Selfie 8 & Selfie 9

Ok, so I missed a couple days in there. In my defense, my back was not great this weekend and also I got to spend some much needed time with Aaron. So, sorry not sorry.

I did, however, happen to take pictures both of those days with the intent of posting them, so, the way I see it, better late than never.

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Saturday night epsom salt vibes

 

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Sunday morning sleepy kitties and holiday card crafting

 

Today, so far, I have called in some refills for pain medication, called and ordered a disk of my images and reports from Doshi Imaging, and confirmed my Wednesday appointment with the spinal surgeon. I was referred originally to a doctor who works with geriatrics, so they scheduled me instead with a Dr. Paulino. Part of me wonders if Dr. Jones didn’t refer me to the geriatrics doctor because of the advanced state of my herniated disks, but maybe I’m just over thinking.

I should be hearing from Ardent Durable Medical Supply today to deliver and fit me with my back brace. That’ll make a cute selfie, no?

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Selfie 7

One week in to this little project and how different today looks than Selfie 1.

I mean, I look the same, but the circumstances have been turned on their ear.

I have a degenerative disk disease and spinal arthritis. What now?

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I need to find a way to make money. I need to find a job that won’t kill me, throw out my back. Problem is, I’ve worked several different types of jobs over the past few years and all of them have thrown my back out at one point or another. Sitting for too long hurts, standing is out of the question for more than 5 minutes at a time. All of the doctors and internet people say that one of the worst things you can do for problems like this is “rest too much.” But no one seems to have answers for those of us who are already to the point where we can’t get around. They also say “Don’t do anything that causes you pain.” Ok, so I’m supposed to exercise, but not do anything that causes pain. I mean, what if everything hurts? All the time? Then what do I do?

So, I’ve been kind of just doing what I’ve been doing. Lots of couch time with lots of pillows to bolster anything that feels weak. Get up often (carefully) and do something, anything. Make the bed (slowly,) do the dishes, feed the cats, light a candle, clean the cat box. Every move must be calculated and with intention. From going to the bathroom to getting a glass of water to sitting back down again.

I put together a little Amazon wish list full of things that would make life stuck at home slightly more comfortable, kind of as therapy, half hoping someone might want to help out and send a little sugar. Things are really tight. Aaron and I sometimes struggle to afford food, these days, with my being unable to work the last 6 months. There is no savings, there are no credit cards. There is only debt and cash. I’m so lucky to be on ACA Medicaid, otherwise I’d probably die. Literally. Actually die. Either from this disorder or from killing myself. If I didn’t have this help I have now I don’t know how I could possibly do anything. I would wind up a complete invalid.

Whoa. Ok, stop spiraling. I think it’s about time for my bath.

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

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 4

Another bed, couch, bath, couch, bed day.

I have disappeared into Hogwarts. Yesterday was disappointing and my depression has been pretty bad the past few days. I found out that many benefits are out of reach, and that disability can’t even be applied for until you have some form of a concrete diagnosis. My PCP, so far, wouldn’t give me anything or even look at my back. He had my twist, (attempt to) touch my toes, and lift my legs — but he didn’t even look at my spine, not even a scoliosis test. So, I don’t know. I should be getting my X rays read tomorrow, as long as there’s no mistakes between the lab and my doctor.

I read almost all of The Sorcerer’s Stone yesterday and started Chamber of Secrets this morning. I have been  crying through almost every chapter, as I am a sentimental fool and also fragile. I wish there were more books. I really cannot explain how good it feels to completely remove myself from this world and return to school for witchcraft and wizardry.

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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.