Now I've gone and done it.

I've moved from depression to anger.

I'm not "nice" anymore. Not right now, anyway. Maybe later. Or maybe my anger is actually a good thing.

I'm honestly not sure yet.

Maybe part of my current state of mind is a reaction to the general lack of civility in the world currently. Kids in cages here. New fascists in Italy (oh why did I spend all that time learning Italian?). Putin and Trump kissy-face. Rallies of ignorant, angry, hateful people under the guise of patriotism.

Yeah, it gets to me. Anger and incivility are contagious.

So now when Rick and I are on the tandem, I've stopped saying "excuse me" to people walking in the bike lane. And I've started yelling "THIS IS A BIKE LANE!"

It's understandable - I've been knocked off the tandem twice avoiding pedestrians, and the second time I was hurt fairly badly. But I didn't yell at anyone then until I was on the ground.

I am now yelling preemptively.

I'm tired: of people bumping into my cane and sending me off balance, of rushing by me much too close so I have to freeze in my tracks, of coming at me 5 abreast on the sidewalk and making me move over or wait. 

Of taking their privilege of ability so for granted.

It's pissing me off.

So, at least for right now, I'm not smiling and pretending that I'm the one in the way. Causing an inconvenience. I'm not wistfully, quietly begging that someone will give me a seat on the subway. I'm not "I'm so sorry, but I really need a bag for this, as I only have one hand free". I'm not saying "Oh. Sure. I guess I could handle that" when I'm really thinking doing that will have me in muscle spasms all night!

So, at least for right now, I'm not nice anymore...

​We'll see.

(First, I need to acknowledge that this has nothing to do with acting, disability or Ehlers-Danlos Syndrome. At least, not directly. But when the things that have given you meaning your whole life are taken from you by fate, I think it's a good and healthy thing to look for ways in which you might still be able to affect society and your world. This is one of mine.)

Dear Mr. Bezos,

Your company has been a great help to many people. (I don't agree with all your business practices, but I've made those points before when talking with your customer service reps - all of whom have been very nice - but this post is about the good stuff!)

As a disabled person who has great difficulty shopping normally, I can get braces and supplements along with everyday needs sent to me easily and quickly from your company. I can have some of my purchase go to charities of my choice through Amazon Smile. And I have been able to assist businesses like Noah's Ark Animal Sanctuary and movements like Occupy Sandy through the use of Amazon WIsh Lists, where otherwise my disabled body would keep me from being of any real use. I LOVE being able to help like this, and I know others do, too. 

My boyfriend took me to India this past winter. We didn't go the usual tourist routes, but planned our own. We ended up staying in many poor villages with one grand haveli or palace converted to a hotel (heritage hotels). My boyfriend, Rick, is a photographer and he would walk through these villages a lot. The people were always welcoming and friendly, and I mentioned more than once that I wish we could find a way to help their villages without worrying that the money would just disappear into someone's pocket. The cost of living is so different that just a little money could make a huge difference. We met a couple from Australia who felt the same, and said they saw that one of the hotel books had instructions for travelers who wanted to help the town to bring money to the desk and they would direct it for water and school supplies.

Then I thought of Amazon India. And the Wish Lists!

Again, so many of these heritage hotels are the only big thing in their village. Why not set up an Amazon India Wish List for every town that was willing? The info to go to the Wish List could be in every hotel guest book - perhaps even provide an easily printable template for the hotel to put in the rooms! The tourists could pick from that village's Wish List and spend just what they want and the list would be for the things the village knew they needed! Everyone feels protected and cared for! Amazon makes money from tourists from around the world who travel to India! The hotels have an easy way to direct the inquiries! It's a Win/Win/Win!

Mr. Bezos, please consider looking into the feasibility of this. I really think I've stumbled onto something here. Let a disabled actress feel that she can still accomplish some worthwhile stuff in this world :)

Thanks for your time,
Cyrilla Baer Pond

(If y'all like my idea, you might want to tweet to @JeffBezos)

I understand that I am one of the lucky ones.

I have a boyfriend and a Mom who really watch out for me. I have rarely dislocated my joints, and my subluxing is under much more control since starting Pilates in 2012. While my digestive system is weird and supplements are a given, I can eat most things and don't have to be fed through a tube. While I had to give up my beloved career, I can still help others to create Art in limited doses when my body is up to it. I get to travel safely because Rick makes sure of it. I don't have to worry about going hungry, or without healthcare, or without a home. I am lucky. I know that.

And yet. And yet. My choices most days boil down to a choice between pain and pain...

Do I work through the pain of the aftermath of Pilates or a bike ride, or deal with the pain I'll have later if I allow my abnormal muscles to decondition (which they do rapidly for us EDSers)? Do I enjoy the bike ride (it's the only way I get to see the world, since walking is painful), or cooking a meal, or rehearsing a new piece for a reading, knowing that I will likely pay with spasms in my legs all night? Do I go out with Rick for a romantic walk in the snow, all the while afraid that an ankle will twist and tear and knowing how much pain the cold causes in the muscles of my thighs?

My friends tell me I'm brave. That they admire me. It's really kind of them. But am I to be admired if - since both my choices cause pain - I choose the one that also provides some pleasures?

Yes, I'm very lucky. Lucky enough to have resources and help to change my lemons into lemonade. But truly, how much lemonade can you drink before your mouth just feels sour?

I know it has been an incredibly long time since I've written - I'm really struggling with chronic fatigue. but I needed to do a quick update:

1) I WAS APPROVED FOR DISABILITY! This was disheartening, as it meant I really truly had to accept the fact that I am a physical mess, but now I have Medicare and my pension from Actors Equity and enough coming in from SSDI that I don't ned to panic.

2) I'm assembling a bigger medical team! I've added a Sports Medicine doctor, a new PT who is happy to work closely with my Pilates teacher who is in turn happy to work with her, and a podiatrist who I am discussing foot bracing with. I'm going to the Marfan's Clinic at Mt. Sinai (they lump all us connective tissue disorder peeps together) where I should be able to pick up a cardiologist. Just slowly building a team who understands that I'm "complicated".

3) I had to fight the co-op I live in with Rick to allow my tandem bike as a piece of physical therapy equipment, as they were trying to limit the bikes to 1 per apartment. I actually sent them a letter from my doctor, even tho I'm not supposed to have to prove my disability to get an accommodation. ADA anyone?

4) I've discovered that the Pilates has made my muscles very strong. It's frustrating to realize just how much is done by tendons and ligaments, because I still feel very weak and tired. But I'm plugging away!

5) Several disabled people are suing Access-A-Ride! Rick and I have a trip coming up in September, but when I come back I'm gonna get in their faces again. I really want access to the taxi program, because it's hard for me to get to several of my specialists on public transportation - just too many stairs and not enough elevators in this town.

Well, that'll do for now. Back when I have more energy.

Well, I had my hopes up that I might be meeting with a human being who happened to be a doctor, but I have been disappointed yet again. I know, I know - I'm lucky that the medical persons who actually are caring for me have a clue and are human (unlike so many of the horror stories I hear from fellow EDSers on Inspire.com), but the IMA (Industrial Medical Associates) doctors have my disability payments in their hands. And this one was both uninformed AND pompous. A winning combination!

First off, my tension and anxiety levels were heightened just going in there. I know the doctors who work for the SSA are over-burdened and (often) under-qualified. I was assigned to an internist - a good sign! - to be examined for arthritis - a bad sign! The Arthritis Foundation recognizes Ehlers-Danlos, but it's not actually arthritis - it can lead to premature osteoarthritis, which I have, but you're not gonna find it with a typical arthritis movement test. An arthritis movement test is looking for limited movement. While I have pain with movement, I AM HYPERMOBILE! I can do the arthritis movements plus much more! But I had hopes that this guy being an internist, he'd look at the fact that this is a system-wide syndrome and disability.

Ha ha. Ha.

First off I got into an actual argument with the nurse who took my vitals. My BP was high. This is very unusual, as my BP is usually corpse-like, but BP in EDS tends to run up and down as the body tries to regulate itself, so it can go temporarily high. Plus, I was already upset being there. I told her it was probably high because I was upset to be there and she challenged me on why I could possibly be upset! Then she kept insisting on the info on my PCP so she could set me up to have my BP checked and put me on meds. I probably would have just given her the info, but my PCP is in insurance limbo right now, so I argued with her. I was stupid. I'm already on the verge of tears.

Then I go to the internist. He immediately misunderstands who made my EDS diagnosis and it takes quite a bit to straighten that out - he's only partly listening to me. Then I tell him that I know it's considered rare, so I've brought some new info about the condition if he'd like to see it. He says "We've seen at least 4 of you here. Ehlers-Danlos isn't new - we've known about it for a hundred years!" I wanted to ask him if he was still treating other medical conditions with 100 year old information, but I didn't dare. He was already being short with me and I have to depend on what he submits to the judge.

Then he asks me what Type. I say Hypermobility Type. He says, "No, what Type, what Type? I, II or III?" I said that it would have been Type III, but the classifications got changed a few years ago and now it's Classic, Vascular or Hypermobility Types, with 5 more besides. 
"What TYPE? I, II or III?!" 
"Okay, Hypermobility, Type III."
"Type III??? They told you you're Type III????"
"Yes. Hypermobility, Type III"
I have NO idea why he was surprised at Type III. Maybe he's one of those backward docs that still looks for Marfanoid features, which this chubby gal ain't got. And which have been shown to seldom apply to EDS diagnoses.

So he asked about onset and I said "It's genetic - I've always had it." 
"But you got diagnosed in 2012"
"But I had my first dislocation and surgery in 1976"
"You had actual surgery for it?"
"For all of the knee dislocations"
"When?"
<my internal voice says: It's right there in front of you. Oy.> I pointed to the sheet of paper he was holding.
"So when did it get in the way of work?"
"I've always pushed through pain to work" - he began to interrupt me - "BUT it started to get bad in 2008 when I started to fall alot and drop things - even dropped things onstage."
That seemed to settle that.

He asked about family history of EDS. He checked my messed up knees. Took the brace off my wrist but didn't press to see if it hurt on the tendon (which it DOES and which my rheumatologist sometimes apologetically checks because he knows he needs to). Had me walk, which I did with braces and shoe inserts in place, asked me if I could walk on my  toes - when I hesitated, he said I didn't have to. I told him I might dislocate that part of my foot. That gives me some hope that he gets some of this.

Sure enough, he did the arthritis test. I said "Ow" but of course I was able to do the movements. Idiocy.

He asked me about my diagnosis - he was still under the misapprehension that I had been diagnosed at the NIH and had brought that diagnosis with me (this mixup is too long and stupid to tell)! I said "What do you mean diagnosis? Do you mean you want me to show the Beighton or Brighton Scales?"
"No, you said you had a diagnosis!"
"Yes, but I didn't bring it with me. No one told me to bring it with me. It's in my SSDI application. They have all that paperwork!"

He flipped through the papers I brought about EDS - he just flipped. Didn't read a word. Just wanted to see what I had brought.

He checked none of the Beighton or Brighton Criteria. 

I was in tears of frustration and anxiety throughout this entire time. And he was done.

Next I was sent to the psychologist for anxiety. Most EDSers' "anxiety" is caused by high adrenaline levels, but I have some extra anxiety of my own. The Psych was nice. He asked questions about my braces; I told him "That was more than the internist asked." He asked about my struggles with daily living. When he asked me about my hobbies, I burst into tears. I told him I was sorry, it was just that I had lost so much. "You mean your acting career?"

Theatre and music are both my career and my hobbies - for years they've been my whole life.

But I just nodded.

So, it's over. It's possible because of my age that the judge will read the report and just go ahead and give me the disability without needing to schedule me on the docket. Perhaps not. All I can do is wait. If they give me an On The Record Decision it will be positive, and it will come by mail saying when I can expect my back payments. If they move it to the docket, I'll get a letter telling me when the case will be held and what judge.

So the mailbox is currently the focus of my attention. And anxiety.

But I tell you one thing. When this whole process is finally behind me, I am gonna do EVERYTHING in my power and with any connections I may still have to get this damned Syndrome front and center so doctors get educated about this! They are asking the WRONG questions and not allowing us to fill in the blanks, because they don't believe there ARE any blanks! And I'm gonna try and make it easier for every EDSer - and hopefully every Invisible Illness sufferer - who comes down this frustrating, tear-filled road after me!

<raises arm in Scarlet O'Hara pose. shakes little fist. grimaces in pain and sits down>

I've been putting off writing this post for quite a while - every time I try to start it, I get terribly upset and it's so hard to put this experience into words - but I have to try.

It is very easy to feel guilt when you've become disabled - you have to rely on other people for things and you often feel that you're asking for special treatment just so you can get through the day. Most people are kind when they know that you have a physical barrier - some are not. But when you have an invisible disability, very few people can even tell you're having a physical problem. Worse, they often openly DOUBT you have a physical problem...

I've read stories of people like me being accosted and shamed for having a Handicap Parking Permit - it's a legit permit, but people assume it's stolen. They've been accosted and shamed because they use scooters to go shopping and they "look normal". I was turned down for the Access-A-Ride program because the woman in charge would only ask me specific questions that just didn't apply to my disability, ignored the info I gave her on their own forms, ignored that while I was able to do what she asked me to do physically that I was in tears while I did it, and just decided that I didn't need help. When I refused to walk up and down a hallway "until you can't anymore", she said "there are other people here besides you and they need help".

Then you get people who just flat-out shame you for being disabled and trying to live your life. The following exchange happened on Facebook when I commented on an article about using the service Uber:

The people commenting were totally misunderstanding what the article was about, which was how price gouging occurs on UBER during storms and how quickly charges mount up - they thought she was an idiot who paid money to ride for a distance that "could have been walked". So I commented. And here's what happened:

WHAM! Shamed. Yeah, he was a troll. Yeah, you should ignore trolls. But I just wasn't in the mood to take it.

Someone was nice enough to stick up for me:

Thing is, even Edward had it wrong about my social life - I don't really have one. I try, but I pay the price in pain after I try, so I limit that drastically. Mostly I'm out and about to go to different kinds of therapy. But even if I WAS going out to have a social life - am I not allowed? What am I allowed to do without being called a "user"?

How do I handle the glowers do I get when I squeeze into a bus seat between 2 people who obviously don't want me there?

I've sent Mayor de Blasio my idea for having a card on a lanyard for invisibly disabled people to show to get a seat. In London, they're asking for buttons, but those seem awful and are too easy to reproduce for people who just want to fake being disabled. I suggested he do it through the Handicap Parking Placard program - we could register for it the same way with a doctor's note, it would be numbered, it would be small but have the logo, we could hide it until we need it so we don't feel branded, and the flip side could say something like this:
I have an invisibility disability. While I look fine, I am probably suffering from chronic pain or severe fatigue or dizziness. Please be kind and allow me to sit here.”


I sent the letter 2 days ago - let's see if he responds. I think it's a good idea.

Anything that can cut down on the shaming is a good idea.

I haven't posted in a while - it just seems like my plate has been too full, both good and bad. Sometimes both in the same event! Dealing with my deceased brother's estate, the lack of income while I wait for my disability to be processed (I checked - I'm still in the "waiting to be looked at file") which means I have to decide between Pilates/massage therapy/new braces/new supplements, the daily pain and fatigue: these are bad. Doing readings of new musicals where I love the characters, but realize I may never be physically able to play the parts, whether the authors want me to or not: these are good and bad.

But something happened that was ALL good. And it was a gift from someone I had never met before. A total stranger. And on Thanksgiving, I thought I should take the time to tell the story.

Medicaid restricts the amount of physical therapy visits per year to 20. This is probably enough to recover from an injury, but for a chronic condition it's a ridiculously tiny amount. Plus, all PT is counted together; that means that if you have an injured hand and an injured shoulder, they are added together for your 20 visits - probably 10 each. So if you have a whole body condition, well you are SOL, darlin'.

After spreading my PT visits out as much as I could (I get myofascial trigger point massage therapy - painful but very helpful), I was down to my last 2 sessions. My hands were getting worse, so I asked my doc to write me a prescription for Occupational Therapy. I had been told it was 20 visits including PT and OT, but it turns out they are counted separately! So I could get seen for my hands and still get my last 2 PT sessions - I decided I'd save them until I really couldn't move my back and had to use them (I now have one left before the year ends).

I found a place (that I won't name, for reasons that will become clear) that offers PT and OT and several different modalities, including aqua therapy. Aqua therapy is supposed to be VERY good for EDSers, but it's hard to find places that offer it that are covered under Medicaid. So I figured, "Hey, I'll try this place out on the OT and if it looks okay maybe I can get aqua therapy next year when I have my next 20 PT sessions available!" 

So I make my appointment and meet with the sweetest Occupational Therapist. I tell her about EDS, she asks really good questions, and I tell her my idea about maybe getting aqua therapy next year. When the entire intake is done, she let me know that all they can really do for my hands is some strengthening and maybe some finger braces because there is no way to keep them from bending inappropriately because of the lax tendons and ligaments, but she really can't DENY ME THE USE OF THE POOL. I said I didn't understand - that the pool was surely for PT, not OT, and I didn't really have any PT left this year. She said this is true, but it was obvious that I was working so hard to strengthen everything I could, and the pool is here, and she just won't write it up that way. I asked her if she'd get in trouble and she said no, it would be fine - it's all up to what she would write in the chart. It didn't cost them any more money, time, or trouble to let me work out in the warm pool and she would be happy to arrange it!

The aqua therapy is AMAZING!! It's just a tiny pool and no special equipment - just some water weights. And there is a sweet girl there to help me, too, but I mostly design my own routines with their equipment. I go once a week. There is NO PAIN when I work out in the water - I can even run and get cardio! The combo of Pilates (which I've gotten better at) and the water is helping my legs to move more in a straight line as opposed the "EDS waddle", and that means that, while I still can't do much because of foot and hip pain, walking is not quite as fatiguing as it once was.

Again, I must stress. This lovely person does not know me from a hole-in-the-wall. She is just kind. She just cares about people who hurt. And I can't even give her name here for fear she might get recognized and get in trouble.

I have a lot to be thankful for this Thanksgiving (not the least of which is my wonderful fella, Rick, who I appreciate more every single day). But this gift for my health, from a girl who doesn't even know me, is truly amazing. And things like this remind you that most people are actually really nice when they get the chance to be.

Happy Thanksgiving, y'all!

Last Thursday, we had the best ARGUMENT SESSIONS workshop yet - it flowed and it was fun. The commute was rough on my feet and knees, but I felt like my body did pretty well compared to the last one. Then on Friday, we did the Pilates demo for the EDS-NYC Group and I pushed too far (I wanted to make my instructor look as good as she is, but she talked a lot while I had to hold positions that I don't usually hold. I should have spoken up, but didn't. My fault.)


So I had a couple of days where I was really terribly sore and stiff. Not normal sore and stiff, but EDS sore and stiff. It took me quite a while to recover.


A Fine Balance by Bev  

Today, I had PT and then Rick and I went out on the tandem bike to pick up some things we needed. It was hot and humid again, and I felt kind of sick toward the end, but recovered pretty quickly when we got home. Last time, it took me over an hour to recover from being out and about in the heat.

The thing is that I never know! When I'm asked if I will be able to do something or other on a certain day, I have no answer besides "I'll have to wait and see". And I know how frustrating this must be for everybody.

Christine Miserandino, who has lupus, writes a blog called "But You Don't Look Sick". She has written a post explaining what she calls "The Spoon Theory", which has become an oft-quoted article in disabilityland. In a nutshell, her friend asked her what is was like to have lupus. Christine handed her a bunch of spoons from the diner tables to represent how much energy she could have to do things - ANYthing - on any given day. 

To quote Christine: "Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control."

The article is very enlightening and you should read it. But what it boils down to is that every day I have to choose, not just what to spend my energy on, but what to spend my pain on. Low-level constant pain is there all the time. I decide how much to medicate (how much my stomach can stand, in the case of NSAIDS, how awake/aware I have to be in the case of opiates) and when - because I often don't. (My rheumatologist wishes I would medicate more, but opiates make me nervous.) And then I decide what I think I can do without adding too much pain or discomfort (like nausea). And then if there are things I want to do that aggravate me a lot, I decide if it is worth it to do it anyway.

Any show I'm invited to, any dinner or drinks invitation, an offer of some giveaway clothes if I can just come get them - these all have to be weighed.

And I always want to say "YES"!

And sometimes I do. When I shouldn't. And I physically regret it later. Because I have to take care of myself.

So I'm still learning what I can and cannot do. And I hope y'all won't let that stop you from asking me to do stuff with you. I may say "no..." most of the time, but I miss you. And I want to say "YES!"

And if I say "YES!'"and later realize OOPS! it should've been a "no...", I may physically regret it later.

But emotionally, I'll be soooooooo happy I saw you - it'll be worth it!

      Invisible Girl by Jason Garrattley 
Invisible Illness Week starts on September 9, 2013.

To raise awareness of invisible illnesses everywhere, chronically ill bloggers are completing this meme designed by Lisa Copen founder of Rest Ministries and National Invisible Chronic Illness Awareness Week: 30 things you may not know about their invisible illness.

So, it's a tad early, but here are mine:

1. The illness I live with is: Ehlers-Danlos Syndrome - Hypermobility Type (formerly known as Type III or Benign Joint Hypermobility Syndrome - they no longer call it that because it's become obvious that it is not benign!) I also have a lot of stuff that comes with it, like fibromyalgia, POTS (Postural orthostatic tachycardia syndrome), chronic pain, degenerative joint disease, low blood pressure, what they have always thought is anxiety but research is showing is actually a body swimming in adrenaline most of the time, gastro issues, and PCOS to go with it.      Invisible Girl by Jason Garrattley 

2. I was diagnosed with it in the year: (PCOS in 1990) HEDS last year in April. Finally.

3. But I had symptoms since: Childhood

4. The biggest adjustment I’ve had to make is: understanding that pain is always there, but figuring out what is "normal" pain and what can be leading to further injury. I've always had pain, my whole life, and just assumed that everyone else did too! How would I know otherwise?

5. Most people assume: that I'm okay most of the time and just have pain sometimes. Nope. But my body is used to the pain chemicals, so I don't notice them as much until I add to them by moving "wrong". I have to make decisions every day about how much pain I'm willing to take on and what is worth it. Pilates is worth it. Riding the tandem bike is worth it. Doing almost anything at all related to theatre for a limited number of hours is worth it. Drinks or coffee for a couple of hours with friends is sooooo worth it! Seeing shows or movies is borderline - it's pretty hard on me, so I have to pick and choose...

6. The hardest part about mornings are: my mornings have gotten better, actually, with therapy and meds. But I have to be sure my feet are not out of alignment before I get up, and I usually have to grab the dresser and guide with my hands on walls for balance for several minutes after I rise.

7. My favorite medical TV show is: Royal Pains, but mostly cos I'm looking for actors I know :) They did an episode that had EDS in it (before I had ever heard of it), but didn't treat it as as complicated and sometimes dangerous a condition as it is. I really want to re-watch that episode now!

8. A gadget I couldn’t live without is: my iPhone. It makes me feel connected, with Facebook and interactive games. I can sit on the couch in one of the positions that is pretty comfortable for me and still be doing stuff. And I can do a lot of the games because the phone's surface is small enough that I don't activate my wrist too much - I couldn't do that on an iPad.

9. The hardest part about nights are: lack of restorative sleep -because of spasms, usually, but sometimes anxiety caused by adrenaline surges, sometimes pain from overworked muscles or subluxations, sometimes what just seems like generic insomnia. I often sleep sitting up with my legs outstretched and leaning over a pillow - unfortunately, that strains my neck eventually. But often it's the only way to get the leg spasms to ease up for a while.

10. Each day I take 5-7 pills & vitamins: Vitamins C & D (for bones and collagen), magnesium pills, magnesium lotion (we need magnesium but don't absorb it easily), collagen supplements (they probably don't help, but I'm trying all sorts of things), Glucophage (for PCOS), then either prescription strength Ibuprofen or Hydrocodone or Tramadol for pain based on degree (some days none, just because I don't want to always take pills), I also have anxiety meds, but I'm hoping to switch to something that just blocks adrenaline. And I have muscle relaxers in my med cabinet but I avoid them - they make me so loose that my body freaks out and actually tries to tense up to hold me together. I also wear 3 braces layered on my right wrist and foot/ankle braces whenever I leave the house to hold my feet together.

11. Regarding alternative treatments I: use Pilates, physical therapy and massage therapy both concentrating on myofascial trigger release (if I have a normal massage, my body seizes to try to hold itself together and I spasm all night). I'd do dry needling if the state of New York allowed PTs to do it. And my mom is always finding stuff for me like a hand exerciser, an accupressure mat, LED light therapy - we're always on the lookout for anything that might help!

12. If I had to choose between an invisible illness or visible I would choose: I don't know. I know people with visible disabilities hate being stared at. But I get stared at and judged as I ask people to move their bags so I can sit in the subway because I don't look like I need help. I feel judged as fat and lazy a lot, tho I'm sure part of it is in my imagination. Sometimes I think if I had a cane or gave in and got a wheelchair I'd be treated with more care. But canes are useless to me and I want to be as normal as possible for as long as possible, so I only use wheelchairs at airports.

13. Regarding working and career: This devastates me. I loved my career. But I hurt too much to do 8 shows a week anymore. Just the commute would be so rough on me. I love doing readings and workshops - they hurt, but rehearsals and performances are limited, so it's worth it to push through it. I can't even offer my services to charity - I can't type much or use the mouse without pain, I can't serve food with my hands, I can't walk door to door, I can't make calls for more than about 30 minutes before my back and shoulders start to scream, not to mention my hands. Maybe as they figure out more about this condition, I'll be able to find a way to work again...

14. People would be surprised to know: how exhausting this whole thing is (see 8/14/13 blog entry "Hypervigilance (or So THAT's Why I'm So Tired!)"

15. The hardest thing to accept about my new reality has been: how limited my life has become. How much goes into figuring out every single day what I am capable of doing. And how, when I do some things that just HAVE to get done, I will pay the price in pain for 2 days after.

16. Something I never thought I could do with my illness that I did was: that's too soon to know - I'm still experimenting and finding my limits. I'm really really glad that I did most of the things I wanted to do while I was still able to pursue them!

17. The commercials about my illness: there are zippedy-doo-dah commercials about my condition. The majority of doctors haven't even heard of it, or vaguely remember it from 1 half-hour class on connective tissue in med school. They say it's rare, but we think it's just seriously under-diagnosed.

18. Something I really miss doing since I was diagnosed is: the diagnosis itself has not limited me - in a way it's opened my life up because now I know where the pain comes from. The things I no longer do, I gradually stopped doing a few years ago because of pain.

19. It was really hard to have to give up: my career in the Arts. But I refuse to give it up totally.

20. A new hobby I have taken up since my diagnosis is: this blog, because I got tired of hiding what was happening to me and I wanted to get a little more awareness for my condition. I have been greatly gratified that the other EDS sufferers from our support message boards have occasionally come to read my blog and said that I was able to put into words things that they could not. I glowed for 2 says when I heard that!

21. If I could have one day of feeling normal again I would: get myself back on a damn stage! (Really, what else did you expect me to say?)

22. My illness has taught me: to set priorities. I cannot function without setting daily - sometimes hourly - priorities.

23. Want to know a secret? One thing people say that gets under my skin is: "Yeah, I [couldn't sleep/my feet hurt/hate the humidity], too". I know it's sharing, but it makes me feel like my pain is being downgraded and completely misunderstood (BTW, the thing about humidity is I lose all my water, salt, magnesium and potassium from my body just like you do, but I have absorption problems and will be nauseated for hours while I try to get my levels back up. And my feet hurt because the joints are all pulling apart from each other as I walk or stand.)

24. But I love it when people: ask me if I have everything I need or if I need to stop for a while. Not falling all over me, just checking in on me. Because in my quest to appear normal, I'll often push myself too far. Asking me "how's it going right now" gives me the opportunity to ask for something I might really need without interrupting what's going on with everyone else and feeling like a bother. (Thanks, Ilana!)

25. My favorite motto, scripture, quote that gets me through tough times is: it's a meme that's attributed to Buddha, but it's not actually his: "In the end, only three things matter: how much you loved, how gently you lived, and how gracefully you let go of things not meant for you."

26. When someone is diagnosed I’d like to tell them: we all react differently to this, so educate yourself but don't believe the horror stories will necessarily apply to you. And stay as gently active as you can - the more you can strengthen your muscles so they can do some of the work that your faulty tendons and ligaments cannot, the more you will be able to enjoy your life.

27. Something that has surprised me about living with an illness is: that the people I'm most afraid of being a "load" to don't actually seem to consider me a load. This is particularly amazing when I read about all the divorces on the support message boards and when I see the statistic that the divorce rate among couples where one partner becomes disabled is over 75%.

28. The nicest thing someone did for me when I wasn’t feeling well was: give me my space. I'm like a cat when I don't feel well and I want to be left alone. That's hard on my boyfriend who wants to spend lots of time with me. So having him give me my space and just occasionally checking in on me was a real gift.

29. I’m involved with Invisible Illness Week because: this whole thing is important to me. I wrote to the mayor's office suggesting bracelets for invisibly disabled people so we could more easily ask for a seat on a bus or subway instead of standing in pain. They called and said they'd call again if they ever decided to follow up on the idea. Pfffftt! I'll try again if Bill DeBlasio gets elected!

30. The fact that you read this list makes me feel: really happy that you bothered to, and wondering how on earth you had the time for this much rambling! lol!

I have had only 1 night in the past 7 where I've gotten more than a couple of hours sleep. My legs are seizing with tiny spasms all over. It's been terribly humid - we went out on the bike for a short ride and I got nauseated from dehydration even while drinking my Gatorade and it took me about an hour to recover with salt and NUUN tablets in water. The AC is on in the bedroom, but my boyfriend is snoring and the apartment across the way has left their tv on again flashing lights into the bedroom so I've moved to the dining room to try to sleep on the sofa. A small bone has shifted out of joint in my foot and has been bothering me since I was making dinner. It hurts when I walk and I can't seem to figure out how to shift it back in. 

I'm tired half to craziness, I hurt, I'm too warm, I'm uncomfortable. I've taken a Tramadol and rubbed magnesium cream on the backs of my legs. And now I'm overwhelmed and crying on the couch. 

There is nothing amusing about this post - I don't have it in me right now. It doesn't usually all catch up to me like this, but it did tonight. I just needed to tell someone.

I'll try to be amusing again next time.


*UPDATE: 2 nights go I took a Hydrocodon pill and mostly slept (weird dreams, tho - that's the way I am with most opioids). Yesterday, I noticed the spasms starting again in the evening and thought "Nonononononononono...!", and took my new time-release magnesium pill with 1/2 a Tramadol. And I mostly slept again! I am greatly relieved by this, as I want to avoid as many opiate doses as possible...