The Benefits and Pitfalls of blogging about your illness and or condition and remaining grateful 

I consider my blog a safe zone to tell my story. I would have never thought I would be writing and talking so openly about Osteonecrosis and And other issues and conditions in 2014
When I was still struggling to go to work in pain everyday hiding my pain eating Advil every few hours and just feeling physically and emotionally beat when I got home just from smiling and assisting eyecare patients all day while hiding my pain
Don’t get me wrong I loved my job, I enjoyed watching people see the world in a different light when they put on their 1st pair of eye glasses.I loved learning new things all the time
The eyes can tell you so much about your overall health

But when you work and have pain all the time it wears you down many days and people that don’t have pain all the time just can’t understand what it’s like.

One thing blogging can do is cause others to react in positive and negative ways
When I am writing about my own personal experience often words are taken out of context people reading things seem to get put on the defense because when you have words in writing vs a conversation where others can hear your tone it can get weird sometimes. 
They will take your words and twist them, or they want to debate when you write about new research and treatment options

Disease & Illness makes people vulnerable and learning to take rude comments is a learned skill and managing our vulnerability is a skill that we need to master if we are to protect ourselves online. 
I also have a support group for Osteonecrosis called 

Avascular Necrosis/Osteonecrosis Support Int’l  on FB 

and I have to be pretty tough on group rules  I don’t do this to be mean or controlling but I do it for the protection of all members in the group
Sometimes members don’t understand why, and we have people all over the world in the group so often language is also a factor what something means to me may mean something else to someone in another country. 

I’m pretty good on having patience but I to have my days.
Sometimes I will change the group setting of our group from closed to secret it amazes me at the comments I get positive and negative.

I do this for one reason

We get about 3 to 4 people req to join a day which is great as I feel they will have a support system

But I don’t want my group to grow to fast and become less personal, I like new members to get to talk get a sense of safety comfort and know they have a place to go and feel relaxed and never alone. 

I have Moderators that I trust completely They have no idea just how grateful I am I have their help in running group. I do let them know how much they are appreciated 

When I decided to start a group and a blog and an awareness page or two I had specific goals in mind. So I can get the word to as many as possible but in a good non rushed timeline
Here’s how I have it broken down 
Specific – define your goals as clearly as possible.

Measurable – I put figures on what you want to achieve increase visits to the awareness page by a 20 percent gain a month 

To get 1 new Twitter followers per week 

Attainable – make your goal attainable 

Realistic – to be realistic, a goal must represent an objective toward which you are both willing and able to work.

Timebound – your goal should be grounded within a time frame.


Time is probably the biggest challenge in implementing strategy so you can reach as many people as possible 

Monitoring social media

 It’s important to monitor social media on a regular basis to keep on top of what people are saying about you, your awareness page , campaign, or issue. 

Measure Remeasure and Evaluation Progress 

My final step is to measure and evaluate progress, adjusting my strategy if necessary. Some key metrics to track are the number of followers you attract on social media awareness page in my case

 I have become more confident in my writing and I know I am making a big impact on the awareness trail

That makes it all worth it


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