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

Savannah Small Business: Mea Flowers

Savannah Small Business: Cocktails and Details

Appealing Insurance Claims with Kindness and Education

here's the deal: humana doesn't like to recognize my previously existing condition of Ehlers-Danlos Syndrome, and has not fufilled their end of the bargain in my insurance contract. Because of this, I am having to appeal and appeal and appeal every claim that they refuse to pay. Instead of getting upset and heated, I am trying a different approach: kindness and education. 

This is step one in what I know will be a LONG and tedious process. I guess I'm sharing in hopes that YOU may find solace that your not alone in the appeals, that insurance companies may actually treat the insured like humans, and that you can take my letter and write your own from it.

To Whom It May Concern at Humana Healthcare, 

My name is Meghan Hill, and I am a 30 year old female who has been diagnosed with a condition called Ehlers-Danlos Syndromes. hEDS is a collection of hereditary syndromes affecting connective tissue. In EDS, a basic building block of the body- collagen- is improperly formed, causing problems throughout the body. Despite this fundamental defect in structure, people with EDS usually appear to be normal and healthy. Each Type of EDS has a large collection of symptoms which vary widely from mild to severely disabling, and is sometimes fatal. I was diagnosed with Ehlers-Danlos Syndromes Type 3 at The Mayo Clinic in Rochester, MN three and a half years ago. Since then, I have been trying to get adequate care for my symptoms without any help. 

EDS is multi systemic. The faulty collagen structure leads to fragile tissue and body-wide dysfunction. Possible symptoms include but are not limited to:

*Musculoskeletal System: Unstable joints, full and partial dislocations can cause sprains, tendionpathies, muscle tears, trapped and stretched nerves, and acute and chronic pain. 

• Cardiac/Autonomic Nervous System (ANS): Problems regulating heart rate , rhythm, or blood pressure; lightheadedness, fainting upon standing. Symptoms may resemble anxiety. 

• Digestive System: GERD, gastroparesis, IBS.

• Central Nervous System: Headache, dysautonomia. Can be affected by instability in neck, skull/spine juncture. 

• Other: fatigue, pain, sleep dysfunction, pelvic organ prolapse, hernias, fragile skin, slow healing, easy brushing, poor local anesthetic effect. sometimes blood vellsel or hollow organ rupture. 

EDS is highly under-recognized. hEDS is “ likely the most common, though the least recognized, heritable connective tissue disorder.” - Dr. Marco Castori

Experts estimate that EDS affects as many as 1 in 100 people- more common than multiple sclerosis and Down Syndrome. Most people with EDS suffer for decades before receiving the correct diagnosis. EDS may affect 1-5% of the general population and only 5% of the EDS cases are recognized, especially in the United States. ( Dr. Brad Tinkle). The most common form of EDS does not have a characteristic physical appearance, but the clinical picture is often easily recognized by those healthcare experts who are familiar with Ehlers-Danlos Syndromes. 

I would like to assume that the medical professionals at Humana may not be fully aware of what Ehlers-Danlos Syndromes are and how they effect people who have inherited the faulty collagen structure. I would also like to assume that Humana is well aware that I have been diagnosed with EDS before my plan started with them, making my Ehlers-Danlos Syndrome a pre existing condition. According to the Discrimination act, Humana is “ unable to discriminate on the basis of race, color, national orgin, age, DISABILITY or sex. Humana INC. and its subsidiaries do not exclude people or treat them differently because of race, color, national orgin, age, DISABILITY or sex.” I am so glad you are kind enough to send that gentle reminder every time I get billed for my hospital care for my genetic connective tissue syndrome, Ehlers-Danlos. 

Since I was hospitalized against my will at New York City Presbyterian, after being admitted to the emergency room for symptoms stated above in my description of Ehlers-Danlos Syndrome, and was determined to be hospitalized due to a “flare up” of my Ehlers-Danlos Syndromes, I was told that Humana would be happy to cover my care within the Psychiatric department of New York City Pres. The bill I am receiving tells me other-wise, and I would like to appeal this claim. 

Please recognize that I am taking measures to hire legal council and settle this claim with your  insurance company as discrimination and the un-insurance of care for pre-existing conditions. Please take the time to carefully study my doctors notes, my files, and the complexity of Ehlers-Danlos Syndrome and re examine your refusal to pay. 

I appreciate your time and the service you offer to so many, 

Meghan Hill 

What Is Habitual Design?

Habitual Design is a phrase that has been repeating it's self over and over again in my head. What is it that I do? I am not an interior decorator, instead I come into every home I fashion hoping to make the habitat ideal for the people who inhabit the space. I am not a decorator or a organizer.. I'm more of a habitual designer who serves as a coach for your interior spaces. 

Habitual Design is about using what you already own, and making the most ofyour space. Habitual Design is taking your physical needs into consideration as we build the foundation of the spaces inyour home. It is about saving money, cutting out the excess and focusing on what is important. It is trusting your intuition and setting purpose for the rooms in your home.

The process isn't always easy, designing a home that meets your needs, but it is always fun and always rewarding. Keep visiting this space for continued tips and tricks on how you can easily design your home space yourself! 

A New Introduction on Instagram