May 22, 2017

EDS Daily: Monday May 22nd, 2017

May 22, 2017/ Meghan Hill

ehlers-danlos-syndrome-daily-journal-meg-hill-photo

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

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.

May 16, 2017

eds daily Tuesday May, 16th

May 16, 2017/ Meghan Hill

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!

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.

May 13, 2017

hEDS Daily: Saturday May 13th, 2017

May 13, 2017/ Meghan Hill

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.

May 08, 2017

hEDS Daily: Monday May 8th, 2017

May 08, 2017/ Meghan Hill

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.

May 06, 2017

EDS daily: Friday, May 5th 2017

May 06, 2017/ Meghan Hill

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

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

April 29, 2017

EDS Daily: April 26-May 3rd

April 29, 2017/ Meghan Hill

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

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 :)

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?

April 26, 2017

EDS Daily : April 25, 2017

April 26, 2017/ Meghan Hill

In an attempt to better understand my body, I'm making the decision (and upon recommendation from my physician, Dr. Francomono) to do a quick journal daily of symptoms, changes, diet, etc. to try to understand the pattern of how my body is working and responding to things.

I've been wrestling with the form of media that I use for this daily practice, enjoying the feeling of pen to paper the best. I also have the knowledge of my past journaling experience, and know I won't stick to topic during those journaling sessions and will instead trail off on other ambient thoughts and ideas. Without considering my personal preferences, here are the forms of recording keeping I have been thinking of using for this project

a small writing journal
recording myself talking everyday
audio
video
journal on my computer
blogging daily on high five home space

After thinking through all the pros and cons of each modality, I decided I'd start it here. I'm pretending I have someone reading this so there's accountability, right? I am more apt to do something if I know someone will be counting on me.

Here are the guidelines I've outlined for myself:

journal AM and PM (when I'd normally be checking business e mail)
design questionnaire for myself and answer said questions daily.
share once a week with a cumulative post on this space, hoping that maybe my personal research/journey might be able to help cumulative research for Ehlers-Danlos Syndrome. Not only that, but most importantly help YOU who may be reading these things.

So, here we go! Tomorrow I'll start. Tonight I'll formulate my questions in reply to a lot that I learned this past week during my appointment at The Harvey Institute of Human Genetics.

Blog

MORNING EVALUATION: wednesday april 26th, 2017

EVENING EVALUATION:

MORNING EVALUATION: wednesday april 26th, 2017

EVENING EVALUATION:

MORNING EVALUATION: thursday, april 27th, 2017

EVENING EVALUATION:

MORNING EVALUATION: friday april 28th, 2017

EVENING EVALUATION:

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