Tag Archives: selfie

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.

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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

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 

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