Each year, National Invisible Chronic Illness Awareness Week is observed to educate the public and raise awareness about invisible illnesses. One of the blogging activities this year is a "meme," 30 Things About My Invisible Illness You May Not Know. So, here it goes:
1. The illness I live with is: Migraine disease
2. I was diagnosed with it in the year: 2002? It seems like a life time ago.
3. But I had symptoms since: I was about 13 - I'm 32 now.
4. The biggest adjustment I’ve had to make is: Not trying to push too hard because I am not super woman and it will hurt tomorrow if I push too hard today.
5. Most people assume: that Migraines are "just headaches."
6. The hardest part about mornings is: motivating myself to get moving since the pain is already there most days.
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn’t live without is: my computer
9. The hardest part about nights is: insomnia and nausea
10. Each day I take *_9_* pills & vitamins. - that's what I have to take, if I don't feel well that number climbs quickly
11. Regarding alternative treatments I: have only tried aromatherapy
12. If I had to choose between an invisible illness or visible I would choose: visible, or one with a cure would be even better!
13. Regarding working and career: it's a challenge every day.
14. People would be surprised to know: I have some sort of pain every day.
15. The hardest thing to accept about my new reality has been: not being able to do the things I used to love like having a drink with friends, staying up late, going to a theme park and riding rides.
16. Something I never thought I could do with my illness that I did was: meet so many great friends who share my disease.
17. The commercials about my illness: annoying, stupid, and really don't help explain the disease for what it is. It's very sugar coated.
18. Something I really miss doing since I was diagnosed is: have a few drinks and stay up late
19. It was really hard to have to give up: my former life.
20. A new hobby I have taken up since my diagnosis is: blogging
21. If I could have one day of feeling normal again I would: probably be too scared to do anything since I would regret it the next day!
22. My illness has taught me: to be more compassionate and just because someone may look fine, that does not mean they are not suffering with something.
23. Want to know a secret? One thing people say that gets under my skin is: "We gotta get you a good doctor" or "oh you still have Migraines?"
24. But I love it when people: are willing to learn about the disease instead of judge me unfairly
25. My favorite motto, scripture, quote that gets me through tough times is: "The most authentic thing about us is our capacity to create, to over come, to endure, to transform, to love and to be greater then our suffering." - Ben Okri
26. When someone is diagnosed I’d like to tell them: learn all you can about this disease
27. Something that has surprised me about living with an illness is: how far we have to go
28. The nicest thing someone did for me when I wasn’t feeling well was: everything! My husband bends over backwards when I am sick. He knows if I can't do it, I must feel really crappy.
29. I’m involved with Invisible Illness Week because: We need to raise awareness and get the right information out there.
30. The fact that you read this list makes me feel: a little less alone
Showing posts with label invisible illness week. Show all posts
Showing posts with label invisible illness week. Show all posts
Tuesday, September 8, 2009
Monday, September 8, 2008
Invisible Illness Week Starts TODAY!
Today is the start of Invisible Illness week.
I was reminded way too much recently that I have an invisible illness. I suffer from Migraine Disease. I also suffer from Depression.
The Depression may come and go, but the last couple weeks were just awful. It was brought back on by a drug, Inderal, that I was taking as a preventive for my Migraine Disease.
Yes, sometimes the drugs we take have adverse side effects that seem to put us back a few steps. I spoke with my doctor today and I am tapering off of it and seeing him next week.
And just for those of you who may think that living healthy or breathing deep will "cure" Migraines - I already do all of that.
I tried the natural approach for almost a decade as my Migraines got progressively worse. I hated the thought of having to be on a drug for the rest of my life. I tried to just suffer though an attack - not even take Advil - and you know where it got me? In the doctors office for some preventive medication!
If those things work for you - I really am truly happy for you. But please don't preach to me how your way is the ONLY way - I've tried it. The only way I can even somewhat function in my daily life at this time is with preventive medication.
Yes, we Migraineurs get a slew of different reasons thrown at us as to why what we are doing is not the right approach. That I can think of off hand, I've been told "no more caffeine", "get pregnant", "breathe deeply and relax", "try chiropractic", "try holistic healing".
Ya wanna know something people: I've tried it all!!!!! Well, except for the getting pregnant one. That one will have to wait for a very long time.
Having an invisible illness is a sad and lonely thing to go through in life. It take so much some days for me to wake up and face the day. I take a handful of supplements every morning, on top of my preventive medication. So it's not like I'm taking just the preventive. I take 6 different pills before my preventive, and that's just vitamins and minerals.
Walk a mile in my shoes and tell me that what I'm doing is wrong. Tell that to anyone with Cancer, Fibromyalgia, Diabetes, Depression, or Chronic Fatigue Syndrome. It SUCKS!!!
But, as my favorite saying goes:
"The most authentic thing about us is our capacity to create, to over come, to endure, to transform, to love and to be greater then our suffering." Ben Okri
I will be greater then my suffering. This disease has made me want to make a difference for myself and for others.
Awareness is key. I intend to fight for a cure, to fight for better doctors, and fight for all of us out there suffering. "Safety in numbers" as they say. Together we will change the face of Invisible Illness.Wednesday, August 27, 2008
Seems like everyone has advice....
Yes, I have an invisible illness. You can't see it, and if I didn't tell you I had it, you would probably never know.
Even with Migraine Disease, I have managed to still work and have a somewhat normal lifestyle. This is not to say that I don't end up in pain at work, or have to cancel plans last minute, but I still consider myself one of the lucky ones. Migraines have not totally disabled me.
For the times people do see me in pain, I get a lot of "have you tried this?" comments thrown my way. Maybe it's because the average person does not really understand that Migraine is "not just a bad headache".
Migraine is a genetic neurological disease affecting close to 36 million Americans. Migraine affects more people the Diabetes, and is the 12th most disabling disorder in the US.
You would think with those numbers, more people would know what it is. I guess because with Diabetes, people know it's watching your diet or insulin that is used to control it.
It just seems odd to me that there are so many people out there with misconceptions or no knowledge about Migraine at all! That's probably part of why it's under diagnosed and an individual waits till their attacks are very chronic before getting treatment.
The "can't they do anything for you" comments get old. I get tired of answering them. I am doing everything I can, trust me. If you felt anything like I feel on a daily basis, you would be on the computer researching Migraine, talking to people, looking for the best specialist in the world, no matter what the cost.
Granted, I am happy when I see a news report on Migraine make the evening news, but still, the information given to the general public is information Migraineurs have had for over two years. The news acts like it's a new fangled test, drug or device, when it's been on the market for years!
I wish for the day when invisible illnesses like Migraine, Multiple Sclerosis, Fibromyalga, and many others are hitting the main stream publications and radio waves.
So many of us suffer alone, trapped inside our pain. But having support groups out there make life a little easier. Knowing that "oh she feels that way too!" is comforting. Sharing pain is a powerful bond, yet I don't wish it on anyone.
There are a lot of great organisations and support out there if you suffer from Migraine:
My Migraine Connection
The Alliance for Headache Disorders Advocacy
MAGNUM
The Migraine Research Foundation
The National Headache Foundation
Oh, and I can't pass by this little tid bit either.
If you have someone that is a "can't they help you" person or just doesn't understand, give them a copy of Teri Robert's Friends and Family Letter and help educate them!
Find more videos like this on Illness-Disability-Healthcare-Caregiver Ministry Network
I just wish for those who don't understand to maybe think before they make comments.
Even with Migraine Disease, I have managed to still work and have a somewhat normal lifestyle. This is not to say that I don't end up in pain at work, or have to cancel plans last minute, but I still consider myself one of the lucky ones. Migraines have not totally disabled me.
For the times people do see me in pain, I get a lot of "have you tried this?" comments thrown my way. Maybe it's because the average person does not really understand that Migraine is "not just a bad headache".
Migraine is a genetic neurological disease affecting close to 36 million Americans. Migraine affects more people the Diabetes, and is the 12th most disabling disorder in the US.
You would think with those numbers, more people would know what it is. I guess because with Diabetes, people know it's watching your diet or insulin that is used to control it.
It just seems odd to me that there are so many people out there with misconceptions or no knowledge about Migraine at all! That's probably part of why it's under diagnosed and an individual waits till their attacks are very chronic before getting treatment.
The "can't they do anything for you" comments get old. I get tired of answering them. I am doing everything I can, trust me. If you felt anything like I feel on a daily basis, you would be on the computer researching Migraine, talking to people, looking for the best specialist in the world, no matter what the cost.
Granted, I am happy when I see a news report on Migraine make the evening news, but still, the information given to the general public is information Migraineurs have had for over two years. The news acts like it's a new fangled test, drug or device, when it's been on the market for years!
I wish for the day when invisible illnesses like Migraine, Multiple Sclerosis, Fibromyalga, and many others are hitting the main stream publications and radio waves.
So many of us suffer alone, trapped inside our pain. But having support groups out there make life a little easier. Knowing that "oh she feels that way too!" is comforting. Sharing pain is a powerful bond, yet I don't wish it on anyone.
There are a lot of great organisations and support out there if you suffer from Migraine:
My Migraine Connection
The Alliance for Headache Disorders Advocacy
MAGNUM
The Migraine Research Foundation
The National Headache Foundation
Oh, and I can't pass by this little tid bit either.
If you have someone that is a "can't they help you" person or just doesn't understand, give them a copy of Teri Robert's Friends and Family Letter and help educate them!
Find more videos like this on Illness-Disability-Healthcare-Caregiver Ministry Network
I just wish for those who don't understand to maybe think before they make comments.
Monday, August 25, 2008
Invisible Illness Week - September 8-14
Next week is Invisible Illness week. It is very important to us in the "invisible illness community" to keep getting the word out on our invisible illnesses.
In my case, it's Migraine Disease. Ya can't see it, but I know it's there!!
Please read below for the press release from Invisibleillness.com
Blogging for Awareness of Invisible Illness Week Unites Thousands
AUG 2008
Chronic illness statistics are staggering, with nearly 1 in 2 people in the USA living with a chronic condition and, according to U.S. Census Bureau, about 96% of illnesses are invisible. With hundreds of thousands of people on the Internet searching for health information and support, thousands of bloggers now post daily journals about the emotional challenges they live with while facing a daily chronic illness filled with pain.
National Invisible Chronic Illness Awareness Week, September 8-14, 2008, is inviting these blogs to have a substantial role in their awareness campaign. For example, part of their outreach includes over thirty days of guest bloggers as well as bloggers across the internet posting about invisible illness matters. For example, if you have an invisible illness-and a legal handicapped parking placard-you’ve likely faced a few stares and questions if you park in the blue spot since your invisible illness does not require the use of a wheelchair.
All over the internet, bloggers are putting their illness awareness efforts together to join in helping more people become aware of invisible illnesses. They show their support by posting about invisible illness issues, on their own blog. A downloadable badge that says, “I’m blogging for Invisible Illness Awareness Week” can spread the word about their commitment to the cause. Plus, bloggers are also thanked publicly each Friday on the Invisible Illness Week blog, which can give them lots of extra exposure for their own web site. Bloggers can post anytime, but they are also encouraged to specifically post on September 8th to kick off the week.
Lisa Copen, who founded National Invisible Chronic Illness Awareness Week in 2002 says, “Though we live with thousands of different illnesses, we have more in common than not. For example, illness impacts our families, careers, finances and daily living, to name a few. We can all learn from one another and share during this journey.” She adds, “And frankly, people are tired of hearing, ‘But you look so good!’ and they want others to know that their illness is legitimate despite how well they seem to be holding it all together.”
Laurie Edwards is the author of a recently published book called, “Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties.” She has blogged about her illness since 2006 and says, “When you are a young adult people expect you to put in long hours to establish a career, to jump into the dating world, and to build a life for yourself. But they certainly don’t expect you to be sick. There’s no such thing as ‘too young’ to be sick! That is just one of the many reasons why Invisible Illness Week is so important!”
If you would like to join this unique opportunity to blog for awareness about invisible illnesses, see www.invisibleillness.wordpress.com . You can also receive updates, participate in surveys, win prizes, and find out more about the telephone workshops at the Invisible Illness Week web site: www.invisibleillness.com .
CONTACT:
LISA COPEN
858.486.4865
___________________________________________
Invisible Illness Week Theme Offers Hope Despite Pain
AUG 2008
National Invisible Chronic Illness Awareness Week, September 8-14, has announced the 2008 theme: “Hope Can Grow From the Soil of Illness.”
Lisa Copen, Founder of Rest Ministries, the sponsor of this annual event says, “Illness can signify the loss of one’s plans and even dreams, but most often people who live with invisible illness find a new purpose they would not have imagined under any other set of circumstances.”
The next month will feature bloggers on the topic of illness, all of who have found a renewed sense of direction, despite the life-altering changes illness has brought into their lives.
Copen, 39, who was diagnosed with rheumatoid arthritis and fibromyalgia at the age of 24, remembers searching for what her purpose would be within her new limitations.
“I had always planned to work for a nonprofit doing something to help others, but I never felt I was efficient or empathetic enough because I had not walked in the shoes of those I served. Now, through my illness ministry and books on aspects of coping with illness, I have the chance to use what I experience each day to reach out to others. It’s my hope that they will also find hope despite their illness, as they discover that new sense of purpose in the pain.”
To find out more about the telephone seminars that will be held September 8-12, as well as the invisible illness week awareness outreach products, visit www.invisibleillness.com .
CONTACT:
LISA COPEN
858.486.4865
In my case, it's Migraine Disease. Ya can't see it, but I know it's there!!
Please read below for the press release from Invisibleillness.com
Blogging for Awareness of Invisible Illness Week Unites Thousands
AUG 2008
Chronic illness statistics are staggering, with nearly 1 in 2 people in the USA living with a chronic condition and, according to U.S. Census Bureau, about 96% of illnesses are invisible. With hundreds of thousands of people on the Internet searching for health information and support, thousands of bloggers now post daily journals about the emotional challenges they live with while facing a daily chronic illness filled with pain.
National Invisible Chronic Illness Awareness Week, September 8-14, 2008, is inviting these blogs to have a substantial role in their awareness campaign. For example, part of their outreach includes over thirty days of guest bloggers as well as bloggers across the internet posting about invisible illness matters. For example, if you have an invisible illness-and a legal handicapped parking placard-you’ve likely faced a few stares and questions if you park in the blue spot since your invisible illness does not require the use of a wheelchair.
All over the internet, bloggers are putting their illness awareness efforts together to join in helping more people become aware of invisible illnesses. They show their support by posting about invisible illness issues, on their own blog. A downloadable badge that says, “I’m blogging for Invisible Illness Awareness Week” can spread the word about their commitment to the cause. Plus, bloggers are also thanked publicly each Friday on the Invisible Illness Week blog, which can give them lots of extra exposure for their own web site. Bloggers can post anytime, but they are also encouraged to specifically post on September 8th to kick off the week.
Lisa Copen, who founded National Invisible Chronic Illness Awareness Week in 2002 says, “Though we live with thousands of different illnesses, we have more in common than not. For example, illness impacts our families, careers, finances and daily living, to name a few. We can all learn from one another and share during this journey.” She adds, “And frankly, people are tired of hearing, ‘But you look so good!’ and they want others to know that their illness is legitimate despite how well they seem to be holding it all together.”
Laurie Edwards is the author of a recently published book called, “Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties.” She has blogged about her illness since 2006 and says, “When you are a young adult people expect you to put in long hours to establish a career, to jump into the dating world, and to build a life for yourself. But they certainly don’t expect you to be sick. There’s no such thing as ‘too young’ to be sick! That is just one of the many reasons why Invisible Illness Week is so important!”
If you would like to join this unique opportunity to blog for awareness about invisible illnesses, see www.invisibleillness.wordpress.com . You can also receive updates, participate in surveys, win prizes, and find out more about the telephone workshops at the Invisible Illness Week web site: www.invisibleillness.com .
CONTACT:
LISA COPEN
858.486.4865
___________________________________________
Invisible Illness Week Theme Offers Hope Despite Pain
AUG 2008
National Invisible Chronic Illness Awareness Week, September 8-14, has announced the 2008 theme: “Hope Can Grow From the Soil of Illness.”
Lisa Copen, Founder of Rest Ministries, the sponsor of this annual event says, “Illness can signify the loss of one’s plans and even dreams, but most often people who live with invisible illness find a new purpose they would not have imagined under any other set of circumstances.”
The next month will feature bloggers on the topic of illness, all of who have found a renewed sense of direction, despite the life-altering changes illness has brought into their lives.
Copen, 39, who was diagnosed with rheumatoid arthritis and fibromyalgia at the age of 24, remembers searching for what her purpose would be within her new limitations.
“I had always planned to work for a nonprofit doing something to help others, but I never felt I was efficient or empathetic enough because I had not walked in the shoes of those I served. Now, through my illness ministry and books on aspects of coping with illness, I have the chance to use what I experience each day to reach out to others. It’s my hope that they will also find hope despite their illness, as they discover that new sense of purpose in the pain.”
To find out more about the telephone seminars that will be held September 8-12, as well as the invisible illness week awareness outreach products, visit www.invisibleillness.com .
CONTACT:
LISA COPEN
858.486.4865
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