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

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

My Shitty Experience With Taking Drugs for Pain (As Told Through Chronic Illness Cat Memes)

Over the last two years, I've made it pretty clear that I have a love/hate (pretty much all hate and no love) relationship with drugs.

Not sure why my body hates me, but like everything else, it's something I'm slowly getting to the bottom of.

Just in the last year and a half, these most of the drugs I've tried. (Please note under any normal circumstance would I ever be posting my drug medical history, but a lot of people with fibromyalgia/EDS/MPS/MCAD --everything I have-- usually has sensitivities and intolerances to a lot of things.)

Drugs with an * behind them show that I had side effects. Drugs with multiple * mean I probably thought I was dying. 

Side note: I was dumb and didn't write down what they were. 

If they are on the list without an * it means they didn't give me side effects but didn't help.

*Note: I know some of these are not in the right categories. I took this right from the notes in my phone.

Anti inflammatory:
Mobic
Celebrex
Flector patch
Naproxen

Muscle relaxers:
Soma
Flexeril
Robaxin
Tramadol*
Tizanidine**
Neurontin/gabapentin*

Benzo's:
Valium
Xanax
Ativan* tolerance
Klonopin

Sleeping pills:
Lunesta *
Ambien - 10 mg with phenergan 50 mg
Sonata*

Anti nausea:
Phenergan- must eat with food, 50 mg in combo with ambien 10 mg

Pain killers:
Vicodin *****
Tramadol*****
Percocet**** 
Hydramorphone***

Cymbalta***
OxyContin****
Nucynta ****
Opana****

Morphine****

Antidepressants:
Wellbutrin***
Zoloft *
Lexapro *
Amiytriptyline****
Lyrica***
Prozac *
Doxepin****

Misc:
Tylenol
Advil
Aleve
Ibuprofen
Medrol dosepak
Capsaicin cream
Benedryl
Melatonin

So, doctor friends/family (or anyone with common sense), you can start see the relationship of general categories that weren't working my favor. I know there are more drugs to add, I just can't even remember what they are. I have irrational fears about going to the ER because doctors will probably just give me painkillers anyway. My PCP has actually told me when I need to go to the ER I shouldn't go to the ER.

As I'm sure you can sense from this list, I don't really have much to take in the way of pain at all. Especially break through pain. These are the questions I am asked the most about. The only things I can take and try to take as little as possible are Toradol (an intense NSAID that rots in your GI tract--I get LECTURES FROM EVERYONE about taking this--you're not supposed to use it for longer than 5 days after surgery), Ativan (which I previously had a mild addiction/withdrawal from) and Robaxin. The last two I take in conjunction with Ibuprofen. Most of the time, these kind of take the edge of. 

With really bad pain, nothing does. And trust me, there have been times in nights of desperation with really bad that I'm almost desperate enough to try more painkillers but ultimately logic strikes and pass on it. I end up just trying to drug myself enough to pass out. This seems like the best solution (other than throwing myself off a bridge or trying to convince someone to take a hammer to my head).

I have a whole pharmacy of drugs at my house. 

I have a several giant boxes of all the drugs I've tried. Slowly I'm starting to get rid of all of them. Or do this. (Because I think it'd be hilarious.)

I also use heat/cold, China Gel, TENS unit, compression wear, a custom pain salve made from essential oils, trigger point/foam rollers, my U shape body pillow, epsom salt baths, food (hence the weight gain), etc. (Almost all these things can be found through various posts with links on my site.)

You may be asking yourself "Erica, were painkillers really that bad?" and my answer to that would be "Yes, yes they were." Here's a few things that would happen when I took pain killers or antidepressants:

1. extreme nausea 
2. perpetual vomiting 
3. throat closing/trouble breathing
4. rashes
5. hives
6. rapid heart beat
7. extreme dizziness (to the point that I couldn't stand)
8. feel like bugs were crawling all over me
9. ridiculously bad IBS
10. more spasms
11. dry mouth
12. blurred vision
13. headaches
14. night sweats/nightmares

When I went to see my geneticist at GBMC, we could tell some of these were allergic reactions and some were something else, so she ordered me a Genelex Youscript Test. It's a pricey one, but luckily my insurance covered it. It's a swab cheek test that analyzes how well you metabolize certain drugs. It's very confusing to read, even for most doctors but a lot of the reps there are very good at explaining to the least science-y person ever. But, no surprise, I was an "intermediate metabolizer"/slow metabolizer for the phenotype that includes many painkillers and antidepressants. According to the Youscript site, this is the definition of an intermediate metabolizer:

• Intermediate Metabolizer. An intermediate-metabolizing enzyme is considered to be less active. It doesn’t break down a drug as completely as a normal metabolizer, which means you might require a lower dose. A lower dose prevents the unmetabolized drug from building up in your body and possibly causing side effects.
• Poor Metabolizer. A poor-metabolizing enzyme has very low activity. It is possible to have side effects even with a very low drug dose, because the enzyme is very slow to break down the drug.

Generally, once most doctors find out you're an intermediate metabolizer  (if they even know WTF it means) they will never prescribe any drugs that fall into that category. It's hard based off the information they give you form the results to figure out what are intermediate metabolizers and what aren't. The service from for Youscript told me with my results, if I took something that was an intermediate metabolizer for me over a decent period of time, most of the drug would stay in my system since it wouldn't be digested and become toxic to me, even resulting a potential stroke. Now I have software by Youscript where I can plug in all my meds I'm on with the meds I want to try and see if there are interactions or if they a bad metabolizer for me. It's getting to be a little too much fun for me. 

Having the kind of pain I have with no meds is really hard sometimes. I have to go the "natural" way out of force. Most people that have the same diagnosis and pain I have are on SERIOUS meds (like morphine 24/7). If I had drugs that worked my days would be a lot less limited and I wouldn't have nearly as many sleeping problems if I had something to help my pain at night. Then, I wouldn't need to be on Ambien. I'm at the point where I've pretty much tried everything and not much is left except medical marijuana, which although I am not a smoker, I would try it if it helped. I am willing to try anything as long as it doesn't kill me. 

I am also looking into a Butrans patch. It is an opiate but it would be a patch so it would enter through skin systemically. I wouldn't be *thrilled* about being in pain killers 24/7 like I would with this patch, but I really think, if it actually helps, it would improve my quality of life. I don't really have much of one right now, so I'm still really trying. 

One thing I am very excited about is a product called Quell I ordered. It is a wearable pain relief system that you wear around the top of your calf. It uses some kind of neurotechnology to send signals to the brain through electric waves to change your pain path. There's a chance it wouldn't work, but it's worth trying. It can even tell when you're sleeping and you can adjust accordingly with a compatible iPhone app. Hopefully it'll arrive in June! 

PS. I found this "chronic pain workout" and I really enjoyed it, so I am sharing it here.