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A Letter to the Autoimmune Community #A4Amonth

Posted by Connie on Monday, August 27th, 2012 at 10:02 pm and is filed under Advocate, Autoimmune Disease.
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Prompt: Write a letter to your community and share a story of your own with them. Extra points if you record yourself reading the letter telegram-style!

Dear Autoimmune Community,

I hope that this letter finds you well. As much as I don’t want to share the autoimmune conditions with you, I’m grateful for your support and proud to be a member of such a brave and optimistic community.

I felt the need to share this story with you so that you may find some encouragement. As you know I was diagnosed with the first autoimmune disease over 20 years ago. After that diagnosis, others followed. When I received the diagnosis of Myasthenia Gravis at the age of 40 (9 years ago), I went into a deep depression. I was blind to it and chalked it up to fatigue and weakness.

Thankfully, a family member talked to me without holding anything back and without fear that I would get angry with her. She shared some examples of my behavior and she knew that I indeed was weak and tired, but that more of my symptoms mimicked depression. She suggested that I see my neurologist and find a psychiatrist.

Sad WomanAt first I was hurt and put her into the category of people who didn’t understand. After taking about a week to think about it, I began to realize that she might be right. I did what she suggested and was diagnosed with depression and anxiety. I began treatment with medication, talk therapy with the doctor and therapy with a counselor. The clouds were parting and glimpse of sun were coming through.

It took some time, but I began to feel much more content. To this day, I continue treatment and am proactive when my emotions get the best of me. Doses of medications may need to be changed or new meds may be started. I might need to add more counseling sessions. But the difference from how I felt 9 years ago compared to now is astounding.

Please don’t think that I believe your symptoms aren’t real. All I ask is that you learn about symptoms of depression and anxiety or listen if someone you love suggests you may have emotional problems. Your quality of life can improve.

 

My best,

Connie

This is the final day of WEGO Health’s Advocating for Another Blog Carnival.

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Acceptance and the Autoimmune Community #A4Amonth

Posted by Connie on Sunday, August 26th, 2012 at 11:43 pm and is filed under Advocate, Autoimmune Disease.
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Day six of the Advocating for Another Blog Carnival is about quotes and free writing.

Prompt: Let someone else’s wise words inspire you. Find a quote that moves you in some way then free write about it. Don’t stop writing for 15-20 mins. Now post!

If you don’t like something, change it. If you can’t change it, change your attitude. – Maya Angelou

 Those of us who have autoimmune diseases don’t like it. We wish that awful diagnosis never came about. We despise that others are hurting and have horrible symptoms. The life changing aspect of our conditions suck. And when we learn about children with the same conditions as us, we can’t even imagine what it’s like for them or for their parents. Some of us are living that situation.

We can react to our diagnosis and all that surrounds it in a number of ways and sometimes these reactions are based on the Five Stages of Grief from Elizabeth Kubler-Ross: Denial, Anger, Bargaining and Acceptance. I know I’ve been through those stages and go back and forth if I have another health problem pop up, if I have a relapse, I’m too sick to take part in a special event (negative emotions which lead to anger, denial or bargaining). When I feel well and take on a lot of work, start traveling, enjoy times with friends I often go back to denial. I’ve even stopped taking my medications. Soon, I’m overdoing it and get sicker.

 

It’s a vicious cycle, but one that I’m finally getting a handle on with the help of others. My husband is really good about keeping me accountable with my meds and not overdoing it. My friends want me to have fun but know my limits. I’ve learned that when I’m tired, I need to rest, when my symptoms start to flare up I need to call one of my doctors and to pamper myself at least once a week.

 

I’ve accepted that I have limitations (a lot of them), that I don’t need to be super woman and that it’s OK to say no. My attitude has changed from feeling sorry for myself to making the most out of my life.

As I reach out to the autoimmune community, I share my story to help them reach acceptance. And so do many others. We aren’t wimps, but it’s imperative to our health that we acknowledge the physical limitations we have and how much we need to care for our bodies.

The Big Party | Autoimmune Community #A4Amonth

Posted by Connie on Saturday, August 25th, 2012 at 11:35 pm and is filed under Advocate.
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Prompt: It’s storytelling day! Write a story about yourself, your community as though you’re a children’s book author. Be sure to include a beginning, middle, and end. Extra points for illustrations!

This is a story about the people who have autoimmune diseases:

There was a bunch of happy people, big, little, fat, skinny, tall and short, at a party in a big room. With balloons, silly hats, cupcakes, candy, clowns, ballerinas, super heroes and music. They played games and ate anything they wanted. Some danced, some told jokes and everyone smiled.

All of sudden a big scary monster came into the party. Everyone screamed and tried to run away, but he was too fast. He made them stay in the big room. He took away all of the food and drinks, all of the fun party games and decorations. And he turned off the music. Everyone was afraid and sad. Soon the monster got bored, so he turned the music back on. Then he got hungry and brought the food back in. Then he was tired and he left the party room and went to his cave to go to sleep.

The people grabbed the balloons, streamers and games. They ate and drank. All of them felt tired and they slept. They hurt all over, so they took medicine to feel better. And the party kept on going. More people came and joined in. The new people slept and rested when they were tired and took medicine when they hurt. Soon doctors and nurses came to help the people. The music played. They brought more balloons, party games, cookies and cake. And everyone smiled.

I’m participating in the WEGO Health’s Advocating for Another blog carnival. This is the fifth day. Visit http://bit.ly/A4Amonth to learn more.

The Deceiving Appearance of a Person with Autoimmune Diseases #A4Amonth

Posted by Connie on Friday, August 24th, 2012 at 11:46 pm and is filed under Advocate, Autoimmune Disease.
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This is the fourth day of the Advocating for Others Blog Carnival by WEGO Health.  I chose an optional prompt – From Inside the Fishbowl:

Prompt: People think they know what your life is life – but appearances can be deceiving. Write a paragraph about what your life looks like from the outside looking in – then write a paragraph about what it’s actually like from inside.

English: The fish bowl ???: ???

English: The fish bowl ???: ??? (Photo credit: Wikipedia)

 

Some people say I’m always smiling. I like to dress up once in a while, but I’m usually in casual clothes.  I talk a lot and quiet fast! I’m accused of being too busy.  I write my blogs. I’m online a lot. I volunteer for various causes. I am a parent of 2 daughters, one who is married and lives on her own in another state and one who is 13 and is homeschooled (taking online classes).  I am happy and positive.

I sleep a lot and when I wake up, it’s hard to move and get out of bed. I feel guilty because I can’t do the things I did before my diagnoses especially housework, driving and walking long distances. The heat makes me feel awful and worsens the symptoms of Myasthenia Gravis. My joints hurt and ache. I have migraines that put me in bed. There’s so much medicine that I have to take, that sometimes my stomach can’t handle it all. I am constantly in pain and fatigued. And I may be busy, but I want to do as much as I can now. I don’t know what the future holds.

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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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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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