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.