"They never thought I'd survive..."
Hi, my name is Sarah, originally from Edinburgh. I'll try to keep it brief, I've a bit of a mental story...
I was 31, travelling for a 'year' in Australia in 2011, had been there just a couple months and got the worst headache ever. The local GP thought it was just an ear infection, 7 weeks of constant headache later I ended up in the ER and was diagnosed with a 5 inch blood clot in my brain. That started a 2 year medical journey in the hospital in Perth, Australia. The second blood clot was in my right arm and chest, over 18 inches. The third was in my brain again, 11 inches this time. The fourth was again in my brain but tiny. They finally diagnosed me with a super rare autoimmune disease called "Non-Parenchymal Neuro-Behcets Disease". I started chemotherapy to prevent my immune system from continuing to attack my body and ended up with sepsis and nearly died. They never thought I'd survive long enough to leave the hospital but somehow after 18 months things started to calm down a wee bit and I got discharged and made it back to California where I now live. Chemo is working to keep the major damage at bay but comes with its own set of complications. I went back to work full time in 2017 after almost 6 years of not being able to. Recently I got diagnosed with a brain aneurysm also caused by my disease, so that's my current challenge.
Things that helped me cope during the peak of my illness were getting an 'off road' wheel chair so people could still take me out on trails even though I couldn't walk. Walking along the coastline in Perth when I could walk again and just seeing the ocean. And watching ridiculously cheesy TV shows that made me laugh.
I'm not sure I'll ever overcome my disease as there is no cure but I value the small wins like walking again, going back to work and being able to hike and enjoy nature when I'm feeling well. I was an amateur athlete before the big medical meltdown, something many doctors have stated as the reason I survived. I try to be as active as I can still so I can continue to beat the odds. The picture above is from my first time snow shoeing, 9 miles in Yosemite National Park. Just stunning.
Words of encouragement for others - don't believe the 'stats' doctors will quote you, everyone has a chance to beat the odds and you never know what the outcome will be unless you fight. So fight like hell, oh and take your meds!
This experience has given me the ability to help and inspire others. Something I never thought I would be. No one ever looks at me, not even doctors when I first meet them and thinks I've survived three strokes, sepsis and hopefully a brain aneurysm fingers crossed.
I wish all healthy people knew how fragile life really is and that you should take every opportunity to get outside and brave the elements when you can. Nature is therapy.
Thank you for sharing our stories.
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