About Me

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I was recently diagnosed with Distal RTA & Sjogren's Syndrome, which has been a spiritual wake up call for me. I decided to create a blog to empower myself, educate my family & friends and create support for others. I live in Central Florida with my partner, my 10-year old son, an epileptic pug and a rescued cat. I am mecurial, sensitve, passionate and intense.

Thursday, March 1, 2012

I stand corrected: more info on how the SS began

Upon further research, particulary the portion below, it would appear that I actually had the Epstein-Barr virus (EBV) as a child, which caused the Mono which caused the Hep A, which caused the Sjogren's Syndrome. However, it is possible, based on the information I included in my last post, that the EBV caused the Mono and Hep A, but that when the Mono reactivated at the age of 22, the Sjogren's was caused.


As intersting and accurate as this information is I also believe there are other factors that contributed to me contracting SS. These include my diet, toxins in the products I used (cleaning supplies, make-up, etc.) and enviornmental toxins. I also believe strongly that there are spiritual aspects, but that's another post.

Here is the information I found on EBV that I found relevant. Again this is from Wikipedia.

The Epstein–Barr virus (EBV), also called human herpesvirus 4 (HHV-4), is a virus of the herpes family and is one of the most common viruses in humans. It is best known as the cause of infectious mononucleosis. It is also associated with particular forms of cancer, particularly Hodgkin's lymphoma, Burkitt's lymphoma, nasopharyngeal carcinoma, and central nervous system lymphomas associated with HIV.[1] Finally, there is evidence that infection with the virus is associated with a higher risk of certain autoimmune diseases, especially dermatomyositis[citation needed], systemic lupus erythematosus,[2][3] rheumatoid arthritis,[3] Sjögren's syndrome,[3] and multiple sclerosis.[4]

Most people become infected with EBV and gain adaptive immunity. In the United States, and in other developed countries, many people are not infected with EBV in their childhood years. When infection with EBV occurs during adolescence or teenage years, it causes infectious mononucleosis 35 percent to 50 percent of the time.[6]

According to CDC EBV remains dormant or latent in a few cells in the throat and blood for the rest of the person's life. Periodically, the virus can reactivate and is commonly found in the saliva of infected persons. This reactivation usually occurs without symptoms of illness. EBV also establishes a lifelong dormant infection in some cells of the body's immune system.

Misdiagnosed for 30 years

While in the hospital after recieving my diagnosis of DSjogren's Syndrome, and being told that I had it for a long time, my mind immediately went to 2 times in my life: when as a child I had mononucleosis and hepatitis A that was reactivated (tho I was told that wouldn't happen) when I was 22 and when I almost died from spetic shock in 2003 with no apparent cause ever found. As anyone with SS knows, the diagnosis and information thrown at you is so overwhelming, mostly because of the fact that its typical to go un or misdiagnosed for an average of 7 years. Your mind is reeling as you think if all the medical crap you have tolerated over the years and how odd they all were. Not to mention the diagnosis is like a slap in the face of reality and you usually go through a period of deep reflection on your life. Most of us come out of this period willing to fight and that means making tremendous changes in our lives.

So now, 3 months later, I'm starting to become more curious about how this happened to me. Some say it isn't relative so why bother, just focus on today & tomorrow. But one of the things I've learned in these last 3 months is that I am a fighter on all fronts, including the big fight of raising funds for more research & raising awareness. Perhaps if my doctors or my parents had known more about autoimmunce diseases and Sjogren's I wouldn't have had to wait almost 30 years to find out how much damamge had been done to my body on the inside.

Here is what I found on Wikipedia today:
Mononucleosis is an infectious, widespread viral disease caused by the Epstein–Barr virus (EBV), one type of herpes virus, to which more than 90% of adults have been exposed.[2] Most people are exposed to the virus as children, when the disease produces no noticeable or only flu-like symptoms.

Once the acute symptoms of an initial infection disappear, they often do not return. But once infected, the patient carries the virus for the rest of his or her life. The virus typically lives dormantly in B lymphocytes. Independent infections of mononucleosis may be contracted multiple times, regardless of whether the patient is already carrying the virus dormantly.

Periodically, the virus can reactivate, during which time the patient is again infectious, but usually without any symptoms of illness.[3] Usually, a patient has few, if any, further symptoms or problems from the latent B lymphocyte infection. However, in susceptible hosts under the appropriate environmental stressors, the virus can reactivate and cause vague physical symptoms (or may be subclinical), and during this phase the virus can spread to others. Similar reactivation or chronic subclinical viral activity in susceptible hosts may trigger multiple host autoimmune diseases, such as systemic lupus erythematosus, rheumatoid arthritis, Sjogren's syndrome, antiphospholipid antibody syndrome, and multiple sclerosis

Thursday, February 2, 2012


Back in the late 90's I had the honor of hearing Amy Steinberg sing with a local girl group I followed, Sosumi. I fell in love with her amazing voice & incredible engergy. She has now gone on to establish herself as a unique & uplifting artist with multiple albums. The following song is my very favorite song. Like Amy, it is unique, uplifting, full of positive energy, beautiful, inspiring and life-changing. I hope you enjoy it as much as I do & that it touches you as deeply. Please note that I have posted the complete lyrics below the video.

Exactly, by Amy Steinberg

I am exactly where I need to be
I need to be exactly where I am
I am a blessing manifest
I can undress the moment
Naked time unwinds beneath my mind
And from within I find the kind of beauty
Only I can find.

I am exactly where I need to be
I need to be exactly where I am
I am surrendering so willingly
To be the perfect me inside this now
And truly how else could it be
Destiny she blesses me
Destiny she blesses me

When I try to fight or run
I only wind up back at square one
And when I think I know what’s best for me
Fate she takes me back
To exactly where I need to be

I am exactly where I need to be
I need to be exactly where I am
I am divinely timed and shining brightly
Yes I believe that there’s a purpose just for me
Yes I believe that we are Light
And we Shine infinitely
I am exactly where I need to be
I need to be exactly where I am
I am not aimlessly existing, see
I am in perfect harmony with universal energy
And I am truly free when I accept my own divinity

Look at me look at me closely
Tell me exactly what you see
If you are paying attention you will now begin ascension of the mind
Why, because if you look at me just right you will see a kiss
For it took a kiss to make this breath exist
The intersection of my mother’s and father’s lips
To touch, twist, perfect what came next to produce me
Look at me and you will see the breeze
The breeze it took to shake the leaves to make
My mother’s hair move, my father dare touch it and say
Please may i have a kiss
Yes the breeze made me exist
And if you want to get even deeper into this
When you look at me you will see a big old cloud
That’s right, the cloud it took to form the storm to make the breeze to shake the leaves to
Inspire the liplock – yes a raindrop will pop up out these words
You heard me right
If you look at me close enough you will see a dark stormy night
And what is night?
Well night ain’t night without it’s polar opposite of sunlight
So if you watch the way my hands sway
You’ll see the light of day
And everyday is a testament to the sediment of the earth’s core
It’s ever spinning enormous force so if you look at me just right
You will see a spark of The Source
But the most fascinating thing about this, and it’s true
Is that if you look at me just right, You See You
It’s only what you perceive how you believe the space between
You and Me
That creates reality
So when I sing you can feel it
When I cry you can heal it
When I speak words you can be the words I speak by singing with me:
Peace love free, peace love free
Peace love free, peace love free

When I try to fight or run
I only wind up back at square one
And when I think I know what’s best for me
Fate she takes me back
To exactly where I need to be
And when I am alone and full of fear
I just remember the rising sun always appears
And everyday miracles, miracles that I see
Well they take me back
To exactly where I need to be