Welcome to our Flowly Feature series where highlight a hero on their health journey so that we can get inspired, pick up a tip or two, and remember that we are not alone 💙
Today’s feature is with Grace of @labeleddisabeledgrace, an amazing mother and advocate.
Tell us a little bit about yourself:
Hi! I’m Grace, a 28 year old wife and mother of one. I live with Epilepsy, cEDS, POTS, MCAS and am currently in month 8 of status Migrainosus. I love to travel the world, read, DIY and more!
I have a degree in Fashion Design and Merchandising and am hoping to go back to get my Masters or PhD, but currently for my health and child I am a stay at home mother.
What has your personal health journey been like?
Since I was a child growing up in Canada, I have had symptoms of EDS (Ehlers Danlos syndrome). I was always more flexible, more injury prone, covered in bruises, having dental problems despite good dental care and more. However, I wasn’t diagnosed until I was 19 or 20. It took an orthopedic surgeon realizing I was still hypermobile post surgery to refer me out to a specialist who diagnosed me with hEDS. Even that diagnosis changed when I was 27 and had genetic testing, (birth) family history and the realization that I had more skin symptoms than typical hEDS.
My POTS journey was much the same. I started fainting around 13 and was originally diagnosed with Vasovagal Syncope. When I got to University in Hawaii at 17, they felt that it wasn’t just VS but did no further testing and added salt tablets to my med list. The salt tablets helped but with the side effect of vomiting. I was taken off the salt and put on what I now know were beta blockers until I left university. When I was 27, I mentioned to my cardiologist that I thought I had POTS along with my EDS and she said “of course you do, you have all the symptoms”. I was shocked. I was put on different beta blockers that didn’t affect my BP and sent to Neuro for a Tilt Table Test where they found it to be Hypovolemic POTS.
Finally my Epilepsy journey. It was a mess. I started having seizures a little after I began fainting, the symptoms were different so we can now differentiate. Nothing was done about it until I was in University and mentioned it to a doctor. She sent me to a neurologist who did a 10 min EEG and said “All girls your age have seizures, you’re fine”. It took nearly a decade before 2 doctors from my current team said this was unacceptable and set me up with a Seizure Neurologist who did a 2hr EEG and found I had Epilepsy. We were furious! In looking at my adoption paperwork after diagnosis we realized I was having seizures as a baby with my pre-adopt family!
This has been a constant circle of having symptoms, being ignored, getting diagnosed finally and then starting again. With every single one of my diagnoses I have been told by other doctors, upon giving my history, that African-Americans do not have these conditions.
What would you tell the past version of yourself when you first began your health journey?
I would tell young me to tell people earlier about my symptoms, to believe my body, and to advocate for proper care for myself.
Here at Flowly, we are all about cultivating a flow state. What does a state of flow feel like or look like to you?
For me a flow state feels like a deep breath of fresh air. Being able to sink into bed with an ice pack, or heating pack, or even just a fluffy blanket, and just zone out without thinking about my chronic pain for a moment.
When do you feel the most "in flow" in your life?
I feel the most in flow when I am taking a bath.
How do you balance taking care of your health on top of everything else in your life?
As a stay at home mother it can be really hard to balance parenting a toddler and dealing with my health. I like to make a flare kit to help on bad days as well as have activities planned which can be done without my direct involvement.
I try to go for walks for my own health as well as to bring my son out. Recently we have put our son in daycare 3x/week so that I can go to my doctor's appointments. And finally I have a routine for the morning and the end of the day for my meds, infusions and a moment to breathe.
What resources have helped you on your journey?
- Joining a local chronic illness page has been a game changer. The ability to get resources from people in my town or state and see people going through the same things as me has helped every part of my journey.
- The book “Disjointed: Navigating the Diagnosis and Management of Hypermobile Ehlers Danlos” has been incredibly helpful even without having hEDS.
- The podcast “Invisible Not Broken Chronic Illness Podcast” by Monica and Eva is a great option for those wanting to hear about other chronic illnesses in a kind of fun way.
Shout-out a source of love in your life!
My husband! He has been so understanding and supportive. He loves to just draw me a bath or force me to lay in bed with an ice pack when he knows I am pushing it too far. We even met as a result of my conditions and his job!
Where can we follow your journey?
My TikTok is @labelleddisabledgrace 📲
My Instagram is @_whatgracewore 📸
Know a hero you think we should feature? Send us a message at contact@flowly.world! 📩