughts on health and marriage when dealing with chronic pain were so helpful. I know I will be listening to this again! God bless you.”

“Sherri and Wayne, Thank you! Your video was encouraging. I’m still in the early stages of trying to get diagnosed and it’s so frustrating when others say I don’t look sick or have the same expectations of me being able to acomplish the same tasks as before I get sick such as making dinner, cleaning the bathroom. Even getting out of bed is a chore some days. Thank you again…I feel that there has been a bright spot in my day today after watching this.”

“Listening to this conversation would help anyone understand how to improve their relationships! Thank you Georgia and Lisa for investing your time in this. You have blessed me so much! I plan on sharing this information with my family and friends.”

“Thank you soo much. I’m in the UK and have just discovered you. So looking forward to the week. Your hard work to raise awareness and to help is invaluable to all of us with invisible illnesses across the world – my FB friends are going to be sick of it by the end of the week rest assured, but I hope they will have learned something too. Thank you”

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Let’s Choose Friendships Over Fragrances

September 12, 2012 by  
Filed under Guest Bloggers & Articles, What's New

sherri connell scooter Lets Choose Friendships Over FragrancesSherri Connell

Often loved ones have difficulty with going fragrance-free for someone who lives with mild to serious reactions to chemicals in fragranced products. As you can imagine, this can lead to isolation and feelings of being abandoned for people like myself who miss out on holidays, get-togethers and simple visits.

This is a video I did with my friend, Karyn Buxman when I had to have surgery out of town and needed a place to stay. I wanted to get a candid view of what a friend or family may feel, fear or think when I ask them to go fragrance-free so that we may visit.

I hope that loved ones will see how simple this is and how valuable it is to make a difference in the life of their friend or family member. The Cleaner Indoor Air Campaign is using this video to create more awareness for the millions living with Environmental Illness (Multiple Chemical Sensitivity, Chemical Injury, Toxic Encephalopathy).

Research done in 2004, 2005 and 2009 by Stanley M.Caress and Anne C. Steinemann “… found that nearly 38% of Americans report adverse effects when exposed to some kind of fragranced product.” With approximately 310 million people in America in 2010, that is almost 117 million Americans who report adverse effects to normal, everyday products.

For more information on the Choose Friendships Over Fragrances project, visit the Cleaner Indoor Air Campaign (CIAC)

Sherri has always been an extremely active person. She used to cheer-lead, sing and dance in musicals, act in commercials, work multiple jobs and obtained 3 college degrees. However, she has been unable to work or care for her daily needs since 1991, due to Progressive Multiple Sclerosis and Chronic-Late Lyme Disease. She lives with unbearable and disabling pain, fatigue, cognitive disorders 24×7. She also has Chemical Injuries and Intolerance, which has kept her very isolated from friends and family.

Sherri’s website comes to life with her writings and videos sharing her story, information about her illnesses and a positive outlook amidst her daily pain and losses, as well as her desire to help friends and family better understand debilitating conditions. Sherri’s husband, Wayne, is the Founder and President of the Invisible Disabilities Association.

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Conference Opening Seminar with Lisa Copen

September 10, 2012 by  
Filed under Announcements, Seminars, What's New

copen lisa Conference Opening Seminar with Lisa Copen Welcome to the tenth annual Invisible Illness Awareness Week Virtual Conference.  We are so excited you are here.

So here is the run down of things to know:

  • Below is the welcome seminar. Listen to this first!
  • All seminars are archived you can listen to them anytime.
  • There are also MP3 files (audio only) you can listen to.
  • The headquarters for all things Virtual Conference is http://invisibleillnessconference.com
  • If we have any technical problems, we will post this. Otherwise, it is your connection. If you are having trouble with the video, you may want to just let it load for 20 minutes and then click “play.” If that doesn’t work, grab a teenager to help you.
  • Don’t forget to get your conference goodie bag!

Have fun! Leave comments on the videos so our speakers can get back to you, connect with others on our Facebook page, read some awesome blogs, and think of this as a week to “retreat in” and take care of yourself. Welcome!

to increase video size Conference Opening Seminar with Lisa Copen When you are done listening, we appreciate you clicking “like” for Facebook, or Pinning it to Pinterest. We would love to be able to encourage your friends today.

leave comments1 Conference Opening Seminar with Lisa Copen
Audio file – Lisa Copen, Introduction

Get to know Lisa: Lisa’s webpage | Rest Ministries webpage | Lisa on Facebook | Lisa on Twitter | Invisible Illness Week on Twitter | Invisible Illness Week on Facebook

Lisa’s books: Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend, Why Can’t I Make People Understand, Mosaic Moments: Devotionals For the Chronically Ill, see more

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