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mind, body & EDS

| living with a rare, invisible, genetic disease |

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Update

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 •

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”

Dealing with Pre & Post Surgery Anxiety

Having a total of 5 surgical procedures all within a 6 month period (3 major neurosurgeries, a lumber puncture and brain surgery), there is no doubt that both my mind and body have suffered from severe anxiety and stress. Prior to having all these surgeries, I had some experience when having bilateral knee surgery (both knees done at the same time) in 2012. So I thought going through surgery once before meant I would be as cool and calm as a cucumber – but I can honestly say that each surgery was a completely different experience and is just as nerve-wracking.

Continue reading “Dealing with Pre & Post Surgery Anxiety”

Lumbar puncture, road trip to Virginia and tornadoes!

Apologies to you all for not posting an update this last month. It has been a pretty hectic time for me and I have been unwell for several weeks. I am finally feeling a little more myself again and have some news to catch you up on!

Continue reading “Lumbar puncture, road trip to Virginia and tornadoes!”

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

#CareForLaura Wristbands – Show Your Support

As a “thank you” to those who have helped Laura on her way to a new life, there is, on offer, a token of appreciation in the form of a #CareForLaura wristband.  Wearing one will be a reminder of what has been done, and what continues to be needed, for Laura and her family. If you have not donated yet and wish to contribute to Laura’s Third Critical Neurosurgery (12th April in Washington D.C.), please donate a minimum of £10 to Laura’s medical crowdfunding YouCaring site and you will receive a wristband (please read details below).
Continue reading “#CareForLaura Wristbands – Show Your Support”

RECENT UPDATE: Possible 3rd Neurosurgery for Laura

Unfortunately, we found out in the follow-up appointment this past week that I have a herniated disc between C6-C7 vertebrae and further instability with overstretched ligaments between C6-T1 vertebrae (due to my EDS). This is causing me significant pain in my neck and will most likely need to be operated on. Continue reading “RECENT UPDATE: Possible 3rd Neurosurgery for Laura”

QUICK UPDATE: Discharged from hosptial

My Second Lifesaving Neurosurgery on Wednesday 17th February went well, even though there were some unexpected additional surgical procedures that were required during the operation to help improve and preserve my quality of life. Unfortunately, I have lost a significant amount of sensory function in my lumbar spine and lower limbs and control of my bladder/bowels. However scary this is for me at the moment, we are hoping these sensory function nerves have not been permanently damaged already (pre-surgery), and that instead it will heal with time – but this is very uncertain. Continue reading “QUICK UPDATE: Discharged from hosptial”

#CareForLaura Campaign Reaches Target!

At the beginning of December 2015, I was told that I am in critical need of lifesaving neurosurgery that could only be done by the world expert in the USA. When my family and I first heard this news, we were not only shocked by the severity and complexity of my damages, but also by the ginormous price tag it came with. How on earth would I be able to raise over £75,000 in just three weeks? Continue reading “#CareForLaura Campaign Reaches Target!”

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