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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 http://thingsweforget.blogspot.com/ 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 - http://simplegreenorganichappy.com/2012/04/value-of-sleep-technogel-pillow-review/

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: http://www.cafepress.com/donlynsdesigns

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

Overcoming Suffering Quote

Image Source - http://www.hffcf.org/hope-membership/

Image Sources: 1. http://simplegreenorganichappy.com/2012/04/value-of-sleep-technogel-pillow-review/

2. http://www.cafepress.com/donlynsdesigns

3. http://www.hffcf.org/hope-membership/

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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 (http://www.keepcalm-o-matic.co.uk) 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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Positive Outcomes from Chronic Illness #HAWMC

Posted by Connie on Saturday, April 7th, 2012 at 9:57 pm and is filed under Advocate, Chronic Illness, Loving Life.
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Today for the Health Activist Writer’s Month Challenge – #HAWMC – the prompt is to write about anything we want. My decision is to focus on the positive things that have come from being diagnosed with multiple chronic illnesses. Don’t believe there can be constructive outcomes from having five medical conditions that I’ll live with for the rest of my life? Think again.

Gratitude

Instead of feeling down about how I feel I’ve learned to be grateful for the small things in life as well as the things I’ve taken for granted. Sure, I have bad days:  days when I spend the day in bed, crying over nothing or something specific, being hateful to others, etc.

Knowing that my health can be so much worse helps me keep me be thankful for the treatments that I receive that allow me to walk, breath without a trach, travel, maintain my eyesight and giggle with my daughters.

After I was treated successfully for depression (still on medication), I learned to enjoy the small things around me: the birds in my backyard that I watched through the window, the taste of a good meal, the hug from a friend.

Scooter at Disney World

Overcoming Obstacles

Having a medical team that works with me and understands that I will struggle to get what I want and be compliant helps me overcome obstacles that should be caused by the chronic illnesses. My goal is to live a life as “normal” as possible. I do use a scooter when I have to walk long distances, but I will walk as much as I am able without it. After a doctor put me prescription pain medication because of chronic pain from Fibromyalgia, Rheumatoid Arthritis and Osteoarthritis, I realized that I wasn’t myself. I was sleeping all the time and in a daze. Not the life I want to lead. So I asked to be taken off the pain meds and to find another way to deal with the pain. Thank goodness for trigger point injections, Humira, and relaxation and breathing techniques.

Being My Own Advocate

Before my diagnoses, I would listen to what a doctor told me without question. Now I do my own research, fire doctors, speak up for myself if I feel that I am being treated badly and have informed my family to do the same. Bringing a list of questions to a doctor visit no longer embarrasses me. Requesting information about side effects of medications has become second nature. I know that I have choices and feel more empowered. And because of this, I am an advocate for my daughter who also has medical problems.

Advocating for Others

Besides being an advocate for my daughter, I have made it my goal to be an advocate for others online. This is one of the most cherished outcomes of becoming chronically ill. The friendships I have made are treasured. The information I have shared is fulfilling.

You too can have a positive outcome when you are diagnosed with a chronic illness. It may take time, actually it probably will. Once you can see that the changes your body will go through do not have to change the inner you, you will have the opportunity to be grateful, to overcome obstacles and to be a healthcare activist.

Health Haiku #HAWMC

Posted by Connie on Friday, April 6th, 2012 at 8:37 pm and is filed under Advocate, Autoimmune Disease, Chronic Illness.
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Health haiku. Write a haiku about your health focus. 5 syllables/7 syllables/5 syllables. Write as many as you like.

This prompt scares me. I used to write poetry, but never followed rules. Cut me some slack as I try my best…

The age of forty
I believe in beginnings
I am faced with fear

Healthcare Haiku

Nighttime – the enemy
I long for sleep and rest
Alarm clock rings – No!

 

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