EDS Daily: Monday May 22nd, 2017

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

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

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

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

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

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

14. DO I HAVE A HEADACHE?  yes 

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

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

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

18. ANYTHING ELSE WORTH NOTING? .. 

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

EDS Daily: April 26-May 3rd

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

  1. TODAY'S DATE: april 26, 2017

  2. CURRENT TIME: 11:32 am 

  3. CURRENT LOCATION: carrboro, north carolina 

  4. CURRENT TEMPERATURE: 71 

  5. BLOOD PRESSURE: 

  6. TIME I WENT TO BED: 1 am

  7. TIME I GOT OUT OF BED: 10:20 am

  8. TOTAL HOURS SLEPT: 9 hours

  9. HOW DID I SLEEP? great! the herb brownie i had before bed + two muscle relaxors (5 mg each) really helped do the trick!

  10. WHAT MEDICATIONS & SUPPLEMENTS DID I TAKE THIS MORNING? armour 60mg | cymbalta (generic) 60mg | gabapentin (generic) 5mg | 

  11. 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 |

  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? 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

  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? 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. 

  14. DO I HAVE A HEADACHE?  yes, but it is not a migraine.. just soreness in front of head above (and behind) eyes

  15. HOW IS MY THOUGHT PROCESSING THIS MORNING? slow, but much faster than yesterday. the pain is overwhelming my processing today

  16. DO MY LEGS WORK TODAY? ehhhhhhhh. not really. but they ARE able to hold me up and move if I make them. 

  17. DO I NEED ASSISTANCE TO WALK THIS MORNING? yes, using the segway

  18. 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:

  1. WHAT TIME IS IT? 10:17 pm

  2. CURRENT LOCATION: carrboro, north carolina 

  3. CURRENT TEMPERATURE: 68

  4. MEDICATIONS TAKEN TODAY: 

  5. DID I EAT ANYTHING DIFFERENT/NOTABLE? no, but i didn't have a proper lunch today

  6. OVERALL PAIN LEVEL TODAY (ON 1-10 SCALE SYSTEM): ranging from 5-7

  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

  8. ENERGY LEVEL: 4

  9. 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 

  10. EMOTIONAL STATE TODAY: good! much better than the previous day 

  11. 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 

  12. 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 

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

  14. DID I PARK IN HANDICAPPED PARKING TODAY? WHY? no, because I had my segway

  15. DID I WORK TODAY? yes, maybe 3-4 hours?

  16. MUSIC LISTENED TO TODAY: joseph on vinyl

  17. DID I ASK FOR HELP TODAY? yes, transporting my segway and asking for breakfast

  18. 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?

  19. WHAT MADE ME SMILE TODAY? driving through the countryside of north carolina 

  20. WHAT MADE ME CRY TODAY? nothing!

  21. WHAT MADE ME LAUGH TODAY? the people i was around 

  22. PLEASE PROVIDE ANY PHOTOS TO DOCUMENT BODY CONDITION/EMOTIONAL HEALTH/ACTIVITIES COMPLETED FOR DAY: n/a ;) 


MORNING EVALUATION: thursday, april 27th, 2017

  1. TODAY'S DATE: april 27, 2017

  2. CURRENT TIME: 1:25pm 

  3. CURRENT LOCATION: carrboro, north carolina 

  4. CURRENT TEMPERATURE: 81

  5. BLOOD PRESSURE: 

  6. TIME I WENT TO BED: 9:30 pm

  7. TIME I GOT OUT OF BED: 9:25 am

  8. TOTAL HOURS SLEPT: 11 hours

  9. HOW DID I SLEEP? great! I've been sleeping a lot better with the muscle relaxers as well as brownie :)  

  10. WHAT MEDICATIONS & SUPPLEMENTS DID I TAKE THIS MORNING? armour 60mg | cymbalta (generic) 60mg | gabapentin (generic) 5mg | 

  11. 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) 

  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? 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 

  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? 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)

  14. DO I HAVE A HEADACHE?  yes, but it is more a spring pressure headache

  15. HOW IS MY THOUGHT PROCESSING THIS MORNING? slow, but much faster than yesterday. I'm working!

  16. 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

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

  18. 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:

  1. 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) 

  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? nope. gluten free as always. have started eating yogurt again and am doing parfaits with gf granola from aldi and fruit. YUM

  5. OVERALL PAIN LEVEL TODAY (ON 1-10 SCALE SYSTEM): 6

  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 

  7. ENERGY LEVEL: 3 (decent!) 

  8. 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. 

  9. 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? 

  10. HOW DID I LOVE MYSELF TODAY? I made myself some good food and went to bed early 

  11. 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. 

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

  13. DID I PARK IN HANDICAPPED PARKING TODAY? WHY? no, i didn't leave the house

  14. DID I WORK TODAY? yes, maybe 7 hours?

  15. MUSIC LISTENED TO TODAY: lana del ray

  16. DID I ASK FOR HELP TODAY? no

  17. 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 :) 

  18. WHAT MADE ME SMILE TODAY? Nova- Luna and Waverly. Karma and Nova-Luna learning how to play together 

  19. WHAT MADE ME CRY TODAY? nothing!

  20. WHAT MADE ME LAUGH TODAY? the people i was around 

  21. 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

  1. TODAY'S DATE: april 28, 2017

  2. CURRENT TIME: 1:33 Pm 

  3. CURRENT LOCATION: carrboro, north carolina 

  4. CURRENT TEMPERATURE: 81

  5. BLOOD PRESSURE: 

  6. TIME I WENT TO BED: 10:30 pm (was awake last night from 3am-5:30am ) 

  7. TIME I GOT OUT OF BED: 11:25 am

  8. TOTAL HOURS SLEPT: 11 hours

  9. HOW DID I SLEEP? great! minus being up from 3-5 :) 

  10. 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 

  11. 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? 

  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? 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

  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? 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

  14. DO I HAVE A HEADACHE?  yes, feels a bit like the headache i had after my spinal tap 

  15. HOW IS MY THOUGHT PROCESSING THIS MORNING? pretty good actually!

  16. 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

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

  18. 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:

  1. 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) 

  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? nope. gluten free as always. have started eating yogurt again and am doing parfaits with gf granola from aldi and fruit. YUM

  5. OVERALL PAIN LEVEL TODAY (ON 1-10 SCALE SYSTEM): 6

  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 

  7. ENERGY LEVEL: 3 (decent!) 

  8. 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. 

  9. 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? 

  10. HOW DID I LOVE MYSELF TODAY? I made myself some good food and went to bed early 

  11. 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. 

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

  13. DID I PARK IN HANDICAPPED PARKING TODAY? WHY? no, i didn't leave the house

  14. DID I WORK TODAY? yes, maybe 7 hours?

  15. MUSIC LISTENED TO TODAY: lana del ray

  16. DID I ASK FOR HELP TODAY? no

  17. 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 :) 

  18. WHAT MADE ME SMILE TODAY? Nova- Luna and Waverly. Karma and Nova-Luna learning how to play together 

  19. WHAT MADE ME CRY TODAY? nothing!

  20. WHAT MADE ME LAUGH TODAY? the people i was around 

  21. 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?