Ehlers Danlos Syndrome Empowered Photographs
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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
Upwards and Onward to New York City
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It has been a full year since i first visited New York City. Growth and change, beauty and grace along with heartache and pain have painted the landscape of the past 365 days of my life. I was agreeing with my whole heart to venture back into the city that so rocked me merely a year ago, and felt a strange kind of peace as I packed my bag. I was asked to use my camera to capture my little cousin’s proposal to his boyfriend on stage after The Lion King. Memories of our childhood games of Nala, Simba, timone and pumba flooded my consciousness as I soared over the low country into the city that keeps launching me into the future.
Read Moreeds daily Tuesday May, 16th
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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: Monday May 8th, 2017
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EVENING EVALUATION:
1. WHAT TIME IS IT? 8:31 pm
2. CURRENT LOCATION: savannah
3. CURRENT TEMPERATURE: 75
4. DID I EAT ANYTHING DIFFERENT/NOTABLE? no, but i have been thinnking about the bullet proof diet (i did it last summer) again and am wondering if i should look into it again. is it histamine?
5. OVERALL PAIN LEVEL TODAY (ON 1-10 SCALE SYSTEM): 7
6. WHERE DID I EXPERIENCE THE MOST PAIN/DISCOMFORT TODAY? lower back
7. ENERGY LEVEL: not too bad!
8. DID ANYTHING MAKE MY ENERGY AND PAIN LEVELS BETTER OR WORSE? I did fascia blasting today, and i also took the dogs on a walk/run on my segway
9. EMOTIONAL STATE TODAY: good, just super tired. my parents were here this weekend which was great! but it also was very exhausting. hoping to go to the beach tomorrow!
10. HOW DID I LOVE MYSELF TODAY? i let myself have fun today
11. DID I USE MY CANE, WALKER, SEGWAY TODAY? segway, but that was more of a means for me to be athletic and get the dog's energy out
12. DID I PARK IN HANDICAPPED PARKING TODAY? didn't drive
13. DID I WORK TODAY? yes, lots of e mails and communication & background work. I'm about to start editing tonight as i watch 'Bessie"
14. MUSIC LISTENED TO TODAY: Hiss Golden Messanger
15. DID I ASK FOR HELP TODAY? yes! i asked my mom to make me breakfast and my dad to put together a garden cart for me :)
16. anything else worth notating about the day, overall? lots of pain, needing to rest for a good several days for this weekends wedding.
20. PLEASE PROVIDE ANY PHOTOS TO DOCUMENT BODY CONDITION/EMOTIONAL HEALTH/ACTIVITIES COMPLETED FOR DAY: if I can get one my mom took today I'll post it later.
EDS daily: Friday, May 5th 2017
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MORNING EVALUATION: wednesday april 26th, 2017
TODAY'S DATE: may 5, 2017
CURRENT TIME: 11:17 am!
CURRENT LOCATION: savannah, ga
CURRENT TEMPERATURE: 80
BLOOD PRESSURE:
TIME I WENT TO BED: 3 AM
TIME I GOT OUT OF BED: in bed right now typing this
TOTAL HOURS SLEPT: 8 hours
HOW DID I SLEEP? I was so tired, yesterday was SO LONG, that I slept great. I wish I was still asleep!
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 | gabapentin 5 mg
WHAT PART OF MY BODY HURTS THIS MORNING ? everywhere. feel like i've been hit by a truck. lower back and right shoulder hurt a lot off quick evaluation
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? 7
USING THE SAME SCALE AS ABOVE, WHAT WOULD YOU RATE YOUR OVERALL ENERGY LEVEL TODAY? DO ANY SPECIFIC PARTS OF MY BODY FEEL FATIGUED? WHAT DOES THAT FEEL LIKE? 4? my brain seems to be working. we will see how it shapes out later today (and i'll write about it.. obviously not used to this routine yet
DO I HAVE A HEADACHE? yes
HOW IS MY THOUGHT PROCESSING THIS MORNING? decent.. much much better than last night
DO MY LEGS WORK TODAY? YES!!!
DO I NEED ASSISTANCE TO WALK THIS MORNING? this morning, no :)
ANYTHING ELSE WORTH NOTING? spent the day mostly in the car yesterday.. also packing up. it definitely wasn't a day of rest, but my parents are coming into town today and i'm hoping to convince them we should go to the beach!
EVENING EVALUATION:
1. WHAT TIME IS IT? went to bed at 10:00
2. CURRENT LOCATION: savannah, georgia
3. CURRENT TEMPERATURE: thyroid 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
4. DID I EAT ANYTHING DIFFERENT/NOTABLE? i ate out at zunzis and it was great! didn't get sick at ll
5. OVERALL PAIN LEVEL TODAY (ON 1-10 SCALE SYSTEM):9.5
6. WHERE DID I EXPERIENCE THE MOST PAIN/DISCOMFORT TODAY? today was BAD BAD. everything hurt, it was hard to have multiple conversations, even on the segway it was hard to walk. i had to excuse myself from what we were doing and go to bed at 5pm
7. ENERGY LEVEL: 9 LOW
8. DID ANYTHING MAKE MY ENERGY AND PAIN LEVELS BETTER OR WORSE? I woke up and cleaned my house, and my parents came into town and i had a really hard time having conversations and even holding myself up. keeping my eyes open was hard too. i think it was just too much stimulation for one day.. especially a bad day
9. EMOTIONAL STATE TODAY: honestly, i didn't even have enough bandwidth TO be emotional
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? WHY? YES
13. DID I WORK TODAY? no
14. MUSIC LISTENED TO TODAY: marvin gay on record
15. DID I ASK FOR HELP TODAY? yes
16. HOW DID I LOVE SOMEONE TODAY?
17. WHAT MADE ME SMILE TODAY? ?
18. WHAT MADE ME CRY TODAY? ?
19. WHAT MADE ME LAUGH TODAY? ?
20. PLEASE PROVIDE ANY PHOTOS TO DOCUMENT BODY CONDITION/EMOTIONAL HEALTH/ACTIVITIES COMPLETED FOR DAY: n/a
EDS Daily: April 26-May 3rd
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initially, i had planned to publish these evaluations once a week. However, I am having a hard time not confusing dates and copy/pasting the wrong things.. so, for my sake, I'm going to need to publish these daily. I will try to find a way to limit how often they appear in subscriber inboxes!
the following journals range from April 26-April 29th
MORNING EVALUATION: wednesday april 26th, 2017
TODAY'S DATE: april 26, 2017
CURRENT TIME: 11:32 am
CURRENT LOCATION: carrboro, north carolina
CURRENT TEMPERATURE: 71
BLOOD PRESSURE:
TIME I WENT TO BED: 1 am
TIME I GOT OUT OF BED: 10:20 am
TOTAL HOURS SLEPT: 9 hours
HOW DID I SLEEP? great! the herb brownie i had before bed + two muscle relaxors (5 mg each) really helped do the trick!
WHAT MEDICATIONS & SUPPLEMENTS DID I TAKE THIS MORNING? armour 60mg | cymbalta (generic) 60mg | gabapentin (generic) 5mg |
WHAT PART OF MY BODY HURTS THIS MORNING ? lower back especially left side | legs, particularly from the knee down to the feet | left shoulder | neck below a1 vertebrae | hands, especially particular fingers feel sprained from Saturday's wedding |
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? 7.5 | from my feet to my knees i have burning pain, numbing pain (like ants crawling up and down legs) and joint pain in my left knee (medial meniscus) | lower back pain is sharp and continuous and radiates down left leg. lower back is also sore and is made worse by moving | pain in neck is stiff, radiating down from my left jaw to my left pinkie is lightning pain | hands are sore like sprained ankles with pain in arms that mimics leg pain | neck feels like it needs to be popped | head hurts above eyes
USING THE SAME SCALE AS ABOVE, WHAT WOULD YOU RATE YOUR OVERALL ENERGY LEVEL TODAY? DO ANY SPECIFIC PARTS OF MY BODY FEEL FATIGUED? WHAT DOES THAT FEEL LIKE? 7, which is low. My brain is working better than it has the past several days, so cogniatively I am sharper than I have been, but my body is slowing down my processing and my limbs feel like they have cement at the end of my feet and hands.
DO I HAVE A HEADACHE? yes, but it is not a migraine.. just soreness in front of head above (and behind) eyes
HOW IS MY THOUGHT PROCESSING THIS MORNING? slow, but much faster than yesterday. the pain is overwhelming my processing today
DO MY LEGS WORK TODAY? ehhhhhhhh. not really. but they ARE able to hold me up and move if I make them.
DO I NEED ASSISTANCE TO WALK THIS MORNING? yes, using the segway
ANYTHING ELSE WORTH NOTING? i fell, as overall, i'm recovering a little faster with this wedding than i did lauren and matt's. day three seems to be the day my cognative ability comes almost fully back, but my overall pain increases.. becomes much louder
EVENING EVALUATION:
WHAT TIME IS IT? 10:17 pm
CURRENT LOCATION: carrboro, north carolina
CURRENT TEMPERATURE: 68
MEDICATIONS TAKEN TODAY:
DID I EAT ANYTHING DIFFERENT/NOTABLE? no, but i didn't have a proper lunch today
OVERALL PAIN LEVEL TODAY (ON 1-10 SCALE SYSTEM): ranging from 5-7
WHERE DID I EXPERIENCE THE MOST PAIN/DISCOMFORT TODAY? i had acute pain in my chest and lower left back.. continual pain in feet and legs today, made worse by long periods of standing
ENERGY LEVEL: 4
DID ANYTHING MAKE MY ENERGY AND PAIN LEVELS BETTER OR WORSE? I think the magnesium helps a bit with energy. i also drank coffee this morning
EMOTIONAL STATE TODAY: good! much better than the previous day
HOW DID I LOVE MYSELF TODAY? i took the time to make this questionnaire AND i took my segway (for the first time in public) and myself out to the farmers market
WHAT DID I DO TODAY (DOCTORS APPOINTMENTS, PHYSICAL ACTIVITY, INTERACTIONS OF NOTE, WORK OF NOTE, MOBILITY ISSUES OF NOTE): I wrote, responded to e mails for photo business, edited photos, went to farmers market and aldi (with segway), and walked on properties
DID I USE MY CANE, WALKER, SEGWAY TODAY? segway
DID I PARK IN HANDICAPPED PARKING TODAY? WHY? no, because I had my segway
DID I WORK TODAY? yes, maybe 3-4 hours?
MUSIC LISTENED TO TODAY: joseph on vinyl
DID I ASK FOR HELP TODAY? yes, transporting my segway and asking for breakfast
HOW DID I LOVE SOMEONE TODAY? i am not sure i was as outwardly focused as I would have like to have been today, but i think i love others when i take the time to care for myself.. so maybe i did that today?
WHAT MADE ME SMILE TODAY? driving through the countryside of north carolina
WHAT MADE ME CRY TODAY? nothing!
WHAT MADE ME LAUGH TODAY? the people i was around
PLEASE PROVIDE ANY PHOTOS TO DOCUMENT BODY CONDITION/EMOTIONAL HEALTH/ACTIVITIES COMPLETED FOR DAY: n/a ;)
MORNING EVALUATION: thursday, april 27th, 2017
TODAY'S DATE: april 27, 2017
CURRENT TIME: 1:25pm
CURRENT LOCATION: carrboro, north carolina
CURRENT TEMPERATURE: 81
BLOOD PRESSURE:
TIME I WENT TO BED: 9:30 pm
TIME I GOT OUT OF BED: 9:25 am
TOTAL HOURS SLEPT: 11 hours
HOW DID I SLEEP? great! I've been sleeping a lot better with the muscle relaxers as well as brownie :)
WHAT MEDICATIONS & SUPPLEMENTS DID I TAKE THIS MORNING? armour 60mg | cymbalta (generic) 60mg | gabapentin (generic) 5mg |
WHAT PART OF MY BODY HURTS THIS MORNING ? lower back especially left side | legs, particularly from the knee down to the feet | left shoulder | neck below a1 vertebrae | hands, especially particular fingers feel sprained from Saturday's wedding | .. same as yesterday except pain today is more a sore joint type of pain (at least right now)
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? 7.5 | I took a high dose of medicinal herb this morning, so my pain has slowed down (and it's also why i'm just now getting to this even though I woke up earlier). Resting and working from the couch toay
USING THE SAME SCALE AS ABOVE, WHAT WOULD YOU RATE YOUR OVERALL ENERGY LEVEL TODAY? DO ANY SPECIFIC PARTS OF MY BODY FEEL FATIGUED? WHAT DOES THAT FEEL LIKE? 5, which is higher than yesterday. my neck is tired from holding up my head, legs are VERY tired and exhausted after walking from couch to bathroom (an example)
DO I HAVE A HEADACHE? yes, but it is more a spring pressure headache
HOW IS MY THOUGHT PROCESSING THIS MORNING? slow, but much faster than yesterday. I'm working!
DO MY LEGS WORK TODAY? they aren't as loud as yesterday, so I started walking this morning, over estimating my ability to do labor today. Using the segway around the house for the reminder of the day
DO I NEED ASSISTANCE TO WALK THIS MORNING? no-ish
ANYTHING ELSE WORTH NOTING? overall a soreness is setting in from the wedding on Saturday.. sore joints and bruises appearing more, especially where I wore my braces. Overall, any physical exertion makes me very tired today.
EVENING EVALUATION:
WHAT TIME IS IT? 1:08 pm on Friday the 28th.. (lets be honest, I fell asleep last night because i was feeling poorly, and didn't fill this out. I'll be typing as if i did fill it out last night)
CURRENT LOCATION: carrboro, north carolina
CURRENT TEMPERATURE: thyroid 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
DID I EAT ANYTHING DIFFERENT/NOTABLE? nope. gluten free as always. have started eating yogurt again and am doing parfaits with gf granola from aldi and fruit. YUM
OVERALL PAIN LEVEL TODAY (ON 1-10 SCALE SYSTEM): 6
WHERE DID I EXPERIENCE THE MOST PAIN/DISCOMFORT TODAY? My mind was working a lot better today, so I thought I could do a lot more than I should have. I organized a kitchen throughout the day... standing quickly became hard because of blood pooling in my legs below my knees. Legs felt swollen and throbbing with pain and knees would swell too. It felt like water was sloshing around inside my skin
ENERGY LEVEL: 3 (decent!)
DID ANYTHING MAKE MY ENERGY AND PAIN LEVELS BETTER OR WORSE? i had to exert a lot of energy cleaning the kitchen, so I would do it in stages of 15 minutes. I also made lunch today, and by the end of the 30 min prep time I could no longer stand and cognitive processing became extremely hard.
EMOTIONAL STATE TODAY: good! organizing the kitchen gave me a very focused escape from the pain. I think I am realizing that is why I like to organize and decorate? It's something I can do that is in front of me that requires total focus and I can always see the reward of my labor when a room is decorated and organized. It's almost like meditation?
HOW DID I LOVE MYSELF TODAY? I made myself some good food and went to bed early
WHAT DID I DO TODAY (DOCTORS APPOINTMENTS, PHYSICAL ACTIVITY, INTERACTIONS OF NOTE, WORK OF NOTE, MOBILITY ISSUES OF NOTE): organized a kitchen (a lot of work), edited a family session and delivered it to clients. responded to e mails, spent time with Dan and Eric-Scott.
DID I USE MY CANE, WALKER, SEGWAY TODAY? segway
DID I PARK IN HANDICAPPED PARKING TODAY? WHY? no, i didn't leave the house
DID I WORK TODAY? yes, maybe 7 hours?
MUSIC LISTENED TO TODAY: lana del ray
DID I ASK FOR HELP TODAY? no
HOW DID I LOVE SOMEONE TODAY? I cleaned and organized Eric-Scott's kitchen! I also did the dishes even though I was very tired :)
WHAT MADE ME SMILE TODAY? Nova- Luna and Waverly. Karma and Nova-Luna learning how to play together
WHAT MADE ME CRY TODAY? nothing!
WHAT MADE ME LAUGH TODAY? the people i was around
PLEASE PROVIDE ANY PHOTOS TO DOCUMENT BODY CONDITION/EMOTIONAL HEALTH/ACTIVITIES COMPLETED FOR DAY: i tried to take a photo of the purplish and red color of my legs, but it didn't show up on camera.
MORNING EVALUATION: friday april 28th, 2017
TODAY'S DATE: april 28, 2017
CURRENT TIME: 1:33 Pm
CURRENT LOCATION: carrboro, north carolina
CURRENT TEMPERATURE: 81
BLOOD PRESSURE:
TIME I WENT TO BED: 10:30 pm (was awake last night from 3am-5:30am )
TIME I GOT OUT OF BED: 11:25 am
TOTAL HOURS SLEPT: 11 hours
HOW DID I SLEEP? great! minus being up from 3-5 :)
WHAT MEDICATIONS & SUPPLEMENTS DID I TAKE THIS MORNING? 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
WHAT PART OF MY BODY HURTS THIS MORNING ? whole body is sore, especially my lower left back. legs aren't swollen like they were last night, so the sleep may have helped that?
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? I woke up with a migraine, so that was pretty overwhelmign in the morning. As of right now (after doing fascia blasting and shower) I'm about a 5
USING THE SAME SCALE AS ABOVE, WHAT WOULD YOU RATE YOUR OVERALL ENERGY LEVEL TODAY? DO ANY SPECIFIC PARTS OF MY BODY FEEL FATIGUED? WHAT DOES THAT FEEL LIKE? 7.. pretty tired and body is slowly moving around. I could not raise my arms becuase of rib pain this morning. trying to stay on the couch or in a resting position as I work today
DO I HAVE A HEADACHE? yes, feels a bit like the headache i had after my spinal tap
HOW IS MY THOUGHT PROCESSING THIS MORNING? pretty good actually!
DO MY LEGS WORK TODAY? yes, but the ant pain is starting to creep in.. trying to keep legs elevated today so they blood pooling doesn't set in like yesterday
DO I NEED ASSISTANCE TO WALK THIS MORNING? no-ish
ANYTHING ELSE WORTH NOTING? I want to note that I did a full 45 minute fascia blasting session this morning. I have been fascia blasting since January, started doing a session a day for several weeks, maybe a month? Now I will do mini-sessions in the shower every other day and then a long session once a week. Still unsure if it is helping with pain, but I do know it is helping get rid of cellulite (which is supposedly fascia around my connective tissue).. so the thought is, if I it helps fascia, and bad fascia is part of my problem with my connective tissue, then maybe this could help Ehlers-Danlos specifically? I am a lot more confident in my body these days because of it.
EVENING EVALUATION:
WHAT TIME IS IT? 1:08 pm on Friday the 28th.. (lets be honest, I fell asleep last night because i was feeling poorly, and didn't fill this out. I'll be typing as if i did fill it out last night)
CURRENT LOCATION: carrboro, north carolina
CURRENT TEMPERATURE: thyroid 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
DID I EAT ANYTHING DIFFERENT/NOTABLE? nope. gluten free as always. have started eating yogurt again and am doing parfaits with gf granola from aldi and fruit. YUM
OVERALL PAIN LEVEL TODAY (ON 1-10 SCALE SYSTEM): 6
WHERE DID I EXPERIENCE THE MOST PAIN/DISCOMFORT TODAY? My mind was working a lot better today, so I thought I could do a lot more than I should have. I organized a kitchen throughout the day... standing quickly became hard because of blood pooling in my legs below my knees. Legs felt swollen and throbbing with pain and knees would swell too. It felt like water was sloshing around inside my skin
ENERGY LEVEL: 3 (decent!)
DID ANYTHING MAKE MY ENERGY AND PAIN LEVELS BETTER OR WORSE? i had to exert a lot of energy cleaning the kitchen, so I would do it in stages of 15 minutes. I also made lunch today, and by the end of the 30 min prep time I could no longer stand and cognitive processing became extremely hard.
EMOTIONAL STATE TODAY: good! organizing the kitchen gave me a very focused escape from the pain. I think I am realizing that is why I like to organize and decorate? It's something I can do that is in front of me that requires total focus and I can always see the reward of my labor when a room is decorated and organized. It's almost like meditation?
HOW DID I LOVE MYSELF TODAY? I made myself some good food and went to bed early
WHAT DID I DO TODAY (DOCTORS APPOINTMENTS, PHYSICAL ACTIVITY, INTERACTIONS OF NOTE, WORK OF NOTE, MOBILITY ISSUES OF NOTE): organized a kitchen (a lot of work), edited a family session and delivered it to clients. responded to e mails, spent time with Dan and Eric-Scott.
DID I USE MY CANE, WALKER, SEGWAY TODAY? segway
DID I PARK IN HANDICAPPED PARKING TODAY? WHY? no, i didn't leave the house
DID I WORK TODAY? yes, maybe 7 hours?
MUSIC LISTENED TO TODAY: lana del ray
DID I ASK FOR HELP TODAY? no
HOW DID I LOVE SOMEONE TODAY? I cleaned and organized Eric-Scott's kitchen! I also did the dishes even though I was very tired :)
WHAT MADE ME SMILE TODAY? Nova- Luna and Waverly. Karma and Nova-Luna learning how to play together
WHAT MADE ME CRY TODAY? nothing!
WHAT MADE ME LAUGH TODAY? the people i was around
PLEASE PROVIDE ANY PHOTOS TO DOCUMENT BODY CONDITION/EMOTIONAL HEALTH/ACTIVITIES COMPLETED FOR DAY: i tried to take a photo of the purplish and red color of my legs, but it didn't show up on camera.
EVENING EVALUATION:
1. WHAT TIME IS IT? went to bed at 10:45
2. CURRENT LOCATION: carrboro, north carolina
3. CURRENT TEMPERATURE: thyroid 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
4. DID I EAT ANYTHING DIFFERENT/NOTABLE? no
5. OVERALL PAIN LEVEL TODAY (ON 1-10 SCALE SYSTEM): 8
6. WHERE DID I EXPERIENCE THE MOST PAIN/DISCOMFORT TODAY? I was in pain already, but then I fell of the segway and landed face down. The jolt was enough to really rattle my bones. I tried to keep the pain from becoming too overwhelming by using medicinal herbs.
7. ENERGY LEVEL: 6 (low)
8. DID ANYTHING MAKE MY ENERGY AND PAIN LEVELS BETTER OR WORSE? falling off the segway def. made it worse
9. EMOTIONAL STATE TODAY:good! got a lot of good work done (check out www.meghillphoto.com
10. HOW DID I LOVE MYSELF TODAY? I gave myself grace when it comes to how long it's taking me to edit weddings from April/March
11. DID I USE MY CANE, WALKER, SEGWAY TODAY? segway
12. DID I PARK IN HANDICAPPED PARKING TODAY? WHY? no, i didn't leave the house
13. DID I WORK TODAY? yes, maybe 7 hours?
14. MUSIC LISTENED TO TODAY: the president's 2016 summer spotify playlist
15. DID I ASK FOR HELP TODAY? no
16. HOW DID I LOVE SOMEONE TODAY? I made Eric-Scott dinner, edited some photos for a friend for her birthday, and sent out a few kind e mails!
17. WHAT MADE ME SMILE TODAY? so. many. things!
18. WHAT MADE ME CRY TODAY? nothing!
19. WHAT MADE ME LAUGH TODAY? my animals
20. PLEASE PROVIDE ANY PHOTOS TO DOCUMENT BODY CONDITION/EMOTIONAL HEALTH/ACTIVITIES COMPLETED FOR DAY: n/a
MORNING EVALUATION: saturday april 29th, 2017
1. TODAY'S DATE: april 29, 2017
2. CURRENT TIME: 12:05 Pm
3. CURRENT LOCATION: carrboro, north carolina
4. CURRENT TEMPERATURE: 79
5. BLOOD PRESSURE:
6. TIME I WENT TO BED: 10:30 pm
7. TIME I GOT OUT OF BED: 10:30 am
8. TOTAL HOURS SLEPT: 12 hours
9. HOW DID I SLEEP? GREAT!! again, the brownie does the trick :)
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 | cannot find my muscle relaxor (5mg)
11. WHAT PART OF MY BODY HURTS THIS MORNING ? mainly legs, ribs and back. everything is pretty sore today. slow moving
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? no migraine this morning, which is great! pain level is about a 5-6.. gets worse with moving today.
13. USING THE SAME SCALE AS ABOVE, WHAT WOULD YOU RATE YOUR OVERALL ENERGY LEVEL TODAY? DO ANY SPECIFIC PARTS OF MY BODY FEEL FATIGUED? WHAT DOES THAT FEEL LIKE? .. about a 5
14. DO I HAVE A HEADACHE? no
15. HOW IS MY THOUGHT PROCESSING THIS MORNING? slow16. DO MY LEGS WORK TODAY? yes,they just hurt a lot from yesterday's fall.. but they aren't limp yet
17. DO I NEED ASSISTANCE TO WALK THIS MORNING? no-ish
18. ANYTHING ELSE WORTH NOTING?
My 30th April
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photo taken and styled by my super talented pal, allie lehman.
I'm not really sure how to start writing about the epic adventure that has been the past month of my life. The last month of my 29th year and the first month of my 30th year.. April.
Birthdays have always been special to me for some reason.. not MY birthday (or even that I'm good at remembering other's birthdays), but THE birthday. YOUR birthday. It's a day to celebrate YOU. I love celebrating my favorite humans on their days of birth. I used to think that everyone was as altruistic and excited as I was to celebrate MY birthday in return. Not true.
Over the past 7 years, I've come to expect to not expect. Just another day. It doesn't need to warrant recognition, and expectations of frolicking in the flowers on my April birthday quickly dissipated when I came to realize that not EVERYONE loved birthdays as much as I do. Go figure.
Despite this rant, I have secretly still held a love for birthdays in my heart... and this year's tricentennial birthday didn't disappoint.
Lets start at the beginning, shall we?
On April 7th (a warm friday evening in savannah) I took this good-lookin' snap in my kitchen while I was washing dishes:
Things to note:
- i hadn't been able to walk well in two weeks
- my amazing landlord/neighbor brought me this tight-ass walker from her dad's house
- it was the eve before lauren and matt's wedding at savannah station with sincerely yours events
April 8th came around, and Lauren was getting married and I was shooting her wedding. My second shooter , Eric-Scott , helped me gather up our gear and brace me (quite literally) for the day ahead. I braced my left knee (I'm developing a new meniscus tear ) , my right ankle that I always roll and my wrist that holds my camera.. in addition to my silver ring splints for my hands.
The first photo was taken around 2pm by the sweetest Emily of Sincerely Yours Events here in Savannah, and the second was taken around 6:30 pm when cognitive issues really started to get the best of me. Family photos didn't go as smoothly as they normally do because I couldn't read/wrangle/pose/shoot as well as I normally can. An hour after the family photos, I sat down to take photos of the first dance and my eyes started to fail me. I couldn't focus on anything, my legs wouldn't hold me up and I had this visceral feeling of fear overcome me. I'd been communicating with my body all day (see previous post), and in that moment my body said "you have got to get out of here now. If you keep pushing on, your going to really hurt me and I need HELP. NOW"
Sweet Emily dropped everything when I limped over to her and told her I needed to find a way to get to the Emergency Room. Thirty minutes later, I was admitting to the ER and Keli came to let Emily get back to the wedding where Eric-Scott was shooting the remaining reception.
While in the Emergency Room, we had a hard time convincing the on-duty physician that I only wanted an IV infusion and no tests or pain medication. Somewhere I had read that saline solution helps people with EDS, so my goal was to get that inside my body to give it the boost it needed to get to Baltimore the following week to see Dr. Francomono at The Harvey Institute of Human Genetics.
The eve before my 30th birthday, I was able to get a saline drip that helped my body get over the hump to a better "recovery" from that night's wedding. Unsure of the "why" behind it's magic properties, I didn't question it and remained thankful that it helped me hold my head up and stand up straight. I'd learn more about saline in Baltimore the following week.
The sun rose on April 9th, and so did I. My thirtieth birthday started with breakfast in bed of the most amazing gluten free french toast delivered by The Five Spot , and the best mimosas I've had in a lonnggg time.
I looked over at my phone and saw the sweetest birthday present delivered to me from my mom and dad. They made a "happy Birthday" sign and took it with them to church. They were so kind and thoughtful and surprised me with a LOT of people who helped raise me holding my happy birthday sign. (you will be impressed by my mom's photo skills) Needless to say, the tears flooded my empty french toast plate rather quickly.
Hopeful to make the best day I could out of the crappy night before and celebrate my birthday with a bang, I loaded up myself and my walker in my element and headed to the beach with Eric-Scott.
We tried THREE different boardwalks on Tybee Island. All three times I was unable to make it past the pavement in the parking lot. My walker didn't push on the sand, and my legs wouldn't carry my weight without the extra support the walker provided. Thirty and unable to make it 10 feet to the ocean. Defeating, yes. Did I let it ruin my day? no.
My 30th birthday was filled with sunshine, flowers, amazing food, wonderful company and I felt beyond loved by the people around me. Circumstances sucked, but I can honestly say that it was one of the best birthdays I'd ever had.
I felt celebrated the way I want to celebrate people on their birthdays. I received cards, gifs, texts, flowers, hugs, food.. and felt smothered in appreciation for the journeys I'd taken to get me to where I was on my thirtieth birthday. I kept repeating the words "this is the best day ever."
Stay tuned for several posts on presents I got for my birthday.. including presents I got myself during a stoned shopping spree. It's riveting.
Body Language 101
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other names for this post include:
why i talk to myself in public places
pep talks for my legs
rosetta stone for spoonies
where can i find a brochure that teaches me how to talk to my hands?
i promise i'm not crazy, but i talk to my dogs and my toes
I am trying to change the narrative I tell myself. It's 3.28 am on a Friday. I fell asleep at 6pm with the help of muscle relaxers and alcohol. If your a doctor, you can respond in the comments about how i'm not allowed to do that, but i promise i'm ok.
Yesterday was GOOD. A friend came over, I watched my animals play, I worked and fleshed out some big ideas, I had a great talk with my neighbor, and it was sunny and the air smelled fresh after the thunderstorm we had two nights ago. BUT, it was also a HARD day. Good and Hard can exist together, I've learned.
I've been trying to re-imagine and re-design my life / work so that I can do things that make me happy/ make money/ have a flexible schedule like I have now. Yesterday all of that felt impossible. Hell, walking to the fridge seemed impossible until my neighbor showed up with a tight wheeled walker for me. It was brought to my attention that I use a lot of the word "can't".
I can't shoot weddings much longer | i can't go to the grocery store | I can't shower today | I can't live by myself | I can't take the dogs on a walk | i can't drive to the pharmacy
I said all of those phrases yesterday, and I would guess I said them more than once. When it comes to everything else in life, I'm the eternal optimist/pep talker/nothing-will-stand-in-my-way-don't-you-ever-tell-me-i-can't-do-THAT.
I need to change the way I talk to myself. I've found myself giving my body pep talks (out loud and in public) lately without even realizing it. Most of the time it looks like this:
scenario: walking from car to almond milk in the grocery store on a bad day.
out loud pep talk: "come on meg, you've got this.. your almost there.. remember when you used to run 8-35's in middle school and you didn't think you could do that? this is so much easier! all you have to do is get milk. come on, you've got this! move legs! "
Given these pep talks aren't intentional or very well planned, they just kind of happen.. just imagine "The Little Engine That Could". So, how can I have pep talks that are planned? How can I talk to my body in a way she loves and in a way that will help me navigate my days?
this is sarah. she's one of my favorite people in the whole world. lucky enough, i met her because i shot her wedding!
When I visited my friend Sarah in Portland this winter, she was telling me about how she's started changing the way she operates when it comes to her body.. especially her body image. I told her to tell me what this looked like, and she told me the following:
sarah (while looking in a mirror) : hi tummy! thank you for digesting my food and letting me eat yummy things! hi face (that has a huge zit on it) , you are beautiful and i'm so glad i have you to smile and laugh and experience the world. hi legs! thank you for moving every day.. for holding me up and getting me to where I need to go! You rock!
Tonight, while I'm laying in bed with The Jade Squad and unable to sleep because of pain, I realize that I need to do this with my body EVERY. SINGLE. SECOND. of every single day. What would it look like if I had those conversations with myself and my body regularly?
meg: " good morning body! what do you need from me today?" (during this time I would take inventory of how each of my body parts are feeling).. " thank you for giving me a good night's sleep and for those crazy dreams. i'm thankful that i can open my eyes this morning, thank you for letting me feel the soft cuddles of my dogs and kitten, thank you for letting me eat a yummy breakfast and see the sunshine outside! I'm going to take the best care I can of you today, but I also need you to get me where I need to go..what's the best way to get there?
"thank you for letting me walk" | "thank you for letting me form words and sentences and for my imagination" | "thank you for not having your period anymore.. because that really sucked" (instead of being sad and angry that I had to have a hysterectomy) | "thank you for helping me understand what pain feels like, and for teaching me how to connect with other people because of that." | "your awesome! you have let me become a photographer and you've even helped me become good at that!"
I think you get the idea. I know I need to stop saying "can't", but I think it runs a lot deeper than that. I think I'll begin to stop saying "can't" when I allow myself to see ALL OF THE AMAZING THINGS my body lets me do. I need to stop focusing on what it's kept me from doing, and focus on THE LIFE IT LETS ME LIVE. That change has to happen within myself and within the framework of how I see myself.
I think this whole "turning can't into can" isn't about what we say to others, but more about what we say to ourselves. I've got to start being kinder and more gentle with myself. I want to love myself (all of me!) the way I love my friends.
And right now, I'm texting with a friend (at 4 am) who needs me. So, I'm off.
But I'll keep you updated on how this whole Body Language Rosetta Stone learning thing is going.
Ehlers Danlos Syndrome
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Two years ago I was finally diagnosed with a genetic disease that has been effecting me my entire life: Ehlers-Danlos Syndrome. From my first knee surgery in 7th grade, to my hysterectmony this past August, EDS has taken a toll on my body and my health.
Ehlers Danlos Syndrome is "s an inherited connective tissue disorder with different presentations that have been classified into several primary types. EDS is caused by a defect in the structure, production, or processing of collagen or proteins that interact with collagen, such as mutations in the COL5A or COL3A genes. (This is the collagen of granulated tissue, and is produced quickly by young fibroblasts before the tougher type I collagen is synthesized. Commonly associated with keloid formation. Reticular fiber. Also found in artery walls, skin, intestines and the uterus.--COL3A1). The collagen in connective tissue helps tissues resist deformation. Collagen is an important contributor to the physical strength of skin, joints, muscles, ligaments, blood vessels and visceral organs; abnormal collagen renders these structures more elastic. In some cases, the severity of themutation can be life-threatening.
As a visual individual, I have wanted to be able to show my friends and family exactly what Ehlers Danlos Syndrome looks like, but a lot of the sources that I found online were either grotesque, or very poor quality photos that I was embarrassed to show.
After several months of talking myself into starting this project, I found a creative friend (Chris West // A light Pro) to come alongside me and capture the first part of this project with me on Canon Beach in Oregon. His eye perfectly captured the beauty I wanted to show through these images.. creating something that is not only informational, but also shows that there can be beauty within brokeness. I am excited to start planning the next two parts of this personal project and having creative friends come alongside me to help with the imaging.
It is my hope and desire that these images can not only be a great resource for patients suffering with Ehlers-Danlos Syndrome, but it can be a visual representation of the disease for doctors, medical staff and the families and friends who support individuals who have Ehlers-Danlos Syndrome.
Ehlers Danlos Syndrome Resources
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After my diagnosis with Ehlers-Danlos Syndrome, I was so overwhelmed by the life-long chronic issue of all of my diseases that I couldn’t start reading or researching or really doing anything for it until the following year.
I was doing everything I could to somehow get my body back into functional order that I just didn’t have to space to take in anything else. If you are recently Diagnosed and you are reading this then you are light years ahead of where I was!
I don’t know how your brain works, but I AM AWFUL with scienc-y things. I have a friend who is a few years younger than I am whose WHOLE FAMILY has EDS, and shes is SO GOOD about keeping up on research, finding doctors that help her and understanding the science behind it all. ME? Not so much. I guess I say that to say I have no idea how your brain works, so I am going to send over the resources I have that have helped me, and other resources I know about that I don’t understand.
First off, I will say that the first thing you should do is see a Physical Therapist. They will equip you with certain (easy) exercises you should do DAILY to help build your core muscle strength. That really is the only way you can help your joints stay in place since our connective tissue is so loose! When you get a prescription from your doctor for a PT, you also need to get a prescription to see a O.T, specifically one who specializes in hands. Silver Ring Splints (www.silverringsplint.com) have changed my life. But you have to be fitted by an OT for these. Insurance will help pay for them and they will stabilize your hand joints.. which means no more pain in your fingers and radiating pain down your arm!! Do this ASAP. My doctor here doesn’t “believe I Have EDS, he just thinks I need to see a counselor” so he won’t write me a script to see an OT. But hopefully your doctor will be on board!
On the same lines as a PT, I recommend you start swimming (even water aerobics), maybe riding a stationary bike, and NOT EVER DOING YOGA!. I am going to start doing pilates soon (I hope!) and I’ll let you know how that goes. Even if it seems impossible, get in the water for 5 minutes a day. You’ll slowly work yourself up to being able to do a little more. BUT DON”T PUSH YOURSELF!!! If your legs start to go numb (like mine always do) STOP. With EDS you can definitely over-do it, so slowly (so slowly!!) build up your strength. It’s imperative to your health!
There’s a few good reads I recommend:
The Hypermobility Handbook (http://www.amazon.com/Hypermobility-Handbook--Management-Ehlers-Danlos-Syndrome/dp/098257715X/ref=sr_1_1?ie=UTF8&qid=1431790275&sr=8-1&keywords=hypermobility+handbook )
Happiness In A Storm: http://www.amazon.com/Happiness-Storm-Illness-Embracing-Survivor/dp/0393329054/ref=sr_1_1?s=books&ie=UTF8&qid=1431790324&sr=1-1&keywords=happiness+in+a+storm
Our Stories Of Strength:: (recognize the person on the front?!) http://www.amazon.com/Our-Stories-Strength-Ehlers-Danlos-Syndrome-ebook/dp/B00X8TG60I/ref=sr_1_1?s=books&ie=UTF8&qid=1431790360&sr=1-1&keywords=our+stories+of+strength
also, EDNF. org has some great articles and also does podcasts with doctors! (that I don’t understand! haha) :: http://www.ednf.org
For Pain. I HIGHLY recommend you seeing the fine people at ANY community acupuncture clinic. Community Acupuncture is affordable and can be found in almost any major city. Just google "Your City Community Acupuncture Clinic". Go as often as you can. Acupuncture has literally saved my life and I can’t recommend it enough for pain management.
I honestly try not to dive too much into all of it because I can’t allow myself to go down the rabbit hole (I’m sure you understand that feeling!). I only choose to read things that are helpful and only choose to fight my battles that I NEED to fight. If I went to the doctor for every little ache and pain my life would be filled with doctors appointments, and I just can’t allow that to happen!
Lastly, I have a EDS/Fibro/Chronic Pain pinterest board that I pin helpful articles, devices, and funny things to that help me cope, help me learn and keep me researching. If you want to dive deeper, I recommend you visiting! :: https://www.pinterest.com/mnewsomphoto/edsfibromyalgiaendochronic-pain/
Days 1-15 Of my 100 Day Project
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I've been super inspired recently by @alliepal (who took 100 days to paint) and @fridamkahlo (whose work was inspired by her life in chronic pain. )
If you don't know, I have a rare genetic disease called "Ehlers Danlos Syndrome". EDS is "EDS is caused by a defect in the structure, production, or processing of collagen or proteins that interact with collagen. The collagen in connective tissue helps tissues resist deformation." You can learn more about it HERE.
My job photographing people is the best job I could ask for, and I have been wanting to push myself creatively to bring new perspective to the photographs I take for my amazing clients. I also hope to bring more awareness to "invisible illnesses".. So, I'm taking on the 100 day (ish.. I'm giving myself some grace for days I may not be able to function well) challenge and am creating work surrounding the theme of my life and daily experience with Ehlers-Danlos Syndrome.
I am going to be using my skill as a Photographer and expanding upon those photos with mixed media and different sewing techniques. I'm excited to share some of the behind-the scenes with you guys (and a bit of the "why" behind the influence of each piece) on my IG story, while sharing a photo of the daily work through instagram posts.
The first fifteen days of the project have been mentally and artistically challenging in ways I never expected.. but already so rewarding and fun.
I'd love for you to follow along on this journey !
Time To Rest : From The Archives
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Lately, I've been reading through Proverbs and Ecclesiastes.. and seem to continually migrate to Ecclesiastes 3. You know, the famous "Time for everything" passage. In that I have been thinking a lot about rest. About healing and Sabbath.
Around our home, we are very intentional about periods of rest. We try to unplug at least once a week (usually on Sunday when we are both home) and unwind without work or stressors or even cleaning up around the house.
But what does this look like when you are connected to your work (thank you i phone), and you feel like you need to be continually marketing your business or promoting things online? It means unplugging. Unplugging yourself from the constant demands you put on yourself, unplugging your mind from making to-do lists and tasks for yourself, and spending time just being.
I struggle with this daily.
The balance of rest and work. Being more intentional in my work and my home life. Being present in every situation.. mentally and physically.
Our society tells us we need to be constantly busy, constantly involved and connected with all things all at once. I kind of hate this. I know it is going against the way I was made to operate. Against the rhythm I was created for.
Friday night we left home around 5pm and scooted down to Fl. for a time of rest together. I intentionally turned my phone off during the days, and tried my hardest to let my mind rest from making lists and reminding myself of the things I needed to do when I got home.
We got home late last night feeling refreshed and renewed.. and asking ourselves how we could be more intentional with Sabbath in our daily routines. With David working and going to school and me working from home we feel like we are always meeting deadlines and are unable to totally unplug from it all.
I'll be home this week (I have SO many things to get done!) and then will be heading to Florida again the following week with my sister-in-law and my little nephew. I plan on being very intentional with my time there..trying to stay away from social media as much as I can, and unplugging from everything. Spending time in complete rest and Sabbath.
What does this look like for you?
Are there ways that you are intentional with rest in your lives?
