hEDS Daily: Saturday May 13th, 2017

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

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

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

MORNING EVALUATION:

1. TODAY'S DATE: Saturday May 13th

2. CURRENT TIME: 11:00 am

3. CURRENT LOCATION: Savannah

4. CURRENT TEMPERATURE: 70

5. BLOOD PRESSURE: 

6. TIME I WENT TO BED: 10 pm

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

8. TOTAL HOURS SLEPT: 11.5!

9. HOW DID I SLEEP? awesome

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

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

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

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

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

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

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

16. DO MY LEGS WORK TODAY? yes

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

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

hEDS Daily: Monday May 8th, 2017

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

MORNING EVALUATION: wednesday april 26th, 2017

1. TODAY'S DATE: may 5, 2017

2. CURRENT TIME: 11:17 am!  

3. CURRENT LOCATION: savannah, ga

4. CURRENT TEMPERATURE: 80

5. BLOOD PRESSURE:

6. TIME I WENT TO BED: 3 AM

7. TIME I GOT OUT OF BED: in bed right now typing this 

8. TOTAL HOURS SLEPT: 8 hours

9. HOW DID I SLEEP? I was so tired, yesterday was SO LONG, that I slept great. I wish I was still asleep!

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 | gabapentin 5 mg 

11. 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 

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

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? 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 

14. DO I HAVE A HEADACHE?  yes

15. HOW IS MY THOUGHT PROCESSING THIS MORNING? decent.. much much better than last night

16. DO MY LEGS WORK TODAY? YES!!!

17. 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 25, 2017

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. 

My 30th April

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

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.