I Feel The Need to Read…

It’s been a long time since my diagnosis. So much has happened since 1994.  We have some so far with research and awareness, yet it still feels like I’m stuck in the mud in Alabama like a mash-up between the movies Ground Hog Day and My Cousin Vinnie.

I have decided to sit out the Health Activist Writer’s Month Challenge, and read as many blog posts of those who do write, as I possibly can.  There are some great voices out there and I really want to take the time to hear what they have to say.  I feel like I haven’t been as active as I can be in the health activist community.  And not everyone can or even wants to write, so I am going to participate by reading and cheering on bloggers and encouraging others to read by sharing what inspires me.

I am not the only person with scleroderma, sarcoidosis or any chronic illness to have something to say.  There is a time for everyone with a voice to speak out.  There is also a time to listen.  This is my time to listen.  I just want to fall in love with some more bloggers. I have read and shared several posts this month already and I am starting to feel inspired by these new and not-so-new voices.

So, there will be posts here, but please visit Wego Health or search #HAWMC on Twitter and read some great blogs.  Don’t just read what I share.  I can’t possibly read them all and if you find posts that inspire you, I hope you will share. We don’t all need to blog, but we all need to encourage  those who do.  So, show your support and if you haven’t already liked Wego on Face Book or are following them on Twitter: Go now & do!

Day 14: Dealing with Negative Feedback

How I Deal With Negative Feedback

I love feedback.  Positive and negative.  If it’s negative and mean to others, I block the user.  If it’s negative about me, I read it to determine if it’s a personal criticism or of my work.  Then, I ask myself these questions:

1.  Is it valid?  If so I take a look at it and answer.  I don’t think of feedback on my work as positive or negative, I look at it as valid or invalid.

2.  Do they just disagree with my opinion?

If they just disagree, I look to see if I can better explain myself.  If I can’t I thank them for their feedback and leave it at that.  I don’t take it personally.  Life is too short and if we agreed about everything, life would be boring.  But, if they disagree with facts, then I post the facts n a clear way and thank them for their time.

I love feedback. It’s a great compliment when people take the time to comment- even if negative. But when they attack other patients or communities, I just block ’em.y disagree, I don’t take it personally.  I usually thank them for their opinions or for expressing their feelings.  If they are mean or attack other patients, I block them.  If they are mean to me, I usually have a good laugh and feel flattered they took the time out of their day to talk about me.  People can be mean to me all they want, but if they go after someone in my timeline, a fellow blogger, on my Facebook or anyone else but me,  I will block them.  I also do not reward them with a reply.

3.  Is the person being negative; ignorant, or just a douche?

Here is the difference between being ignorant and being a douche:

Ignorance is a lack of knowledge because someone is not educated about a particular topic.  Ignorance can be fixed with education.

Douche:  Ignorance with malice.  The ignorant person not only refuses to accept the facts, but chooses to claim the ignorant stance with the intent of hurting someone else’s feelings; or hope that anyone who disagrees fails.

I block douches.  Ignorant people just need more information.


In The Activist Spotlight, Paul Fugelsang: Trailblazing for Mental Health


Bonus Prompt:

Nominate a Health Activist and Share Why

I have nominated Paul Fugelsang for a 2012 Wego Health Activist Award: Trail Blazer.  I wrestled between Silver Stethoscope and Trail Blazer because  Paul is a practicing, licensed therapist in North Carolina.  He has come up with a way to help clients see therapists who will offer mental health care at reduced rates.  Paul Fugelsang recognized the  biggest barrier to mental health care in the United States is money; and he is doing something about it.  I was inspired to share his work here in The Mighty Turtle’s Fundraising and Activist Spotlight.

Those of you who keep up with this blog, know I receive outstanding mental health care, courtesy of my friendly neighborhood Veterans Hospital, but there are millions of people in our country going without the proper mental health care they need because they are not “lucky” to be a service connected disabled veteran.

People go without because they fall through the cracks.  They make too much money to qualify for aid and if their insurance  does cover mental health care,  it’s often inconsistent and  short term because of higher copays. There are waiting lists,  long office waits  times and some mental health clinics offered are on a first come first serve basis.  The United States has come a long way with progress in mental health care, but we still have a long way to go.  There is hope because of practitioners like Paul Fugelsang, founder of  Open Path Psychotherapy collective: A program that will connect patients with therapists.  

In Paul’s words, “Open Path Psychotherapy Collective will be a network of like minded mental health clinicians dedicated to reaching those individuals and families who are falling through the cracks. The Collective—with the support of the Foundation for Excellence in Mental Health Care (FEMHC)—will match participating clinicians with individuals in need of local, in-office mental health care—for a steeply reduced rate.” (From Interview with Kelly Carlin.)

Paul’s goal is to “Create a nationwide collective of mental health practitioners who are in private practice who all agree to see one or two low fee paying clients. A goal of 2500 sessions per week… of low fee therapy nationwide.” (As said in an interview by Kelly Carlin.)

I think it’s an excellent start to an amazing, non-profit nationwide program to help those who need mental health care and are  falling through the cracks.  How is that NOT  trailblazing?  Go now and nominate Paul Fugelsang for a 2012 Wego Health Activist Award.  Then, be sure to spread the word about the fundraising that ends November 15th.  After that, watch for the launch of Open Path Psychotherapy Collective.  Watch Paul blaze a trail to help those who seek it, get mental health care they need.


Online Support Community, Inspire

Many people benefit from weekly support groups.  Many have to drive hours just to find one near them.  It’s hard to be a patient with one or more hard to pronounce, never been heard of diseases.  It’s very easy to feel isolated.

I’m not sure when I discovered Inspire.com but I am sure it is a place online where I feel so not so alone.  It helped me open up about my own experiences and help others when I could.  The site is well named, because it did and still does inspire me.

One of the many things I like about the site is you are able to vent to your fellow patients and not have it publicly shared without your permission.  It’s a community with some privacy.

Do you think you are the only one with your rare chronic or terminal illness?  Check out their search and find others.  You may be surprised.

This is who can benefit from reaching out at Inspire.com and can find a positive experience.

1. If you have a chronic  or terminal illness.

2.  Know someone with a chronic or terminal illness

3.  Are a caregiver of someone with a chronic illness.

But you will not know the benefits if you don’t  take the first step by reaching out.

I can go on about my experiences, but like any online group, I prefer to follow the rules and keep my interactions within the group.  This is a short post, but Inspire.com speaks for itself.  Please visit Inspire.com and see for yourself.  Take the first step and reach out.