hi, i'm meghan

photographer @meghillphoto by trade, 

Miracle For Meg Update / Life Update

Miracle For Meg Update / Life Update

Urgent : Miracle For Meg Update :

hello friends! I think it’s about time for an update on where things are with me in my daily life and health, right? I am also going to put out an urgent call for help, asking for specific task-oriented assistance from you if you are willing and able.

I left Savannah mid- April with one goal in mind : Getting out to California to get healthcare as soon as I could.I chose Van life because I am unable to fly, I cannot move myself across the country and I am completely alone, small spaces are easier for me to manage. A van gave me a safe, small and affordable passage to better health. Plus it’s my dream.

Van life sounds great unless you have a connective tissue disorder that leaves you in a chronic state of trauma from the horrible situations my body places me inside, with uncertainty about my ability to care for myself or my dogs. will I be able to see? Can I hold my neck up? Will I be able to navigate? Can I empty my tank? What happens when I have a MASS CELL ATTACK? Any set back in stay or help was more than my body could handle- shifting plans in my state is not easy, overnight stays cancelling and drivers cancelling really made things difficult. My eyes made it impossible to drive more than an hour at a time… Which is why I ended up at Walmart outside of Dollywood for a week.

While I do not yet have the words to describe the depths of leaving it all behind and moving into a van forging into the unknown alone.. and then finding a a 62 year old man named Stepping Wolf off the AT who drove us from Tennessee to California in 2 weeks….I will say I safely landed in California much sooner than I anticipated… and my body is in much worse condition that I would have hoped.

A little less than a week after landing at @whitneykentchamberlin ’s I braved up took an uber to the ER where I met @jennreno in hopes to get some answers. Doors were opened and I was able to get TWO MRI’S of my spine and brain AND a brain CT ! However, doctors were much more overwhelmed with my condition than I thought, tests were initially inconclusive , and I left as empty handed as I had come.. in an uber. alone. Thankfully there are beautiful healers in Highland Park, and I was able to stabilize a little through acupuncture and Cranial Secral Therapy with @santina

I woke up the morning after the ER and I found out that BCBS never got my initial payment in May, so I actually don’t have insurance in California…yet. This was two weeks ago when I was told it would only take 5 days to “rush retroactive the policy” so I could make it to my neurosurgeon appointment… which never happened because I am without insurance.

Since then I have had to move back into the van, and again I have found that gypsy van life is actually extremely dangerous for my body in it’s current condition. My body requires a safe, steady, sensory controlled environment to function properly, and I realize that without that I find myself in a constant state of fight-or-flight. Navigating my healthcare is a full time secretarial-detective-connection-seeking-appointment setting job that requires a lot of time in front of the computer and on the phone- two things that are extremely hard for me to do in my current condition. Most of my days are spent regulating the pain in my body.

My little family and I are currently sitting in a motel 6 ( thank you @thegrandshellgame and dad), van parked in the handicapped spot, groceries in the floor that have been ordered by dear friends… and me fighting for my life (both physically and mentally lets be honest here).

Today my brain worked well enough for me to make a very clear and detailed list of tasks and actions in which I need specific help. So many of you have asked how you can help, and I am clear enough and organized enough now that I can give out specific things with specific perimeters. Things like : researching and applying for disability for me in california , finding a foster home in southern california for dakota, filling out and sending medical release forms, calling specific doctors and making appointments, finding us a place to live… you get the picture.

So, if your in a position where you can help please message me or text me, please. I am literally getting by with the help of my friends and the Ehlers-Danlos Community and I could not be more grateful to you for picking me up from the bottom over and over again.

Intimate Patience from 1/15/2014

Intimate Patience from 1/15/2014

My Ehlers-Danlos Diagnosis Story Part 4

My Ehlers-Danlos Diagnosis Story Part 4