My New Life as a 90% Normal Human Being: London

Since my move to London, I am entirely positive I have experienced every emotion one (semi) stable person could ever experience. My days have spanned from desperation, frustration and anger to overwhelming happiness to the point of tears.

Regardless of the emotions, this transition seems to be a very good move for me. Admittedly, I am overwhelmed. I am overwhelmed by anything and everything. When you go from literally laying on your back, stuck in a house by yourself for 2 years in the middle of nowhere to starting a masters program in a new country with old and new friends, semblance of a love life and everything else that comes along with it, things tend to be overwhelming. I can't deny between moments of pure bliss have been complete panic attacks and existential crises. But I think any "normal" person with my given conditions (both general and medical) would.

But, none of that matters. I am grateful. I am grateful every time I would out of my gorgeous flat and turn a corner and find myself among some gorgeous architecture or a museum I've never seen before. And I am proud of myself that I got this far. Reflecting on the last two years has not been easy. Rehashing every dark thought I had previously assumed I buried and repressed has been forced out. Turns out I'm lot less together than I thought I was. My doctors have been spectacular. Yes, doctors--all 6 of them. One for everything. Did anyone know that's not a cheap thing to do here...casually have 6 private doctors? Turns out the NHS does not cater to the chronically ill.

London is clean, quiet and (aside from not being able to ride the tube) let's me live at my pace. I don't feel hurried like I did in New York. People are generally friendly and open-minded/progressive about disability.

I feel like I also need to mention the support I've received not just from school, but specifically the people in program. My course leader suggested I share my story with a few people, so I posted my Huffington Post article within our own Facebook group. The feedback has truly humbled me. No one pities me, puts me on a pedestal, or a freak--I am just treated with respect, like a normal human being and, psychologically, that has made a big difference. No one cares (in a good way) that I am disabled- I am just part of the group. Not always feeling the need to explain and letting people just accept me the way I am has been such a relief.

Regarding my pain, there has, of course, still been flares and they never come as a good time (but then again, when is a good time?). But, now I have a handy bag of tricks for literally everything and it's not so bad. My doctors are prescribing all my meds. I am working out my injections. I have had some interviews/meetings with some MAJOR companies. I am also going a group project related to disability, so of course I will be talking about that when it's all done!

Sometimes, I can't deny that I am even astounded by how far I've come. I was just explaining to another person in my program that 2 years ago, I couldn't sit in a chair for more than 10 minutes without bursting into tears from pain. Now I am sitting in chairs for 8 hours, maybe not every day, but I'm getting there. My life has come to as close to "normal" as it can and I am just enjoying it. Of course I am still and maybe will always be somewhat in pain all the time, but now I am making it work to adapt to my schedule and not the other way around. Tomorrow is a sushi party with a few girls from my program (+Cards Against Humanity and Twister---which is made for EDS, FYI), Saturday possibly a date and Sunday is brunch with an old London-born FIT friend.

Once I get a few big projects out of the way, there will be more time to write and more to come on HuffPost. I have so many more tips and hints. I think I have enough information to right a novel at this point...(publishers, feel free to email me.)

All for now, 2:40AM.

xx, E

Dysautonomia International Research Update: POTS, EDS, MCAS Genetics

Dysautonomia International Research Update: POTS, EDS, MCAS Genetics

Hi guys, here's an amazing video from someone at NIH with an update on the link between my now, 3 diagnoses. It has been great here so far and I have been insanely busy acclimating to everything but it's all good news and I promise soon to update you all on what's been happening!

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. 

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...

Beta Blockers AKA God's Gift To Everyone with Adrenaline Issues

This month has been stressful, there's no denying it.

The one underlying theme of this month is "Will I ever fucking learn to tone it down?" How is it possible I ALWAYS over do it?

 Now that I'm healing nicely from my breast reduction (there will be a post on this later), I am prepping for my move abroad for my MA. Now, normally, you would think preparing for school wouldn't be THAT big a task and I've also come to realize most people with Chronic Myofascial Pain, Fibromyalgia, Ehlers Danlos, etc. don't ever just MOVE ABORAD.

Sometimes I feel like I'm insane for doing this. Or maybe brilliant. Either way, it requires a lot of god damn meticulous planning. (This will also be a separate post--I'm backed up, I know! I'll be on this coming month.)

But, with my overambitious tendencies, my ability to continue to "over do it" had been in full throttle this month. My calendar was ridiculous. Somehow, I was acquiring multiple doctors appointments every day, on top of every other daily or semi-daily task that needed to be done. My anxiety was getting really bad.

 Sounds silly and trivial, but I promise going from doing literally nothing for two years but laying down and watching The Simpsons to being out all day, every day is A LOT. People don't understand the amount of energy I expend just trying to keep up with everyone and myself, ironically. I started getting cranky (read as: bitchy) and pain kicked in--I hated the world.

I'm getting better at for a few reasons.

Not trying to share my whole life and routine with the world but as you can see, I am starting to schedule myself "BREAK DAYS". No matter what, I am not allowing myself to schedule appointments or do anything overly tasking on these days. The productive part of me hates myself for it, but ultimately I need this. 

Reiki seems like a ridiculous thing to do but calmed me down to the point that when I left I felt like I just took the best nap ever (which is hard to come by when you have chronic pain) and was literally drooling uncontrollably. This isn't something I would do weekly, but probably monthly or just whenever I needed it. 

But, finally to the subject: beta blockers. A few years ago, my therapist suggested I had adrenaline based stress. A lot of people have questions about this with me. The best way I can explain it is because of the stretchiness from the EDS (that effects everything), my veins are so stretchy that when I'm stressed, mad, sad, happy, pretty much feeling anything, my adrenaline runs wild. I am definitely an adrenaline junkie. But my heart rate is also ridiculous. Last time it was taken down at Hopkins, it was 115 and I wasn't even feeling that stressed! 

So, FINALLY, my doctor let me try beta blockers (helps control the adrenaline) and my heart rate has been resting at 81. It doesn't feel as racy and it definitely takes a nice chunk of the edge off. I shockingly have no side effects from it either. #blessed

But, between the reiki, break days and Metoprolol (beta blockers) I am starting to finally calm down. My pain is better. Moving to Europe still feels daunting but not in the way where you'd find me in the corner of my room crying. 

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.