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Uncommonly Disconnected

The word of the Lord came to me, saying, "Before I formed you in the womb I knew you, before you were born I set you apart..." Jeremiah 1, 4-8

Wednesday, January 5, 2011

New Days?

If I make everyday a new day, then eventually every new day will become a new year and eventually every new year will become a lifestyle.

Posted by Trish at 10:43 AM

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God Made Me Who I AM

Trish: I'm just a wife, mom and nurse who realized somewhere along the way that everything I perceived to be the norm is uncommonly disconnected. Without God I would be lost.

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My Diagnosis & Symptoms

Mitochondrial Disease
Questionable Ehlers Danlos Syndrome Type 3
Parathyroid tumor
Proximal Muscle weakness
Dysphasia
Dysphagia
Ataxia
Hypermobility
Muscle cramping/twitching
Seizures
Tachyarrythmias
RO/BI/CCI/Pannus
Raynaud's Phenomenon

My Peeps

History in the Making

Helpful Connects

United Mitochondrial Disease Foundation
Mito Action
EDS Hypermobility Type
Ehlers-Danlos Network
Ehlers Danlos National Foundation

Mito and EDS Support groups

UMDF Facebook Group
Ehlers-Danlos Facebook Support Group

Connecting the Disconnected

Kristen
Mackenzie

Disclaimer!!!

This blog and the contents within are for personal use only. It is not intended to diagnose or treat any other soul. It is purely an outlet for myself and many others frustrated by masquerading medical diagnoses. Any information herein should be used at your own risk and should not replace advice from YOUR OWN medical professionals. This content may contain errors, to err is human, and well, I am human.

'das Me!

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Senior Prom, 1999

Senior Prom, 1999

My husband and I forever ago, FYF.

Nikki and Daddy

Nikki and Daddy

Backstage at Decyfer Down

The M&M store in Time Square

The M&M store in Time Square

Ohh Yeah!!

Sabrett

The real reason for going to NY =)

Reminiscing... Me in 1997

Reminiscing... Me in 1997

Well, at least I think it was 1997...

Mr Kitty enjoying the view.

Mr Kitty enjoying the view.

Nikki

10yrs, Possible Mitochondrial Disease/EDS

Amy Noel

6 years old

Kimber, 8yrs

Atlanto-axial dislocation, Mitochondrial Disorder

Josh

4 yrs, Possible Mitochondrial Disease/EDS

Jeremiah 1:4-8

The word of the Lord came to me, saying,

"Before I formed you in the womb I knew you, before you were born I set you apart: I appointed you as a prophet to the nations."

"Ah, Sovereign Lord," I said, "I do not know how to speak; I am only a child."

But the Lord said to me, "Do not say 'I am only a child' You must got to everyone I send you to and say whatever I command you. Do not be afraid of them for I am with you and will rescue you." declares the Lord.

Helpful Doctors

Dr. Bonnie Olney (primary care Dallas)
Dr. Scheuerle-Dallas (genetics)
Dr. Schiffman (neuro-metabolic specialist Dallas)
Dr. Adair (PMR, Dallas)
Dr. Francomano-Baltimore (genetics)
Dr. Maher-Dallas (genetics)
Dr. Insinga (TCI-neurosurgeon)
Dr. Bolognese-Great Neck NY (neurosurgeon/chiari/CCI)