I worked on a kibbutz

I worked on a kibbutz

They were screaming at each other in Hebrew. My head swung back and forth between them, my eyes wide. Two minutes on the job and I was already questioning my judgment committing to working on a kibbutz in Israel. 

Yosie, the man I'm standing with in the photo ran the "meat" side of the kitchen. My boss Tzila ran the "dairy" side of the kosher kitchen. I was living on a religious kibbutz in between Tel Aviv and Jerusalem. My job six days a week preparing dairy meals served at breakfast and the evening for around 800 kibbutz members.

I was very nervous on the first day of the job as I watched the two head chefs hollering at each other with such intensity. I couldn't help but whisper to Tzila later, "what were you fighting about?"

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I lived in Lake Placid

I lived in Lake Placid

I became a waitress at the Lake Placid Manor where I met a woman my age who was already a former pot grower trying to avoid the law, a tough but sweet Russian couple, and Reggie the line cook! He was kind but getting older and hit the bottle too much. I had to pick his hair out of the plates I was serving more than once. It was a motley crew and an eye-opening experience for a sheltered Jewish girl from the west coast.

I hated waitressing. Although I would later work in the culinary field, this was my first paid job in food service. I worked the day shift which, of course, was much shittier tips than the fine dining evening one. I didn't have the knack for getting good

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I so weird

I so weird

According to family lore, I used to say "Mommy I weird?" when I was around two years old. Somehow I sensed I was different even then.

Fortunately for me, I've been lucky enough to find kindred spirits along the way who not only didn't mind my weirdness but encourage it.

This photo is from college. I can't remember the details around this photo but I don't think it was Halloween -  my college roommate Shannon and our gang always wore much more elaborate costumes than this. It's quite likely we painted our faces for no reason at all. 

We were weird like that. 

One of the reasons I chose

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I hate the drug prednisone

I hate the drug prednisone

I hate prednisone. I hate it with a passion. I worked so damn hard in my twenties to heal the Inflammatory Bowel Disease (IBD) because I desperately wanted off that drug.

It was partly due to vanity - you can see how puffy my face is while on the medication in my early twenties - it also caused other side effects. Horrible night sweats that had me going through four t-shirts per night. Hyperactivity. Depression. Creepy, weird dreams. Distortion of my body. Acne, which isn't apparent in this photo but I often had it.

I've never had my bones tested out of fear that they will tell me I have 90 year old brittle bones. Prednisone isn't good for the bones.

I was on oral prednisone, which is a hard-core steroid

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I like being aggressive

I like being aggressive

I liked being an athlete. I always felt comfortable in athletic gear - and still do. On the field, there were specific rules to follow, structured chaos, and the ebb and flow of organized team work. It was also somewhere I could let my Alpha Female Flag fly free. 

I hadn't thought about it before but the goal of this writing project was to randomly choose a photo from a large pile and write whatever comes out. And here it is.

During sports, I could be aggressive, bossy, and tough without anyone thinking I was "weird." I wasn't very skilled at soccer. I had no fancy footwork techniques and was often stuck as fullback or sweeper since I can kick with both my left and right foot. I think I scored one goal in all of high school. 

But I was fast. And I wasn't afraid to run straight toward an opponent

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I felt like an alien

I felt like an alien

This photo represents exactly how I feel inside and have felt inside my entire life.

Like an alien. A dorky, awkward adolescent with antennas that everyone can see.

I feel a lot more like this girl than I do the woman I posted yesterday, all dressed up and socially acceptable according to American cultural standards!

I know I'm not the only one that gets locked into a certain perspective of ourselves that carry through life, even when we've outgrown it years before.

The challenge of trying to find our authentic selves

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I was miserable when I was hot

I was miserable when I was hot

I was miserable in my life when this photo was taken.

I wouldn’t admit it to myself or to anyone else at the time.

The misery stemmed from so many things. I wasn’t doing any real work on myself (although not for lack of trying, I couldn’t afford a therapist in New York City where insurance rarely covered the good ones who charged $200 per hour).

My fears around intimacy had me isolating more and more until most of my relationships were distant or untended.

I buried myself in my work instead of facing my uncomfortable emotions like anxiety and depression.

Looking back, I think a lot of that anxiety and depression stemmed from me feeling like I didn’t belong. 

That I was misfit for being a "pretty" girl who didn't want to get married.

That I felt annoyed when I was objectified when I did dress up and go out.

That I was strange for voicing my irritation about how women were treated in our culture.

I can't remember what I was thinking when this photo was taken right before my sister's wedding. But I'm sure it had

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I lost another organ

I lost another organ

I've been dehydrating faster than usual lately. I know why. I didn't want to tell you. The stress from fighting for the ACA was too much for my barely working adrenal glands - which is a tiny but crucial organ that is part of the endocrine (hormone) system. Whatever function I had left, is likely gone. I started a drug called fluticasone last week, which I think has been working. It's acting in place of a hormone called aldosterone which my adrenals should be making, but can not anymore. 

Aldosterone is in charge of reabsorbing fluids (you know when you pee a lot when you drink booze? It's because aldosterone stops working, hence the dehydration after a night of drinking.) The bummer isn't just that the drug has a lot of side effects (which thankfully I haven't noticed...yet) but I'll have to be on it forever. It's replacing my adrenal function now along with the hydrocortisone and DHEA I've been on for 6 months. This makes me sad. I essentially lost another organ.

In the mean time, while waiting for this drug to kick in and praying it works, my prescription for home fluids is now ELEVEN LITERS per week.

THIS IS NOT NORMAL.

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I don't want to be invisible

I've always been ashamed of the fact that I wanted so desperately to be heard. It's why I've been so obsessed with becoming a writer my entire life. An urge I could not stifle.

I mistook it for ambition for many years, an easy thing to do when living in New York City. And for awhile, I let the ambition dictate my actions. I worked from a place of ego. Which I don't recommend. It just made me sick.

It's hard to miss the theme of my posts these past weeks about being "seen" and "heard." Now that the dust has somewhat settled, I'm thinking back on my own words. I often release a post without much self-reflection. Not always, but sometimes I write fast and furious, push "post" before I even understand what it is that I said to you.

I still haven't listened to the video from the Town Hall. I had no speech planned that day. I just let the words fall out. Whatever they were, they weren't meant for me anyway.

Now, I lay in my bed on a gorgeous Sunday.

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Death sounds easier

Death sounds easier

WARNING: This post may not be for everyone because I discuss difficult topics like death and suicide. If you are having thoughts about hurting yourself or others, I URGE you, please, to seek professional help, tell someone you're struggling, be honest about your pain. 

I know, I know, this title sounds super scary IF you're able-bodied. Many sick peeps would simply say "yup."

Let me explain before the word "death" triggers a totally negative connotation.

Because frankly, I'm tired of feeling afraid to discuss Death and even, Suicide in our culture.

If we can't talk about them, how do we work through our feelings about them?

That I'd like to discuss.

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I'll never be the same

We all do it.

Leave clothes in our closet that we don't wear anymore. 

I lived in tiny apartments in Manhattan for so many years AND I've been a gypsy so I'm usually good at getting rid of them.

Lately, I've been tormented by the clothes hanging in my closet from before my March 2014 surgery. 

Clothes I brought from San Diego via New York. They've lived in three cities. Even with my curating skills, I wouldn't get rid of them.

Many were "office" clothes, button downs, work skirts, dresses for business meetings. Some were "going out" clothes.

I know that for most people that doesn't seem so weird to hang onto old clothes. 

But for me, this has been a much more significant act of denial.

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This is why I'm in pain

This is why I'm in pain

No, I'm not pregnant. I know that would be a much sweeter reason for this photo. But physically impossible for me at this point.

I promised you more truth about my condition. I know it's hard for you to imagine why I'm in pain. Or why I can't move food through my intestines. Or why I have to be home a lot or cancel last minute. I'm finally going to explain. 

I took this photo last week after I broke several of my own Food Rules. I ate fish after 10pm along with some avocado and coconut ice cream. My Food Rules are based on what causes problems and what doesn't - although I'm constantly making refinements and tweaking things as I go along and by no means an expert on my own condition yet. Far from it. I just know the bare minimum of keeping myself alive and minimizing pain.

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I'm freaking out

I'm freaking out. I've been through such hell these past few years. But nothing, NOTHING freaks me out like an impending vote on health care. Not cancer screenings. Not the mystery surrounding my digestive issues. Not even knowing I'm at risk for so many cancers. 

When there is about to be a vote, I'm so agitated, I have trouble thinking about anything else. I barely read books anymore - which used to be a soothing hobby that ALWAYS gave me pleasure. All I can do is obsessively read articles. I've noticed that I post more frequently - often about something I wouldn't normally post - as a way to calm the anxiety.

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The difference between JOY & HAPPINESS

Some days I feel like things are going to be all right. Other days I feel like my head is going to explode. Reading the news plus my fucked up life can really mess up my head.

I refuse.

But man is it hard. 

I've been eating basically the same thing for 7? 8 months? Started in early October. I have all these tricks to limiting the pain. Doesn't always work. I do yoga all of the time. I'm more limber now than I was as a kid during gymnastics. I think the yoga somehow must help counteract the darkness. Sometimes I boogy down because moving my middle around helps jiggle my insides. 

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I get jealous

I get jealous.

Of course, I get jealous. I probably get jealous about things that most other people don't get jealous about. You can catch me eye-fucking corn-on-the-cob as I walk by people eating at a restaurant. It may look like I'm looking at a wedding ring or the cute dude. But really, I'm thinking about what it would be like to gnaw on a juicy, fresh off the grill buttered salted cob. Or, the greasy chips and salsa. Or, the sushi...ok, I'll stop now. 

You get the picture.

Some people that have food restrictions or are on diets try to tell me they understand what it's like.

Don't. Please.

One of the things I work hard to do is make you feel comfortable with my fucked up situation. I try really hard to not focus on my own problems. Complain.

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Feeling some post-trip letdown

I've been back in town now for a few days and feeling a little lost. I spent so much of the last couple of months focusing on preparing for the New York trip that I'm not sure where to channel that planning energy anymore. 

So many people would love to not have to work! And I know that's a huge privilege in my life that I'm in this position where I don't have to worry (for now while my parents are alive and still working). But I miss it so much! I don't know what to do with myself every day. Going to so many appointments feels like a job, and takes up a lot of time. But it's not the same as channeling my energy into a creative and/or professional endeavor. I'm only 45 years old! In my prime. I've lost so many years of working that I don't know where I'd be now if I'd been healthy since 2010. But I know it would be have been exciting and challenging in some way.

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I'm still me AND disabled

I made it back from New York!! I was nervous about the flight because I had pain on the way there. But I made it back!

Everyone knows flights are dehydrating. For me, of course, this can be a huge problem. I dehydrate easily these days because my lame adrenal glands don't produce enough aldosterone which is in charge of reabsorbing fluids. Add that to a missing colon - which is also in charge of reabsorbing fluids - and some other factor like a hot day or a long flight, and I'm PARCHED. 

It took a long time to find the right doctor to oversee my adrenal issues. But I finally did in early January. I've been on DHEA and hydrocortisone since

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I made a new discovery

I discovered something new and very crucial on this trip to New York City. I feel MUCH better when I have 1 liter of fluids per day over 2 hours rather than 2 shoved into me over 2 hours (which is very, very fast and nobody can believe I can get all that and never pee or have any BP issues). 

THIS IS HUGE NEWS FOR ME. It forces me to reveal something I'm embarrassed to share but f#&* it, if I'm going to share my medical case in order to get help, I'm going to have to post this stuff ANYWAY. I need to be brave and just start sharing!

GETTING ONE LITER A DAY HELPS ME POOP BETTER than 2 liters every few days.

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I'm going to New York City!!

I'm going to New York City!!

Yes, it's true. I'm getting on a plane for the first time in a YEAR.

TOMORROW.

O-M-G

I didn't want to share anything about the trip until now because there were so many variables that could have prevented it from happening. If the weather was over 85 degrees for more than two days, I would've had to cancel. If my stomach started giving me grief, I'd have to cancel. If I got inconclusive news regarding a cancer screening (which I don't always share publicly), I'd have to cancel. So many variables.

I'm such a fragile organism now. Which I find highly irritating. I don't see myself as fragile, never have. But it's a reality I can't deny these days. 

There are a few reasons for the trip:

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I'm glad I'm not a mom

I've never felt more relieved in my life to not be a mom. There I said. I promised you honesty! The Internet might explode more from me saying this than our current administration committing treason. But you know. Priorities. 

The weird thing is: I always figured I'd become a mom. While at the same time doing everything I could to avoid it. How's that for ambivalence.

I see now that I figured I'd become a mom because that's just what women in my family, in our culture, do. Also, I'm really good with kids. That's partly because I started raising them while I was still a kid myself. 

By the time I was six years old, I had two younger siblings and two younger cousins that lived across the street. By the time I was eleven, there would be two more cousins for a total of six younger kids I helped care for. I literally have no memory from my childhood where I was not mothering children.

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