Saturday, September 23, 2017

2 Years Later...



So, it's been awhile! But, I moved here in August 2015 and have been fairly dormant (via this blog) since then and I'm back by popular demand. 

I think over the course of the last two years, I have experienced every single emotion on the spectrum from completely miserable to absolutely euphoric (in the least schizophrenic way possible). For those of you looking for a very quick catch up and are new to my blog, here's a very quick synopsis of my life over the last 5 years:

2013: Burnt out from work after working insane hours. Started getting mysterious (and horrible chronic pain). Had to leave New York from my job as a design manager and move in with my parents. Bad nights turned into bad months. Bad months turned into a bad year. Gained a shit ton of weight. Finally, after being on the brink of completely losing my mind several times, got a diagnosis from a brilliant neurologist (Dr. Gerwin) at Johns Hopkins: Chronic Myofascial Pain Syndrome, Ehlers Danlos Syndrome-Hypermobility, Mast Cell Activation Disorder, Hypothyroidism, POTS (which came about a year later but just lumping it in, because why not). (See tab above for explanations.) Creep back to the beginning of my blog for all the details of my life and tips for how I dealt with it.




2014(ish): This year was mostly a blur. Felt like a human guinea pig for most of it. Lots of trial and error of medications, therapies, injections (read as: nightmare), tears, fighting with my mother. Things got worse before they got better and eventually started getting better. Saw a fantastic geneticist at GBMC (Dr. Francomano) who now runs EDNF (see charity tab). Hung out with my dog a lot. As things got better, mother suggested taking some photoshop classes once in awhile at community college. Three days later (after furiously researching), I suggested a Masters in London. After much debate (and possibly a powerpoint), they agreed. This was the best test to try my independence, get back on my feet (with great assistance) and try to get a job. I got into my top choice program.



2015: Just terrifying. So much planning, so much researching. Lots of OT, lots of doubting and existential crises. "Could I handle it? Was I going to be okay?"



When I moved in August and started classes, it was a whirlwind of anxiety and adrenaline (which is apparently what I'm 97% comprised of). Everything hurt. Everything. I was pretty much secretly wearing braces all the time.
Me and my dad's first afternoon tea.

Two days a week was even rough, but I LOVED it. I loved London, I loved my new friends, my masters program. But the change was completely overwhelming. It was hard to switch my brain after two years of watching Family Guy to do real work again. But I had a disability advisor and a contract of disability benefits with the school and the city, which I will talk about later in a separate post. I was scared of how the people in my class would respond to my special "handicap" treatment without seeing physical ailment. Turned out, nobody cared and the only two other Americans in my class were also on disability.

Girls from my program and I out for a GNO karaoke night.
Overtime, things got easier and a piece of me started to feel like my old self. I thought, if I'm going to have to deal with all the misery my health brings me, I may as well love every other aspect of my life--and I did (still do). Dealing with social stuff and containing my over-ambitiousness and overly-opportunistic personality was hard and still is. My best friend came to visit. We went to Paris. I had a pain related temper tantrum, but other than that, an amazing time.


2016: The best and worst year combined thus far. Started consulting for my future (/current) boss for a collaborative unit for my MA. Things got BUSY. I took on a lot of work and had two other massive classes and my thesis proposal. Went to Istanbul for fun/work with my mom. Went to Moscow to do a photoshoot for a friend/school project. Went to Normandy to stay at friend's country house for the weekend. Boss offered me a conditional job offer for my dream position (pending I passed my MA, we got the work visa and I could keep myself healthy.) Presented my thesis proposal and promptly ended up in the hospital with pneumonia after. 

Istanbul with momma.
Photoshoot time.

Dinner in Normandy

My adorable friend Thomas visiting and entertaining me in the hospital.

The hospital came at the worst time. This was right when I was supposed to write my thesis. Boss came to bring me flowers and told me to go home for a month to relax. And I felt better, but once I got back continued to work and write my thesis. On New Year's Eve, I finished my thesis and graduated with Merit. 




2017: Started working (without writing--which was a total luxury). Moved to a new flat (which was completely exhausting. Made it on to the BBC to talk about snail venom as a pain analgesic (...who knew!?) Am almost working full time--I am slowly working up to it. My boss has been really lovely and flexible about the whole thing. Work has, so far, been really beneficial. I'm able to mostly work from home and keep to a schedule that fits for me. It's helping me manage my time and get myself in a routine to take care of my pain at the same time. This is something I'll talk more about later. 



But, just in the last few weeks, I've gone to Paris for work, done a photoshoot (with another one the week after next) with some very exciting things coming. There are honestly some hard bits too but I am really starting to feel like a semi-normal person. I am still having pain all the time and take all the same medications and still do monthly injections en masse, but overtime it seems like things are generally getting better.

I have a million things I want to write about with different tips, products, lists, funny stories and insight I want to continue to talk about. Sometimes I still genuinely can't believe I got here and didn't faint and fall in a ditch somewhere. So now that things are calming down, there should be plenty to come!

xx, E







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