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

Finding the perfect ankle brace...

...is like searching for a needle in a haystack.

And lucky for you, I have done the dirty work. You're welcome.

I know everyone with Hypermobile type EDS is different. Anyone can be ridiculously flexible anywhere, but most people are especially flexible in specific parts of my body. For me, it's my lower half, especially my hips and ankles. Fun fact/party trick: I can turn my ankles 180 degrees behind my body with little to no effort. I didn't even know or realize I could do this until I had EDS, but I started learning very quickly that if I pivot quickly without thinking, I do it all this by accident all the time. And it hurts. I started to feel like I was rolling my ankles on nearly a daily basis--not even from exercising--just daily life being a klutz. I was and am hoping I never have to wear an ankle walking boot, like many EDS-er wear 24/7.

Before I told my geneticist about this, I started looking online and again, with the theme of this blog, came up with little to nothing. My ankle braces started out mild and continued to get crazier and more intense as I found new things. My ankles are so unstable that I am convinced there is almost virtually nothing on the market to keep them in their places, except ONE brand, which I will share. 

Here is the ankle brace spectrum/my ankle brace journey.

MILD (and my first ankle brace): McDavid Classic Lightweight Ankle Brace

Not even close. Not. even. close. This brace did little to nothing to stabilize my ankles from rolling side to side. Almost laughable.

MEDIUM ASO Ankle Stabilizing Orthosis Brace

I thought I'd step my game up considering these are lace up, plus the s-wrap around the ankle, plus the strap around the top. Turns out---nope.

MEDIUM-HOT At this point, I had seen my geneticist, who agreed I needed a brace. She recommend the Bauerfeind MalleoTrain S Ankle Support

My geneticist is really into Bauerfeind (a German product) and honestly, the quality of their products is not amazing but comparatively to everything else on the market, it is the best. The reason this one doesn't go up a full level in severity is because it's not very different from the last and I was definitely in between sizes. The sock feels like a compression garment. But the size 2 felt like it was cutting off circulation and my toes were turning purple but the 3 felt so big it felt like it was doing nothing. I also felt like the strap gave little to no support as well. I wasn't asking for a brace to completely hinder my ankle moving my foot from side to side, but I would at least like it to prevent my ankle enough from rolling it. This didn't do that. At all. 

HOT Bauerfeind Malleotrain Plus Ankle Support

So, from pictures, this one may not seem that different. Is it the perfect brace? No. But Bauerfiend had greatly improved their product from MalleoTrain S. It may not be easy to see in this picture but they have added an extra piece on each side of the ankle that supports the outer part of the ankle bone. For some reason, that made a big difference. Strangely enough, the size 2 that felt so shitty with the last Malleotrain feels much better with this. It's still not as stable as I would need, but it does comfortably fit in an athletic sneaker, so I wear them now for exercise and extended walks. It actually also feels more stable in a sneaker as well, so finally, we have a KEEPER. 

SUICIDAL (/the ultimate ankle brace) Bauerfeind Malleoloc Ankle Brace

This brace was probably made by some evil genius in Germany. This thing is 100% pure ridiculous--in the best way possible. While it is sadly too thick on the sides to fit in an athletic sneaker, it can be worn with other shoes like Converse, etc. This brace actually has foam on the inside the contours to your body. When you wrap the "S" strap around your ankle, it literally has a lock on the outer side so your ankle is just about as stable as it gets. My foot pretty much cannot roll at all. Only up and down--as a foot should. I don't wear this out. I wear them around the house when I'm home and they help. I also wear comfy old long song underneath (that I've cut the toe off of) and stole from my dad. (Sorry Dad.) Yes, they are silly and ridiculous looking but it saves me a lot of hassle so it's worth it.

So, these last two are the two I own and wear for different reasons. Bauerfeind, if you're reading this, I will be the next bionic woman (probs) so feel free to make me your spokes-girl. I look good in blue. 

(It's a Beyonce day.) 

EDS and PMS (heh.)

Things that don't occur when you don't have chronic pain/Ehlers Danlos Syndrome: already atrociously bad PMS pain increases x2390583409853098. 

Who do you see when this happens? A reproductive endocrinologist, duh. (A subcategory of GYN--also its own mindfuck.) Don't feel bad if you don't know this--I didn't either. 

I started noticing over the last 6 months, I was starting to have a serious increase in pain, nausea, dizziness around my 10 day mark, 5 day mark and 3 day mark (I know, specific.) . It would always foil my plans of exercising, doing errands, attempting to live like a somewhat normal human being, etc. 

Ironically, like I'm finding with most things, most of my "hunches" (and maybe what peers and naive observers would consider "hypochondriacal observations") turned out of course to be a real thing, like usual. After aggressively researching and consulting with reproductive endocrinologist, I found that progesterone is a hormone that loosens the joint, understandably, for childbirth--and it's what has been aggressively fucking me over (for lack of a better phrase) for months. 

(Side note: after some research and phone calls, I found out who all the (slight sarcasm) reproductive endocrinologists were in the area and one was the father of a good acquaintance from high school--who no doubt, wants to be in fashion design. In exchange for some advice, I got an apportionment within a week for what usually takes months! It's all about the craftiness, people. And proof that knowing a thing or two about fashion does come in handy in very odd scenarios periodically--no pun intended.)

Anyway, for all the information I overloaded this poor doctor with, he was incredibly sweet, accommodating (and like most new doctors who are totally shocked how self aware I am and the depth of my knowledge on this particular subject), mildly overwhelmed. His first comment after my 15 minute long spiel about me and my mother's conspiracy theory about progesterone, EDS and all over my shitty metabolic reactions to medication/birth control, his first comment was simple and something I totally missed...because when you're so detail oriented you miss the big picture.

Him: "Well do you even want or need a period?"

Me: (Without thinking twice about what was about to come out of my damn mouth) "HA.. NO! I would have a hysterectomy if I knew I didn't want or couldn't have kids in a heartbeat!" 

Ah, the plight of an oversharer. 

He explained to me that I could change my Nuvaring every 3 weeks and use a new one right away to skip all the wild hormone spikes I was desperately trying to adapt to. Hopefully just exchanging it after 3 weeks instead of for will keep everything stable and I'll never need to deal with periods ever again. And, bonus points, I don't have to go off of my birth control!

His back up plan: a Lupron Depot injection which is pretty much an injection that shuts down your ovaries and uterus for about 6 months aka a temporary hysterectomy. Seems terrifying. 

The catch? Instead of PMS pain, you get to become menopausal at the ripe age of 25! Hard pass on that one. Explaining hot flashes on a first date is something I just can't mentally handle right now. And I am trying my best not to screw myself over before I leave for London WHICH AS OF NOW IS SEPTEMBER 6! 

One step closer...

Chronic Pain Battery Life

Good and realistic visual explanation on the "battery life" of someone with chronic pain.

London College of Fashion

Guys, I got in to my top choice school in London! I will be moving in August and getting my MA in Fashion Design Management at London College of Fashion. Obviously a lot has been going on between school, my surgery and my diagnoses--I will update as soon as possible on all fronts. I'm just taking a second to bask in this moment. Fuck it, I'm so proud of myself. Not just for getting into school (because that was a huge feat for me anyway) but just getting to this point.

Just goes to show if you listen to "Flawless" enough by Beyonce, all your dreams can come true.

I'm such a cornball. WHATEVER. 

Issues With My Tissues and Getting Into My Masters Program

Hi all.

It's been a wild week. First off (and the best news), I can finally say I have officially gotten in (so far) to 1/2 universities I applied to. I may have a chance of even getting a full ride scholarship. I'm still waiting to hear back from my top choice.

Just FYI to the other chronic pain people, I had listed myself as disabled for this school. You should know that during my interview not one question was brought up asking me about my condition. I love that. With the disability support, I will get the accommodations I need in case I have a flare and can't make to class, have to get an extension for a test or paper. I don't know how I'll need to be honest but it's just a security blanket at this point. It is immensely comforting to know that it's there. The UK seems to be much more sympathetic to disability.

I WILL OFFICIALLY BE MOVING TO LONDON IN AUGUST. Can you believe it? Can you fucking believe it? After all this time, everything that's happened has finally spiral into good news and something productive.

For the very few I may come across who are considered disabled and plan on studying and living abroad, I will continue to post tips/ideas/suggestions for moving and settling into a new, international city as I figure them out.

The next day, I finally had my first appointment with the top geneticist in the country, Dr. Francomano at GBMC. She was amazing, it was amazing. I was there for HOURS and finally got my official diagnosis: Hypermobile Type Ehlers-Danlos Syndrome (a hereditary connective tissue disorder) with strong suspicion of Mast Cell Activation Disorder. To be honest, it was a little overwhelming and I'm currently not in the condition to go into great detail right now.

There are a lot of explanations I need to provide and tests I will be doing after my breast reduction surgery on February 19th. I will make separate posts about each/all of these things to explain further because, from the people I've told so far, there are A LOT of questions. If anyone reading as any questions at this point, feel from to email me from the "contact" section or post a comment and I will be sure to get back in touch with you.