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Fave Things About the Autoimmune Community #A4Amonth

Posted by Connie on Wednesday, August 22nd, 2012 at 10:24 pm and is filed under Advocate, Autoimmune Disease.
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I’m taking part in the Advocating for Others Blog Carnival made possible through WEGO Health. I chose the community of people with Autoimmune Diseases and conditions to write about.

Prompt: List time! Write 5-10 of your favorite things about your community. Celebrate their uniqueness and be sure to tell us why those are your favorite things.

  1. We are unique. I didn’t mean to steal this from the prompt, but this community is made up of different types of people. We don’t seem to have one thing in common besides having an Autoimmune condition. Yet we gather in real life or online: in support groups and in communities or forums.
  2. We Support Others. Whether strangers who need someone to listen, or close friends who need a ride to the doctor, we do what we can to assist other people. We help raise money, spread awareness and provide referrals to doctors who treat us well.
  3. We are courageous. Many of the conditions we have can lead to other medical problems, but we learn to focus on the positives. We face pain, discomfort, fatigue and many other symptoms, but we don’t let it rule our lives.
  4. We are skeptical. Yes, that’s good. We don’t take things at face value, especially those snake oil treatments that cure everything from hang nails to cancer. We research everything, even medications that our trusted doctors give us. We don’t just accept a diagnosis so we can be dismissed. And that’s where the support from others can come in. They can share what works and what doesn’t, but also understand that each person is different and can react to treatments in a different way.
  5. We are respectful. It’s OK to turn down someone’s advice or to ask for no more advice. When we have bad days, we do our best to vent, but not take it out on others. We accept that we have different belief systems, different financial situations and unique medical conditions. (Some of us have allergies, more than one autoimmune disease or other diseases.)

The best thing we can do as a community is to join forces for research on why some of get autoimmune diseases and to find better treatments.

To learn more about the Advocating for Others Blog Carnival visit http://bit.ly/A4Amonth.

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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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Working Out The Kinks

Posted by Connie on Tuesday, December 2nd, 2008 at 12:53 am and is filed under Healthy or Not, Loving Life.
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What a day it’s been. I hardly had any sleep the past few nights and my body was telling me that it’s time to slow it down, but I had already made plans to volunteer at my daughter’s school to help with the Christmas shop. This is a place where the children can buy presents for their family. The items don’t cost very much and the teachers and volunteers help to make sure that they are not overspending or buying for themselves.

Today was the first day and it wasn’t very busy, but we still had a few classes come in mainly to look at what was available. It wasn’t very hard work but I came in tired and left extra tired. I also had my support group scheduled but no one had said they were coming. I left a message at the church that I was across the street in case someone showed up.

I had a few errands to run after the school time. I had no choice but to do them. I knew if I went home I’d just fall asleep so it was better to move around. I busied myself until it was time to pick up my daughter from school and then I just drove over there and sat in the car in line. I felt myself falling asleep a few times, but thank goodness she was in the car very quickly.

My body was aching when I got home so I did some stretches to work out the kinks. It felt good to just let my muscles stretch out. After getting snacks for me and my daughter and helping her with some homework, I ended up taking a short nap.

I spent some time watching tv and relaxing tonight. I knew I did a lot of walking today so sitting was a good idea. Now I’m just going to work a little while longer and get that good night’s rest that I need.

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