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Who will set the universe straight?

Ahhhh, the sanctitude of solitude.... Saying what's on your sleeve in a peaceful space. Although the words 'is it safe here' do pop up in my mind. Are we ever 'safe' online?

In other communities we thrive when we get more 'friends' and we are eager to share the littlest details with 'friends' but here, in this tainted world of DD's we fear that anyone on the 'outside' decides to come in and take a peek at what really happens to our souls, our spirits and our bodies when things aren't quite that well.

After deliberation I decided to go back to my old username, eventhough it might give away too much information to those with the evil eye. The only reason I can find for doing this, is because of my FRIENDS in OUR community.

Many of you have followed my quest for answers to the unheard-of symptoms that do not match to anything, not even cfs/fm/lyme... I have made statements in the past, convinced they were true but turned out to be tainted by other symptoms. Eventhough still a believer of sharing experiences, I'm sorry if my comments/posts put anyone on the wrong track or gave someone the wrong idea about who I am.

For now I'll be trying to read to find more information and to connect to others who have been around the block as well. I've been around our community since 2003, which now seems decades ago. I've seen people improve, stabilize and get worse.

Somehow this whole 'being sick thing' seems like such a waste of time, energy, money and lives. Some conditions have no solution yet, but I bet a heck of a lot of people out (t)here have known disorders and are just left to fend for themselves because the medical field has too many cracks in the net.

Every time a patient is being dismissed as a mental case, or is let down because the physician does not take the time to even try to understand what is wrong, a crime is committed. And it's not a local thing, it happens all around the world and for some reason, especially there where medical care is supposed to be superior. I can only hope that someday the universe will bring justice to our battlefield.

For now... I will try to be who I am.
On here.
Right now.

May today treat you fair.


I agree wholeheartedly, carlanl, whom I've known from elsewhere (I'm as 'skeptik' as you about other's opinions about me), and I've decided I don't care.

I don't care what 'they' think anymore; I'm too busy trying to make it through each day, trying to save a life for my grdau who is only 21 (by hoping she will be tested and get treatment if she is XMRV positive), by doing or not doing, whatever is possible on a daily, hourly basis.

I don't care anymore what 'they' think: I care about my support groups, the people I meet on the various forums and message boards. I care how they feel and what their problems may be getting through today, and I care that they want to hold me up and support me when I am having those bad times.

That's all we have for right now: each other. To heck with "them".

Kudos to you!!
I love how you put into words the struggle with the fears I too know of giving away too much information to hose with the "evil eye." And also, how you have written the thougth I've had but never fully heard: Every time a patient is being dismissed as a mental case, or is let down because the physician does not take the time to even try to understand what is wrong, a crime is committed.
So true. And they are crimes few even know of, like screams no one hears.
Nice to know you are on the battlefield with me.
Hi Carla (and Warrior;)!)
Thanks for all your sharing. Thanks for your concern for your fellow-sufferers. It's good to hear truth shouted out sometimes!!
Are you still on GcMAF?
How is it going?
Waste of time, were you 'genetically compatible'...Please update us as you are able...
I'm considering it once I receive news of xmrv status..
Karbyjoy (Kara)

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