You can “fire” your doctor if they are not taking your concerns seriously

I don’t want a diagnosis and we don’t want to be sick but we do want to be able to have the correct treatment, which can only happen with the right diagnosis

Even when you have a diagnosis, it may take a to find a treatment that works and it may work well for you now but that could change

Have things that you need close to you whether you set up a mini kitchenette or you have a bag that has your essentials you keep with you all the time, it is important to have what you need around you

Bearable - medication and symptom tracker app

Hang in there 

Keep going, don’t give up

Her website: https://erikajoysneath.com/ 

Have to support mental health to support physical health and vice versa 

She wrote a book about Adalene Plays Many Ways, a children’s book about how chronic pain and how a day looks differently for two people https://www.amazon.ca/Adalene-Plays-Many-Ways-experiencing/dp/B0BTKXY349 

Accept the present and look forward rather than questioning why something happened to you (This took her years to do, this isn’t an overnight mindset switch)

Ask for help

Don’t let your anger or resentment towards your body control how far you are pushing your body

Care for your mental health

Don’t sacrifice your health for your job

Accept what you did in the past as doing the best you did with the information you had at the time

Continue to be brave and ask for help!

Find 2-3 people who will be in your corner 

Give yourself TONs of grace (extra scope of grace) 

Slow down and give yourself compassion

Salt/electrolyte recommendations: Vitassium salt pills, Liquid IV, LMNT, pedialyte 

Ice pack https://www.releafpack.com

Coping skills

Therapy

Deep breathing

Grounding

Affirmations 

Mindfulness

Journaling

Self care activities

Spending time with pets

Watching a show or movie

Lighting a candle

Reading a book

Listening to music

Support groups

Even if (insta: @weareeven) bible study support group for women with disabilities https://linktr.ee/weareevenif

Promise: support group for people with CMT https://www.cmtausa.org/get-involved/cmta-compass/

Take it one day at a time, he present and mindful

Don’t give up - there is support and love out there for you

Continue giving yourself grace and compassion

Don’t over do yourself

Trust your gut BUT if you have stomach issues, maybe don’t 

Get involved in social media/chronic health community because people can provide resources and tips they use which you can consider implementing too

Planning, writing everything down and keep an agenda gives you a piece of control back and helps you not forget things because it is written down

Worry well once worry well: Plan in advance for a flare / who can you lean on to take care of the kids or your pets, have food prepped and in the freezer so meals are easy, etc. 

Be informed and educate yourself on your chronic illness

Find a source of strength in your faith and in your self-love. How you treat yourself if how people around you will treat you - when you’re hard on yourself, people will be hard on you too

Give yourself a break, love yourself, and be kind to yourself

Educational background of someone who is a physiotherapist 

What is physio or physical therapy?

The notion of “movement is medicine” 

How to implement exercise even when you can’t do a big “workout” 

How does movement help with exercise intolerance? 

Can people with chronic illnesses benefit from physio?

Physical rehab is more than just the physical aspect, it is the mental, confident building too!

You have to find a balance of not pushing yourself too hard while still doing the things you enjoy. 

The Australian healthcare system has a dual model, private and public health model which allows for emergencies to be covered by the government but some treatments need to be paid for or if you have private health insurance, it would subsidize a portion of that treatment.

How COVID affected schooling while having a chronic illness

When you are first getting diagnosed, it is helpful to find people who have the same condition as you and you can see if they are doing well, there is hope for living a fulfilled life despite your chronic illness!

Get involved in the chronic health community because it helps you feel less alone!

Salt/hydration recommendations: Liquid IV, LMNT, and Propel electrolyte water beverage

Headache and light sensitivity recommendations: Sunglasses and dim computer light (night mode to take the blue light away)

Stay hydrated: get a cute cup with a straw so it will make you want to drink it

POTS: always have a blanket or jacket to layer up or have the ability to take off layers

The Art of being well with Dr. Will Cole

Balancing your health needs and fulfilling your passions 

What helped her stay flare free for a long period was a combo of western medicine as well as a holistic approach with diet, exercise, and mindfulness and learning to be in tune with her body 

Diving into the online community 

Tools provided by nonprofit organizations such as Lupus Foundation of America https://www.lupus.org/ 

CBD

Ginger turmeric drops

Red light therapy to decrease inflammation, pain, and improve circulation 

Her goal: foster an environment where living with lupus means thriving and not just surviving 

Your diagnosis does not define you

Goal to speaking to a friend once a week

Find a balance of doing the things you love but not pushing yourself too 

To do list app: habitica

Book/reading app: Blinkist

Face massager app: forYou

Storage on wheels for all your supplies and take throughout your house

Walking sticks / canes: 

Cheaper: Flexyfoot with cork handle 

More expensive: Neo-Walk (has fun designs)

Starting out of your diagnosis journey, you have 2 obstacles: 

A diagnosis: overcome your people's pleaser side and advocate for yourself and/or bring someone with you and follow people on social media who you can relate to and feel less alone but stay away from accounts that make you feel shameful.

Mental side of it: reclaim the chronic illness identity and be proud of it go from feeling shameful to feeling prideful in who you are and how you identify which may be disabled.

Get a second (or third) opinion, there are some good doctors out there

Take someone to the appointment with you for help

Support system and pets (like dogs!) makes a world of difference 

It is hard when you can’t trust your own body but start trusting yourself!

Good websites

https://endometriosissouthcoast.com/author/jodiehughes/

https://endobuddies.com/

https://www.menstrualhealthproject.org.uk/

Heat and tens machines help along side medications

Reach out for support and if you don’t have people in your area, connect to people online - a lot of comfort can be found in sharing and relating with people who understand and are going through it as well 

You are not alone!