Hope for People with ME

Pacing. I had 1 thing I had to do today, it took about 30 minutes and i took 5 breaks 👏

Taking breaks during the task has been a hard habit for me to implement. Before, I would finish the 1 thing and then rest, but using .health has changed my perspective.

For example, If I spend a solid 15 minutes in my anaerobic threshold the toll it takes on my body is more than if I did 5 sets of 3 minute.

I have POTS as well as ME/CFS which makes heart rate based pacing trickier, but not impossible.

I have figured out a basic points budget for each day and it is really amazing how much the Visible app is helping me hone in on the specifics. I am really excited to see how it helps in preventing and decreasing the amount of time I spend in a crash/Post-Exertional Malaise (PEM)

This is as close as this chronic girl is getting to Halloween this year. I’m loving all the fun costumes y’all came up with this year!

Have a safe and fun night! 👻 🎃

Years ago someone asked me to paint them a dandelion. It turns out that dandelions are infinitely intricate.

As an artist I didn’t want to hint or imply that intricacy I wanted to showcase it.

At the time I couldn’t do justice to the dandelion, but years later with a lot more practice made possible by accessible equipment, I am thrilled with how this piece came out.

Bonus, the person had forgotten about ever asking me and loved her early birthday present!

ID: yellow dandelion watercolor in various stages of growth. “I have lost my SMILE, but don’t worry the DANDELION has it. - Thich Nhat Hanh”

Seemed appropriate for the end of October

- Chains -

Healthcare is bound in chains made up of bigotry and misogyny.

For example, medical trials are predominantly carried out using adult white males. Another example, women are 50% more likely to get mid-diagnosed following a heart attack and 35% more likely to be misdiagnosed after a stroke than their male counterparts.

I am not informed enough on what’s taking place in Gaza to w**d through the disinformation. What I do know is that millions of Human Beings, the majority of which are children, are suffering and have been suffering. I will do what I can to support the children inside Gaza and see that they are able to receive medical care.

After some research I believe this non-profit is a good option:
Palestine Children's Relief Fund

https://pcrf1.app.neoncrm.com/forms/gaza-relief

I was thinking that if so many people are scared of spiders 🕷️ that they have become a symbol of spooky then maybe I should start decorating for halloween with things that actually scare me. Such as

Crappy doctors
Unmasked people
Guns
Disinformation

•WANDER• inktober 2023

Big news!

’s Director of Scientific and Medical Outreach, Jaime Seltzer, has co-authored a paper in Mayo Clinic Proceedings on how to diagnose and manage ME/CFS.

If you have been struggling with fatigue, exercise intolerance, recovering from Covid, etc and have been unable to find a knowledgeable doctor this concise review might help you and your doctor find answers and management options. Get this paper to your doctor and any doctor you can!

If you are a healthy, abled person and want to help millions of people, please consider passing this along to your doctor at your wellness visit!

Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection. There has been increased interest in ME/CFS recently because of its significant overlap with the post-COVID syndrome (long COVID or post-acute sequelae of COVID), with several stu...

Day 10 • Fortune 🔮

I wish my brain would stop thinking of people when I look at the prompt word. They are so hard! But I didn’t look at anything for reference and tried out a new style and I am not mad at it 🙃

Not much energy for drawing the last couple of days so quick renderings for “Drip” and “Toad”

-GOLDEN-

-GOLDEN-

I caught up!! 😁

Still attempting to drawing the first thing that comes to mind when I think about the prompts.

Here is -dodge-

Still attempting to drawing the first thing that comes to mind when I think about the prompts.

Here is -dodge-

My sauna bag definitely helped, I lost a full 4 lbs of water weight 💦😂🙄🤷🏻‍♀️

My pots specialist told me that I have leaky veins. Which means that I carry excess water in my tissue.

Water weight is a whole new monster when it comes to POTS and Dysautonomia

But if it comes down to me being bloated or me passing out I am definitely going to embrace the 💦 🐡

One possible downside to IV hydration is Hypervolemia (fluid overload).

I am still in a crash from the wedding in august and have been doing all I can to listen to and support my body but I missed the signals last night when I ran my fluids.

I am using an infrared sauna bag to help me sweat out some of the fluid, without doing a bunch of physical stuff that my body is not up for.

Of course, I have to be careful because heat is a trigger for POTS, but it is the least harmful choice in this moment and I am actively tracking my heart rate so I don’t go over my anaerobic threshold.

More daisies 🤩

Daisy
Ink and metallic watercolor

Poppies!

I really love poppies and I’m hoping for some beautiful orange ones in the garden next year 🤞

My little brother got married earlier this month and it was a beautiful day. My family left at the beginning of this week and I’ve been doing some serious hibernating.

Even though drawing is a form of exertion it gives back. I feel joy, accomplishment, challenge, peace…it is so much better than scrolling on social media 😵

Ever since I got sick, I’ve had this issue with high collars.

I had some struggles with claustrophobia growing up, but it didn’t influence my choices.

Unfortunately, after all the medical testing, medication side effects (thanks steroids), and medical trauma the claustrophobia response has become centered around my head and neck.

It was really hard for me to justify buying brand new t-shirts and cutting out the collar. Im over it now, lol 😂

I have been finding soft, inexpensive tees that I really like and immediately cutting out the neck. I even bought a really nice pair scissors that I have specifically designated as fabric scissors.

Don’t let weird social norms dictate your needs. Adapting is the number 1 way that I deal with my complex medical situation.

💜

I feel a restless dissatisfaction when I am not able to create.

A quick sketch encompassing some of my favorite things: tea, female authored books, and flowers 💜

3. Cope Ahead: Preparing for the situation ahead of time. I started preparing and adjusting for this wedding back in December and here are just a few of the ways I am coping ahead of time.

-Detailing all of my tools for symptom management
-Asking a friend to come with me to the wedding as my personal aide
-Eliminating as many medical appointments as possible in 2023
-Not trying any new medications or supplements in 2023
-Asking for help more often to avoid crashes

-Making bags of specific items that will be needed (my clothing, my hair/makeup stuff)
- Practice run for hair and makeup (on separate days) to figure out exactly what supplies I need and how to do it easily.
-Setting appropriate expectations for myself and my family
-Arranging rests during the event
-Heart Rate management
-Figuring out accessibility to the event
-Bringing my large wingback chair to the venue
-preparing medication, supplements and nutrition support prior to the event

3. Cope Ahead: Preparing for the situation ahead of time. I started preparing and adjusting for this wedding back in December and here are just a few of the ways I am coping ahead of time.

-Detailing all of my tools for symptom management
-Asking a friend to come with me to the wedding as my personal aide
-Eliminating as many medical appointments as possible in 2023
-Not trying any new medications or supplements in 2023
-Asking for help more often to avoid crashes

-Making bags of specific items that will be needed (my clothing, my hair/makeup stuff)
- Practice run for hair and makeup (on separate days) to figure out exactly what supplies I need and how to do it easily.
-Setting appropriate expectations for myself and my family
-Arranging rests during the event
-Heart Rate management
-Figuring out accessibility to the event
-Bringing my large wingback chair to the venue
-preparing medication, supplements and nutrition support prior to the event

I have an energy limiting chronic illness and have been housebound for several years. My brother is getting married in 25 days and I want to go to his wedding and celebrate with my family without lowering my overall baseline.

I am adapting the ABC’s of Dialectical Behavioral Therapy to make this happen.

1. Accumulate Positive Emotion
2. Build Mastery
3. Cope Ahead

July is disability pride month. Disability pride means not being ashamed of my body, my limitations, or my accessibility needs.
Wheelchair, kinesiology tape, heart rate monitor, implanted port, scars, short and unwashed hair, second-day outfit, etc

I had my yearly review for in-home care services today and my case manager asked me who brushes my hair. I said “I don’t brush my hair.” I’m not sure why she looked surprised. I just got a look at myself in the mirror and I am pretty sure my hair speaks for itself.

ID: Emily is wearing a N 95 gray mask, green framed glasses and her short brown hair is standing up on one side.

Experimenting with my new set of alcohol markers. Much to my delight this batch had several new purples 💜😁

I am an ambulatory wheelchair user and today I got to “take a walk” with my family for the first time in many years thanks to my new power chair.

Today, is Day!

I am absolutely celebrating this tool that is making life more accessible for me.

Farmers market day! We have an amazing farmers market nearby on Sundays and my mom went by today and brought home so many delicious things.

Including fresh strawberries and my favorite treat, a fresh baked croissant (they are truly miraculous).

Did you know that a lot of farmer’s markets offer a matching program for SNAP benefits? This means you can use some of your food benefits to get amazing fresh and local produce.

There is a price cap (this year at ours it is $25) and whatever you want to spend up to that amount they will match that amount and give you special tokens to use for produce.

What is your favorite flower? I really love anemones and purple 💜 so this piece is making me happy.

LGBTQIA+ Ally

I 🩷 Drag

Drag doesn’t harm our kids but guns kill them.

Learning, listening, and supporting the LGBTQIA+ community.

🌈

Summer in the city

Mixed media:
Alcohol markers
Staedtler fine liner
Gelly Roll while gel pens

This is how much I hate my IV Pole 😂 I usually hold the bag on my shoulder but sometimes I need both hands in which case I do this.

ID: Emily, holding the top of a Saline Bag in her teeth.

Another use up the extra paint in a fun don’t have to think about it art project.

The other night I was jonesing for some artistic time but really, really low on brain power and physical energy . .nelson.art did a demo of this art project and it was perfect for what I needed.

I looks kind of like a hill-scape to me.

I have this thing about wasting paint 🤷🏻‍♀️🙄 so I’ve been using up premixed colors for simple art fun.

I took a trick from and bought some white sweatbands and use them to clean my brush.

Supplies:

Pocket Journal: Hand•book Journal Co

Paint: Winsor & Newton Cotman Watercolor Paint Set, Travel Set

Staedtler Fineliner