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Selfie 6

I made my appointment with a spinal specialist and will be seeing him next week. Spent the day kind of reeling, still, from everything. It’s hard to see how the rest of my life looks from here. It’s hard to concentrate on law school applications when I don’t know where I’ll be 6 months from now. It’s hard to think about the fact that we booked a flight to Puerto Rico and 12 days in a beautiful artist’s retreat in Viejo San Juan for an extremely belated honeymoon (not to mention the first vacation we’ve ever taken in our adult lives, ever,) when I have no idea what it will be like to be alive during June 2017.

Just got to keep all of my parts together.

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See: Selfie 5

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Selfie 5

Today was a hell of a day.

I found out I have degenerative spinal arthritis and two herniated disks, with a third starting to go the same direction. That’s it right now. I have a referral for a spinal specialist whom I hope to see next week. I guess, it’s possible, things could all change when he takes a closer look. It could be that they have not yet herniated, but I may honestly be a little pie in the sky with that one. It’s been years. The pain is unbearable. There’s no doubting that.

I think it would be silly of me to not have expected some bad news, you know. During our slow, patient walk to the office, today, I said to Aaron, “I think, unfortunately, that the best news today might also be the worst.” Meaning, that I really didn’t want to hear that there wasn’t anything wrong according to the X rays. I didn’t want to leave with more questions than I started with. I wanted to know something. And now I know something. With all the pain I’ve been through it was pretty obvious that something was wrong. Very wrong. So, like, good to know. But I’m really not feeling great about anything.

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Selfie 3

Got out of bed a little earlier this morning than others. My upper back starts to spasm, sometimes, after a night of overcompensating for the potentiality of lower back agony. So I wound up on the couch around 7am or so with the cats. It smells like heat in the house right now, which I love. With twinkle lights around the windows and the smell of a hot radiator, it’s really starting to feel like the holidays are happening around me even if I’m not playing an active part. Struggling with how to handle holiday gifts this year.

Getting my X rays read on Wednesday.

Cried a lot after seeing if I could qualify for SNAP or disability in New York.

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See: Selfie 2 

Moratorium.

I have desperately been trying to avoid social media in the last few days. My pain has been bad and I find that every single time I’m doing the cycle on my phone (Gmail, Facebook, Instagram, Twitter, Snapchat, repeat repeat repeat…) I get more and more anxious. Reading posts on Facebook almost immediately makes me anxious, sad and angry. It doesn’t matter if I agree or disagree, I just do not seem to be able to handle reality outside of my own kind of tiny, currently dark world. My anxiety and anger, sadness and frustration only feed into the discomfort.

It’s so hard right now to stop myself from a quick CMD+T to check Facebook. For what? For what?? 

I am always in the apartment. Standing in line for anything is enough for the pain to come and ruin the rest of my day, maybe week. There isn’t anything too close to our home right now. The nearest coffeeshops and so forth are roughly a half a mile away, which used to mean nothing to me. I used to walk to work, 3 miles every day. At this time 2 years ago, I was jogging home with my backpack, 1.7 miles 3 days a week. Now, even a short walk in the wrong shoes can lead to later agonized immobility. I AM SO FRUSTRATED. If I do get out of the house, for a doctors appointment or something, I can’t even keep up with a New York pace any longer. I take short, careful and measured steps. I have a steady pace and think about every step. Curbs are often a challenge. A step down taken too hard can be the end of my journey. Sometimes it feels like the only thing I can do is surf the web — checking the same sites over and over again. It provides almost complete and utter, empty brained distraction.

I feel broken, socially. I feel like I have nothing to share, give. It feels difficult to provide conversation. I’m not sure, when someone asks me how I am doing, if they really want to hear my answer. At the same time, the fear of missing out is so real. I miss being at the bar, at our favorite haunts, with our wonderful friends. I miss being ridiculous. I miss dancing. I’ve only really been laid up about 5 or 6 months, but it’s really put some shit into perspective. I feel so silly for not moving more when it didn’t hurt so bad. Things like standing in lines has been throwing out my back for around 8 years, now. But at least back then I could still dance, run, somersault, swim, jump, play and wiggle. I want a magic cure, I want a time machine,  I want to feel like a normal person.

I can’t even begin to imagine what people who have been in worse pain for longer are going through.

Fuck, what a thought.

Even the projects I do want to start, that could potentially keep me busy, are seemingly impossibly out of reach. See, it turns out that doing stuff actually costs money. And when you can’t work or walk, money gets super tight and those kind of things go out the window. You are mopping the floor with dish soap — you aren’t buying podcast equipment or books for law school. Or even applying for law school, because it turns out that that costs a buttload of cash, too. It just adds to the cycle, the stagnation, the sometimes overwhelming feeling of failure and frustration.

Man, this has been pretty therapeutic, really. If someone actually reads this, thanks. Just going through it right now, hypothetical dudes.

Selfie 1

There’s this thing that happens when the only photos you share are of those moments you are doing something that makes it look like life is always on some ultra lightbeam trip. What this does, for those people who suffer chronic pain, is increases the likelihood that people are going to tell you how great it is to see you FEELING BETTER. Truthfully, a picture takes a moment to capture. It represents seconds, nothing more. Even a short video of awkward movement (there were a couple videos a close friend posted of me ‘dancing’ on Thanksgiving that represented approximately 20 seconds of the entire day – bookended by sitting, and we were dancing in slow motion,) seems to make people forget the word “chronic” at the front of your condition. I am not feeling better. I wish I was. I just managed to do something for a few moments. I may have even hurt myself doing it. It doesn’t feel like a victory to me, any way you spin it.

I think, for no particular reason at all, I’m going to try to share a selfie every day of what I am doing, no matter how mundane.

So here’s me, today. I went from the bed to the couch, took a hot bath in the evening, and came back to the couch. I’ve been in some pain today, afraid of my back going out. I was in worse pain yesterday. I am more worried than usual because I am out of meds. My new doctor didn’t want to prescribe me anything to put me out of pain, so here I am taking probably too much OTC medication to my detriment. But I don’t know that for sure, I guess. It’s all part of the ride. I had X rays and this last Wednesday, and return this Wednesday to my PCP for my bloodwork results and imaging results. Hopefully I get something concrete to hold onto. I will be content with the next step forward.

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twinkle lights and sweatpants

Apologies.

When you live your life scared of almost everything, you tend to have to give a lot of apologies.

Lots of apologies sent when breaking plans. Social situations make me incredibly anxious. It could be 1 person or it could be 30, it doesn’t matter. I’m anxious. If  there is free/cheap/any booze to be had, I will be having some. I might accidentally over drink just to make things manageable, rushing through my first cocktail, making awkward jokes about “social lubricants” and laughing at myself. Then maybe I drink too much and I become unmanageable. I might say some stupid things. I might embarrass myself. And then all of this new embarrassment feeds into the next time I’m in public. It cycles. Like everything.

But, also, it’s hard when you have a lot of pain and you aren’t sure if you should or shouldn’t go out on a particular day. It’s hard to know if that’s a valid reason to break existing plans. It’s hard to know if insomnia is a good reason to break plans. It’s hard to know if massive anxiety is a good reason to break plans. It’s hard to tell people the truth when you don’t know what they’ll say. It’s hard to know if what they say is the truth because you can’t read their mind.

There’s the apologies after I ignore my phone for the umpteenth time. The phone sucks. I don’t know what happened between the phone-OBSESSED years I spent as a teenager I experienced and the absolute, heart-jumping fear I experience when the phone rings, now and for the last ten years. Part of me thinks that it’s about the time that landlines became a thing of the past and suddenly people could call you anywhere you were. We’re not alone anymore, we’re being stalked every day. You don’t go to the park and leave your TV, computer, and phone at home — you bring them with you in the form of a tiny infinity box. You never left your living room and you’re going to get a sunburn. I miss when leaving the house meant no one really knew where the hell you were. Like, you told your parents what your plans were… but how would they really know?

I send a lot of apologies because I don’t respond in a timely manner to things that make me anxious even a tiny bit. A person I’m nervous about, a subject I’d rather avoid, something I’m feeling particularly sensitive about that day, or because I am in such an ugly place that I literally can’t handle any part of my adult life and spend the day cleaning the house, crying intermittently.

I feel like I might have to apologize for this entry. There are always the inevitable people with whom I attempt to share my fears with who tell me “Oh, but you don’t have to feel that way with me.”  And that makes my heart speed up. That makes me clam up. I’m done sharing with this person because they clearly do not understand how this silent terror tends to operate. The anxiety grows when they message me. They must be thinking that since we had our conversation and they assured me I had nothing to worry about that I’ll pick that phone right up! No ma’am.

And maybe they aren’t thinking that, but I don’t know that. I don’t know anything other than the crushing fear of potentially embarrassing situations. I don’t know anything other than the remembered pain of past regressions against some invented and unreasonable standard I’ve placed on myself and reality.

I’ve missed weddings. That hurts so many people. I feel awful. I stay up at night thinking about things that happened a decade ago, wondering how I could have changed them, fixed them, or lived them differently. I’ve missed graduations and deaths, births and birthdays, and didn’t even initially pick up the phone when my mother called me from my dad’s cell to tell me I had to come home and we were losing him. I still don’t know exactly how I feel about that. Some things don’t feel remotely appropriate to even attempt an apology, so I just stew and feel horrible and know that I messed up and continue to feel helpless.

I apologize for apologizing so much. All the time. For everything I do, say and think. I apologize for my very existence sometimes. At least that’s what it feels like. Like, I have to apologize to the people in my life constantly for the mere fact that we are existing on this same terrestrial plane and they have to deal with me. 

Already in my head I’m thinking, “I’m going to have to take this entry down,” because it’s just too embarrassing. It’s too self centered, or something like that. It’s too painful and weird. Someone is going to have something to say and they must be right, right? But that all goes back into the cyclical nature of fear and how it can affect the human mind. My human mind, specifically.