Autoimmune Disease Community | Advocating for Others #A4Amonth

Posted by Connie on Tuesday, August 21st, 2012 at 11:27 pm and is filed under Advocate, Autoimmune Disease.
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Prompt: Write a descriptive portrait of your community. Share qualities that make them, them – and include an image! (A photo or creative work of /about them!)

The autoimmune disease community is made up of people of all ages, but mainly adults, all races, backgrounds and both male and female. Some of us have been diagnosed with one autoimmune disease, others with 2 or more. We know that our medical condition is most likely chronic. For some of us, it makes us ponder how our own body works.


Autoimmune means that your body is fighting against itself. For example, with Sjogren’s Syndrome your body fights against the glands that produce tears and saliva. It can be a strange feeling knowing this, but we take part in medical studies so more can be learned about these types of conditions.

We are fighters. Even though most of us deal with fatigue we don’t give up helping others and working with our doctors to help ourselves. We share what we know with others who are going through the same thing as us. We form support groups, ask for new legislation for research and we donate our time and money to organizations that support autoimmune diseases.

We are partners. Once we can deal with our diagnosis or diagnoses, we feel the need to help others get the facts, find resources and be able to voice their concerns. We understand what is means hurt and/or be tired all the time, to be depressed and scared, and to feel alone.

We have compassion. We can empathize with people more easily, even those that aren’t sick.

We are hopeful. We hope for better treatments and try medications to lessen our symptoms. We don’t want the same for next generation.

I chose a quilt to symbolize the autoimmune community because although we are different in many ways, we come together to make things better for ourselves and for others. – image source

I am participating in WEGO’s Advocating For Another Carnival. To learn more about it, visit

Health Insurance For All

Posted by Connie on Friday, June 1st, 2012 at 11:13 am and is filed under Advocate, Chronic Illness.
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English: U.S. Health Insurance Status (Under 65)

English: U.S. Health Insurance Status (Under 65) (Photo credit: Wikipedia)

Everyone needs health insurance, even healthy people.  You never know if you are going to get sick or get into an accident. Things can change drastically concerning your health in the matter of minutes. For those of us with chronic illnesses, finding affordable health insurance can be next to impossible, especially if we have to pay for it on our own. Finding a company that offers pre existing health insurance is like finding a needle in a haystack. Then the cost can be outrageous and the deductible and co-pays may make it not worth it financially.

I know of people who rely on the emergency room for their health care because they don’t have health insurance. Hospitals must accept you whether or not you have insurance or can pay for your care. Some hospitals offer programs to help you pay off your bill, lower your bill or send your bill to a nonprofit that pays it for you. But, what kind of care are these people getting? It’s not personalized and ongoing so that you a doctor tracks your symptoms on an ongoing basis. Plus, prescriptions can be too costly so the after care isn’t followed through. This is a just one time when low income health insurance is needed.

I don’t have all the answers for the health insurance dilemma, but one thing I know for sure is that people with low incomes need access to low cost insurance. In the long run, it will save money for everyone. Health care costs will be lowered since those of us with insurance aren’t paying for people without. And it’s just morally right that people who need health care get it, especially if they can’t work due to illness, if they are children and if they have put money into our national health insurance – Medicare – for a long time.

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Give Me Your Best Diagnosis #HAWMC

Posted by Connie on Monday, April 23rd, 2012 at 10:04 am and is filed under Advocate, Healthy or Not.
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Prompt: Health Activist Choice Day 2! Write about whatever you like.

Have you had a doctor tell you, “I don’t know”? It’s refreshing to hear that, especially when he says that he’s going to continue to find an answer, a diagnosis and a treatment. I’d much rather hear that than be given some farfetched diagnosis that I and my doctor both know is ridiculous.

This happened to me recently and it’s happening more frequently. I understand that you need to fill in the blank on insurance paperwork for a diagnosis, but don’t give me some baloney story. It makes me feel like I’m too stupid to realize that you just don’t know.

My health issues are so complex and I’m always coming up with WBS – Weird Body Symptoms – that I wouldn’t blame any doctor who was bewildered with a pain that I’m complaining about, or nausea. With me and probably with others who have multiple chronic illnesses, it’s going to take time to separate one condition from another first. Then making the decision through tests, blood work, etc. will be needed to determine if it’s something entirely new.

Doctors, it’s OK to admit that you don’t have an answer. Be reassuring that you’re not giving up. Work with me and let’s get to work on getting a real diagnosis.

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Health Notes to Remember #HAWMC

Posted by Connie on Sunday, April 22nd, 2012 at 3:57 pm and is filed under Advocate, Chronic Illness.
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Prompt: The Things We Forget. Visit and make your own version of a short memo reminder. Where would you post it?

Health Notes to Remember to Share with the Public:

Invisible Disablilities

I’d post this on my car when I park in a handicap spot.

Live Life to the Fullest

This needs to be in doctors’ offices and hospitals.

Chronically Ill appearance

I wrote this quote years ago. I’d post it everywhere.

Health Notes to Remember for Myself: These can work as affirmations. I’d stick them on my bathroom mirror.

Sing, hum, listen

Just keep swimming

Share your notes with me so we can encourage each other.



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Health Advocate Pinboard #HAWMC

Posted by Connie on Monday, April 16th, 2012 at 10:43 pm and is filed under Advocate, Chronic Illness.
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Prompt: Pinboard. Create a pinterest board for your health focus. Pin 3 things. What did you pin? Share the images in a post and explain why you chose them.

My Health Advocate Pinboard – hope you’ll follow it and my other boards!

Sleep is good for you (because I have to sleep a lot, sometimes too much):

Sleep is good for you

Image Source -

Myasthenia Gravis Warrior (because this image shows how much symptoms can vary among people with MG and how strong we are):

Myasthenia Gravis Snowflake Warrior

Image Source:

Overcoming Suffering (because this inspires me to keep going and to keep advocating for others):

Overcoming Suffering Quote

Image Source -

Image Sources: 1.



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Keep Calm #HAWMC

Posted by Connie on Monday, April 9th, 2012 at 8:14 pm and is filed under Advocate, Chronic Illness.
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Prompt: Keep calm and carry on. Write (and create) your own Keep Calm and Carry On poster. Can you make it about your condition? Then go to ( and actually make an image to post to your blog.

Keep Calm Healthcare Advocate

You can be a health advocate! For those of you who already are, stick to it and thank you.

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