January 24, 2015

Tiny house too tiny for the wardrobe I love

Today I hung up my clean clothes that have been piling up, and I know it'd be nice to live in a space where my clothes don't pile up like this.  A tiny house, perhaps?

I have been obsessing about living in a tiny house for several years.  A friend pointed out that since most of the realms in which one could set roots or derive stability (financial, romantic, home, health) were all in question this past year (terrible financial situation, no romance til recently, not knowing where I'll end up after my fellowship, surgery last January and recovering from that), that a tiny house represented "just a tiny bit of stability".  Totally.  A tiny house would allow me to move wherever I end up, I could be self-contained, and it would decrease my financial woes (less/no rent).

I've looked into it seriously several times.  I know some of the people in DC that live in tiny houses.  I have considered buying an already-built home, or building my own.  I have considered the benefits of using SIPs versus building walls myself.  I know how much it would cost, more or less.  I know how I would design my tiny home.  I have friends who have offered me their back yard as a parking spot.  I've read The Big Tiny and met Dee Williams. I watched Tiny: A Story about Living Small and met Merete Mueller at the DC Environmental Film Festival last year.

And yet...

I asked Merete Mueller, "I would love to live in a tiny house. I have lived on boats and know I could live in a small space, and I would love the financial freedom it would provide, but I'm an artist.  Do you know many artists that live in tiny houses?  What do they do with their materials?"  She very logically replied, "It's not a contest to see who can live in the smallest space.  If you are an artist and you have materials that you need to do your work, you could rent a separate work space, but maybe a tiny house is not best for you.  Maybe just a small house or apartment works better for you."

And that's what I keep coming back to every time I find myself considering tiny-house-living again.  Not only do I have and enjoy all my art materials, but I also have a large wardrobe.  Those are the two things I'd have to majorly purge if I did live in a tiny house: art and clothes.  Yesterday I watched this youtube video on a woman who explains how and why she has decreased her wardrobe to just 33 pieces.

It's inspiring.  But...  at one point she says, "I decreased my wardrobe so that it wouldn't cause me stress in the morning.  If I only have a few options, then I make more time for the things I really enjoy in my life.  Most people don't derive a lot of joy from getting dressed."  I totally respect that.  But, for me, I DO get a lot of joy from dressing myself in the morning.  I really enjoy expressing myself creatively through my clothes.  I am not stressed in the morning getting dressed.  On bad days getting dressed is one of my favorite parts of the day.

I have a lot of clothes.  I certainly do not NEED this many clothes, and sometimes I let them pile up before putting them away.  But to follow William Morris' advice, I find them both useful and beautiful.  I regularly purge and I feel good about my usage.  So that's that, I guess.  For now.

December 24, 2014

My Ehlers-Danlos Symptoms

I once had a friend ask if I had any negative aspects to deal with related to my contortionism.  At the time, I couldn't think of any.  "Wow," he said, "you're like a superhero! You just get to be super flexible with no negative consequences!"  I liked the sound of that....but it turns out I have a whole host of negative symptoms that are seemingly unrelated, but actually due to the same genetic connective tissue disorder that allows me to be so flexible.  I was diagnosed with Ehlers-Danlos Syndrome, or EDS, (type III AKA hypermobility type) this past spring by Dr. Levy, a geneticist, at Johns Hopkins.

EDS is a rare condition, said to afflict 1 in 2500 to 1 in 20000 people.  However, it's incredibly underdiagnosed due to its bizarre set of symptoms that don't seem cohesive if you don't know what you're looking for.  It is said that up to 30% of the population is hypermobile in some way, and while they probably don't have EDS, they might benefit from learning about how to take care of themselves from the EDS community.  In less than a year, I have learned that at least 3 of my friends also have EDS, have learned a ton from them about good resources, and I have helped other friends and acquaintances with hypermobility syndrome or potential EDS learn more about the diagnosis and how to take care of themselves.

For myself, and for those interested or dealing with EDS themselves, here is a list of my symptoms.
  • Hypermobility (9/9 beighton score), front-bending contortion
  • Velvety, soft, stretchy skin
  • Piezogenic papules
  • Subluxations (hips mostly, but sometimes shoulders, knees, etc)
  • Frequent hiccups (spasming phrenic nerve which innervates the diaphragm)
  • Hyperadrenergic
    • anxiety disorder, panic attacks
    • vivid dreams
    • difficulty sleeping long/deeply
    • easily startled
  • Endometriosis
    • surgically removed grapefruit-sized & eggplant-sized endometrial cysts Jan 2014
    • abnormally heavy periods, occasionally extremely painful
    • anemic (low iron)--possibly/probably related to heavy periods
  • Orthostatic hypotension (I black out when I sit up or stand up too fast because of low blood pressure)
    • up to 30x/day, sometimes not for months
    • I briefly lose vision, sometimes hearing, occasionally consciousness--once broke my nose falling on my face when I stood up too fast and lost consciousness.
  • Difficulty building muscle mass
    • back muscles randomly fail because holding my body in normal posture takes too much work
    • pinched nerves occur because muscles aren't strong enough to hold nerves in place.  Once lost feeling to my left arm for 6 months.
  • Sometimes non-responsive to lidocaine as a local anesthestic (THAT was an unwelcome surprise!)
  • Magnesium deficiency (muscle twitches)
  • Bursitis
  • Ankles easily turn/ ankle sprains get worse and worse
  • Knees can no longer comfortably support more than a few miles of bike-riding due to repetitive motion 
  • Kyphosis (or what I like to call duck-butt), (all dance teachers are like, "tuck your tail" and I'm like, "I AM")
  • Astigmatism, myopia (nearsightedness)
  • Dry eyes 
  • Crowded teeth (yeah I had a retainer)
  • Decreased proprioceptive accuracy AKA I am clumsy because I have a poor sense of where my body is in space.  Balance is very difficult for me.
  • Brain 'fog' (for me, this often manifests as not being able to remember simple words or phrases)
  • TMJ & bruxism (my jaw almost always hurts and clicks)
  • Night sweats
  • Occasionally tachycardic (heart racing)
  • Urticaria (AKA "hives". mast cells release histamine in response to irritation, or sometimes, nothing really)
  • Low testosterone
How I deal with these symptoms:
  • Prescribed anti anxiety medication, birth control pills (for endometriosis), and sleep aid (as necessary)
  • Supplement with chelated magnesium, ashwagandha and turmeric (to reduce inflammation), iron
  • Eat a lot of salt
  • Drink a lot of water (with electrolytes)
  • Take epsom salt baths as necessary
  • Limit caffeine intake
  • Regular low impact exercise (dance, yoga, pilates, swimming, walking, paddling, light biking)
  • Use athletic tape and braces for extra support
  • Wear daily contacts or glasses
  • Wear a mouth guard to sleep
  • Try to stay patient, relaxed and kind to myself;  Meditation and deep breathing really helps
  • Listen to my body and sleep or rest if I need to
  • Laugh about it all

September 22, 2014

Enhancing Community Engagement

This is my first foray into making podcasts!  Coleman Davis did all the technical editing, Rob Pressly is the host: I have a great team to work with.  Craig Cornu from the South Slough Estuarine Research Reserve in Coos County, Oregon is my guest.  Let me know what you think!  

How to access:
If you have an iPhone, just click the subscribe to itunes button.  If you’re on a computer click, the download button.  If you have another podcast player, click the RSS button.  Otherwise,www.naco.org/podcasts has an embedded player on it, and you can listen there.

Image courtesy of here

September 12, 2014

Creating a top from scratch

There's nothing like procrastination to get me motivated to finish a project.  Or...even start it.  I have known I was dancing with Salacious Powderbump for over 6 months, but I made my top for it just a couple hours before the show.  You can do this too.

I'll walk you through it.  What you need:

  • Model your same size or dress form
  • Bra in your size
  • Pretty fabric
  • Scissors
  • Pins
  • Sewing machine (or you could do it by hand)
  • Sewing marker

1. Put the bra on the dress form, fill the cups with padding to fill them out to your size.  

2. Drape the fabric over the edge of the bra so that the selvedge (hemmed edge) of the fabric lines up with the bottom of the bra.   

3.  Pin fabric to bra base. 

4.  Drape fabric around neck the way you want it to lay.

5.  Pin the fabric to itself exactly how it lays, and then pin the top of the bra cups to a bunch of fabric hiding under the gathered/draped fabric (so that this pin doesn't show)

6.  Pin the continuation of the neck-draped fabric to the back of the bra, so that the drape now actually provides support (since it's attached to the top of the bra cups.  

7.  Draw armholes where they meet up with the dress form's arm holes (with fabric-safe sewing marker)

8. Unhook the bra, and take it off the dress form.  Sew all the pinned places on the sewing machine (or by hand) in the same order that you pinned them.  

9. The extra fabric at the back can be pinned/sewed under the bra band, or left flowing (you'll probably want to hem it), or you can do what I did and leave cut most of it off but leave enough to wrap around the very center of the bra band so that the hooks don't show.  
10. Cut the armholes out.  For a finished product, you'll probably want to pin some bias tape around the edges of the arm hole and sew it down, but honestly, I left mine raw, and it's fine for the short term.  
11. Embellish however you like (I used a single chandelier crystal in the center)
Photo by Diriki Rice

12.  Perform! 

February 23, 2014

6 Weeks Post Surgery

The external incision is just below my pants line, horizontally.
The internal incision is vertical; from my pants line up to my bellybutton.
Blue area = lost skin sensation. Weird.
I feel as though I should have some very wise insights after 6 weeks of chilling/recovering.  But I don't.  I do, however, have a lot of random thoughts that have been stifled from sharing with others, simply because I'm not out in the world to share them.  Sometimes they burrow a discordant hole in my brain, so here I share them. Some are connected, some are not.

I usually live my life very productively.  I move from one project to another.  I take care of myself (good food/exercise), but beyond that self-care is a back-burner issue.  These past several weeks, have been quite different in that the focus was 100% on me.  Take care of me, get well.  Heal.  Insights:  it was what it was.  It had to be.

I am grateful (so grateful!) to live in a time and place in which the medical attention I have received was possible.  But things are not fair.  I'm lucky, but not infinitely so.  I now have medical bills that I am unable to afford.  Nature is not fair.  I understood this fully for the first time in the jungles of Nicaragua, where life exists under one ethos: eat or be eaten.  This, I believe, is the underlying state of life everywhere, some societies have just become better at painting a slick wash of HighQualityOfLife over it.  I have been enjoying watching the BBC's Tudor Farm, which shows the ins and outs of English farmers' lives 500 years ago.
  It's fascinating to see how religion coats everything, how religious beliefs further indenture farmers to the church instead of liberating them in any way from it.  It's fascinating to see the solutions people used for building, fencing, cooking, heating, travel, trade, and so on, all without electricity or running water.  Then, I watched Shadows of Our Forgotten Ancestors, a 1964 film which depicts life in the Carpathian Mountains among the Hutsul in Ukraine.
Again, I was fascinated by the way of life, the religiosity, the harshness of life, and how similarly human life looks to the jungle where nothing is fair, and luck plays a greater part of the puzzle than it seems to play in our modern lifestyle in the West.  I was struck by the fact that while the medieval Tudors lived 500 years ago, the Hutsul way of life existed as recently as 100 years ago.  Two nights ago, I watched As I Lay Dying and it really hit the right chord with me.  Not only did this story take place also 100 years ago, but it took place here in this country, in rural, poor Mississippi.  Bad luck often begets bad luck, and this is compounded when the people in question are poor.  Despite my great social capital (6 years of undergraduate education, 4 years veterinary medical education, 2 years masters degree), I have significant negative financial capital.  My student debt to income ratio is 10:1, five times higher than suggested as reasonable. (No, I can't declare bankruptcy on it. Yes, I've consolidated where possible).  I am lucky to have health insurance.  But I still have bills for this surgery in the thousands, which I simply can't afford.  These thoughts swallow me whole sometimes.

Before surgery, we thought I had 2 ovarian cysts.  The surgeon thought she'd have to remove the left one altogether as it was enveloped inside the tumor, but she thought she'd probably be able to salvage some if not all of my right ovary.  So, right before my surgery, I told my doctor that if she thought she might have to remove both ovaries to just go ahead and do a hysterectomy too.  She asked why, and I said, "well, if I can't have my own kids, I wouldn't want to have the option to have any." During the surgery, they realized I had endometriomas (tumors made of the inner lining of the uterus) instead of ovarian cysts, and the doctor was able to salvage both my ovaries.  But, as endometriosis recurrs in ~45% of patients after surgical removal, I now have to choose what type of hormonal preventative treatment I want to be on so I don't have to have surgery again every year.  My choices are depo-lupron (puts me into early menopause, decreases bone density), depo-provera shots (birth control, decreases bone density), or birth control pills (which I went off in the first place because I puked every month.  Only after I stopped them did I realize I had had suppressed libido for 10+ years. Super sad.)  Of course I don't want surgery again, but I also don't want to go on any of these medications.  It makes me angry that my surgeon's default goal is to protect my fertility and never even asked me what MY goals were, other than when I brought it up 2 minutes before they put me under anaesthesia. It makes me angry that the way the literature and informational pamphlets talk about the options is very binary: either you are young and want to be fertile, or you're old and dried up and it's time to retire you.  I never saw myself represented.  What about those of us that are not young but far from old, who never really desired kids but aren't opposed to it, who lean a whole lot closer to not wanting kids even if it means hysterectomy than saving troublesome bits of organs at all costs which might mean we'll have multiple surgeries in the future?  It makes me angry that I still have a troublesome uterus when the surgeon was just in there and could have removed it, and the entire issue of my endometriosis with it.  It makes me angry that everyone assumes what my position on the subject of MY HEALTH is simply because I'm a female of a certain age. It makes me angry that reproduction is the default goal in an overpopulated world.  It makes me angry for feeling the whiplash of this societal default--that I feel sad for never having felt loved for having been a woman with the awesome capability of reproducing.  It makes me angry to have been born female at all.

Once I feel these angers and sadnesses, I come back to knowing, simply, that life isn't fair.  And that while no options are good ones, at least I have options?  *Sigh*  Every time I feel like my life is turning up, I get kicked in the teeth.  I keep metaphorically clambering up again to enjoy all I can (because who wants to be miserable all the time!?!), but reality can really be a bitch.  No surprise, then, that the first day I had my regular amount of energy, it came attendant with low grade anxiety.  The next day, I still had anxiety, and it grew over the course of the day. Why's it gotta be like that?  Ben reminded me that post-surgical anxiety and/or depression is common and normal.  Great (*sarcasm*). Cue post-surgical anxiety, I guess.  I am glad it only lasted 3ish days.

Today I start work again.  I feel well.  I think it will be good to be working regularly again.  I hope it's motivating and not too overwhelming to jump right back into work. I had just under 6 weeks of recovery time.  Solidly 4 weeks of that was spent mostly in bed, brain fogged, exhausted most of the time.  During week 5, I started to be more active, but then got sick which knocked me out again for several days.  These past several days have been good: I've been more active, have had more responsibility with cooking for myself again etc (HUGE THANK YOUS to all my wonderful family and friends who helped me out with food and entertainment!!!!  You are the greatest, and it was really really helpful!).  I am looking forward to spending less time on Facebook.  I'm on it a lot in general, and generally I find it productive/rewarding.  But watching the newsfeed scroll by one status-update at a time for weeks on end is too much.  I'm annoyed by the link-bait headlines, the repetitive posts, and how we're preaching to the choir on there.  I see a lot of back-patting for thinking the same ways that we think, but I see very little actual action on these issues compared to the number of people posting about them. (Um, but I DO have lots of active, involved friends doing meaningful work creatively, intelligently, socially, which is why I find FB to generally be rewarding, when I'm not just sitting in front of the screen 24/7).

Okay.  Thanks for indulging my rants, and allowing me to get things off my chest.  Upward & onward!