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mind, body & EDS

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The Power of Thought

 

Whenever I share my medical journey, I repeatably am faced with, “I don’t understand how you’ve survived; I don’t get how you were able to relearn how to walk/read/write again; how have you made the impossible, possible?” So here it goes, I’m going to share a part of my truth with you and how I’ve been able to get to where I am today in the hope of enabling others in all walks of life…

Continue reading “The Power of Thought”

Maple Aubergine Salad

Laura Lee’s Kitchen by Mind, Body & EDS

As my diet has developed into a more vegan style, I always like to make sure I use one core vegetable which is packed full of nutrients as my ‘base’. I have personally found that with my variety of complicated dietary issues, I can absorb the nutrients of food far better when there is no meat involved. If I haven’t consumed enough protein, I always reach for quinoa for my meals! However, if you feel like having some meat you can always adapt this recipe to more your style by simply adding some grilled chicken.

Aubergines are a fantastic vegetable as as they very rich in fibre and are a great source of vitamins and minerals (copper, magnesium and manganese).In particular, they are known to be extremely high in vitamin B1 and B6 which play very important roles to your body’s metabolism helping convert food into energy and produce essential substances, such as neurotransmitters (allows nerves to function properly) and red blood cells. They also have a very low glycemic index level (GI) and low calories so are ideal for any of you with high blood pressure and high cholesterol. Continue reading “Maple Aubergine Salad”

“Oh, You Can’t Eat That?” – My Food Intolerance Journey

When I was finally diagnosed with Ehlers-Danlos Syndrome in 2014 after 6 years of investigation, it also brought several other diagnosis that are known to go “hand-in-hand” with this connective tissue disease. EDS is a congenital disease (genetic) and is multi-systemic due to it affecting the strength of collagen (structural protein) throughout the body (collagen makes up all of your skin, organs, tendons, ligaments, bones, blood vessels etc.) [source: http://ehlers-danlos.com/eds-types/]. In simple terms, EDS causes all the strong collagen in your body to be instead, extremely weak, stretchy and easily breakable. Therefore, many patients who have EDS have problems with their digestive systems.

Prior to my diagnoses, throughout my time at the University of Leeds studying for my undergraduate degree my health began to spiral into decline. Over the three years (2011-2014), I was suffering from a variety of symptoms: extreme fatigue, trouble sleeping, bloating, abdominal pains and cramping, nausea, vomiting, muscle fatigue, muscle and joint pain, hair falling out, bleeding gums, brittle flaky nails, grey complexion, constipation, diarrhoea, excessive sweating, heat intolerance, anxiety, depression, concentration difficulties, brain fog, headaches, migraines, palpitations, dizziness, fainting and syncope episodes, hypoglycemic attacks, chest pain, flushing, unexplained full body or partial body rashes, hives, itching tongue and mouth etc. I thought it was completely ‘normal’ to feel this way after I ate and continually throughout the day as I didn’t know anything different – I know, crazy – but how is a person supposed to know that it isn’t ‘normal’ if you’ve just been in one body your whole life feeling a certain way? What is considered ‘normal’ to one person could be completely ‘abnormal’ to another.

Continue reading ““Oh, You Can’t Eat That?” – My Food Intolerance Journey”

Homemade Blueberrytastic Muffins

Laura Lee’s Kitchen by Mind, Body & EDS 

THE BEST gluten-free, grain-free, dairy-free, low-FODMAP and vegan friendly blueberry muffins you’ll ever taste!

This is one of my absolute favourite ‘go-to’ recipe that are ideal for on-the-go breakfasts, ‘pick-me-up’ midday snacks or something to delight your sweeter side.

Continue reading “Homemade Blueberrytastic Muffins”

‘Patient Story’ Speech

“All my stories from the last eight months tell a story…my scars are a reminder when life and EDS tried to break me, but failed to. A story that says, ‘I survived’.”

Continue reading “‘Patient Story’ Speech”

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UPDATE: First Post-Op Visit Results

My Father and I returned from our three week visit to Washington D.C. and Virginia at the beginning of December. The three weeks were filled with many post-op appointments, check-ups, physical therapy rehabilitation, vision therapy rehabilitation and even a White Tie Gala event! To say it was a busy time for us is an understatement – only now I am beginning to feel the exhaustion and experiencing a ‘flare up’.

Continue reading “UPDATE: First Post-Op Visit Results”

Change: The Battle of Acceptance

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“You let time pass – that’s the cure. Change can be difficult to accept. You survive the days. You put one foot in front of the other and get on with it. You float through the weeks and months wondering if your life will ever go back to what it used to be. And then, one day you find yourself alone on a bench in the sun and you close your eyes and lean back and you realise that you’re okay. You realise how far you have come. You realise you’ve just fallen onto a different path leading you to your true destination. You realise, ‘I can do this’. Behind every smile there is an untold story. Sometimes it’s a mask to hide pain and suffering. Sometimes it’s a true reflection of happiness.”  • Laura Lee •

Continue reading “Change: The Battle of Acceptance”

Jetting Off to D.C. 

Time to jet off back to Washington D.C. for my first official post-op neurosurgeries and brain surgery check-ups! I’ll also be attending some Gala events and will update you on my patient advocate role soon. Keeping my fingers and toes crossed that our 3 weeks stay won’t turn into an unexpected 9 months this time around…Wish me luck! 🇺🇸✈️

#FourMonthCheckUp #Neurosurgeries #BrainSurgery #EDS #SpinalFusions #Chiari #ICH #BrainClot #Stents #HealthJourney

A Big Thank You To PESGB Publishing & Spreading Awareness Of My Appeal

Source: Appeal for critical lifesaving neurosurgery for 23 year old PESGB Member Laura Sylvester

I would like to thank PESGB (Petroleum Exploration Society of Great Britain) for publishing and spreading awareness of my unexpected Second Critical Lifesaving Neurosurgery Fundraising Appeal and my rare genetic disease, Ehlers Danlos Syndrome. Continue reading “A Big Thank You To PESGB Publishing & Spreading Awareness Of My Appeal”

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