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Being A Health Activist is Challenging #A4Amonth

Posted by Connie on Thursday, August 23rd, 2012 at 11:32 pm and is filed under Advocate, Autoimmune Disease.
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Prompt: Leading a community isn’t all sunshine and ice cream – it’s hard. Write a post that delves into 3 challenges that you face as a Health Activist.

Whoa, I don’t lead the Autoimmune Community, but I do advocate for it. And yes, it’s challenging, but so rewarding too. Please don’t take these as complaints. This is a reality check though.

As someone who has five autoimmune diseases (Ulcerative Colitis, Fibromyalgia, Sjogren’s Syndrome, Myasthenia Gravis and Rheumatoid Arthritis), I’m tired a lot of the time and hurting most of the time. I’m used to it and have learned to deal with it. When it comes to being an advocate – talking to someone online or on the phone that has questions or is feeling down, writing blog posts like this one or attending a meeting – there are times that I want to go to bed and zone out. My body is screaming for sleep. I need to do some deep breathing to get a handle on the pain. I am in no way a martyr. There are lots more people who do much more than me, but this is how I feel sometimes. My own needs get in the way and I don’t like it.

I get angry when people refuse to listen to facts. People still believe that because you look good, there’s nothing wrong with you. Listen up! Just because we can get out of bed, get dressed and put a smile on our faces doesn’t mean that our pain level isn’t sky high. No one knows what goes on behind closed doors. It may take hours to get ready and that smile is real, but it can be because we’re finally out around friends and doing something fun, or that smile is plastered on. Then there are people who believe that we did something to deserve being sick. I could go on and on, but I’d rather dwell on those who support us and understand.

It’s easy to feel hopeless when very little in the way of new treatments or dare I say “cure” comes around. When I’m explaining the facts or talking someone down who feels like giving up, that tiny little voice sneaks up and says, “there’s not much to offer them”. Be quiet! There’s so much to offer – beautiful flowers and clouds, hugs from children, the wonder of the written word, the kindness of strangers. Live each day and look for magnificence.

Just like in life, there are good days and bad, good moments and bad, when you advocate for a community.

I’m taking part in the WEGO Health blog carnival. To learn more about the Advocating for Another Blog Carnival visit http://bit.ly/A4Amonth.

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Invisible Illness Week Is Vital

Posted by Connie on Friday, September 11th, 2009 at 11:55 pm and is filed under Advocacy, Chronic Illness, Support Group.
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Invisible Illness Week begins on Monday, September 14th at 9 AM. It’s a virtual conference and the schedule is for the whole week, ending on September 20th. This conference supports those of us who are chronically ill but don’t have outward signs of our illness. There has never been more of an important time, in my opinion to take part in National Invisible Chronic Illness Awareness Week than now. Thank you to Lisa Copen who coordinates this event every year.

Since congress is making a decision on Health Care Reform, let our voices be heard! We are often the ones who pay high prescription costs, get denied Social Security Disability even though we cannot work so we go without insurance, and/or get denied insurance because of pre-existing conditions.

Please watch Marianne Hoynes, who has Sjogren’s Syndrome and Rheumatoid Arthritis as she attempts to speak at a town hall meeting on Health Care Reform:

It was noted that many people could not see that Marianne was not in a wheelchair. So even those of us who have “visible traits” of a sickness are not given the right to speak out on issues that matter to us all.

Visit msnbc.com for Breaking News, World News, and News about the Economy

We all matter.

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30 Things About My Invisible Illness

Posted by Connie on Monday, September 7th, 2009 at 8:56 pm and is filed under Advocacy, Autoimmune Disease, Chronic Illness.
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30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Myasthenia Gravis, Sjogren’s Syndrome, Fibromyalgia, Rheumatoid Arthritis and Ulcerative Colitis.
2. I was diagnosed with it in the year: with UC in 1985, with MG in 2000, the rest 2001 or the year later.
3. But I had symptoms since: 19844 for the UC
4. The biggest adjustment I’ve had to make is: not being able to work and giving up my active lifestlye
5. Most people assume: I’m not sick
6. The hardest part about mornings are: waking up because I’m so tired
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: my laptop
9. The hardest part about nights are: pain and insomnia
10. Each day I take __ pills & vitamins. (No comments, please) 36
11. Regarding alternative treatments I: am not able to try them because of the medications I am on for Myasthenia Gravis. There are many interactions for a certain prescription I take.
12. If I had to choose between an invisible illness or visible I would choose: visible so more people would understand
13. Regarding working and career: I’m sad that I can’t continue working in the career I chose for myself. I’m happy that I can work as a blogger though.
14. People would be surprised to know: that I’m in pain almost all the time.
15. The hardest thing to accept about my new reality has been: that I have to rely on other people for simple things.
16. Something I never thought I could do with my illness that I did was: attend a conference.
17. The commercials about my illness: re: Fibromyalgia and RA – make it seem like a pill or shot cures the disease.
18. Something I really miss doing since I was diagnosed is: dancing, drinking  a few beers, running, walking as much as I want to
19. It was really hard to have to give up: working
20. A new hobby I have taken up since my diagnosis is: blogging and photography
21. If I could have one day of feeling normal again I would: spend it with my family, listening to loud music, dancing, cooking and eating all day long
22. My illness has taught me: to appreciate every moment
23. Want to know a secret? One thing people say that gets under my skin is: you look great!
24. But I love it when people: recognize that most of the things I do take me a lot of effort
25. My favorite motto, scripture, quote that gets me through tough times is: I can do all things through Christ who strengthens me. Philipians 4:13
26. When someone is diagnosed I’d like to tell them: find a doctor who is supportive and knowledgeable and a support system
27. Something that has surprised me about living with an illness is: how understanding my husband and family are
28. The nicest thing someone did for me when I wasn’t feeling well was: take my daughter, who was much younger for play dates so she didn’t have to sit home while I slept
29. I’m involved with Invisible Illness Week because: it’s so important for people to understand about us, what our lives are like, what we go through each day and how they can support us
30. The fact that you read this list makes me feel: fantastic!

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

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Lisa Copen Invisible Illnesses Leader And Supporter

Posted by Connie on Wednesday, August 26th, 2009 at 8:04 pm and is filed under Advocacy, Chronic Illness, Support Group.
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Lisa Copen is a force to be reckoned with. Although she has Rheumatoid Arthritis and Fibromyalgia, she is the leader of the National Invisible Chronic Illness Week aka Invisible Illness Week. She also runs Rest Ministries, which is an online support group for people with chronic illness.

lisa_copenLisa was diagnosed at 24 with Rheumatoid Arthritis so she can understand what it is like to be a young person facing a life long disease. She feels exhausted a great deal of the time and her hands and feet hurt most of the time. In fact right after last year’s Invisible Illness Week, she had to have surgery on her foot. She continues to have issues with infections as well as the ongoing pain.

Although Lisa is found everywhere on the web, she does have a personal life too. She is married and has a 6 year old son. She openly shares about the struggles she goes through on a daily basis, but those issues are tempered with her strong Christian faith and the support she receives from her family and friends both online and in real life.

Invisible Illness Week is September 14 – September 20th this year. It will be an online conference like last year, held on Blog Talk Radio. This allows people from all over to attend, as well as those who may be unable to due to sickness. Some of the speakers and topics this year include:

  • Coping with Chronic Illness in Your Marriage with Bill & Pam Farrell
  • Can Versus Should: Pregnancy, Children and Chronic Illness with Laurie Edwards
  • Applying and Winning Disability Assistance When You Are Chronically Ill with Scott Davis
  • Being a Teenager with a Chronic Illness with Naomi Kingery

There will be time for phone calls, questions and chances to win prizes. There are many ways that you can help. For example, you can blog about II Week, donate a prize, or hand out brochures.

Lisa Copen leads by example. Being chronically ill herself,  she volunteers to provides awareness about a subject (Invisible Illness) that many people do not understand or even knows exist.  She shares her personal struggles and her triumphs. She has a sense of humor about what comes her way.

She supports others in similar situations through her online work, her empathy and her kindness. She is always willing to share the limelight and gives credit to those who assist her in her work.

One of Lisa’s favorite scriptures that she hopes encourages others is “My comfort in my suffering is this: promise preserves my life.” Psalm 119:50

This is an ongoing effort to spotlight people with chronic illness, health issues and disabilities who are making a contribution in some way despite their pain, sickness, etc.

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