On Pain

"Your pain is the breaking of the shell that encloses your understanding. Even as the stone of the fruit must break, that its heart may stand in the sun, so must you know pain. And you could keep your heart in wonder at the daily miracles of your life, your pain would not seem less wondrous than your joy; And you would accept the seasons of your heart, even as you have always accepted the seasons that pass over your fields."And you would watch serenity through the winters of your grief. much of your pain is self-chosen. It is the bitter potion by which the physician within you heals your sick self. Therefore trust the physician, and drink his remedy in silence and tranquility: for his hand, though heavy and hard, is guided by the tender hand of the Unseen, And the cup he brings, though it burn your lips, has been fashioned of the clay which the Potter has moistened with His own sacred tears."

meet jade

what’s in a name? well, i’m realizing, everything. 
what’s in my name? well, i’m realizing, a lot. 
who am i? not who i once was. but certainly not who i will be. and that is very exciting. 
what is jade? it is rooted, but growing and is a blessing others while it grows and trails new roots. 
it is tough, but it has an ability to polish and sharpen whatever it touches. it is a dream-solver, creatively giving access to the spiritual world. 

what am i? i am a jade. i spend time gathering wisdom deep within my tranquillity. i break apart the negative with the light of my encouragement and bravery, allowing someone to see themselves as they really are.. beautiful and worthy of love. 
i am jade. and this space i am creating is called the jade hill.

IKEA partners with Amazon in 2018

Raise your hand if you love IKEA as much as I do. Affordable furniture that is well designed and (mostly) reliable. The only problem is that the majority of us do not have access to IKEA stores, and only certain products can be shipped at an incredibly high shipping price. 

Thanks to my daily update on Apartment Therapy, I learned that IKEA has announced they are going to start partnering with Amazon in the coming year. What does that mean for Prime members? FREE shipping on IKEA products. Right to your doorstep. 

The news is just TOO good not to share. 

Want to read more? 

Head over to Apartment Therapy. 

Ten Children Describe What It's Like To Live With Ehlers-Danlos Syndrome

I have often asked myself "what would I have been able to communicate as a child if I was educated about EDS at a young age? would it have changed my outcome now? what if doctors were able to pick up on the bruises and see the connections between all of my falls and sprains and surgeries. 

Late one night I was looking into current Ehlers-Danlos Research, and my browser brought me to a site I immediately wanted to bite into. The Mighty is a easy-to-navigate, well-proportioned and beautifully designed site that dedictes it's resources to,

 "creating a safe platform for our community to tell their stories, connect with others and raise support for the causes they believe in. We are stronger when we face adversity together, and we know it. We’ve also partnered with over 200 nonprofit allies to deliver their excellent resources to our community."

Because I have been asking myself these introspective questions about my early childhood "signs and symptoms", I was immediately drawn to an article written and gathered by Hannah Wingert on the Mighty. She asked several children to describe what it is like living with EDS, and I have shared answers from children I can relate to from my past experience with EDS. 

---

Anonymous, 7 years old – “I feel stretchier. It makes me feel like I’m the special kid. It’s because I have something that other people don’t and that’s why I’m feeling that way. It affects, like, sometimes I try to run and then part of my body hurts and then I stop.”

Nicholas, 11 years old (hEDS) – “Awkward and painful.”

Dylynn, 11 years old – “I hate being clumsy, and I hate the knee braces, but I love the aqua therapy.”

Brandi, 6 years old (hEDS) – “It’s not bad. When my hands and feet are sleepy (numb) is what I hate the most. Oh, and my legs. They stay tired a lot.”

Jessica, 4 years old (cEDS) – “It’s too many doctors. I hate my boots (AFO braces). I’m tired of getting hurt.”

Kyler, 7 years old (cEDS) – “It’s pain. I want to run with my friends and play sports. But it hurts.”

Nikolas, 9 years old (hEDS) – “It hurts me. I love to draw, but it hurts my hands. I hate when bits go the wrong way, like my elbows and feet. I hate when my shoulders won’t move.”

Mathew, 7 years old (hEDS) – “I hate that it’s made me stretched (marfanoid habitus) and that I bruise and get nosebleeds all the time.”

Jack, 6 years old (hEDS) – “I don’t like my wobbly ankles and wrists and having no teeth like my friends, but I like showing my teachers how I can pick my nose with my tongue.”

Luke, 4 years old (hEDS) – “ I don’t like wearing my boots (braces) with shorts. I can’t hold my pencils like my friends at school, too.”

Abigail, 8 years old (hEDS with vascular crossover)– “EDS makes me feel unique. It feels like I am hiding a secret because I don’t really tell people that I have EDS. People just don’t ask, so I don’t tell. Sometimes I am sad when I can’t play or do other activities that my friends do.”

Dax, 7 years old (cEDS) – “It feels very sad. l have to be sick every single day of my life. I feel like I have the flu every day. It feels like stabbing.”

Katie (my daughter), 9 years old (hEDS) – “I’m different than my classmates. I like EDS because my class likes to see what I can do (um, we’re going to have to have a talk about this!). I don’t like that I hurt all over somedays.”

debt free and thirty

Last month I logged into my Barclay card account and made the biggest payment I have made yet. EIGHT thousand dollars. I held my breath and transferred the money over from my savings to my credit card. I never thought I would have debt, and then I never imagined I'd be in a place where I could pay off all of my debt at once. But, did I make the best decision? 

I immediately regretted my decision after I pushed the "send" button on my computer screen. My new camera was now paid off.. my computer was now paid off.. all of my incurred debt from the divorce, moving, traveling... all. paid off. Why did I regret that decision? I knew I wouldn't be getting paid again for another month, I only had $500 left in my bank account to last me the remainder of the month.. and I hadn't been budgeting well lately. 

Has anyone ever told you how good it feels to pay off all of your debt? SO GOOD. 

No matter how good it felt,  the following month of my life was a bit of an explosion in terms of my finances. Bills came in that I was not expecting. My credit card expired so I could no longer put daily items on it to pay off when invoices are paid.. causing me to overdraft my bank account. My phone fell in a tub of lemonade and died, so I was without a phone for 3 weeks.. you get the picture. My health insurance company (hi Humana) called me ( as I was walking into the doctor's office) to tell me they were not going to pay for my appointment with Dr. Francomano in Baltimore.  Unforeseen circumstances knocked me off my rocker in a big way. 

Over the past 30 days I have been elated (I PAID OFF MY DEBT! WHAA!!!! ALL BY MYSELF!!), embarrassed (trying to check out at the grocery store and having your debit card rejected as well as over-drafting TWICE on my bank account), stressed wondering when my clients would pay their invoices, and proud of myself for being able to do whatever I want with my finances from here forward. 

From it all I have learned one big lesson : I have got to start budgeting better. Being a freelancer makes your income somewhat unpredictable. My calendar is blank for August and September, meaning I need to make the money I have right now last me all summer long. If I can pay off my debt in 6 months, then I can make my finances stretch the summer months. I am going to start researching different ways to help me make my budgeting system better.. I must budget for my personal finances AND my business, and I am working with my sister to re-work the marketing for my business. I am taking steps to make sure a month like last month doesn't happen again. I am going to set financial goals, start saving for those goals and I am going to try to trim the fat off of my spending. 

Here's to living debt free for the following thirty years, and learning how to be smart with the money I make. It's going to be a fun ride. 

hEDS Daily June 1, 2017

EVENING EVALUATION:

1. WHAT TIME IS IT? 12:30 PM

2. CURRENT LOCATION: Greensboro, NC

3. CURRENT TEMPERATURE:  HOT

4. DID I EAT ANYTHING DIFFERENT/NOTABLE?: not yet

5. OVERALL PAIN LEVEL TODAY (ON 1-10 SCALE SYSTEM): 5 .. shoulder and hips hurt a lot today

6. WHERE DID I EXPERIENCE THE MOST PAIN/DISCOMFORT TODAY?  : so far my neck below my skull and my right shoulder. I am wearing compression socks, and those help my feet so much!

7. ENERGY LEVEL: pretty good actually considering I shot a wedding on Sunday

8. DID ANYTHING MAKE MY ENERGY AND PAIN LEVELS BETTER OR WORSE? n/a

9. EMOTIONAL STATE TODAY: focused 

10. HOW DID I LOVE MYSELF TODAY?

11. DID I USE MY CANE, WALKER, SEGWAY TODAY? segway

12. DID I PARK IN HANDICAPPED PARKING TODAY? yes.. still pretty weak even though the pain isn't AS bad

13. DID I WORK TODAY? : working now!

14. MUSIC LISTENED TO TODAY: n/a

16. anything else worth notating about the day, overall? not yet 

20. PLEASE PROVIDE ANY PHOTOS TO DOCUMENT BODY CONDITION/EMOTIONAL HEALTH/ACTIVITIES COMPLETED FOR DAY:  just need to note that I haven't filled out survey in a while due to super busy schedule traveling and shooting. My neck and lower back seem to be getting worse these days, and are effecting my ability to stand upright too long because I get tired. However, I haven't passed out since my last episode before Hillary and Ryan's wedding, and I am starting to develop a plan for my healthcare with Kathleen today! 

Three Hundred Square Foot Jade Cottage Tiny Home In Savannah, Georgia

If you know me at all, you know I have had a little bit of an obsession with tiny house living since I discovered it was a possibility over 9 years ago. Since then I have lived in almost every form of home: ranch, loft, rentals, fixer-uppers and I even bought a house! 

It seemed like a really far-off possibility until I left my marriage and needed an affordable and safe place to live in Savannah while I re-grouped my life. After almost giving up home I'd be able to find a place I could afford, this little cottage was listed on Craigslist and I immediately bit.. six months later, and I am still calling this little cottage home with waverly, dakota and nova-luna. 

The photos were taken in February, and things have been arranged-and-rearranged since then, but they are basically the same. I have spent a lot of time and energy sculpting my space into a space that is easy to clean, easy to arrange, requires little thought about cleaning, and one that makes me feel happy and alive. The products and art that I have chosen aren't by chance, and have been chosen based upon their affordability.. mostly I have just gotten rid of a lot of things I don't need and have kept the things that enhance my life. 

As Marie Kondo says, only the things that "spark joy" remain.  Shall we tour? 

The cottage has been thoughtfully laid out and is one of the most space efficient tiny spaces I've ever been inside! When you walk in the front door you are met with the the entirety of the cottage (minus the laundry/bathroom/closet), but the kitchen is directly in front of you. We will start there:

The art on the kitchen walls is by my talented friend Allie Lehman. The fridge is littered with client letters, Christmas cards, developed film and far away friends. 

There is a small stovetop with a little oven underneath that suits me perfectly. All of the drawers have been organized following Marie Kondo's Life Changing Magic of Tidying Up  , which I will be sharing lots more of soon!

Tunes are kept playing in the cottage thanks to my free record player I scored in Nashville from Third Man Records , and I keep local magazines like Savannah and South for guests to read while I cook. 

If you look further down the wall that houses the fridge and record player, you'll find a couch I made from a score on craigslist + cushions I upholstered and found at thrift stores and ikea. The wall above the couch is littered with art from Emily Jeffords, Britt Bass, Teil Duncan, Hillary Butler, KATE Waddell, my sister and myself. 

The art above my bed was a sweet gift from Linen and Leaf , the macramé prayer flags over my bed are a gift from Be With Heart  , the small yellow and white weaving is from Hazel and Scout, and the other various things in my home are most likely finds from thrift stores, from Ikea, made by myself and/or gifts from friends! 

EDS Daily: Monday May 22nd, 2017

MORNING EVALUATION:

1. TODAY'S DATE: monday, may 22, 2017

2. CURRENT TIME: 12:56 pm

3. CURRENT LOCATION: savannah, ga

4. CURRENT TEMPERATURE: 90

5. BLOOD PRESSURE: 

6. TIME I WENT TO BED: 10pm

7. TIME I GOT OUT OF BED: woke up at 8:30, got out of bed at 10 am 

8. TOTAL HOURS SLEPT: 10.5

9. HOW DID I SLEEP?: great actually! I have been really sleeping well lately

10. WHAT MEDICATIONS & SUPPLEMENTS DID I TAKE THIS MORNING? Armour hyroid 60 mg tablet x2/day | duloxetine hcl 60mg | ratitidine tablets 150 mg x2/day |  ccyclobenzaprine 5mg x 3/day | cetirizine hydrochloride 90mg x2/day | cannibus as needed for pain | chromium soduim 5mg 6x/day | 

11. WHAT PART OF MY BODY HURTS THIS MORNING ? woke up with pretty sharp pain in my left hip and back. legs hurting, but am now wearing compression sleeves on lower legs. very sore today after shooting a wedding on Saturday. headache. 

12. ON A SCALE FROM 1-10 (ONE BEING THE BEST AND TEN BEING THE WORST) WHAT IS MY OVERALL PAIN LEVEL THIS MORNING? WHAT TYPE OF PAIN IS IT?  8, soreness 

13. USING THE SAME SCALE AS ABOVE, WHAT WOULD YOU RATE YOUR OVERALL ENERGY LEVEL TODAY? 6, not high, but not as low as it sometimes is after shooting a big event

DO ANY SPECIFIC PARTS OF MY BODY FEEL FATIGUED? yes  WHAT DOES THAT FEEL LIKE? legs, neck, jaw.. it seems as if it takes a long time for my brain to reach my muscles today. 

14. DO I HAVE A HEADACHE?  yes 

15. HOW IS MY THOUGHT PROCESSING THIS MORNING? actually kind of decent 

16. DO MY LEGS WORK TODAY? enough to walk around the house 

17. DO I NEED ASSISTANCE TO WALK THIS MORNING? not really, just stabalizing 

18. ANYTHING ELSE WORTH NOTING? .. 

Had a wedding on Saturday here in Savannah, and am really proud of how well my body held up. I used the segway to get me around long distances, and was able to stand while doing the actual "shooting". Working as a team with E-S is getting easier, which allow my body to not bear all of the weight of the photos and the stress of the wedding day. Yesterday I was good to keep up on my chromium dosages, I stayed in bed all day not putting forth much physical effort and got two solid nights of sleep while eating well at the wedding and at home since. 

5 Things I Learned During My Week (s) Without A Phone

It was one of those days. You know, where nothing seems to go right and it always rains when you walk out the door. On the way from Carrboro to Savannah Nova-Luna bolted from the back of my little honda element to the front passenger's seat. On her way she dug her claws in an extra-large cup from Chick-Fil-A  filled with lemonade. The hole in the cup made the lemonade spill all throughout my center cup holder. What once held cups for my  trip soon held a big pool of lemonade. 

Several hours later, after getting off the phone with my mom and forgetting to clip back the bottom charger port on my life-proof (NOT) case, my phone silently slipped off my lap and into the moat of lemonade. Thus ruining my refurbished replacement (from dropping my i phone in the dog's water bowl) i phone. With my cell-phone-replacement-funds fresh out of cash, I find myself without a cell phone. 

Now, i phone texts still show up on my computer, so I am not cut of completely.. but it's enough to cause a pretty big shift in my day-to-day existence. I've learned a lot while I have been withoutmy always handy GPS, social media stalking, bank account status, music playing device.. lucky for you I've narrowed it down to Five takeaways for you:

1. social media can wait: 

The first and foremost nugget of truth I am keeping in my pocket from this period is this " social media can wait". I have already cut out facebook, no longer use snap chat or twitter, and prefer to keep my attention turned towards instagram. You cannot use instagram without a phone. 

I realized that I am normally checking in on intagram when:

• i am bored
• i am in a boring conversation
• i am overwhelmed and exhausted
• i feel awkward
• i feel like i'm missing out
• i get stressed that i am not booking work
• any other situations where I want to occupy my brain with something other than the present 

On average, I'd say instagram normally takes up an average of 1-2 hours a day of my attention and focus. Since not having my phone, I have checked into instagram twice on my computer, and only stayed on it long enough to check my messages. I don't miss it. I don't even know if I ever get any leads/traffic/bookings from instagram. 

I am now questioning whether or not I want to get back into the instagram game when I get a new phone?

2. turn off and tune in: 

Last Sunday, I was at dinner with my parents and I realized I was super annoyed with my dad because he kept checking in on his phone. After I stepped back from the situation, I realized that I would have (and often do) done the same thing my dad did.

When there's a void in conversation and we start to get awkward, what do we do? check our phones.

When you are at a stoplight, what do you do? Check your phone for new leads, new likes, new e mails.. 

When I look around the room at dinner, parties or public places I realize how thankful I am that I dropped my phone in lemonade and am re-training myself to turn off my phone and attention to my phone and tun in to what is going on around me. People are actually really interesting! 

3. your brain still works:

This is quite possibly the most alarming piece I am taking away from this whole phone fast.. my brain works really well. I can get places on my own (without google maps), I can still do simple math (without my calculator), and I can come up with alternative ways of looking up informationinstead of googling every question I have. 

4. cut out the noise: 

Sometimes we just need a break from the constant bombardment of texts, instagram likes, twitter tweets, e mails in your inbox, and voicemails from doctor offices. 

Without my phone I haven't had the opportunity to bring more noise (by way of sound/media/advertisement etc) into my day-to-day. My mind seems clearer since I'm not distracted by communicating with the people that aren't around me.. My thought processing is better, and my ideas are clearer. I would also like to think I am more present in conversations now. 

5. just because it says life-proof, doesn't mean it actually IS life proof. aka take care of your stuff: 

"This is why we can't have nice things" is a phrase I am constantly saying out loud to myself when I break something. I have always been a bargain shopper, but have started allowing for a splurge on something if it is a product that will last me a LONG time and will pay off in the long run. 

This leads me to my point: when you have  nice things, treat them well. Don't let them drop on the ground, don't assume that since it's in a case it's impenetrable by outside forces, and batteries are made to last a while so charge them accordingly. 

I have an e mail out to Huaweh about their new Mate 9, and am saving up money for another replacement.. but in the meantime I am going to enjoy being unreachable, inspired and entirely present in my life. Who knows, I may just end up getting a flip phone and/or a land line! 

eds daily Tuesday May, 16th

MORNING EVALUATION:

1. TODAY'S DATE: may 16th, 2017 (rent's due today!)

2. CURRENT TIME:1:26

3. CURRENT LOCATION: savannah, ga

4. CURRENT TEMPERATURE: 90

5. BLOOD PRESSURE: 

6. TIME I WENT TO BED: 9:00 PM

7. TIME I GOT OUT OF BED: 9:00 AM

8. TOTAL HOURS SLEPT: 12

9. HOW DID I SLEEP? GREAT!

10. WHAT MEDICATIONS & SUPPLEMENTS DID I TAKE THIS MORNING? Armour hyroid 60 mg tablet x2/day | duloxetine hcl 60mg | ratitidine tablets 150 mg x2/day |  ccyclobenzaprine 5mg x 3/day | cetirizine hydrochloride 90mg x2/day | medicinal cannibus as needed for pain | cyclobenzaprine 5mg | chromium sodium 5mg oral x4 daily | maxalt this am for migraine 

11. WHAT PART OF MY BODY HURTS THIS MORNING ? head, back, legs, left hip, hands

12. ON A SCALE FROM 1-10 (ONE BEING THE BEST AND TEN BEING THE WORST) WHAT IS MY OVERALL PAIN LEVEL THIS MORNING? WHAT TYPE OF PAIN IS IT? 8.. soreness mainly. the "hit by a truck" kind of pain

13. USING THE SAME SCALE AS ABOVE, WHAT WOULD YOU RATE YOUR OVERALL ENERGY LEVEL TODAY? 7.. moving slowly, but my brain is functioning ok? 

DO ANY SPECIFIC PARTS OF MY BODY FEEL FATIGUED? WHAT DOES THAT FEEL LIKE? my eyes. hard to hold up my eyelids 

14. DO I HAVE A HEADACHE?  ohhhh yeahhhh babyyy

15. HOW IS MY THOUGHT PROCESSING THIS MORNING? below normal, but not supperr slow 

16. DO MY LEGS WORK TODAY? ish 

17. DO I NEED ASSISTANCE TO WALK THIS MORNING? no 

18. ANYTHING ELSE WORTH NOTING? trying to get a lot of sleep this week between weddings. it needs to be noted that i went almost a day without chromium sodium and it's absence started triggering neurological effects in my body. for instance, I would turn my head to the right and then my right arm/mouth would start twitching and kind of get "stuck". This continued to happen until i had about 2 viles of the solution in my system. 

ALso! Saturday, the day I shot a wedding, I had E-S pop my lower back with a bear-hug. (you know you pick someone up and kind of swing them until the pressure releases?) well, he squeezed my ribs verrryyyy hard and i started saying "that's to hard! i'm going to pass out! I am going to pass out!!" i felt a rush of blood to my head and heard the sound of a heart monitor beeping along with the smell you smell when you go under for surgery. I also heard nurses and doctors shouting "wake up! wake up! she's not waking up!" It felt SO REAL. Then, my vision starts to tunnel back and I hear someone saying "wake up! are you ok? meg! are you ok?" .. as i was still hearing the monitor beeping i heard e-s's voice.. then i slowly saw his face and I was right back where i was (which seemed like decades ago), in his arms with my back being popped. 

As I came back, I was told that I "was only out for a second, my body just went limp.. then it started twitching a bit as if struck by electricity.. no, it wasn't long at all." 

My first POTS/ dysautonomia experience now in the books. definitely not looking forward to another one. 

hEDS Daily: Saturday May 13th, 2017

i guess the elephant in the room should be exosed: i'm totally not following the schedule like I would like to. I am not interested in making myself feel bad about not meeting my "daily morning and evening check-ins". I'd like to keep giving myself grace and allowing this "check in" to happen as it should. 

is once a day all i have in me? awesome. let's do a morning evaluation. what if i check in at night? lets just do an evening evaluation.. that's how i am going to structure it, for my sanity, from now on. 

I started this post on Wednesday, and am just now finishing it on Saturday. Looks like I need to prioritize my time better! 

MORNING EVALUATION:

1. TODAY'S DATE: Saturday May 13th

2. CURRENT TIME: 11:00 am

3. CURRENT LOCATION: Savannah

4. CURRENT TEMPERATURE: 70

5. BLOOD PRESSURE: 

6. TIME I WENT TO BED: 10 pm

7. TIME I GOT OUT OF BED: 9:30 am

8. TOTAL HOURS SLEPT: 11.5!

9. HOW DID I SLEEP? awesome

10. WHAT MEDICATIONS & SUPPLEMENTS DID I TAKE THIS MORNING? Armour hyroid 60 mg tablet x2/day | duloxetine hcl 60mg | ratitidine tablets 150 mg x2/day |  ccyclobenzaprine 5mg x 3/day | cetirizine hydrochloride 90mg x2/day | medicinal marajuana as needed for pain | chromiam sodium 5mg oral x as needed daily

11. WHAT PART OF MY BODY HURTS THIS MORNING ? left hip, feet, head and fingers

12. ON A SCALE FROM 1-10 (ONE BEING THE BEST AND TEN BEING THE WORST) WHAT IS MY OVERALL PAIN LEVEL THIS MORNING? WHAT TYPE OF PAIN IS IT?  6, soreness 

13. USING THE SAME SCALE AS ABOVE, WHAT WOULD YOU RATE YOUR OVERALL ENERGY LEVEL TODAY? not sure yet, but I have a wedding today so it better be good! 

DO ANY SPECIFIC PARTS OF MY BODY FEEL FATIGUED? WHAT DOES THAT FEEL LIKE? 

14. DO I HAVE A HEADACHE?  yes, it's raining outside 

15. HOW IS MY THOUGHT PROCESSING THIS MORNING?  slow, but that's pretty normal for morning time 

16. DO MY LEGS WORK TODAY? yes

17. DO I NEED ASSISTANCE TO WALK THIS MORNING? no 

18. ANYTHING ELSE WORTH NOTING? I feel off the segway pretty hard on Thursday. I think the pain and soreness from that fall (on concrete) is starting to settle in. I'm interested to see how my body handles it.