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mind, body & EDS

| living with a rare, invisible, genetic disease |

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Fundraising

Reflection on current struggles in life

Today has been one of those days where I doubted myself over a million times. The last few months I’ve felt this way for completely valid reasons. I’m not saying this for sympathy – I’m saying this for reality – to show you that on the inside I’m just like you. Yes, I may be smiling on the outside, but I’m not invincible. In all honestly, I don’t always have it all together and still have moments when I focus on the difficult parts of life.

Recently I’ve been hit with a lot of disheartening and disappointing news relating to my health (new diagnoses/more surgeries), my graduate job falling through which consequently meant my moving back to independent living in London didn’t happen – this domino effect has caused a tremendous impact, leaving me feel lost and full of grief.

It’s naturally re-opened a lot of insecurities I once had that I’d put to bed a long time ago through many years of CBT (cognitive behavioral therapy), trauma and pain management therapy. Truthfully, I’ve had a lot of days this past month where I’ve felt like I’m not enough. Where I’ve felt like giving up. When I’ve questioned myself and doubted my ability to juggle all areas in my life. I admit that I’ve found this difficult to comprehend because my ‘life plan’ has just crumbled in front of me – or so I thought.

Recognising these thoughts and feelings doesn’t mean you’re failing – it means you’re LIVING. I’m not saying this for sympathy – I’m saying this for reality. We’re not invincible.

As humans, we tend to live our lives in the “fast lane” so forget to take the time to really stop and honour how far we’ve come and accomplished. We tend to reach a goal and then fill our brain with worry about how we’re going to accomplish the next, and so on.
It’s learning the ability to switch your mind from “what’s going wrong” to “what’s going right for me?” mindset. Reminding yourself that you’re doing the best you can, that you’re really living ‘life’ for what it’s worth.

So continue to turn the page, be motivated, be curious because the biggest mistake you could ever make is to live life like you’ll get another chance to experience it all again.

Be open to new opportunities and change that may cross your path unexpectedly, because maybe everything you’ve lived through was all meant to take you to this point; giving you the courage to take the leap of faith, coming to terms with who you are and who you want to be.

Before you give up, learn to make up your mind about what YOU want out of life. Because you’ve already survived everything that has been thrown at you so far, and you’ll survive it again and again.

It’s time to stop letting our minds play games and begin living our lives through truth, gratitude and appreciation; to be proud and honour the path that got you to today 🙏🏼🦋💫 • Laura Lee •

Appeal Published in ‘Upstream’ Global Oil & Gas Newspaper!

‘Upstream’ is an international global oil and gas newspaper and in this weeks edition published today, Friday 13th May 2016, my appeal of needing to medically crowdfund £300,000 due to my recent diagnosis and surgical treatments needed for my CVST Brain clot, appeared in the “Cuttings” Section. I am so grateful for having the opportunity to have my appeal published  globally and spread awareness of my rare genetic disease, Ehlers-Danlos Syndrome & PoTS. A huge thanks to ‘Upstream’ newspaper and to those who made this get published happen!
Continue reading “Appeal Published in ‘Upstream’ Global Oil & Gas Newspaper!”

What an incredible success this concert was raising a grand total of £2105!!! I can’t thank the Frensham Heights Peripatetic Teachers enough for their efforts in putting on fantastic performances from such a range of musical genres – I hear and have seen from some videos. My mother and I wish we could have been there to enjoy such a talented range of musicians.

UPDATE: Raised Goal to £300,000

Due to my recent diagnosis of CVST (Cerebral Left Vein Sinus Thrombosis) Brain Clot, I am needing to undergo further surgical procedures and take medicated anticoagulant injections twice daily. We have needed to raise our goal target to £300,000 because of the unforeseen urgent medical treatment I need which includes: a haematological blood clot study examination, lumbar puncture on Friday May 20th to test the CSF pressure, and most likely brain surgery to remove the clot and put a stent in to prevent any further clots from forming in the future. This total also includes the 3 critical and lifesaving neurosurgeries and post-op rehabilitation expenses. Every little counts. If you are able to help in any way by donating clicking here, sharing my updated story, and helping to spread awareness of EDS & PoTS, then please do so. We would be forever grateful as a family so I can finally be brought home to England to recover further and resume my MSc at Imperial College.

Third Critical EDS Neurosurgery Appeal Video

“You gain strength, courage, and confidence by every experience by which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along.'” Eleanor Roosevelt

THIRD CRITICAL NEUROSURGERY 12th APRIL CONFIRMED

PLEASE SUPPORT BY DONATING HERE. I am in need to medically crowdfund £190,000 for all 3 EDS neurosurgery medical expenses and rehabilitation treatments.

Since recovering from my second surgery for Tethered Spinal Cord Syndrome done on 17th February by specialist EDS neurosurgeon in Washington DC, I have been undergoing further specialist clinical tests and MRI’s for my lower neck. I have been losing sensory function of my left arm throughout this past year and the specialist Upright MRI equipment they have here in the USA has finally revealed that I will unfortunately be needing a 3rd neurosurgery on Tuesday 12th of April 2016 in Washington DC by the same specialist EDS neurosurgeon. Continue reading “THIRD CRITICAL NEUROSURGERY 12th APRIL CONFIRMED”

Charity Chestwax Fundraiser by Imperial RSM for #CareForLaura Appeal

Imperial RSM (Alex McCormac) will be undergoing a fantastic fundraiser of a “Charity Chestwax” on the day of my Second Critical Lifesaving Neurosurgery, Wednesday 17th February! Continue reading “Charity Chestwax Fundraiser by Imperial RSM for #CareForLaura Appeal”

Cooke’s Cape May Photography #CareForLaura Fundraiser

A dear family friend of ours, John Cooke, lives in Cape May, New Jersey which is one of the country’s oldest vacation destination resorts, rich with history, beautiful Victorian buildings and award-winning Atlantic beach scenes. Continue reading “Cooke’s Cape May Photography #CareForLaura Fundraiser”

Second Critical Lifesaving Neurosurgery Appeal Video

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