Creative writing and memoir writing

What it's like to come out of a seizure 

Vulnerability of seizures

Secret Super Power of Invisible Disability

Dating and Epilepsy

Not Drinking Socially

My Cat Tries To Crash The Interview

Medical Marijuana and Epilepsy (Charlotte's Web)

Medical Marijuana California Laws

Financial Realities of Those of Us On Disability 

Pixar Incredibles 2 Epilepsy Warnings

Triggers for Epilepsy You Might Not Expect

Service dogs and epilepsy

What Could Change To Keep Epileptics Safe (Pieology please change your bulbs!)

Rose Colored Glasses for Epileptics

Ketogenic Diet For Pediatric Epilepsy

MCT Oil For Epilepsy

Paleoish is my New Favorite Word

Wheat Belly Book

Different Types Of Epilepsy 

Absence Seizures

An Incredible Description of What A Seizure Feels Like

Monica Actually Becomes Speechless 

Serious Talk About Fear of Death

RuPaul's Drag Race Miz Cracker

Vulnerability and Privilege When Coming Out of Disorientation

The Process of Diagnosis

Pregnancy and Life Decisions With Epilepsy Medication Questions

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More Than A Spoonie Blog

Young People With Chronic Illness

Audible

Adam Ruins Everything

Uniqlo Bras and Bra Tops

Victoria Jackson

SickBoy

Stuff You Missed in History Class

Lore

Joe Rogan

Deal With It

Myths and History

What is your disorder? *

Neuromyelitis optica, depression, adrenal insufficiency. Nmo is similar to MS

At what age did your disorder become a daily issue? *

4

Who were you before your illness became debilitating? *

A funny sarcastic independent little girl

What would you do if you were not dealing with your invisible illness? *

I would’ve been finishing high school

What would you like people to know about your daily life? *

Everything is exhausting.

What would make living and moving in the world easier for you? *

Better options to help relieve symptoms

Do you have any life hacks? *

Yes! 1. water bottles 2. towels dressing gown 3. homeschooling

What kind of support do you get from family or friends? *

I Need a full-time carer...to make me food and everything because I’m in bed all the time. My friends also help by treating me normally but also getting it.

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

I can’t remember an example. But people are always very impressed thanks blind because I manage well

How has your invisible illness affected your relationships? *

I don’t get to spend very much time with my family. But it makes the time we do more valuable, the dynamics of my relationship with my parents and brother are very interesting. They each go above and beyond for me. But don’t see me as broken. They see me as me.

Is there anything you are afraid to tell people in your life? *

That I often blame/doubt myself. Sometimes I worry I’m not trying hard enough. I compare myself.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

No. I’m very lucky to have had the same team since I was 4, when they didn't doubt me. But I imagine if I were to be newly diagnosed now they would suspect it’s for attention and stuff.

What is your best coping mechanism? *

PODCASTS! I love them sooooo much n it’s an effortless distraction. I listen to so many that I can’t catch up 😂

What are you the most concerned about and the hopeful for in the future? *

I’m scared I’ll be this way forever. That there will not be improvements. I have so many new and adapted plans in my head. But everything is “when I’m better”. I have hope at the same time that I can improve. I’m currently looking into more holistic options.

What is your favorite swear word?

Shit

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

How this affects my mental health, and of course my work as a patient advocate.

What is the hardest and/or best lesson your condition has taught you?

The hardest AND best lesson is that things change. Like things changed in a bad way when I got sicker. But they have also changed in good ways when I’ve overcome rough times. I like to tell my peers that this won’t last forever. Because this exact moment won’t. Your perspective changes all of the time. More experiences mean more wisdom more strength. They may get worse, so this crap time is actually a good one but they also could get better.

What is the best purchase under $100 that helped your life

My heated blanket! It’s like a full body heating pad. Only about £25 amazon.

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What is your disorder? *

Reflex Sympathetic Dystrophy/ Complex Regionals Pain Syndrome, Ehlers Danlo’s Syndrome, other GI issues

At what age did your disorder become a daily issue? *

19

Who were you before your illness became debilitating? *

A runner, softball player, and marching band lover who had to give that all up.

What would you do if you were not dealing with your invisible illness? *

I would still want to advocate for people with disabilities as my mother was severely disabled when she was alive and I believe she deserved a happier better life.

What would you like people to know about your daily life? *

Love training my service dogs and am a wheelchair user and forearm crutch user who loves to play music and is an artist as well.

What would make living and moving in the world easier for you? *

Pain management and understanding of my condition as a whole.

Do you have any life hacks? *

Almond milk helps a sour stomach lol

What kind of support do you get from family or friends? *

I get most of my support from my fiancé and sisters. My dad does the best that he can and my stepmom is amazing and helps him every day to get better at dealing with me and understanding.

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

Yes but only until I showed my Asscheek to them to give them the visual evidence of my leg. I have a lot of physical visible things you can see so I’m not too invisible haha

How has your invisible illness affected your relationships? *

It has destroyed them and ruined my mental state.

Is there anything you are afraid to tell people in your life? *

I’m sad a lot, unfortunately(my own issue of needing to learn self-love) and battle pretty severe depression.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

No, it makes them more understanding once I got my diagnoses and how to treat me.

What is your best coping mechanism? *

Sharing myself with others.

What are you the most concerned about and the hopeful for in the future? *

Imagining that the worst rock bottom pain I feel now is nothing compared to what the future could hold my leg. I’m hopeful my spinal cord stimulator trial will work but we won’t know till we try.

What is your favorite swear word?

FAQQQQQ(fuck) in all varieties haha

What is the hardest and/or best lesson your condition has taught you?

I need to learn self-love and self-coping mechanisms

What is the best purchase under $100 that helped your life

My yellow heavy duty portable wheelchair ramp haha

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We have been so lucky and I am so honored that Invisible Not Broken has listeners from Africa, India, China, Russia, South Korea, Australia, the United Kingdom, South America, and Mexico basically every continent but Antarctica!

I just have to admit I’m super curious what life is like for all of you in other countries if you have chronic pain, chronic illness, or invisible illness. I'm in the United States and all I know about life with a disability from other states and countries is what I’ve heard from people interviewed for the podcast.

So my challenge is to take a video or photo every day for 30 days to show the world what life is like for you and just tag us @invisiblenotbrk And don’t forget to #30dayspooniechallenge  and make sure you share this with the friends get everyone in on it.

Don’t forget to hit that subscribe button and make sure you share us with your friends family support groups Facebook groups we really need your help!

• What I am using
• Adobe Spark Video APP
• IPhone 7 Plus (Getting desperate to switch to Google Pixl)
• Relentless and my children would say annoying optimism

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What is your disorder? *

Reflex Sympathetic Dystrophy/ Complex Regionals Pain Syndrome, Ehlers Danlo’s Syndrome, other GI issues

At what age did your disorder become a daily issue? *

19

Who were you before your illness became debilitating? *

A runner, softball player, and marching band lover who had to give that all up.

What would you do if you were not dealing with your invisible illness? *

I would still want to advocate for people with disabilities as my mother was severely disabled when she was alive and I believe she deserved a happier better life.

What would you like people to know about your daily life? *

Love training my service dogs and am a wheelchair user and forearm crutch user who loves to play music and is an artist as well.

What would make living and moving in the world easier for you? *

Pain management and understanding of my condition as a whole.

Do you have any life hacks? *

Almond milk helps a sour stomach lol

What kind of support do you get from family or friends? *

I get most of my support from my fiancé and sisters. My dad does the best that he can and my stepmom is amazing and helps him every day to get better at dealing with me and understanding.

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

Yes but only until I showed my Asscheek to them to give them the visual evidence of my leg. I have a lot of physical visible things you can see so I’m not too invisible haha

How has your invisible illness affected your relationships? *

It has destroyed them and ruined my mental state.

Is there anything you are afraid to tell people in your life? *

I’m sad a lot, unfortunately(my own issue of needing to learn self-love) and battle pretty severe depression.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

No, it makes them more understanding once I got my diagnoses and how to treat me.

What is your best coping mechanism? *

Sharing myself with others.

What are you the most concerned about and the hopeful for in the future? *

Imagining that the worst rock bottom pain I feel now is nothing compared to what the future could hold my leg. I’m hopeful my spinal cord stimulator trial will work but we won’t know till we try.

What is your favorite swear word?

FAQQQQQ(fuck) in all varieties haha

What is the hardest and/or best lesson your condition has taught you?

I need to learn self-love and self-coping mechanisms

What is the best purchase under $100 that helped your life

My yellow heavy duty portable wheelchair ramp haha

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1. Make sure you have more than enough meds to get you through the trip. (My rule of thumb is to always make sure I have enough for 3-5 extra days in case I get stuck somewhere due to weather or other problems)

2. If you use a daily pill sorter,

   1. Take it empty along with your bottles of pills

   2. Fill it but take pictures of each pill next to its bottle in case you need to show someone what the pills are for. (I have traveled all over the world and never had a problem taking my pills in a pill sorter.

3. Always keep your pills on your person, never put them in checked luggage!

4. Make sure that you inform your travel provider of any accommodations you need WHEN you purchase your tickets

   1. Dietary restrictions

   2. Assistance needed with transport

   3. Transportation of assistive devices (Wheelchairs, etc)

5. You will probably be sitting still for a long time, make sure you plan accordingly

   1. Warm socks

   2. Sweats

   3. Compression socks

   4. Wear comfortable clothes

6. Find out about resources near where you are staying for things like dialysis, oxygen rental, wheelchair rental, etc.

7. If you have a condition that could impact your ability to travel, getting travel insurance might be a good idea.

8. If you have a layover, there is an app, Gate Guru, that can show you the layout of various airports so you can plan food/resting if you have the time.

9. Don’t be afraid to schedule in days to rest and recover. I know you want to see everything, but you’ll enjoy your trip more if you give yourself a break every so often. *Knowing I have a day to recover allows me to occasionally push myself to do something I otherwise would be too nervous to attempt.*

10. Investigate physician availability where you will be traveling. Your doctor, health care provider, insurance company or local embassy can provide the names and contact numbers of physicians at your destination. For more information, see Health Care Abroad.

11. Bring spare parts and tools. Wheelchairs can take tremendous abuse while traveling; assemble a small kit of spare parts and tools for emergency repairs. You may also be required to dismantle a wheelchair for certain flights or activities; make sure you and your traveling companions know how to do this.

12. Research, Research, Research (your destination, the airline, etc)

1. All means of transport

   1. Noise canceling headphones

   2. Comfortable clothes

   3. Shoes that are easy to take off / put back on

   4. Back up batteries and power cables for electronics

2. Cars

   1. Pillows - so you can sleep/get comfortable

1. Trains

   1. Earplugs (Trains can be very noisy)

1. Planes

   1. A light jacket as the temperature can vary greatly.

   2. Snacks / Bottled water

   3. Travel neck pillow

1. Don’t be afraid to ask for assistance getting from wherever you are dropped (airline gate, train platform) to the exit. The worst they can do is say no, and it might just save you a lot of pain.

2. Most airports have people whose only job is to push people around in wheelchairs (even people who can walk, but can’t walk long distances). Request them if you even think you’ll need it.

   1. *I didn’t think I would and almost turned it down once. I underestimated how far the walk was and if I had turned them down, would not have been able to get through security*

3. If you have any kind of food allergies, plan ahead to have your own food until you reach your final destination as you cannot guarantee that there will be something safe along the way.

   1. I knew a particular airport had a place that was safe for me, and when I arrived, it was closed and under construction. I was very hungry by the time I got where I was going.

1. Friends and family are complicated. They have known you a long time and may not realize all the things you have to deal with and may be clueless about things you need for accomodation.

2. Make sure if you are staying with friends or family that they know ahead of time any issues you might have. (They may expect to put you up on an air mattress, but you can’t get up from that close to the floor. Or they might not have any food that is safe for you.)

3. Plan ahead in case they forget something that is going to affect you adversely

   1. Try to head off any potential problems by mentioning specific things you are worried about.

   2. If possible, plan alternatives in case they are unable to accomodate you. (For example, having already researched nearby hotels or places to get food)

4. You may be the only person with a disability that they know, so be mentally prepared to play the role of educator.

5. If friends and family are too complicated be up front or hell lie. Get a hotel room. A place to hide and runaway can save you jail time later.

1. If you are travelling to a country with a different language than your own and need accommodations of any type, use Google Translate to compose phrases that you will most need to say.

   1. This might not be perfect, but it will at least allow you to get your point across in a pinch.

      1. I use this for my dairy allergy. I made up little cards with an explanation that I cannot have dairy (including examples) in the native language. I carry them with me everywhere. If I am going out to eat, I show the card to the server so they can help guide me to food that is safe for me.

   2. The EU mandates that restaurants carry “food allergen” menus for all their items so that people can make informed decisions.

2. There are several good resources for disabled travel in other countries. Look up the country you plan to visit and see what other people found easy or difficult. I’ve found quite a few things that I would have rejected outright, but reading other people’s stories made me realize that it wasn’t as bad as I imagined.

   1. http://sath.org/disability-travel-websites

   2. https://www.mobility-advisor.com/disabled-friendly-travel.html

   3. https://www.washingtonpost.com/lifestyle/travel/disability-travel-resources-and-tips/2013/07/25/7e14d0aa-cd54-11e2-9f1a-1a7cdee20287_print.html?noredirect=on

   4. http://www.accessiblejourneys.com/accessible-travel-resources.htm

   5. https://www.smartertravel.com/2017/06/19/disabled-travel/

   6. http://www.travelguides.org/travelresources.html

   7. http://www.executiveclasstravelers.com/1/travel_resources.htm

   8. http://wheelchairtraveling.com/lonely-planets-list-of-accessible-travel-resources/

   9. https://www.makoa.org/travel.htm

   10. https://www.1800wheelchair.com/news/wheelchair-resources-disabled-travel-guide/

   11. http://www.accessiblejourneys.com/?gclid=CjwKCAjwpIjZBRBsEiwA0TN1ryf6ryI6SX3mqMDk-sfvPhW1YkqxMEeBz2j_8LHyZmRlrhaw__UGXxoCKFUQAvD_BwE

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Alright maybe I have listened to too many Tim Ferris Podcast episodes (no really super motivating. Give it a try if you haven't). I decided to run a personal experiment as the US has yet again made it more difficult to get pain medication even when you go to a PAIN CLINIC and pharmacies have decided that they will supersede doctors n how much and when you may have your medicine.

Right now CVS which has teamed up with Target only allow for one week of an opioid prescription at a time. This is said to be only for acute conditions but I fear that there will be issues depending on who the pharmacist is. Just think of how possible it is to drive out EVERY week when in chronic pain. Walgreens allows for once a month from the time of pick up. This means if I can't wait for my prescription and I have to wait until I can drive again I can be up to a month behind on my prescriptions.

So among the fear mongering, I decided to run an experiment. How long can I go without my pain pills? Let me be clear I have ZERO addiction issues this was strictly about how long I could handle my daily level 8-9 pain without my medication.

Anyone who knows me will tell you optimism is how I will end up getting killed (or saying the wrong thing to the wrong person.) 

I REALLY thought I could make it the entire day. What else are super high pain thresholds for?

SPOILER NOPE NOT POSSIBLE NOT HAPPENING WITH A SIDE OF DEAR GOD WHY.

It did not go well. I am afraid. I am scared that an administration that cares nothing for people will force so many of us too tired and unable to fight into a darker place where even less is possible. If you want to share this to show others what it is like to be in chronic pain without medication please feel free to share.

For the record, I have Ehlers Danlos, POTS, and Fibromyalgia

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-Trans lifeline (a trans-run hotline for trans people that also works with microgrants to help trans people change their IDs) : (+18775658860 US/ +18773306366 CANADA/ https://www.translifeline.org/)

-A basic definition & concept breakdown: http://www.tranarchism.com/2010/11/26/not-your-moms-trans-101/

-An article about understanding genderqueer, a term like nonbinary https://genderqueer.me/2013/04/17/explaining-genderqueer-to-those-who-are-not/

-alokvaid menon on instagram (alokvmenon—live videos especially) and their page on facebook, They’re a trans, gender non-conforming person of colour who is excellent at being honest and vulnerable in their daily experiences of cissexism and harassment

-comingoutasnonbinary.tumblr.com

-blog about chronic illness:   chronicill on wordpress or chronc-ill.tumblr.com

-collage instagram: eliottgennieve (touches on chronic physical and mental illness, being trans and nonbinary, and other various life things)

-nonbinary 101/meeting a nonbinary person: https://valprehension.com/genderqueer-101/

-an answer to common questions: 

https://everydayfeminism.com/2015/08/trans-questions-201/

-a video to explain the term nonbinary to kids:

https://m.huffpost.com/us/entry/us_5a7b47f7e4b044b38218a380

-a basic trans healthcare breakdown: https://www.healthline.com/health/transgender-friendly-healthcare-language#4

-also a fellow podcast! How To Be a Girl

-a website with a lot of articles directed at parents of kids coming out as LGBTQ: http://mykidisgay.com/category/gender/

-Chronically Fully Sick in Facebook

-post on They pronouns in grammar: https://motivatedgrammar.wordpress.com/2009/09/10/singular-they-and-the-many-reasons-why-its-correct/

-article about talking to a trans person etiquette:

https://www.autostraddle.com/how-to-talk-to-a-transperson-76785/

-PDFs of a book about gender:

What is the best purchase under $100 that helped your life

CBD Innescents Salvation Hot Freeze Skin Salve (they have various sizes, all under 100–I have a $14 one)

-Ice Face Mask/Cold Therapy mask, the brand I got was Perfecore from Amazon ($20)

-Electric Heating pad (I got this a long time ago but I believe it was $20-30)

What is your disorder? *

fibromyalgia, benign hypermobility, after effects of Lyme disease, depression, generalized anxiety

At what age did your disorder become a daily issue? *

8

Who were you before your illness became debilitating? *

Same person I am now? Maybe more confident in my ability to do multiple things in a day.

What would you do if you were not dealing with your invisible illness? *

Probably adventuring outside much more and seeing my friends more often. Running, swimming, or otherwise working out more. Riding my longboard.

What would you like people to know about your daily life? *

My capacity to do things can vary by the hour and even when I’m “fine” there’s at least a minimal base level of pain.

What would make living and moving in the world easier for you? *

Less fear of judgment from strangers about my age & appearance & use of a cane. Understanding from employers about the variability of my disabilities. Access to medical marijuana.

Do you have any life hacks? *

Have friends who encourage you but also understand your limits may fluctuate. Keep your car keys in the same place, like a basket by the front door esp if you have fibro fog. Keep water & a heating pad by the bed, along with art supplies and electronics & chargers.

What kind of support do you get from family or friends? *

I currently live with my parents and they help with buying groceries and sometimes cooking food I can eat (I’m vegan, they’re not). My friends support me with advice and their belief in me.

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

Yes

How has your invisible illness affected your relationships? *

I don’t get out much to meet people, so I don’t meet new people and miss hanging with the ones I know. Romantically, using a cane & having an unpredictable body seems too scary for other people.

Is there anything you are afraid to tell people in your life? *

How much pain I’m actually in and how long it actually lasts

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Yes, doctors don’t see my condition as urgent or believe how frustrating it can be. I feel like I’m also treated immaturely because of my age in combo.

What is your best coping mechanism? *

writing poetry or blog posts, cooking, and making art (also weed— but I can’t access that/mention it due to my job)

What are you the most concerned about and the hopeful for in the future? *

I’m most concerned that I won’t be able to complete my degree and I’ll have to move back home, and that I won’t be able to go on the road trips, travel, or hike how I want to. I’m most hopeful for all the really awesome experiences I’ll gain in graduate school and just in life because I love to do things like go skydiving and I want to do so much more.

What is your favorite swear word?

Fuck

What is the hardest and/or best lesson your condition has taught you?

Not to take days where I can do whatever I want in terms of physical activity for granted. That true friend will work to understand and be accommodating of your needs.

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