Interview with Axis Dance Company About EDS + Fashion

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ERICA SIEGAL - EDS WARRIOR, FASHION MAVEN, AND PRODUCT DESIGNER

September 1, 2015

Erica is 25 years old and works in fashion (design management/product development). Erica loves food, puppies, travel, art, design, and especially fashion. She doesn't let the fact that she's been diagnosed with rare and chronic pain, including chronic myofascial pain syndrome, Hypermobility type Ehlers Danlos syndrome, Mast Cell Activation Disorder and hypothyroidism get in her way. 

AXIS: What is biggest misconception when it comes to your illnesses? 

ERICA: This is a toughie! Generally, it's hard to have a misconception about it when 90% of people have no clue what it is, especially when you continue to explain your diagnoses further, like mast cell activation disorder. That one is almost ridiculous on a comical level to explain to just any random person. I just read an article in Elle that 1 in 150,000 have it. Crazy. Anyway, for the 10% who are clued in, I think when it comes to EDS, most people know it's a genetic connective tissue/collagen disorder on the surface, but what most don't realize is that it affects 11 different systems in your body. You think of connective tissue, most people just initially think "Oh, her skin is stretchy and maybe her joints." No. Some of the systems it affects are circulatory, endocrine/immune, lymphatic, reproductive, digestive, etc. You get the point. You end up having all these really obscure medical issues that no one really thinks about. If something strange happens and I call my doctor and he's always like, "Yep, probably another EDS thing!". It's important to remember, everything is stretchy, even down the veins.

What is your favorite thing about your work in fashion and product design?

My favorite thing about fashion and product design...ugh so many things! It's one of those things where I still get butterflies in my stomach just thinking about it! I love the energy of being around creatives and the creative process, working with color and textiles and working with the vendors internationally everyday. I've always thought my brain was perfectly right and left brained, so I appreciate design and creativity as much I as like business, productivity and order. I've always felt that product development had given me a perfect combination of the two. The most exciting part is seeing your final product come in, especially when, after all the handwork and craziness, it comes to market week and you get to see everything you've made come together and hear what the buyers like and don't like, many of times now, are my friends coming!  My last job was actually for a major designer in the Home department (which is an equal love of mine). I have always joked that I am a designer wannabe. I am obsessed with the design of anything. I could walk into nearly any store at any time and be there for hours just looking at the design, packaging, everything! I am also a total art history nerd. I love when art ties in with fashion, or anything for that matter.

You are so stylish. What is your most practical fashion tip?

Ha, thank you!! My wardrobe over time has become completely utilitarian, almost to the point that I would say, I barely even own any color anymore (aside from the occasional oxblood, hunter green, blush, etc). Most of my entire wardrobe is black, white, shades of beige/camel and shades of gray.This is just something that has happened over time. It saves me a lot of money. For example, if I went out and bought a hot pink dress today for a party next weekend! I may wear it once, have to get all new things to go with it (since I don't have anything with color) and that will probably be the only time I will ever wear it. In a world filled with Instagram and Facebook, more people remember and have immortalized that pink dress on the internet forever until it becomes obsolete, especially by next year. There are only so many times you can wear a hot pink dress before you become "the girl wearing that pink dress". I also feel that when you are someone with a big personality, you don't necessarily need bright, crazy pieces to match. Maybe it's the New Yorker in me, I just love black. I want people to notice my clothes are nice and that I know what I'm doing but be able to showcase my personality and who I am, so I am not hiding behind my clothes. I don't want my clothes to overshadow me. My aesthetic is pretty minimal, but I do enjoy juxtaposing different ideas (i.e.. girly with edgy/androgynous, classic with modern, different silhouettes combined, etc.). Now that I have a slew of medical diagnoses, comfort plays a big part when I choose things now--not to the point where I'm like "Oh, crocs are comfortable, I need a pair now!"--more like "I can't wear these 6 inch stiletto heels anymore, so I will compromise with myself and go with a Isabel Marant like suede black wedge bootie instead." (These are the actual thoughts that go through my mind.) 

On Caregiving: A Note From My (Amazingly Supportive) Father

I used to be able to watch those pleas on television for money to feed the starving children in Africa and and be completely devoid of any emotion. You know those commercials, children with distended bellies, flies taking up residence in their eyes and some C-list celebrity trying to guilt you into donating “just a dollar a day.” Barely made an emotional dent. And I have to admit that I did feel just a wee bit guilty for not my lack of empathy, but not enough guilt to distract me from whatever I was watching before that damn commercial interrupted things.

But then we had kids.

Somehow the mere presence of these cuddly, screaming, adorable, sleeping depriving entities unlocked the emotions stashed in the recesses of my brain. Any TV show, movie, or commercial that depicted a child in any sort of distress induced that salty moisture in my eyes that I heretofore had hardly ever experienced.

As any parent will attest, the absolute worst is when your own child is ill or injured. The slightest fever could induce completely irrational fears of childhood leukemia. And don’t even mention the apprehension of flesh-eating bacteria that was induced anytime any sort of skin redness appeared.

Luckily, both of our children made it through the childhood and adolescence relatively physically and emotionally unscathed. Despite our best efforts, it did not appear that we caused and long-lasting damage to either of them. Our daughter graduated from the top fashion school in the country and and secured the job of her dreams in New York City. Our son was off to college as a pre-med with a high ranking GPA. While our arms were a little sore from patting ourselves on the back, we were just beginning to relish and enjoy our time.

And then it happened. February 23, 2013. Our daughter was at an ER in New York with searing pain in her neck and shoulders. Over the next several months, the pain migrated to her back, sides and hips. To make a very long story short, Erica had to quit her job and return home to live with us, exactly what a 24-year old had in mind for a career path. Rather than parties with the fashion gliterrari, she now got to experience leftover spaghetti and meatballs with parents. After months of poking and prodding, Erica was diagnosed with myofascial pain resulting from a genetic disorder, Ehler-Danlos Syndrome.

The worst was those nights when I had to witness Erica literally writhing in pain for hours. At that point, no medication or therapy offered any significant relief. This was, to me, a parent’s worst nightmare. Yes, I know her condition was not life-threatening. She is not confined to a wheelchair and her future still looks bright. These thoughts, though, provided little solace when she was coping with an undiagnosed condition over which we had little control.

As parents, Erica’s condition has provided us with some hard learned life lessons. We had to both learn how to be supportive and to cope with our collective changed circumstances. We wished we could have been more enlightened earlier in the process. In that vein, I would like to share what we learned as caregivers, with full recognition that there are exceptions to everything and what I suggest may not be applicable to all. The additional caveat is that Erica had resources that many lacked, such as generally supportive parents and good insurance. With that said, here is just a short list of what we learned.

1. The Pain is Real.

She’s not faking it. She’s not being dramatic. She’s not simply trying to get attention. She does want to get better. And, most important, it’s not all in her head.

2. Distraction Can be the Best Pain Relief

Most traditional pain medications, at best, did nothing, or at worst, had significant side effects that made Erica feel even worse. What did seem to provide some relief was just sitting with her and watching TV or looking at stupid videos on the internet. Netflix and Amazon were invaluable.

3. The Illness does not Define the Person

Erica desperately did not want to be known as the “chronic pain person.”The problem is that when dealing with a medical issue as all-encompassing as what she was experiencing, it is easy to let to her condition subsume conversation on any other topics. It dominated every interaction, including interactions between my wife and myself. We eventually learned to remind ourselves that we were the same individuals we were before the onset of Erica’s illness, with the same interests and eccentricities. The three of us made a conscious decision to talk about topics other than Erica’s affliction. My wife and I actually would agree not to talk about anything related to Erica’s condition while we went on walks or had dinners out.

4. Avoid Caregiver Fatigue

Recognize your limitations.There is no doubt that caregiving can be more than a full-time job. You can not always take a break when you would like, but you must take one when you can. Stress reduces your effectiveness as a caregiver. In addition, the unspoken truth is that stress can lead to resentment, which in turn leads to guilt. Certainly having a co-caregiver helps.Try to learn to recognize the onset of caregiver fatigue and take the necessary steps. It may be an afternoon nap or time away. Erica and I learned to recognize when my wife was bordering on stress overload. At those times we simply sent her away for the weekend. I recognize this may not be an option for everyone, but you must learn what is realistic and doable for you, And don’t feel guilty about taking a break. It will benefit everyone.

5. Nurture Your own Relationships

Caring for a child with a chronic condition can stress a relationship with a partner. When possible take time off together. As much as you feel to the contrary, you don’t have to include your child in every activity.

6. Timing is Everything

While your child is in the midst of a serious pain episode is not the time to try to resolve serious issues. It is not beneficial to discuss treatment options, simmering personal disputes, or future life choices in the midst of severe pain. When your child is suffering, her focus is not what job options she should pursue. Someone in distress does not have the desire, ability or inclination to deal with major issues. We have found that discussions on “big” issues were consistently unproductive at these times.

7. Adjust Expectations

Your child may not be able to do everything you think she should. Forcing someone to do something when they’re experiencing significant pain does not constitute good parental discipline. It merely exacerbates the pain. While there may have been times that I felt like I was being manipulated, I eventually that learned providing reasonable assistance was not synonymous with coddling. Instead, it helped Erica’s recovery and generally enabled her to take on more activity at a later time. While I am disappointed when Erica has to cancel a gym session, I realized that she is the best judge of her body. She has learned the hard way what she can do and when she can do it without adverse effects.

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. 

Chronic Pain Etiquette

From time to time, I have been asked by friends and family (sans pain) what is appropriate to say to me (/someone they know dealing with chronic pain) and how I would prefer to be supported by them. For a long time, I had no idea so I just went incognito for awhile (more on that in an upcoming post).

I think, unintentionally, people would say things that I thought were ignorant and generally pissed me off. I'm sure all of you reading with pain can relate and everyone that's reading that are fortunate enough to be pain free , read up, because this is some shit you'll want to know.

DO:

• Be supportive.
• Call and check on them.
• Be respectful.
• Research to better understand.
• Visit occasionally (if they are up for it, they may turn you down but it is nice to offer.)
• Offer assistance when you can.
• Tell them you care, show when concerned.
• Send things. Whether you feel like going through the effort of a "care package", a card, anything!  I love funny stuff and people send me funny Youtube videos, someecards.com cards, motivational quotes, good music, TV show and movie suggestions…whatever! I love it all and really do appreciate it. 

DON'T: 

• Make suggestions about their medication or management for pain. (I am in several groups and forums for people with chronic pain and this is probably the most bitched about subject. Everyone is different and sometimes opinions you think are valid could be counterproductive and actually do more harm than good. Best to just keep it to yourself.)
• Ask for pain medication.
• Tell them they don't "look" sick.
• Act like they are contagious. (This is really dumb, but needs to be said.)
• Say they're faking it.
• Say it's all in their head.
• Tell them to "get over it".
• Say the illness they have doesn't exist.
• Comment about their mental health. 
• Make uninformed suggestions about diet, exercise, etc.
• Assume they're being flaky and take it personally if they're forced to cancel plans. 

THINGS TO SAY: (This may be redundant to "do" and "not do" but this is a crash course on chronic pain etiquette for dummies and can't ever just assume--because you know what happens when you assume.)

• "How are you doing today?"
• "Is there anything I can do to help you make your life easier?"
• "I am here for you, whatever you need."
• "I am so sorry you are going through this."
• "I hope you start feeling better soon."
• "I really admire how you're handling all of this. I know this is difficult for you."
• "I will keep you in my thoughts."
• (If you are with them and they are having trouble moving/generally getting around) "You look like you're having a lot of pain, let me get that for you."
• "I am so sorry I judged you before I understood your situation."

THINGS NOT SAY: 

• "You need to exercise more."
• "Aren't you feeling better yet? I feel like you've been sick forever."
• "Maybe you're just depressed."
• "It's all in your head."
• "I wish I had time to take a nap."
• "If you just had a more positive attitude…"
• "I know ______ and they do _______. You should try it."

• "There's no way you're in that much pain."
• "You're just doing this for attention."
• "Work through the pain!"
• "You're too young to feel like that."
• "Just tough it out."
• "If you just got out of the house some more…"
• "You're so lucky you get to stay in bed all day!" 
• "What if you just found God?" (To anyone that's religious, I apologize. I am not a religious person and this is probably the most annoying thing you can say to me and the closest I will come to punching anyone in the face. And yes, this has actually been said to me several times---I live in "God's country", dammit.)

Enjoy! 

21 Generic Tips That May Seem Obvious, But Are Worth Stating

Hindsight is always 20/20.

1. You are not as medically incompetent as you think and doctors are not as smart as you think (or give them credit for). I cannot stress this enough. Not that all people should be diagnosing themselves or that all doctors are total idiots, but there is usually some fine line between the two. I spent a lot of time not second guessing what doctors were telling based on the sheer fact "that they're doctors". Through my own personal experience, it seems like (just like any other human on this planet) they make mistakes too and more frequently than you'd expect. 
2. Don't believe everything everyone tells you. A lot of extra stress had been added to my life based on comments or suggestions completely random people had to say about what I should be doing, side effects that I could be getting from drugs I was taking, etc. For example, one person had innocently and casually said to me that a friend of a friend he knows takes thyroid medication and it made them lose all of their hair. I panicked. I thought "Great, I'm going to be on thyroid meds the rest of my life and also have no hair." I love my hair. While that's not necessarily untrue, it never happened to me which is shocking because I end up with a lot of really obscure side effects. Actually I think between taking the Biotin supplements that I do (awesome) and blow drying/styling my hair less, I would be bold enough to say that my hair has flourished and never looked better. Thanks, thyroid meds! Another innocent person told me once and was thoroughly convinced that if I just stopped eating dairy and meat completely (and did nothing else), all of my problems would just dissipate. Well innocent person, you are just an idiot (and I don't feel bad if you eventually stumble upon this blog and realize you were the one that said the dumbest thing I've ever heard.).
3. Take peoples' opinions and comments with a grain of salt. Nine of ten people don't know what they're talking about and if they don't have chronic pain or are actively taking care of someone with it, they probably have no idea what you're going through. I've spent more time than I should fuming over the general public's naive reaction to my situation. (Hence the blog.) 
4. Make an excel document of all the doctors you see, their diagnosis, the prescriptions they prescribe, any adverse effects from the drugs and the date. When you end up seeing 3509486043 different doctors and trying 43059803498609 meds, you start to forget everything you take, who you saw and for what. (Smart) doctors will be able to analyze all the categories of drugs you generally don't do well with and can think out of the box enough to prescribe you something you are less likely to get a reaction from. Also, save any/all x-ray/MRI images and reports from everything into one document. 40 page questionnaires become much easier to fill out when you're not running around like a chicken with your head cut off looking for that one MRI analysis of your neck from NYC nine months ago. That took 7 months to figure out for me. 
5. Look into shit yourself.  Again with the doctors, if they diagnose you with something, always look into it yourself. Look into the drugs they're prescribing you and the interactions they could have with other drugs you're taking. 
6. Don't be afraid to voice your opinion, especially to a medical professional. If anyone can imagine, I used to be pretty meek when it came to listen and following the instructions of medical professionals. (Lol) Generally, the results were unfavorable and not always necessarily thought through. If your doctor tries to prescribe you something that you don't feel like you should be taking, a treatment you don't agree with, PT exercises that you feel like might give you more pain, say something. I have altered my doctors' plans many times and periodically called them out for missing something. By the time I saw the rheumatologist (hypermobility "specialists"), I knew more about it than she did. Her resident didn't even know that was something that rheums were supposed to take care of. Take that, med school. 
7. This goes to say that you know your condition better than anyone, so go with your gut and best judgement when it comes to making decisions. Generally once you have chronic pain, you know what triggers it, what you can handle, what feels okay and what doesn't. Don't let people push you into something you're uncomfortable with. 
8. Try not to cry in public. This was hard for me, but if you cry in front of a doctor, it will never help with your "I promise I'm not crazy" case. As much as you can, try to keep it together. 
9. Be prepared to ask questions, a lot of them. When you anxiously wait 6 months for an appointment with a specialist, you need to be prepared and make your appointment worth your while. I researched things and made a note in my phone with all the questions in the world I could possibly think of that I may need to ask. The doctor may answer all your questions before you even get to them, but I have a really bad memory so I need to write everything down just in case. 
10. Periodically write down a description/keep a journal of your pain. Like I said before, I've repressed a lot of shit from the last year or so and at one point completely forgot that this pain I'm having now was only in my neck. The only way I remembered was because I was looking at an old email I had sent complaining to a pain specialist I was seeing in New York at the time. 
11. Find things that interest you for distraction. Granted, if you are having really bad pain there is probably little to nothing you can actually focus on to distract you, but do it if you can! Maybe the one silver lining to being stuck in bed is that I got to binge on a lot of TV shows I never had time to watch before. I've probably watched 90% of the documentaries on Netflix and seen every Bob's Burger and Family Guy episode 100 times each. I also played with puppies and am learning French (usually too much effort to do for a general pain day, but it's something). To desperately try to stay relevant in my field, I try to read Women's Wear Daily (industry paper) every few days to stay in the loop. When I was having a really good day, I would usually just bake or cook because I love it (even if it hurts.) I am also embarrassingly ridiculously into Pinterest and it has been an incredible helpful tool to stay creative (and look at pretty stuff), find good recipes, online shops and good information about most things in general. Puppy photoshoots are also incredibly fun and entertaining. 
12. Take pictures of medical stuff (ie. allergic reaction rashes, etc.) to show doctors. You will get your point across 10x faster when you have an up close and personal shot of a bunch of hives covering your entire face showing him instead of telling him. Nothing like a rash selfie, really. 
13. Be very nice to nurses and office secretaries. Those people have more power than you think. Trust. You will thank me for this later. Also, if you are waiting an insane amount of time for an appointment, feel free to be that annoying person that calls to remind them that you are in pain and wondering if they have any cancellations. Somewhere between the guilt and the harassment, they will find a way to get you in faster. Actually, today I just sent Dr. Gerwin's nurse a picture of my puppy, Sophie, because I told her I would and she loves that shit. (Puppies are a crucial part of the operation.) Furthermore, most people that are in pain are usually (understandably) cranky, so it is a breath of fresh air for someone who is actually nice to them. 

    

    This picture landed in my Hopkins-top-national-specialist nurse's inbox today. 

14. It never hurts to ask. No one gets anywhere if they don't ask for it. If you're waiting for a long time at a doctor's office and can't bear the thought of sitting anymore, tell the nurse and usually they'll let you lay down in an exam room. 
15. Listen to Mariah Carey. This is mostly just ironic but not really. In my most dramatic moments, "Through the Rain" was my go-to sad song. (I'm convinced I was a gay man in a past life.)
16. Don't be afraid to make suggestions. Half of the things that ended up working for me were things that I researched that never occurred to doctors before I made the suggestions. (Ie. "If x drug isn't strong enough, can I just take y drug with it so it actually has some effect on me?") Also, make friends with your pharmacist. Instead of waiting on hold 4,000 hours for a doctor, it's usually much faster and easier to get ahold of them and they know more than you think. 
17. Be open minded. I was initially pretty stubborn about trying new things, mostly because it always backfired on me and I hated the idea of injections but that is pretty much the only reason I am where I am today. 
18. Think through decisions. Don't do anything irrational because you are temporarily trying to make your insane pain go away. Like I said in a past post, bad pain can cause you to make a lot of illogical justifications for things and make you desperate enough at some points to really try anything. My point is don't do it. And never trust Yahoo Answers. 
19. If something seems or feels strange, it probably is. If you start randomly throwing up a lot or getting rashes or whatever it may be, it is probably not just coincidence. Almost every time I've looked into shit, there was always a much bigger problem behind it. (ie. I used to think I was just "naturally nauseous", decided to look into it and went to a gastroenterologist a few years ago. I found out I had really bad acid reflux and esophagitis…which I later found out is a symptom of Joint Hypermobility Syndrome. Damn you, JHS.) 
20. Try to be as understanding and sympathetic as you can for your caretakers. Whoever is taking care of you is a godsend. It probably sucks almost as much for them as it does for you. Sometimes these people need a break (I used to be offended by this notion) but you need to let them take one. Remind them how much you appreciate them!
21. Manage your expectations. For the first 6 months, I kept thinking "In 2 months, I'll be perfectly better and back to work!" all the time. By doing that, I was setting myself up to be disappointed. Once I accepted what was happening to me, that even once I'm truly better, I will have my own "new normal" and that is finally okay with me.