MY JOURNEY OF STRENGTH, FAITH &
At the age of 38, I should be at the prime of my life. Unfortunately, as health issues have become more debilitating, most days are spent lying in a recliner watching my life pass me by. Things that I once took for granted such as: working, caring for my children, walking, or just being upright for any length of time, have become daunting tasks. The normal life that I once knew is long gone, only to be replaced by days filled with pain and fatigue, both physically and emotionally.
After 2 yrs. of being blown off by countless Drs., all it took was 800 miles to Maryland, 2 days with the most amazing Neurosurgeon and MANY prayers to finally get answers (and 100% validation for what I have been telling Drs.). I was diagnosed with Ehlers-Danlos Syndrome~Hypermobility (HEDS), a RARE connective tissue disorder that causes weak collagen throughout the body leading to laxity of ligaments, muscles, skin and blood vessels. Joints dislocate without warning, contributing to pain & debilitating symptoms. THERE IS NO CURE!
HEDS can contribute to many other debilitating conditions (I'm one of the UNLUCKY ones that HAVE THEM ALL)
Craniocervical Instability~My head is wobbly on my spine. Being upright can be extremely difficult b/c brain structures and skull bones slide and sag upon upright posture. Due to the weakness of my ligaments, I also have cranial settling, where my skull sinks down onto the odontoid bone of my c-2 vertebrae, causing it to poke into my brainstem. As my skull shifts, my brain and spinal cord are being compressed. Severe neurological and vascular deficits occur as a result.
Chiari (kee-AR-ee) Malformation~ the lower part of my brain is herniating through the opening at the base of my skull and compressing my brainstem. This is causing obstruction of the cerebrospinal fluid (CSF). This results in severe head pressure, neck pain, difficulty swallowing, headaches; changes in vision, breathing pattern, balance, coordination, strength and sensation. THERE IS NO CURE! Surgery is the only treatment to re-establish normal CSF flow and stop the progression of neurological damage. Due to ongoing CSF flow obstruction, I have developed Intracranial Hypertension which can be very dangerous.
Postural Orthostatic Tachycardia Syndrome (POTS)~ Due to the brainstem compression, my central nervous system is malfunctioning when I stand or change head position. It causes my heart to race, severe fatigue and other debilitating symptoms.
Tethered Cord Syndrome (TCS) ~ The lower part of my spinal cord has formed attachments which are limiting the movement of my spinal cord. This causes a downward tugging & stretching of my spinal cord and causes many neurological issues in the lower part of my body. Surgery to "detether" the cord is needed to stop neurological damage.
Instability of c4-5 vertebrae~ My vertebrae are dislocating upon movement, contributing to neurological issues
While the road has been long, my journey has just begun. I have 3 major surgeries ahead of me:
1. Brain Decompression & Craniocervical Fusion (fusing my skull to the c2 vertebrae) ~ JUNE 25
2. Tethered Cord Release - AUGUST
3. Stabilization & fusion of c4-5 ~ TBD
The difficult part is that I have to travel to Maryland from New Hampshire to receive this help. The added distance/travel causes more financial hardship. I also have to give the Dr. a $10,000 deposit before surgery and need the financial resources so that my family can make multiple trips to Maryland. Each surgery will require a lengthy stay in Maryland (food, gas and lodging is expensive). My first surgery will require a 12-15 day stay "“ [YIKES!]
I AM IN A RACE AGAINST TIME! I need to have the pressure removed from my brain with the hopes that the neurological effects can still be reversed. If I don't have the surgeries I could end up paralyzed. JIM, AUBRIE & PEYTON NEED ME! My family has already been hit hard financially due to my inability to work for the past 2 yrs. due to the disabling effects of these conditions & the mountain of medical bills that we have. After 2 yrs. of seeking medical help and being dismissed over and over.....I am convinced that God led me to this Neurosurgeon. It feels IMPOSSIBLE but I cling to FAITH that God WILL make a way! EDS & Chiari may have weakened my body but they have strengthened my spirit!
As a former Counselor, it has always been my passion to help others. It is extremely hard to be on the other side, needing help. It is with a VERY HUMBLE HEART that we ask for your help to make these trips & surgeries possible. ANY help you can give is appreciated MORE than you can ever imagine â™¥ All donations will go directly to travel & medical expenses.
IT WOULD ALSO BE A GREAT HELP IF YOU COULD PASS THIS LINK ON TO ALL OF YOUR CONTACTS
WE THANK YOU WITH ALL OUR HEART
Dianne â™¥ Jim â™¥ Aubrie â™¥ Peyton â™¥
For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future" Jeremiah 29:11 (NIV)
To learn more about these conditions, visit: