Comments on: 30 Things About My Invisible Illness You May Not Know (for Invisible Illness Awareness Week)

By: Pam Bickell

Pam Bickell — Tue, 27 Oct 2009 05:16:59 +0000

I was looking at Blog Catalog for spiritual sites and came across your post about Invisible Illness, which pulled me up short! I knew right away it was Fibromyalgia/Chronic Fatigue, which I’ve had since 1997.
There is fantastic news! They have discovered a virus connected to the illnesses. Please see this link at my blog:
http://notesalongthepath.wordpress.com/2009/10/10/fibromyalgia-chronic-fatigue-virus-isolated-whoo-hoo/
They expect to have a blood test in 6 months, and are already working on treatment possibilities. Hope this helps. Pam B
.-= Drink in this blog post from Pam Bickell:
Grandfather, Tell Me About . . . SPIRIT =-.

By: Leann

Leann — Sun, 18 Oct 2009 21:23:12 +0000

Dorian ~ Wow. To open up so completely and allow us a small glimpse of your life is powerful.

There are so many of us out there who have invisible illnesses and are prejudged on what is not seen.

I wish you well, I wish I could be there to help, and lastly I wish you both (Rhodester) great happiness.

By: Sarah Bosse

Sarah Bosse — Fri, 09 Oct 2009 08:06:35 +0000

Thank you for sharing your thoughts and experiences! I was diagnosed with FMS in (counting…)…2002 or so. Have had so many problems with it since childhood including the headaches and GI issues. But this year finally learned that I am gluten intolerant and perhaps have Celiac Disease (can’t confirm the later because I don’t have health insurance – you know the story). Have been on a gluten free, wheat free, dairy free (I’m lactose intolerant too), and just-about-everything-that-I-used-to-eat-free diet. Eating lots of raw and cooked veggies, fruits, potatoes, etc. My pain is beginning to improve and my GI system is MUCH happier! I was shocked when I learned that 10% of people who have FMS are later diagnosed with Celiac Disease, and that 90% of people who have Celiac Disease go undiagnosed. That leaves a lot of people who have FMS as strong potential candidates for Celiac Disease. Changing my diet has been incredibly hard, but I was sooooo sick before I learned gluten and wheat were the culprits.

In any case, I am encouraged just to know I’m not alone. Thank you again for posting. Hopefully I’ll post my 30 Things on my blog soon as well.
.-= Drink in this blog post from Sarah Bosse:
Through The Fire, Job 42:12 – Streams In The Desert, Charles E. Cowman =-.

By: Benia

Benia — Sun, 27 Sep 2009 23:15:55 +0000

This was a long one to read – I read it in between tasks all day long – and I’m sure it took even longer to write!

I just wanted to let you know I read your post and I’m thinking of writing my own “30 Things” post, too.

P.S. The get-well wish I prefer is “feel better soon”. Feel better soon!
.-= Drink in this related blog post from Benia:
Some Things are Worth a Flare =-.

By: Rene

Rene — Fri, 25 Sep 2009 16:24:22 +0000

This gave me a lot of food for thought, D. Thank you. My sister also lives with an invisible illness, and your perspective will help me understand her better too.

xoxo
.-= Drink in this blog post from Rene:
Winter Comes Early in These Parts =-.

By: Dannette

Dannette — Tue, 22 Sep 2009 17:51:06 +0000

I absolutely love that “letting go” is your hobby. I think yours is the healthiest hobby of all the “30 Things” posts I have read.

I used to work in the greeting card industry, back when my symptoms were mild, and I cringed at our “get well soon” collection. What do you send to the grandparent you know is never coming home from the hospital, or to the terminally ill patient? And then there is us – the chronic bunch. I often say “be well” to my chronic friends because that is my wish for them, but maybe I should rethink that too. Maybe it is more like pressure than a hope or a wish. Now you got me thinking!

Thanks for your candid answers. I have enjoyed getting to know you better. I appreciate you sharing a link to my list too. My Best!
.-= Drink in this related blog post from Dannette:
Your Illness May Be Invisible, But You Are Not =-.

By: Jasmine

Jasmine — Sat, 19 Sep 2009 18:41:34 +0000

I so love the thought you put into these answers, as well as how you wrote them out (I may borrow this format next time). Great job and list! .-= Drink in this related blog post from Jasmine: Balance Awareness Week: September 20-26, 2009 =-.

By: Elizabeth

Elizabeth — Sat, 19 Sep 2009 05:27:07 +0000

I do learn and take away from my Yang.

XOXO <3

Yin a.k.a Elizabeth

By: Judy Curran

Judy Curran — Sat, 19 Sep 2009 04:18:12 +0000

My heart is heavy – thank you for sharing in such an open honest way – I have a family member who suffers from an auto immune phenomenon – in a different way…. and no one can ever really understand the lifestyle changes that have to be made. Thank you for giving us a glimpse at least so we may try to comprehend in some small way. So many people have to deal with so much pain every minute of the day, your struggles are humbling and the way you write about them are incredibly inspiring.
I too hope you will one day have a doctor (like House) that fights as hard for a diagnosis.

By: Jeanne

Jeanne — Sat, 19 Sep 2009 03:18:55 +0000

Oh Dorian!

I will need to leave you a proper comment to this later because, as you know, I normally leave point-by-point comments on blogs and your amazing post is too detailed (in the best possible way!) for me to do that right this minute. What I am going to do now is go tweet the heck out of this post because it’s amazing, you’re amazing, this needs to be read by as many people as possible, and last-but-not-least I know how difficult it was for you to write this post. I hope that you are resting now. I know this took a lot out of you but your eloquent words will help other people!

I’m sending healing energy your way!!!

Jeanne
xoxoxo
.-= Drink in this related blog post from Jeanne:
Overwhelmed! =-.

By: Katherine

Katherine — Sat, 19 Sep 2009 02:50:49 +0000

I love you, dearest godmother. You are a truly amazing person.
.-= Drink in this tweet from Katherine:
alwayskatharine: @RhodesTer It’s growing on me. I’m enjoying it. =-.

By: Fantasy

Fantasy — Sat, 19 Sep 2009 01:53:36 +0000

Dearest Dearest Lady
I so admire you for the courage and determination you show every day! You are an inspiration to me.
I send you dreams of Dancing and of the relaxation of yoga.

I raise my Cup (coffee of course) to you in toast to the will to truly LIVE that you show, and I know you know what I mean.

Love and light

Yours in heart