I love you legs

How often do we shame our bodies simply because we don’t like the view? I was around 5 when I started to be discontent with the shape and bruising of my legs. Coming from an extremely conservative background, modesty was a doctrine, and I was taught that if my body was “sexy” or “hot” I was causing my guy friends to sin. Shorts to your knees, body covered. .
My personality is prone to shame, and shame for my legs always hits me hard. In middle school, I started to get mad at my knees for always breaking, in high school I was pissed I had to give up sports because of my legs. They became uglier and uglier to me the more I resented them for the pain they caused me. Ugh I hated crutches.
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College came around and my legs prevented me from running (something I love to do), hiking became difficult in my early 20’s and over the past 12 years my legs have slowly deteriorated more and more and more until they just stopped. .

At 32, my legs are no longer on my body to serve me.. I am here to serve them. 24 hours are in a day, and my legs are a battle each and every hour- changing their mind every minute. The sensations I feel in my legs are like this: dragging through quicksand, my legs have been dipped in concrete and I carry that weight, a thousand ants biting my feet with every step I take, flames consuming me while Uncontrollably itching- wishing I could just shed my skin. My knees hyperextend and hurt more daily, meniscuss need to be repaired, aching and muscle spasms, electricity, that feeling when your legs are waking up- I have that ALL the time from my knees down, sometimes people touch my legs and my whole body spasms, they like to jerk and dance at night.. they keep me on (ha or off!) my toes.
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At 32 I love my legs. I have moved past the shame I felt for wearing compression socks, my bruising, the bracing I wear, the segway,the ugly way they drag.. I love this photo of my legs! Every day I tell them how strong they are, I thank them for what they CAN do, apologize for the former hate, I nurture them with cold water and give them compression and sit when they tell me to sit. I thank them for teaching me to slow down,love their shape and love the view.

Timeline

I realize I’m posting a bit nonsensical and out of order these days, I guess the writing comes as I process and there are countless stories to tell. I doubt many people are reading these anyways, so I’m just compiling all of this so I can one day turn it into a book.. which will flow smoother than these blog posts.

I honestly didn’t realize how triggering it would be to hash up details from my physical journey (which also happens to be a very emotional journey) and how everything has played out to get me to where I am today : sitting at my desk in Los Angeles, California with insurance in my wallet and the hope of a better tomorrow.

One of my amazing new Doctors and support team had me write out my medical history for him as well as different medications I’ve taken throughout my life. It was good for me to get it all down in timeline form, seeing how everything has built upon eachother, or rather disconnected at different times during the course of my 32 years. My journey is one shared by many of my friends with Ehlers-Danlos Syndrome. I consider myself lucky that I didn’t ever get stuck in the trap of taking ass-tons of medicine and the hope for diagnosis loop-hole that so many people with Ehlers-Danlos Syndrome find themselves inside.

My genetecist told me that I was the “ perfect model for Ehlers-Danlos Syndrome” because my body has manifested all of the characteristic traits that are markers for Ehlers-Danlos Syndrome. In my choice to embody the fullness of this journey I am choosing to share this timeline with you here, so that maybe someone will run across this and go “OMG ME TOO!!! THIS IS WHAT’S GOING ON WITH MY BODY TOO!!” and we can start to help one another connect the dots and find solutions for managing the deconstruction of our connective tissue.

It’s also crazy for me to see this laid out in timeline format, bringing back so many memories and so much trauma to my physical and emotional body throughout my life. There’s new research out that shows individuals with Ehlers-Danlos Syndrome’s brains have an extremely hard time healing trauma pathways because our brain’s connective tissue cannot regenerate to reform new and healthy neural pathways. My medical history shows that Ehlers-Danlos Syndrome effect every system in the body, as it has and is still being played out in my own. I was told that my fragility made me weak and undesirable for a very long time, and I believed those words. Now, as I have reframed all of my wounds, I see how bad-ass and strong I am.. I see what a FIGHTER I am and how I have been so creative throughout the course of my short live to find ways to live a good life while also existing in constant non-stop pain. I got so many little tools up my sleeve and I can’t wait to share them all with you.

Dark Night of My Soul- 6/6/2013 with new forward

I am finding the healing that is coming by revisiting the old stories I wrote during my journey through dark nights. I am finding the connection in it all, and that the spirit has always been moving me and I have always been following.. it just looked much different than what everyone told me (and what I had ‘hoped’) my life would look like. The death of the ego is dark and cold, but I can see that I have always had the strength inside of me to rise above and answer my heart, my dreams.. and ultimately love over fear.

The ‘GOD’ I reference in this post no longer holds true for my ideology. Re-reading, it feels so limiting and so closed minded for what I now know exists and moves through us all. I have found myself calling her/him/force ‘god’ lately because I do not feel I have any other terminology- maybe spirit, but even that seems limiting. The word ‘GOD’ triggers within me old constructs that no longer serve my highest good or the highest good of humanity, and it causes a semi-aversion. I say that to say, I hope in reading this you can hear the love in my heart and the longing for something greater than myself and the faith in the spirit inside and not be triggered by the closed-mindedness of the word “God” due to past conditioning.

So, I’m reposting some of these old blog posts so that myself, and whomever reads this can see how a heart and life can be transformed so drastically through grace. These old words are the words of a heart and soul that is being transformed. I will sing to you my new song, but actually it’s the song that has been inside of me since I was a little girl.. I have just learned how to unlock it and sing it clearly, without fear and through the lens of love (but I’d like to think that’s how I always operated?)

The following post was written on 6/6/2013

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Over the past 5 years my life has been turned upside down. In the span of five years, I have had two jaw surgeries (one of them being a facial reconstructive surgery), a knee surgery, have had my thyroid removed (thus sending me into hypothyroidism), got diagnosed with Celiac Disease & intolerances to dairy and eggs, battle migraines, moved across the country and then back again, got married, lost two pregnancies, battle with endometriosis and have had surgery to remove some the polyps, been diagnosed with Ehlers-Danlos and fibromyalgia (chronic pain & fatigue), and   have had chronic sinus infections and a surgery to help those.. and have been in and out of depression. 

And somewhere in the middle of all of that crazy, He became silent. I don't know if it was something that happened all at once, or if it was more gradual.. I just know that I could no longer feel Him and see Him working like I needed. A mentor of mine gently told me that I was experiencing what some would call "The Dark Night of The Soul". 

I would spend hours crying out to God, begging for healing..begging to hear His voice, but all I would hear was silence. I would sit in the shower as the hot water poured over me, holding my head with my tears silenced and hidden by my wet hair asking why He had left me. With my body in so much physical pain, I knew the only thing that could sustain me could be His companionship, and His presence. But for two years those things were completely absent from me. It was like walking through a desert blindfolded, yearning for water to quench my thirst yet finding none.

But even in the silence and in His absence and in my pain I proclaimed His goodness. I don't claim to know answers to life's hard questions, but I did know that even in sorrow and pain God is ultimately good. I was reminded again and again of the story of Daniel crying out for deliverance and God sent an angel right away.. but the angel didn't reach Daniel until much later. Daniel was mad wondering why he hadn't reached him sooner. And the angel said he was battling spirits in the heavenly realms, taking care of things that were greater and more urgent. I was reminded over and over again that even though God hadn't responded He may have sent his angels to guard me, but then were tending to things larger than anything I could comprehend. And I held tight onto that story, knowing that God DID hear me. 

My spirit relished and sought refuge in the prayers of my brothers and sisters. I can honestly say that during the darkest days, they interceded on my behalf and prayed for me when I could not longer find words to pray myself. 

Late one night my husband and I went to a tattoo parlor in downtown Nashville and got the words, " Jehovah Rapha" tattooed onto our arms. Because we needed to be reminded everyday that GOD IS HEALER. That He can heal, and that even if he chooses not to heal my body, we will rejoice and proclaim His Goodness. Daily I see those words and thank God for who He is. I thank Him for caring so much about my spirit that He hasn't chosen to heal all my physical ailments. I know he uses them to mold me and bring me into surrender every day to His purpose. I know that He is more concerned about the state of our spirits and souls than He is our physical bodies. 

I do not think I "feel" the presence of God like I did before I entered into the dark night. I do not know if I will ever "feel" Him like I did before I have walked through the valley. But I do know that I can see Him at work again. My constant prayer through my journey has been that He will be seen through me. 

In January I was sitting with a friend, and she started to cry as she told me that she could feel the presence of Jesus radiating from my body. That she knew our time together was Holy and that even if I couldn't feel Him changing me or Him working through me that HE WAS. There has been nothing more sacred to me than those words that she spoke into my life. 

Over the past couple of months I have started to emerge out of the dark night. I have seen God's workings so evidently in my life.. the way He has brought people into my life to encourage me, the way He has used my story to encourage others, He has opened doors for Doctors appointments, and has allowed me to pursue my passions like I never imagined possible. My faith is not what it was before I entered into this time of surrendering, but it is so much more. I no longer trust in God because of what He can do for me, but simply for who He is. In the pain and the suffering and the sadness and loss He Is Good. And I can say that will full confidence after losing every part of myself that I held so dear, and losing life that He formed inside of me. 

We live in such a fallen world, and I am forever longing for the day when He makes all things new. I long for the day where there will be no pain and no suffering, no sadness and no death. Through the heartache and the loss I can catch glimpses of Heaven like I never could before, and I feel delight when I think about the day I will be able to hold my babies in my arms for the first time. 

"I waited patiently for the LORD;

He inclined to me and heard my cry. 

He drew me up from the pit of destruction, out of the miry bog, 

and set my feet upon a rock.

He put a new song in my mouth, 

a song of praise to our God."

-Psalm 40

Intimate Patience from 1/15/2014

A few weeks ago I remembered how to access all of my old posts from the blog I wrote for several years. It has been beautiful for me to go back and read some of the things that I wrote.. to see how I have transformed and to see how beautiful my perspective was during the darkest 7 years of my life. To see how flowers are blooming from that time of grief in my life.

We will only wait on Him with joy if we have deep confidence in His love for us. - David Timms 

This waiting. This intimate patience and battle with the Lord has left me ragged and undone at times. Waiting for Him to speak again, waiting for Him to make clear a purpose again. Waiting for the sun to rise again over one extremely dark (but albeit beautiful) night. 

Waiting for answers unknown, waiting for money that isn't there, waiting for peace and direction when the once clear path has been overtaken by fog. 

As I was reading through the second section of  Your Beautiful Purpose, I was reminded again how hard this process of waiting and patience has been. I love this section where she quotes "Streams In The Desert":

" Waiting is much more difficult than walking, for waiting requires patience, and patience is a rare virtue. We only enjoy knowing that God builds hedges around His people, when we look at the hedge from the aspect of protection. But when we see it growing higher and higher until we can no longer see over it, we wonder if we will ever get out of our little sphere of influence and service where we feel trapped. Sometimes it is hard for us to understand why we do not have a larger area of service, and it becomes difficult for us to ' brighten the corner' where we are. But God has a purpose in all of His delays. ' The steps of a good man are ordered by the LORD." 

I am reminded that where I am has it's purpose, even in the dark and in the place where I never thought I would have to reside. Even when my sphere of influence seems so small, and God seems so distant. 

I was send an e mail this past week by a sweet reader who has now become a precious friend. She sent me a passage from "One Thousand Gifts", which I read long ago, and at the time this particular passage didn't strike me as much as it did now. As I have been processing through this season of waiting and patience, I have also been processing through this season of Darkness.. waiting on the Lord to show himself and wondering why He hasn't. Anne Describes this so beautifully: 

"When my glory passes by, I will put you in a cleft in the rock and cover you with my hand until you have passed by.  Then I will remove my hand and you will see my back. (Exodus 33:22-23)

"Is that it? (says Anne)  When it gets dark, it's only because God has tucked me in a cleft of the rock and covered me, protected, with His hand?  In the pitch, I feel like I'm falling, sense the bridge giving way, God long absent.  In the dark, the bridge and our lives shake not because God has abandoned, but the exact opposite: God is passing by.  God is in the tremors.  Dark is the holiest ground, the glory passing by. In the blackest, God is closest, at work, forging His perfect and right will."

So maybe He isn't as absent as I think He is. Maybe He is hovering over me, protecting me and teaching me to trust in His perfect timing.. teaching me this intimate dance of patience with Him. 

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.

My Ehlers-Danlos Diagnosis Story Part 4

I can't believe it is already Thursday, and I've yet to fill you guys in on everything that's transpired here the past few days. After learning so much, being given so many new "labels", my mind and heart have a hard time seeing it all written down in front of me on this space.. making it known.

Our weekend was so low key..which was wonderful. Saturday I recovered from the hectic week before , and kept my nose glued to my new favorite series, Outlander. If you haven't read them I HIGHLY suggest you do! It's been so nice to have a little fantasy get-away in my mind that I can transport myself into when I get overwhelmed by everything going on in doctors appointments.

Sunday we attended the church that hosts the House of Compassion, went to eat with the sweet lady who runs the place here (who lived in Asheville, NC for 20 years! When she told me that my eyes lit up and I wanted to hear everything she had to say about living there.. since it's my dream to live there someday too!) and we walked in the cold to visit some antique shops.

OUTLANDER SAVED MY LIFE

Monday was another free day away from appointments, so I spent the day taking care of some business things, reading and watching the snow fall outside. 

On Tuesday I started my appointments at the Fibromyalgia Clinic. Tuesday was the initial exam and uptake to test whether or not I had fibromyalgia. Sure enough, I do. 

After several hours at the clinic we walked to an authentic Italian Restaurant who had an extensive gluten free menu!! I have just been so amazed at how many places here understand the importance of avoiding cross-contamination and helping their guests who have food allergies and intolerances. It's been really amazing. 

Yesterday my mom and I sat in a classroom and learned all about Fibromyalgia and techniques to cope and live with this condition. So much to learn.. so much to change.. so much to take in.  I am so thankful that Mayo educates their patients so well. I really do not know what I would do without that resource. 

We got back to the house late yesterday afternoon. I was able to skype with David last night.. I feel like during the days I just kind of go through the motions, not really taking everything in.. feeling wide-eyed and stunned. I don't really give myself the chance to internalize everything and "feel" the weight (and goodness) of it all. 

Today I have my follow-up appointment with my "team leader" doctor, and then another three hour class with more information about fibromyalgia. 

My mom was able to arrange an earlier flight for us home on Friday instead of Sunday. I cannot express how excited I am to get back to my little family of David and Dakota. So excited I feel like I could explode! 

Revisiting Mayo Clinic: My Ehlers-Danlos Syndrome Diagnosis Story 3/2013

I told myself that I would try to keep this updated every day while we are here.. but it's looking more like it's going to be an every-other-day deal. With the long, extremely full and busy days here, when we are able to come back "home" my brain is to tired to rehash things. Forgive me? 

The past few days have been filled with more appointments, tests, snow, encounters with genuinely gracious and kind people, and lots of riding up and down in elevators.

My day yesterday started with a consult with a Musculoskeletal Doctor. They have you put on these lovely shorts which are labeled "one size fits all".. we decided that means, " one size fits ALL-everyone in the room".ha.. And after wearing this lovely outfit, am thinking about starting a career as a fashion blogger.

So a little background history..I have had 5 knee surgeries since I was in middle school, tearing different medial bands in my knee (often times re-tearing the same ones) just by walking. I also have chronic joint pain in my jaw  (TMJ disorder) and extreme lower back pain. Thankfully, the x-rays did not show any damage in the structure of my joints.. which is GREAT news! However, the doctor did find some abnormalities in the ways my body bends and moves, so he refereed me to a geneticist to see if I had a certain genetic disorder.

After the musculoskeletal consultation, I was able to check into my neurologist appointment. The main purpose of this appointment was to confirm or disprove many Doctor's suspicions of fibromyalgia as well as see if there was anything that could be done to treat my migraine headaches (I have had those since I was about 10 years old).

Since I have been here, I have had an important appointment(s) that weren't scheduled until April 30th. At that rate, my insurance would not have covered these appointments AND we would have not been able to stay long enough to get into them. I have been continually calling the scheduling office to try to get into these appointments sooner without any luck. Around 3:45 yesterday afternoon I sent out a text message to some close friends and family who have been praying for my visit here- asking that they pray specifically for this appointment to be moved up to a time where I could go. FIFTEEN minutes later I got a call from Jennifer, the receptionist, that they had an opening next Wednesday for the three day program.. and would I like the slot?! I immediately took it with tears in my eyes, knowing that God had heard that prayer and was working these things out for me.

Why do I always worry and stress so much, when He always has it completely under control?

With every physician consultation, I am amazed at how attentive each Doctor is to my needs.. my records and my overall education. They ask questions, they converse, they get to know me as a person.. and each time I leave they give me their card with their e mail address and phone number. I am always looked in the eyes and told that if I ever need ANYTHING I must call them. Seriously, why aren't all medical professionals like this?!

The whole Mayo system is pretty amazing. I am able to download an app on my i phone which gives me all of my appointment times, I am able to view all of my x-rays and lab results, AND am able to view each extensive write up by each specialist I visit. All of my information in one place.. for David to view, for my doctors at home to view and for ME to view.

Yesterday we walked home in the snow, stopping at a little market to pick up dinner supplies on our way home. Mom walked to Walgreens (in the snow) to rent us some red box movies, and we took it easy for the night after the long day.

This morning we made it to the clinic by 7:30 and started off with another consultation. Again, I was met with another great Doctor who listened, and provided me with so much education and affirmation.

Afterwards, I was able to check in early to my Genealogist appointment and was there for a good 3 hours..reviewing family medical history and having an exam done for certain traits that manifested themselves in a genetic syndrome I was being tested for. I felt very humbled to be able to be where I was. Sitting in a room with someone SO intelligent, yet kind enough to provide me with resources to learn more about my new diagnosis. He even took the time to print me out a picture of a book that I needed to purchase to learn more about living with this fun new condition.

God has me right where I need to be. With Mayo being one of the leading researchers in the Ehlers-Danlos Syndrome, I could have not been in better hands. I have had so many "ah-ha!" moments the past few hours that I feel relieved to finally have a piece of the puzzle of my life explained to me.. but at the same time I am sad to know that I have a condition that is going to continually be with me for the rest of my life. I am sure I will write more about all of that later. I really don't know enough about it to begin to explain what it all is.

Tomorrow I meet with an immunologist, which will hopefully provide more insight into my chronic sinus infections, cough and general sickness.

I feel like there is so much more to write and share, but my eyes are growing heavy and my mind is tired. Thank you again for your constant prayers ( my hand drawn prayers!!), messages, and for opening yourselves up and sharing some of your stories with ME.

My mom and I will be here for another week, with a LOT more time to kill than we have this past week. If you guys know of any fun (low key) things to do in this area I'd love to hear!

I have also decided that I want to train Dakota to be my service dog so that I can take her everywhere with me. Do you think people would fall for that trick? Stick a service dog badge on her and call it a "allergy dog??".  I miss my little buddy so much and wish her and David could be here with me this week.

Revisiting Mayo Clinic: My Ehlers-Danlos Syndrome Diagnosis Story 3/12/2013

It has been snowing here for two hole days..which seems magical to me. Snow is such a peaceful thing God has given us, making all things white and clean and new. Whenever we are waiting for an appointment, we gravitate to the large windows overlooking the old buildings downtown while we watch the snow float in the air. 

Yesterday (Monday) was crazy and awesome all at the same time. We arrived at the 18th floor of the clinic at 9:15 to meet the doctor that would be in charge of my visit. I believe she is in the field of Internal Medicine. 

Here, you meet with one doctor initially and they serve as the "conductor" to your "symphony".. they orchestrate everything behind the scenes. They tell you what appointments need to be scheduled, and will shift your schedule around during the day if something alarming/eye opening pops up on your tests. 

 I spent a good two hours with her going over all of my past and present medical history, undergoing an exam and hearing her recommendations for my protocol while I am at the clinic. As we left the office I was given a large packet of papers with my itinerary for the next few weeks. 

Monday was packed FULL of tests..lab tests, x-rays, EKG's, allergy tests.. SO many tests. Which were all amazing. I cannot even imagine how long it would have taken me to have all of those tests scheduled at home. We got to the clinic at 9:00, and left the clinic at 5:00 pm. A full work day. 

As we traveled from test to test we were serenaded by beautiful music and singing coming from a grand piano in the lobby of one of the main buildings. Later that afternoon there was a pianist and a flautist. It was really beautiful to me to see people in wheel chairs wheeled to hear the music.. mothers holding their sick babies, elderly couples holding hands with masks on their faces to cover them from sickness.. I began to think about heaven and how one day we will all be gathered around worshiping. Only there we will have NO sickness, no pain, and no sadness. 

Today my mom and I arrived (by way of the chaplain that works with the house we are staying at) the clinic at 7:40 for my first appointment. I saw the most gracious ENT I've ever had the pleasure of meeting in my life. He was kind, he listened, and he educated me. I also got to see the inside of my sinus cavity by way of a T.V. screen. It was mind blowing. I truly cannot get over how kind, helpful and patient everyone here is. I feel SO well taken care of. 

I was not ready for all of the great art the Mayo clinic holds. A whole wall of original Warhol prints, Chihuly sculptures hanging from the ceiling, and giant sculptures and paintings everywhere. A trip to the museum and doctor all in one- you can't beat that! 

Today I also visited the lady doctor. After living 2 years with endometriosis, I was finally properly educated on WHAT the disease is, how it's treated (or not treated), and how to live with it. He spent a good hour and a half talking with me, answering my questions, educating me and REALLY considering all of my medical history as he was trying to find a treatment protocol. As I left he even gave me his card and told me to e mail him if I ever had any questions. Why aren't ALL doctors like this?! I mean seriously, he ADVOCATED for me. Most of the time when I visit the doctors it is an uphill battle trying to get them to listen to what is going on in my body. I walked out of that appointment with a smile on my face because I felt understood. It was a great feeling. 

Tomorrow I have several more appointments, and a few tests. There is still no clear picture at what is going on and causing so much trouble in my little body. We are very thankful that we were able to get a Neurologist consultation bumped up from Friday to tomorrow afternoon! This was a big prayer of ours yesterday that has been answered! It seems like this appointment is going to give a lot of insight into some underlying issues I am having. 
I have gotten so many encouraging e mails, texts, phone calls and messages from you all. I cannot tell you how much it means, and how much your prayers are lifting my spirits. 

As mom and I were walking out of the clinic this evening (and heading to a wonderful Gluten Free Restaurant) I told her that I felt like I had spent a day at church camp/Disney World for sick people. She couldn't agree more. 

Well Hello Again

Well, here we are, sitting back at my computer with this blank blog page in front of me. After a long absence from the blog-o-sphere, I find myself back at the same place I started.. sharing my journey with you all.This time, however, it feels completely different. It FEELS completely different because I am living completely different life than I was when I had first started blogging all those years ago over on Eat.Live.Make.

I do not really care if blogs are or aren’t popular anymore, because right now this is the best mode of communication I have with you all. Before I was concerned about analytics and attracting an audience and networking and somehow making money and trying to somehow prove to myself that I had something to offer (just like all of those other cool successful mommy bloggers!) through my experience.. because my experience was obviously different.

While the voice you heard in my writing before was certainly MY OWN voice, it was also a timid voice who was afraid of your judgments and most importantly the whiplash of having anything I shared used against me by my ex husband. I was to keep things hidden, the truth behind the DIY projects, the excessive moving, the gluten free recipes.. the ways I was not coping well with what life was throwing at me. I feel like i could unearth each of those old entries off my blogger website and rewrite it all to tell the story that was going on behind closed doors and within my soul (which was very much silent during that period of my life).

The photos had to be just right, I had to post daily, I spent days trying to figure out how to make money and didn’t really have the resources within myself to build a true community out of what I was sharing. My heart to help and share and educate and build community is still the same, but this time I am going to go about it a completely different way- openhearted, while also having boundaries and allowing my intuition to lead me as this process unfolds.

I want to embody my entire experience of life with ehler-danlos syndrome so that I can be a light and inspiration to those of you who are walking this path and following in our footsteps. My voice is one of many MANY MANY strong individuals who have complex and harrowing journeys with this strange connective tissue syndrome that connects us. My hope is that, in allowing myself to be vulnerable with the sharing of my individual life experience, you will come to see that you are not only not alone, but you have EVERYTHING within you to live a FULL life within the boundaries your body places upon you.. I hope that this opens up conversations, tellings of truth, disappearance of the shame we place upon ourselves because of our bodies, and that this space can be a resource for elemental healing of body, mind, soul and sprit.

All of this to say that I am excited to be back, I am excited to have to words to share and excitement instead of shame and fear. I am no longer running from the parts of myself people don’t like to see, the parts that I have hidden, and am seeing how special and unique I have always been.. my journey with EDS has brought me to this place and has given me a platform from which to speak my truths. I cannot wait to share how I have changed my limiting beliefs about myself and especially myself in relation dto Ehlers-Danlos Syndrome and my physical body, and how I have found peace and even thankfulness for this road I have walked. The month of May is Ehlers Danlos Awareness month, so I’m just going to start from that vantage point and see how things bloom.

Please leave any comments or questions so we can start a conversation!

Travel Mobile

It is no secret that I have been dreaming of owning an adventure vehicle for quite some time. My first obsession was VW Westfalias, but then I realized that I have NO mechanic skills (nor do I really want to have any) so I started stalking camper vans I could re-finish. Finding a van that has good bones, an engine that runs well and something within my previous 5K price range is a bit of a stretch, but I ventured out and looked anyways. duh. 

Last year I went so far as to test drive several vans (all under 1,000$) with an intention to call it home for the following year after I left my marriage. It would seem that someone would give up on a dream when their Kickstarter campaign didn't work out, or when all of their attempts to live and work in a van didn't pan out, or years of fighting to save for a van would leave me defeated... but nope. DREAMS WILL COME TRUE. 

who isn't in love with The Nugget from Vinstage Rivivals?!

So I dream about my little van. I dream of one day being able to hit the road and pull over wherever I want and sleep..with my dogs..in my bed. I dream of waking up on the beach (it doesn't matter which one, because I have a VAN!), crawling out of bed and diving in the ocean with my dogs and my surf board. I dream of waking up on uncharted roads in California and watching the vast landscape of our country from my BED in my VAN (so cool, right?).

My heart aches for adventure, but my body slows me down. A van allows me to take in the beauty and the vastness and the magic of nature without having to hike to get there. Because lets be honest, I can't really hike anymore. I love tiny spaces, I love cozy nooks, I love being able to be in my own space while visiting with friends and family across the country. Can you imagine? being able to travel without flying (the barometric pressure really messes with POTS), being able to take photos of my friend's children all over the states, and being able to do it at my own pace. 

Now, with my dream of the in-visible project, I hope to merge my love for adventure/travel/friends/photography and capture these stories in different areas of the United States. My goal will be to target different support groups and book elopements/sessions while I am on the road.. being able to ultimately serve different parts of the US while still calling Savannah my home base. Traveling will take a bit longer, but I will have all of my medicine, comforts, animals, gear.. right at my finger tips. 

I am not really sure how, of if this dream will play out the way i invision it... but I can trust that whatever comes will be just what I need right when I need it. I can trust the dream inside my spirit and know it's intentions are pure and beautiful and that if I am open, the adventure will come. The unknown is very exciting, isn't it? 

If your curious about the research I've done, I have a few pinterest boards that I've been pinning different things to as I am curious. Here's all of the pins I've got on van interiors , here's what I've got on different space-saving living solutions for interiors (I LOVE TINY) , and here's my pinterest boards if your bored :).

50 Sparkler Exit Alternatives for your Wedding Day

Ah, the good-ole sparkler exit.. brides love it and wedding vendors cringe when they hear it.. is it worth the one good photo you get from all of the work? 

Who is to say?

My wedding was 7 years ago, a few years before the sparkler trend really started taking steam in the wedding industry. Now, in 2017, it is rare that I photograph a wedding that does not have the couple exiting their reception under a row of lit sparklers.

Sparklers are to my generation what bird seeds are to my parents generation.  

Sparklers slowly creeped into wedding exits and have almost entirely replaced "bird seed toss"  reception exit that was so common years ago.

As a frequent wedding guest, I would love some variety in how I photograph my couples leaving their wedding reception.

Why not try something new? Why not step out of the box and create a way to exit your wedding that is entirely and uniquely YOU? 

Need some ideas to get you started in that direction? Look no further! I've got fifty fun-and-crazy-and-sweet-and-awesome ideas for you to grab onto as you think about how you and your partner will exit your wedding reception. 

1. Dry your favorite flowers/herbs and have your guests toss them in the air as you leave (you can thank ERIN for this idea)

2. Are you a sports fan or a former cheerleader? Have guests line up in a receiving line with pom-poms as you run under and exit

3. Try LED lit pom poms if your planning on leaving when it's dark.

4. Star Wars fans? Give your guests light sabers at the reception to dance with and then hold in the air as you exit. 

5. Leave your wedding in a Hot Air Baloon (and let your photographer ride with you.. duh)

6. Pull a run-away-bride and ride away on a horse (or multiple horses) with your partner.

7. Rent a carriage in downtown Savannah to take you to your honeymoon suite. 

8. Buy butterfly kits and raise caterpillars with your partner until they turn into butterflies. have guests release them as you leave your wedding reception 

9. Getting married in the summer? Why not put on bathing suits and run through sprinklers as you leave your wedding.

10. Speaking of sprinklers, why not just get all of your guests to exit via

11. Exit your reception on a motorcycle 

12. Have guests throw home made confetti in the air as you exit

13. Want to knock two things out at once? Give guests ribbon dancers as their wedding favors and have them wave ribbons in the air as you exit. (you should totally have your party do a coordinated ribbon dance on the dance floor.. just sayin')

14.Give guests bubbles to blow as you walk through them like at Amanda and Matt's wedding.

15. Love loud noises? Give guests these confetti poppers to pop as you walk through them towards your getaway car.

16. Live by the water? Why not leave your reception on a boat?

17. Don't mind getting dirty? Why not have guests throw Holi powder as you walk through? You could have them all put on aprons/large t shirts/bring a change of clothes and keep colored clothing as "wedding present"

18. I love flowers. If you love to garden and love flowers, why not have guests throw seeds in the air over garden planters/open field/pots for favors? The flowers will grow and bloom just as your marriage does!

19. If you love to cook, dry herbs and have guests throw/keep herbs as you leave your wedding reception. Everyone will end up smelling like fresh rosemary, lavender, cinnamon..

20. Give guests disposable cameras to use throughout the wedding day, asking them to save two photos for the very end. Have everyone together as you exit and fire their flashes all at the same time. Develop the photos to see the different view points of your guests

21. Getting married on the beach? Give guests small inflatable beach balls to toss around as you exit your reception. 

22. Leaving at night? Give guests glowsticks to wave as you leave your wedding.

23. Pop popcorn and have guests throw in the air as you leave. 

24. If you are feeling sentimental, save up flower petals through your relationship and have guests throw those in the air as you leave. Give them in little jars so they can keep some as their wedding favor. 

25. BUY SOME LIGHTNING BUGS AND SET THEM FREE AS YOU LEAVE YOUR RECEPTION. 

26. GIVE GUESTS  PRAYER FLAGS  TO WAVE AS YOU LEAVE, LET THE FLAGS BE THEIR WEDDING FAVOR & CONTINUAL REMINDER THAT YOU INVITED THEM INTO YOUR NEW MARRIAGE 

27. HAVE YOUR WEDDING GUESTS WRITE THEIR GOOD WISHES FOR YOUR MARRIAGE ON STRIPS ON FABRIC DURING YOUR RECEPTION. AT THE END OF THE RECEPTION HAVE THEM WAVE THE FABRIC IN THE AIR AS YOU LEAVE. LATER, TIE THEM ON A DREAM CATCHER LIKE SARAH AND PAT DID AT THEIR WEDDING. 

28. HOW FUN WOULD IT BE TO RUN UNDER A PARACHUTE  AND GIVE CUSTOM BEAN BAGS OUT TO YOUR GUESTS AS FAVORS?

29. QUINOA IS THE NEW RICE. THROW QUINOA AND GIVE QUINOA AND RECIPE AS WEDDING FAVORS.

30. LEAVE ON A TINY PLANE. THAT WOULD BE BAD-ASS.

31. GETTING MARRIED ON THE WATER, LIKE, MAYBE AT WYLD DOCK? LEAVE BY WAY OF STAND UP PADDLE BOARD OR KAYAK OR CANOE. 

32. LEAVE BY PLAYING AN EPIC GAME OF RED ROVER.

33. LEAVE BY WAY OF WATER BALOON FIGHT.. GROOMS SIDE V. BRIDES SIDE

34. NOT INTO WATER BALOONS? TRY SMALL SQUIRT GUNS. 

35. RELEASE FLYING LANTERNS AS YOU LEAVE

36. WANT TO GO BIGGER THAN SPARKLERS? WHY NOT LEAVE BY FIREWORK SHOW?

37. KONGO LINE OUT TO YOUR GET-AWAY CAR.

38. HAVE A DANCE OFF LINE OUT TO YOUR GET-AWAY CAR.. YOU AND YOUR PARTNER EXITING LAST

39. GIVE HATS/VISORS/BEANIES OUT AS WEDDING FAVORS, AND HAVE GUESTS THROW THEIR HATS IN THE AIR AS YOU EXIT THROUGH THEM.

40. DO YOU AND YOUR BOO SKATEBOARD/LONGBOARD? WHY LOT LEAVE BOARDING DOWN AN EPIC HILL (OR THE DRIVEWAY OF YOUR VENUE)?

41. EXIT BY GO-KART.

42. EXIT BY CAMEL OR ELEPHANT. PLEASE SOMEONE LET ME TAKE A PHOTO OF YOU DOING THIS. 

43. ARE YOU GUYS A LITTLE GRANOLA LIKE ME? WHY NOT HAND OUT SAGE STICKS TO YOUR GUESTS AS THEIR FAVORS, AND HAVE GUESTS WAVE SAGE SMOKE THROUGH THE AIR AS YOU LEAVE.. CLEARING THE WAY FOR GOOD THINGS AHEAD OF BOTH OF YOU. 

44. BIG SPORTS FAN? EXIT THROUGH GUESTS WAVING FOAM FINGERS (AS THEIR WEDDING FAVOR) DOWN THE RECEIVING LINE

45. HIRE A MARIACHI BAND TO PLAY AS YOU AND YOUR BOO LEAVE YOUR RECEPTION

46. HIRE A GUITARIST TO SING YOU LOVE SONGS AS YOU LEAVE YOUR WEDDING 

47. ARE YOU AND YOUR FRIENDS CYCLISTS OR BIKE ENTHUSIASTS? PUT GLOW-IN-THE-DARK- LIGHTS ON YOUR WHEELS AND RIDE OFF INTO THE SUNSET (OR SUNRISE?)

48. BACK TO THE BEACH BALLS, THEY CAN GLOW IN THE DARK TOO!

49. LAZER FAVORS WITH A "LAZER SHOW" AS YOU EXIT. 

50. IF YOU ARE GETTING MARRIED IN THE SNOW, WHY NOT LEAVE YOUR WEDDING WITH THE MOST EPIC SNOW FIGHT OF ALL TIME?

Joshua, The Treehouse

Ideally, I'll separate this post out in several little posts telling you all about the project I concocted as I re-decorated the airbnb Treehouse in Carrboro, N.C. Her re-decoration came at a time of transition in my life, and was a beautiful learning experience for me. It is my hope that her new digs will attract all of the most wonderful airbnb clients to fill her space when I am not around. 

Savannah Small Business: Justin Peay Productions