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...

I am just sitting here. GLARING at this photo of a hard folding chair. I'm glaring so hard at it, you would think my butt was in it right this minute. No one I have ever met is a fan of these things - unless the alternative is standing, of course - but I actively hate them. I have no idea why they are so insanely hard on my body. And they are all over the frickin' place!

While I am in the process of filing for disability, I am treated as if I am someone trying to scam the government. This is protocol. There are limited funds available so, even tho my taxes have gone into paying for this all my working life, they make it as hard as possible to collect. This means you are often called in for appointments to fill out paperwork, pick up paperwork to force your doctors to fill out, and just generally prove that you need this so badly you are willing to be treated like a possible criminal to get it. I'm not happy about this. It embarrasses me. I already feel like a load on the people I care about. But I understand everyone has to do this. But why, why, WHY the insanely hard chairs??? If you are going to keep me in your offices waiting with a hundred people for 2-3 hours (yes, that's 2 to 3 HOURS - and I have waited for 5 hours before), why must the chairs hurt so much?

Now, the place that only deals with the disabled who are applying for services (FedCap), they have cushioned chairs. These still hurt me after about 30-45 minutes, but it's not the same kind of pain. I can shift around, bend over my knees, often pull up another chair to raise my feet - it's not great, but I can tolerate it. And they usually get to me within about an hour. But the Job Center where all we government leeches go - that place is nothing but hard chairs. And that is where we wait the longest. And that is where no one cares if you're just chronically out of work or if your body has rebelled against you in some way. If you want their continued assistance you damn well better wait.

And wait.

And wait...

In the hard chair...!

By the time I get seen, I'm usually in tears. It takes my body at least 2 days to recover from whatever that chair is doing to my spine and hips and shoulders.

But then it's over again for several more months.

I've read that, once people get their disability payments, even as small as they are they end up being enough that the other government assistance drops to about $30/month. And it's such a hassle for the disabled to get to the appointments and handle the paperwork that most stop trying collect it even tho they qualify for it. I sure as hell understand that. We'll see how long I can take it once I finally get seen and qualified.

In much happier news, I'm doing another ARGUMENT SESSION! Such fun - this one is about habeus and the Guantanamo prisoners and I'm playing Chief Justice Rehnquist. We had our first rehearsal at Ilana's apartment (they only last 3 hours and only happen a couple of times, so I tolerate the pain of the commute to get to do something this much fun!). Her apartment has cozy couches for me. But she excitedly announced that our next rehearsals will be in an actual rehearsal studio at CAP 21.

It was a real rehearsal studio all right! Guess what we sat in! 
(Hint: see picture above)

So, it looks like I may get the therapist who did my intake interview as my "actual" therapist.

This is great, because she seemed to see some things right off that I had taken for granted. For instance, she asked me how my sleep was (I don't - not much anyway) and she asked me what it was like to just walk around getting to appointments and the like. I told her that I stare at the ground a lot. That I'm always looking for holes, uneven pavement, little slopes, odd stairs, wobbly railings...because it's easy for me to fall and when I do, my ligaments are like Twizzlers and likely to tear. That's one of the reasons the tandem bike is so freeing for me - I get to look UP! Trees, sky, architecture!!

I told her how I spend a lot of time during my days just kind of scanning myself and trying to figure out if the pains I feel are "normal for me" or are something new happening. Is it just from Pilates or being on the bike or sleeping funny pain? Is it just stress on my back or shifting bones or a little sublux pain? Or is something dislocated? Is my pelvis gonna prolapse? Is my digestive system turning on me in a big way - is the diverticulosis about to turn into diverticulitis? If my stomach is burning, will this end my use of Advil and force me onto more Tramadol? What does every little thing mean???

I said that it must sound a little silly.

She said it sounded absolutely exhausting.

And I started to cry (!) because I realized exactly how right she was. And it felt so damn GOOD to hear someone say it!

It is frickin' exhausting. All of it.

Even tho that meeting was only an intake, I actually feel a bit better now, because I understand why I sometimes feel so overwhelmed when it seems like I have very little I need to actually do. I mean, I do have stressful things to take care of: the stuff going on with my deceased brother's estate (his bank closed his accounts and lost his money and have to get it back!!!), the trials of working my way through SSDI, even just worrying about my mother because she's alone now down there in Georgia. But I can spread those things out and still feel overwhelmed. And then I berate myself because other people seem to handle having so much more on their plates without the internal whining I hear myself doing.

It's because this stupid genetic condition is exhausting. Just keeping up with it is exhausting. Trying to live my life while keeping myself from getting hurt is exhausting.

Sometimes someone else has to point this stuff out for me to be able to accept it. And not be so hard on myself.

And that makes it easier to actually smile.

(PS: There's an update to my blog post about Telling My Agent - I got a response and they're very graciously gonna keep me on their roster. I'm very lucky!)

I have always had trouble asking for help.

I'm not sure where it comes from. My family was pretty dysfunctional and I grew up in a neighborhood where my oddness got me beaten up and humiliated on a pretty regular basis, but that doesn't quite explain it.

I have always swallowed physical and mental pain. Yes, I know that isn't healthy. I saw a therapist while I lived in Chicago, after my marriage broke up in a pretty terrible way, and kept seeing her to work through some of my guilt and anxiety issues and she thought I was pretty damn sane considering my strange upbringing. I'm no longer afraid of most strangers, tho I still can't really handle parties or networking events without wanting to cry, but I've read there are many normal introverts who feel the same way so I'm pretty okay with how I am on that front now.

But I find myself near tears a lot recently. I think it's just strain. Of multiple situations but all because of the Ehlers-Danlos. And I really can't share it much with those I care about.

When you have a condition that is not ever expected to improve, you end up talking about different variations of the same crap. No matter how much they love you, no one can take that on a regular basis. My stories are all variations on being tired, being in pain, being nauseated, dealing with the government as I work my way through the maze of filing for disability, losing the physical ability to pursue the career that I so dearly loved (and not being able to even offer to work for charitable organizations!), and feeling guilty that I have screwed up people's lives because now they have to take my disability into account for plans from simple shopping excursions to foreign travel that has been planned for years.

I looked for therapists to talk to that are covered by Medicaid (yes, I'm on Medicaid - a year after the government declares me officially disabled I am supposed to qualify for Medicare), but most of them seem to be specializing in addiction (I also need to add an endocrinologist to my physician team, but the ones covered by Medicaid all work in clinics and seem to deal almost exclusively with diabetes - my PCP says none of them would be a good fit to handle a rare condition like mine). 

I finally realized I could contact The Actors Fund -  love them! So I got a referral to a psychotherapy center in Brooklyn. This center is also connected to a drug abuse clinic. I tend to think their receptionist answers the phones for both. When I told her I only needed to see someone maybe twice a month, she was stern in informing me that it had to be weekly or nothing - did I still want to do an intake? I said, okay, I'll come in and see how it goes. "NO!", she said, "You cannot see how it goes! I need you to understand this." I had to accept that if I came in I was staying and would see someone once a week and if I didn't accept that I could not come in!!

Wow. I felt like I had been court-ordered or something. When she asked about the referral and I told her the Phyllis Newman Center, and she asked what they did, and I said they help women who've been diagnosed with chronic illnesses, her attitude did not change much...

Anyhow, the therapist is supposed to call me and get some insight into what I want to be seen for - I can get a better feel for whether or not this will work then. But this is NOT a good start - especially for someone like me who doesn't want to ask for help and is having guilt issues anyway.

I'm also supposed to meet up with one of my favorite people (& occasional director), Austin, after his show on Wednesday. While I know he's heard about what's been happening with me healthwise from our mutual friends, we haven't talked about my condition yet. (Austin labors under the charming delusion that I am extremely talented - a delusion that I happily try to encourage!) How much do I share about stuff like this with my friends, before I sound whiny? Or bitter? Before they just can't stand the strain of talking to me? I try to tell my stories with humor and a smile, but eventually it must just drag people down...

How much is too much to tell the people who love you? When does even just the basic information about how I'm handling this become too much of a burden for a normal human being?

Sorry this post has little - if any - humor. It's a pain day.

It's not that I don't have compassion - I do.

But this one group of people has been messing with me for years. And probably you, too, though you might not have thought about it much.

The first time was in high school, when there was always suspicion about your friends and drugs. Now, this was the 70s - there was good reason for suspicions about friends and drugs! But I wasn't doing any and still found freedoms limited because "well, you never know. Junkies..."

In the 80s, I was an impoverished stage actress living with a roommate in Ft. Lauderdale. Junkies broke in and stole my TV and my makeup bag with my contact lenses (it looked like a purse) and had unplugged the 2 VCRs we had hooked together - I came back with the laundry and they scooted out a window without them (one was borrowed!) One broke in one night and went into my roommate's bedroom and took her purse - she saw him and was terrified. (They also stole my next door neighbors' collection of mostly-gay porn. And some of it was really funny. A great loss...) And they were the reason we couldn't leave windows open for a breeze. In South Florida. Junkies.

That's obvious stuff. But how about this: I had some really bad allergies in Florida and I am a singer. After much trial and error, I found that Sudafed Non-Drying Sinus would unclog me but also allow me to sing. Hooray! I was their best customer when I was doing a show. Then they disappeared from the shelves - they had to be "reformulated". And you know why. Meth. Junkies. (The reformulation never worked for me - here is someone else bitching about it.)

When I had my 3rd knee surgery - a total knee replacement in 2000 - I was given Oxycontin for the first time. Knee replacement surgery is considered the 2nd most painful surgery (hip replacement is number 1), and the Oxycontin was a miracle worker! It took the pain down to a level where I could push much harder in physical therapy. Well, while I was in the hospital, anyway. When I checked out - still in out-patient rehab for many more weeks - I was switched to the much weaker/more side-effects/omg-I'm-so-constipated Percocet. And why was I not allowed Oxycontin? Thanks, Rush Limbaugh and the rest of you junkies!

So now I have a chronic pain syndrome. I am one of the lucky ones. My rheumatologist has been very careful working my way through different meds and we now have one for milder pain, one for I-am-never-going-to-sleep-my-muscles-are-spasming pain, and one for emergency breakout pain for if I sublux a rib or fall and tear a tendon (I've done both). But people with my disorder often end up in emergency rooms because something dislocates or tears that they can't handle (mostly, we just jiggle our bones back together, y'all, which the ER folks never believe), and because we have high pain thresholds, are used to being in pain and we aren't screaming, we immediately get categorized as a "drug seeker!!". ER doctors are called on to apologize to EDS sufferers all the time because they are unaware of EDS and ignorant of chronic pain syndromes in general. One patient tells of a disbelieving ER doc putting her on an examining table and YANKING on her legs - she basically dislocated this poor woman's entire body! And the reason we get treated as "drug seekers" as opposed to people who need help? J-U-N-K-I-E-S.

We have this idiot reporter from the NYT - not a doctor - who has written a book about how bad pain killers are for people. When the courts were looking at changing the laws about certain pain killers, they heard testimony for 90 minutes from people whose relatives overdosed using the drugs recreationally, but only allotted 10 minutes for testimony from chronic pain sufferers and their doctors!! Because? Junkies! (At least the AMA is looking into it now.)

Yes, I know - there are people out there who are more susceptible to pain killer addiction, and having several close friends with addictive personalities I truly do feel awful for them. But there are also people who ruin their lives because they are more susceptible to gambling, alcohol, sex - my best friend died because of circumstances directly related to his alcoholism. But, amazingly enough, even though alcohol, smoking and gambling can ruin and kill without providing ANY redeeming value, we don't treat everyone who orders a drink, lights up a cigarette, or pulls a handle on a slot machine like they are automatically abusers. So why pain meds? Which have huge value to those in chronic pain?

So I'm pretty worn out with junkies - they have messed with my life for too many years. Get off my damn medications and go get a bottle of scotch or some cough syrup or something (Hey! How come they're not restricting Robitussin??). Or campaign to legalize pot - I'm up for that! And can we please educate our doctors so their first thought isn't "junkies!" Let's get that first thought to be "this may be a person in real-but-not-obvious pain, let me take a minute to check this out". Heck, I'll even show you how my elbows bend backwards! Just take a minute to think of us as people first.

I could use a drink.

I'm very lucky - I'm with a partner who (mostly) gets it. It's not easy to "get it" when you see a person on a daily basis who looks perfectly fine but can't do all the things a perfectly fine person can. And gets cranky about it. I try to remember that I'm lucky - that it takes work to "get it". And that he really does work at it. Unlike so many...

I've mentioned the message boards that those of us with rare syndromes go to to share information about what we've found out, ask questions about what might be going on with our symptoms, and vent about problems with doctors/family members/employers who don't understand and don't want to try to "get it". I saw a new post today about yet another woman, married for over 30 years, whose husband is divorcing her because he can't handle the EDS. Her daughter is about to get married and she has 2 surgeries scheduled, but he has had enough and wants to marry her friend. This sounds awful. It IS awful. (And don't even get me started on the "friend"!!!) But I try to remind myself that it takes a very tough person to be by someone who is in pain a lot of the time that they have no power to make better. Another poster said she had to move back in with her mother when her last employer set her up to get fired because he was tired of dealing with her disability. Her mother has her own emotional problems and accuses her daughter of malingering and of not actually being in any pain.

It is natural, when you love someone, that you want to "fix" situations that cause them distress. And it's frustrating to find yourself doing stuff around the house that has to be done that your partner could do before, but now she's sitting on the couch with her feet up (our blood drains to our feet and tends to stay there, causing pain and low blood pressure - most of us are most comfortable with our feet raised, but it makes us look lazy as all hell!) And it's terrifying as a parent to believe that your child is in actual physical trouble, plus there's the guilt that comes with passing on a genetic condition. It's all so fraught!

I'm lucky. My mom gets it. She buys me braces for my feet, pays for my Pilates therapy, and understands that the smaller pains she has - from a condition she never even knew she had - are magnified in me. And I don't think she blames herself too much - she knows it was out of her control.

My wonderful boyfriend is really "getting it" now. He did not sign up for this - it took us both by surprise - and there have been times when he didn't get it and would ask me some stupid (well, to me it felt stupid) thing about "why can't you...?" and I would cry and yell "Because I have f*cking, EDS, goddammit!!!!" (I am not always attractive and lovely ;)) But now he gets it - I think as much as someone who doesn't have "it" can. I'm slower. I lose my balance. I can't walk as far or stand in a line. I sit up in bed lots of nights with muscle spasms (and - god help him - I SNORE! Even when I'm SITTING UP!) I can't jump right up when he calls me because a) my feet may be out of joint and I have to check and b) my bp might be very low and I could keel over. I have that southern belle attitude where I try for too long not to be a bother, and that means when I finally admit that I have to sit down, it means I actually have to SIT THE HELL DOWN RIGHT NOW! But we're both learning. And last week, he bought this:

That is Rick beside a tandem bike. He has his own bike, which he loves, but we started renting the occasional tandem a couple of years ago. It could be expensive, especially because if it turned out I wasn't quite up to it, we had wasted an expensive rental. But I loved being out in the sun and air. So he did the research and bought us our own (notice the extra padding on my seat). He has to do almost all the work - my legs can't handle a whole lot. And when it's hot, I need to stop for water and salt and to put my feet up on a bench for a bit, cos I can get really light-headed and nauseated. But he doesn't seem to mind. And it's given me a sense of freedom that is indescribable!

It's not easy being with me day-to-day. I hurt and I'm tired and I'm cranky and I can't do all the stuff everyone else wants to do. And there are a lot of people on the planet who just cannot deal with that. And I appreciate how lucky I am to have this wonderful guy in my life (especially when I make short-tempered, smart-assie faces at him)! Thanks, Honey - I love you! (And I'm so glad you might have finally found earplugs that will block out my snoring. Egad...)

So, I got to do another ARGUMENT SESSIONS workshop. This is the interactive idea by my dear friend, Ilana Becker, involving using the actual transcripts from Supreme Court hearings in a casual setting. One of our cast members, Maggie, described rehearsing it as "like being in a really nerdy book club". I agree and I love it.

So preparing a workshop requires rehearsals. And rehearsals require commuting. Which is pretty rough on me (see "Stairs. Oy" 5/18/2013), but which is totally worth it for this wonderful experience. So when it turned out that another cast member, Joel, had an audition early the next morning and was taking a cab home that night and he offered to share it - and it turned out he lives 3 blocks from me - I jumped at it!

Joel and I don't really know each other and we made small talk in the cab about how our days had been long - he had done a workout and I had a Pilates session. For some reason - maybe because I've chosen to stop hiding in general - I told him about having EDS. It turns out he had a friend with Marfan's, so he understood! How wonderful to be understood!! Then, a strange thing happened: our cabbie turned around and chimed in.

Now, I've talked to cab drivers many times. Sometimes it's just pleasantries, sometimes it comes out that I'm in the theatre and they've written a screenplay, sometimes they are flirtatious. But I've never had one insert himself into a conversation about such personal matters before, as if we had asked his opinion:
"You know why people here have health issues? If I go to a doctor and you go to the same doctor and I get better and you don't, is that the doctor's fault? No! People here don't know about God's Will."

I swallowed hard. I worry about strangers bringing up God's Will. Some people who bring up God's Will can be very scary people - I am related to one of them. He went on:
"My wife had problems in her joint. The doctors wanted surgery. I said 'No!' Instead, I boiled goats' feet and made her drink the liquid. She got better. No surgery!"

Now, already we have a disconnect - if it's "God's Will", are you supposed to treat it at all? Or are boiled goats' feet some kind of exception to the rule? I was mulling over something innocuous to say, when Joel came to my defense! He said he totally believed that goats' feet had helped this man's wife - after all, that's where gelatin comes from and it's a building block - "But", he said gently, "my friend here has something a bit more complicated and extreme than an injury in a joint. She has a genetic problem with the way her body creates collagen, and that affects all the connective tissue in her body, so it's a bit different."

Joel's statement seemed to give me the nerve to speak. I told how it affects all my joints, digestion, heart, everything. Our driver expressed surprise and wonder at such a thing, said it must be tough on me. From there, the conversation turned to him advising us on not eating processed foods, where to buy non-nutrient-depleted produce, and how to cure a festering fingernail by wrapping onions around them (which he had done twice. TWICE!)

I thanked Joel as I left the cab (and asked him if he tipped extra for all the medical advice). I wasn't going to stand up for myself at all. But he did it, and in a kind manner that didn't offend our driver. He said that if I have been wrestling with this condition for a while, I probably knew pretty much all there was to know about treating it, and he figured that I really didn't need a lecture from someone who didn't know me or the condition. What started off as me feeling blamed (as we often do!!) for not being "well", turned into sympathetic ears from both gentlemen. And I ended my evening feeling understood - that's rare and wonderful.

So don't eat processed foods, buy fresh fruits and vegetables from our driver's friend on Coney Island (imported fresh from Lebanon weekly), wrap your infected fingers in onion, and if your joints hurt, consider boiling some goats' feet. Let whoever your particular god is figure out his "will" on his own time. You and I will just keep plugging along. And, sometimes, we'll even feel understood.

I don't like stairs.

Now, I know many, many people are not big fans of stairs - especially when carrying things like groceries or baby strollers. But I see stairs and I just groan - I always have.

There is a very entertaining thread on the EDS Message Boards called "For FUN! "You might have EDS if..." We all like threads where we can have a sense of humor about this thing we all share different versions of. One of the ones I added was "You might have EDS if you fall UPstairs as well as down!"

I've always done that - all through school, tripping and falling up and down stairs. And my mom says that when I was around 3, the neighbor whose house I'd been playing at told her I fell straight down their stairs like they weren't even there - I just kinda dropped (she apparently found it amusing. I never really liked her a whole lot -  guess it must've been mutual!). I've been told that when I fall, it doesn't look like a normal human falling - I look like a marionette whose strings have been suddenly cut. Picture it. <floop!> Must be odd to see.

SO I don't like climbing stairs a) because I have exercise intolerance (that sounds like a high school gym class joke excuse, but it's an actual real medical thing - still, I wish I'd known that phrase in Junior High!) and b) my left knee has an unrepaired torn mensicus - my right knee has had multiple surgeries, but it's holding up better than the left. But, as I've said, lots of people hate going up stairs.

But unlike most people, going DOWNstairs is worse for me, because of the mentioned-in-a-previous-post lack of proprioception - I don't know where my joints are in space. And, even braced, they're weak. And my bones move. And people don't have ANY way of knowing this as they push past me and I vividly picture falling forward and kissing the cold, disgusting subway steps. It just scares the crap outta me (and not just cos "ew! subway steps!", but that's almost enough.)

NYC is a city FULL of stairs.

Subway stairs, jerry-rigged and seldom-repaired backstage stairs, old steep stairs with rickety handrails in ancient buildings (especially scary to climb down after I'm shaky from my Pilates class), stairs up to stores, stairs down to offices. My apartment building has an elevator, but you have to go up a flight of "stoop" stairs before you can get to it! Only some of the subway stops have elevators or escalators and they are frequently being repaired - there's nothing quite like the thrill of getting off your train and seeing the boarded up and padlocked "Excuse Our Mess While We Improve Your MTA Service For You" signage that you know is hiding a dead escalator. (I was told they die frequently because people - and by that I mean almost exclusively male people - pee on them. STOP doing that!)

I've been asked to participate in the next "Argument Sessions" - it's a one-night presentation of a theatre workshop using actual Supreme Court transcripts and I loved doing the first one! It's one of those projects that requires a few short bursts of rehearsal and then we do it, and my body can mostly handle that. But the place it's done is by a subway stop with a broken escalator. The last time I did it, that stop AND the connecting stop I needed BOTH had broken escalators. I had pain all over the next day. I felt it was worth it.

I mean, I can't not do some creative work - stopping everything you love because you've become disabled leads to depression pretty damn quick. And this is an insanely interesting project  - I have some damn talented friends and Ilana Becker, who created this, is one of the most fun to work with! 
But I also know that the stairs are coming. 

The stairs are coming. 

The stairs are coming...


 

This is all new to me, so I look for insight wherever I can find it. I'm a reader, so of course, I head for books! Wonderful, wonderful books!

When I look to books for inspiration in living my life with this new awareness of what my body can and cannot do, I find titles like these:
Being Sick Well: Joyful Living Despite Chronic Illness
Being Well (Even When You're Sick)
Doing Well at Being Sick: Living with Chronic and Acute Illness
How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers

There is nothing wrong with the content of these books - most are helpful. But I have trouble with the word "sick".

People with chronic pain/fatigue syndromes often use the words "sick" or "ill". But the word "sick" bothers me. I don't feel sick. I have a genetic collagen defect - the "glue" that is supposed to hold my body together is less Super Glue and more that paste glue you ate in 1st grade (you did, didn't you??). Because my bones often subluxate ("sublux" is when they shift out of joint but shift right back in again, unlike a dislocation where they are really out and stay there a while - only my knee and some little bones in my feet have dislocated, as far as I know), and because I have muscles desperately trying to do what my joints, tendons and ligaments cannot do, I have chronic pain + fatigue. Sometimes I don't even notice it's there because it's there all the time - until I get a pain burst: from a pull, or a microtear from a sublux, or fall because my coordination is a less-than-stellar (that's called "lack of proprioception" - our joints are loose so we're not sure where they are in space). That's not "sick" to me. That is "disabled".

"Sick" is when I get the flu. "Sick" goes away. "Disabled" means my abilities have changed - they have become more limited. "Disabled" does not go away. Saying I am "disabled" doesn't bother me. Saying I'm "sick" or "ill" does. It just doesn't feel right.

I love words and their usage, and these words bother me in this context. I don't really know why this is. Maybe I haven't been living it long enough to know yet. Or maybe I'm just cranky ;)

Don't worry, though - I'm not gonna get upset or or judgie if you use those words. (However, I will still judge you on "their", "they're", and "there"!)

Having an agent in NYC is a big deal. It's hard to get one, hard to keep one, and hard to work much without one. Even tho I haven't really been able to work, I am loathe to give up having an agent. With my agent, I don't have to put my contact info out there - his phone number becomes my phone number. It provides both a feeling of safety and accomplishment. 

But an agent can only represent you if they know what is going on with you. And this isn't something I can hide anymore. I don't get many people asking to see me anymore - my popularity rush after Adding Machine lasted about 2 years, then it was over - but I do still get requests to audition for things every now and then. Most are readings or workshops, which I LOVE to do. Last year I had a request to audition for the role of the Grande Damme in the Halloween production of SLEEP NO MORE - it KILLED me to turn that one down, but I saw the hours and knew I couldn't physically handle it...

I really should have informed my agent about my condition before I released the blog. But I saw that the blog was turning up in searches even with the link on my website hidden, so I knew I needed to acknowledge it. And that has forced me to send an email to my agent. And god, was that hard. I'm actually nauseated from the anxiety.

I don't expect them to market me anymore - I just hope they'll keep me listed as a client so people can reach me. But it is absolutely understandable if they don't. Agents are about business - they have to be. We'll see what they feel they can do about me.

UPDATE! August 14, 2013
I got this in my email today: 
"Cyrilla, my apologies, I did read this back in May but neglected to respond to you. Of course I will still represent you in any way possible. I hope you're doing okay and please, stay in touch and let me know what's going on. xxoo,Gary."
I'm a lucky - and grateful - girl.