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

Metaphorically Wrapping Myself in Bubble Wrap

Quick note about why I've been MIA lately...

Has anyone ever planned anything in such detail that they feel their brain may explode? I have been planning this London trip so meticulously that I am getting sick of planning and just ready to do it! But I have to admit and can't deny, that I am quite nervous but also excited to start this new chapter of my life. I'm corny and I always look at everything in my life symbolically. Being able to do this trip means a lot to me because it signifies the sheer determination I've had to pave my own path and come this far. There's always the possibility that, worst case, I can't do it. I can't finish and I have to move home. In any case, I don't think I'd allow myself to get that bad but mentally, I've dealt with the possibility and am prepared.

BUT, if for some reason, there is some other crazy lunatic with rare and chronic pain who happens to stumble across this page and is planning on moving to another country to study for their masters, I have discovered more things from global health insurance down to using paper plates instead to dishes to lighten your load in my course of planning. I am still generally feeling very overwhelmed right now and eventually plan to write out everything I've discovered when it is in fact actually successful. I hope to continue writing for HuffPost once I get some more writing inspiration when I am moved and settled in. I am prepared for this first month abroad to be hectic and most likely painful. I am taking every little thing that could potentially go wrong and think of at least 5 back up alternatives coordinating to the severity of pain. (The following really isn't in any major order--just ideas I've brainstormed that never would've occurred to me before I actually put time into thinking about it.)

ie. dishes
1. one pot meals/secret pinterest board for quick healthy meals with minimal clean up
2. tall chair at the sink to sit
3. take breaks, let dishes soak over night
4. use paper plates, cups, silverware
5. takeout

(This is just how my brain works now.) Solutions to dumb things no one thinks about--unless you have chronic pain. Since I've been diagnosed, I am not used to doing chores so it's something I've worked on with trainers, OTs and sought out the advice of others in support groups online. I don't even know how it happens but every day, for hours (with some periodic Instagramming), I am generally working on this move.

I keep telling everyone for now, I am metaphorically wrapping myself in bubble wrap. I am desperately trying to keep my life stress free, organized, not exercising too hard training, from trying any new drugs or therapies and that is NOT an easy feat-- ie. "You may have SIBO, you should do x test and follow x diet and go on x antibiotics" but it's happening all the time. I am also very concerned my doctors in London may be pretentious and try and change everything from therapies, to drugs to diagnoses. Right now I am comfortable with what I've got and I'm generally getting better, but I anticipate a lot of arguments with doctors. Finally had a medical team here in the States that mostly just let me do what I want and for anyone reading this that knows me, knows I work best that way. I have heard from other people with EDS that many of the medications I take will be strictly limited to me in England and only provided through IV or "in crisis".

As of now, I am staying zen and confident with all this planning, that things will work out if I am smart, don't panic and stand my ground.

xx, E

PS. I'm 99% sure you will enjoy this video.

PPS.

Travel Tips For Chronic Pain I've Come Across Prepping for London

I'm starting to compile a large list of "hacks" for traveling/moving abroad with chronic pain. More will be added to this list, but again, after exhausting Google, I have found no go-to site with a list how to make traveling easier.

Here is a compiled list of a ideas.

GENERAL:

• Plan ahead: don't try to do everything on your trip, get plenty of rest a week or so ahead of time, prioritize the things you want to see, include time for rest each day and the first few days to combat jet lag
• Talk to your doctor: I had discussed with my doctor writing several lists (one for my disability advisor, one to receive a "disability room" at my housing, one for my flight, one for loans and one for the other specialists I will have there). Specifically for your letter to new specialists, it is a good idea for your doctor to detail your current meds, your allergies (especially drug related allergies) and a basic synopsis of your diagnoses and prognoses.
• Buy travel insurance: This is a given. If you are too sick or in too big a flare to go, things always need to be cancelled every so often and you'll want your money back when it does. (This may also require a note from your doctor.) 
• Don't change meds and/or therapies a few weeks before leaving.

FLYING:

• When booking your flight, get accommodations. Just do it. It'll make your life easier. The key is to spend as little energy as possible on your flight so you can enjoy your vacation/new place of residence. Get wheelchair service in the airport--you will be able to skip lines to board, check in, etc. Ask for aisle bulk head seating (the seats in the front of each class with more leg room). See if they can give you an upgrade--I got one for business class. 

• Medication: ALL medication you are bringing should be packed in a carry on. If you are going for 15 months like I am, you will most likely need a carry for just your drugs. At this point, you can use your doctor's note and call the airline's medical clearance to get more carry ons and check in bags for medical equipment, drugs, etc. Get all your drugs from a place like CVS Caremark that can give you all of them in advance. According to British Airways, customers and TSA will not have problems with me bringing a carry on bag of drugs and equipment like a TENS-Unit (as long as I also have the manual). 
• Take breaks to walk up and down the aisles so you're not sitting constantly. Lay on the floor if need be. (I asked.) 

• Get a direct flight. Seriously, going budget is not worth the pain. Avoid layovers. 
• Drink lots of water! Bring an empty water bottle to fill up once you are at your gate. 
• Try to reduce stimulation and bring comfort items. Noise canceling headphones are a godsend. Sunglasses, a blanket, a really nice neck pillow, etc. 
• Pre-medicate before your flight. You will be happy you came prepared!
• Dress comfy and wear lots of layers.
• Give yourself LOTS of extra time at the airport (added breaks).

PACKING: 

• Start early. Since you need to rest the week or so before leaving, I have started slowly packing now, a month or so before my vacation. I know this may sound silly to some, but it makes me feel less stressed, since I am leaving for a year and still need to get a lot of things.
• Make a giant list and check things off as you go through so you don't forget. 
• If you can afford to, bring creature comforts from home like a good pillow, equipment used for pain management, splints, circulation socks,pain salve (depending on size), icy hot packs, eye mask, etc. 

ONCE YOU'RE THERE (IF YOU'RE MOVING):

• Find all the things you'll need around you, who and what delivers, and how much. I know all the closest grocery stores, dry cleaners, pharmacies, hospitals, etc. I've also looked up where to find caretakers if I would ever need them.

• Get all your new doctors' appointments set up before you go so you can get settled right when you get there. 

• In London, there is Amazon UK Prime. I plan on ordering all my medical equipment to arrive perfectly the day after I move in so it's less work I have to do later. (I've made a Pinterest secret board with links to all the things I'll need to buy when I move.) 

Like I said, I haven't done the trip yet so I will change/add/delete accordingly as time goes on.