Tag Archives: blogging

YouTube

I haven’t been writing a lot. At least not this week. I’ve been exploring different creative and painless ways of filling my days. I’ve gone back to YouTube and it’s been fun for the past few days. Who knows how long I will be able to keep it up, but I’ve made a couple new videos that I’m proud of. I’m also a Tweeter, of sorts, and am on that Instagram thing. CandiceChetta is always my screen name because, you know, uniformity. Anyway. Little update.

Here’s a video with a big update.

https://www.youtube.com/channel/UCkoapOWfNZj6dgc5RzCyMww

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Hunchback.

Having just been going to the PCP assigned to me at the time my insurance became active, I decided to follow the advice and recommendation of a friend and switch to the PCP at her office. She had had the similar experience of non or half diagnosis over the course of several years with little result, and said that this office was where she found doctors that would listen and take action. So I made the leap and I switched to an office much further from my apartment and made an appointment, X rays at the ready, to get my second opinion (since Professor Doctor hadn’t really given me… any opinion?)

I have no plans to abandon the original treatment plan. I do not want surgery, that would be shitty. But I wanted to make sure that I wasn’t going to hurt myself jumping straight into physical therapy without first making sure what exactly was wrong. I walked into the appointment with my new doctor still feeling completely confused about what my actual diagnosis was. The physical therapy referral from Professor Doctor, on the line labeled, “diagnosis”, had simply written “LBP” in large scrawl. I went in with the chief complaint of severe lower back pain and left with the diagnosis of… “lower back pain”? Great. Thanks for clearing that up.

A friend was kind enough to give me a ride to the new office since I’d never been to that part of town, and it is not what I would call an “easy” trip for a person in pain and in a back brace who needs a seat on the train. The office is underneath the Subway tracks, the walls are made of frosted windows, and there are chairs along those windows, facing the receptionists’ desk. This office, you can tell right away, is an osteopath’s office. An entire half of the office is dedicated to physical therapy suites, the other half, exam rooms.

I saw, let’s call her, Veronica, first. Veronica hung, rapt, but my every word. She seemed really concerned for my well being, and was receptive when I told her how much pain I was experiencing and how it manifested. She took pages of notes and showed me images of spines on her computer. She read the reports from my X rays and defined and illustrated for me what every single term meant. She told me what she thought my pain was and how she imagined it starting. She told me that I’d probably be given a stronger anti-inflammatory  (currently I an prescribed Naproxen), and that she was sending me to the physical medicine specialist and that after I saw that person I would probably be seeing a chiropractor. All in that same day.  I was later informed that Veronica could be slightly alarmist.

The physical medicine doctor, let’s call her Pam, asked me many of the same questions, looked over my  X ray reports with me, and then pulled up the images through the Lenox Hill Radiology website. She shuffled back and through the images a few times muttering “ok…. ok…” to herself every once in a while. She excused herself and came back with the director of the office, whom we’ll call Director Doctor.

Director Doctor sat and looked at the images, immediately muttering to himself, “kyphosis.” And going over the rest of the images. He explained to me, and showed me, what a “normal” spine looks like and how mine, instead, is shaped like a C. He let me know that whatever it was that was causing me the pain I’ve been experienced, has only been aggravated and intensified by the presence of kyphosis and the scoliosis I was previously diagnosed with, and had confirmed at this appointment.

He said my disc height wasn’t worrisome enough to warrant an MRI at this point, and seconded the opinion that careful and daily physical therapy would do me some serious good, if the X rays were any indication of the state of the bones. He confirmed that he believes I have spinal arthritis.

Still, there is nothing structurally worrisome about the bones themselves. There is no sign of deterioration or breakage, or mineralization. All of my pain, it is hypothesized, is soft tissue related (also nerve related, when in an exacerbation).

Things I noticed:

No one wants to tell me that I don’t need surgery.

For every doctor, there is a diagnosis. Sometimes they overlap. Sometimes they add new parts.

Things I was told:

“This is something you’ll feel your entire life.”

“This will be with you forever. There’s no fixing it.”

“This is probably what makes everything else worse.”

“You will have a pronounced curve and probably be bent over when you are 60 or 70 years old.”

I started to believe these doctors as the 4 hour appointment came to and end. It was the first time I had looked at the X rays with a doctor. It was the first time someone actually pointed to the areas of an image that helped to translate exactly what was happening. I was physically examined by 3 doctors, thoroughly and with care. I spoke up, I asked the same questions over and over again of each of the three doctors, and I didn’t stop until I felt like I had covered all I possibly could.

So, you know, all in all, it wasn’t great news. But it was good to know that I had covered my bases and found a place where the doctors listened to and answered my questions. So, onto physical therapy it is.

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 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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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

Pain.

This came into my life and I think it should be required reading for all human beings, and posted in every doctor’s office. LETTER TO PEOPLE WITHOUT CHRONIC PAIN.

Yesterday, while looking at my battered slippers on my socked feet, I started to cry. My mind had immediately jumped to my dad and all the physical pain he experienced as an adult. For weeks, sometimes months on end, he literally couldn’t move off of the couch or out of a hospital bed that was directly next to my parents regular bed. I thought about how for a long time, the only gifts we could think of to get him on holidays or his birthday were things that he could wear or use when he was laid up in this way. It was always new bedclothes, slippers, or  something like an extender-grabber for when he dropped things since he couldn’t bend or get off the couch to retrieve items for himself.

I was crying because I’ve been married 3 months to my wonderful husband, and out of work for roughly 4 months because of my back and this absolutely debilitating pain. Money is tight, stress is high, and I am literally in pain 100% of the time. I can’t keep my own house clean, I can’t make us dinner if it means I have to stand for over 5 or 10 minutes at a time. When I do get out of the house, it’s carefully planned and easily canceled if I’m in any sort of pain. There isn’t another option. I have to take cabs, the closest bus and subway is half a mile which is just too much right now. Making the decision to attempt a walk somewhere, or to hope there are comfortable seats available at a restaurant or bar, could mean that I wind up in a pain that I still don’t have words for, unable to dress myself and bawling in the fetal position for 6 to 9 hours with absolutely no relief.

This, as you can maybe imagine, causes major anxiety. Anxiety causes muscles to tense up, making pain worse. Anxiety and tight muscles make it hard to sleep, which makes anxiety worse, which makes pain worse. Tossing and turning has, more than once, been the cause of a day of hellish agony. Being unable to work, being stuck at home, causes depression to develop/reawaken and worsen with each passing day. And this doesn’t even go into the guilt, the weight of being truly shiftless when one desperately wants to be a part of productive society or get back into school. Forget the loneliness. People forget how to talk to you if they don’t just forget about you entirely. It’s too much for them to deal with. I don’t blame them.

My back went out for the first time 8 years ago, the day after President Obama was elected. We had thrown a party in our Lower Haight apartment on election night and, as you can imagine, there was a lot of standing around, being excited and running into the streets, and wild abundant celebration. The next day I couldn’t walk. I remember, really, barely making it to the polls the day before, I was already feeling pain in my lower back. I didn’t fall or have any kind of accident, it just started. It’s never been looked at by a doctor, because those first 4 years or so, the pain entirely disappeared with a days rest.

It came back with a vengeance when I was working at a jewelry store, but only really caused extreme discomfort rather than knocking me off my feet. (But it was still  horrible.) It was when I was tutoring in Manhattan that I woke up for the first time and couldn’t get out of bed to use the bathroom. I couldn’t move, I felt paralyzed. I couldn’t feel or move my legs, and my lower back was on fire. The pain is impossible to describe. It starts small and gets big, fast. Aaron had to help me to do anything, everything, and after a day or two I made it to an out-of-pocket doctor who gave me drugs and wrote me a note to get me out of work for a week. She told me I had a pinched nerve and to rest, take baths, and it should sort itself out. It was the first diagnosis I was ever given about my pain.

Since then, it’s been hit or miss. I managed to get a degree at a nearby enough university that I didn’t have to be on the train for more than 20 minutes, and never really had to wait more than 10. I had a job at a wonderful imports gallery, but it turned out to be a less than perfect fit. Worked at what has totally turned out to be my favorite job ever at a beautiful florist in Park Slope, that sadly turned impossible due to the physical nature of the job (which was my favorite fucking part of the whole thing, really.) I’d much rather be moving than sitting. Even at home (before all of this,) I find it hard to relax when I am on my own and would wind up cleaning the house from top to bottom on sometimes a twice a week (or more) rhythm.

My back has gone out 7 or 8 times in the last 5 – 6 weeks. I feel it all the time. A smile on my face or getting out of the house for one afternoon or evening does not mean I am feeling better. The ability to get down the stairs a little easier does not mean I am feeling better. It means I am making it work, and nothing more. I am in pain every moment I am awake. It is the first thing that occurs to me in the morning, and the last thing I worry about while I arrange my body to fall asleep comfortably as possible. I wake up all night, every time I turn over, because of the simple fact that it hurts. If I wind up on my back during sleep, I might not be able to get up in the morning.

In fact, I’ve taken a small break from finishing this particular post and in that short interim my back has gone out twice. The last time was after waiting in line to vote in the election. 10 hours of misery as the results rolled in. I still haven’t quite found the right words to turn my pain into literature. To be absolutely frank, it’s the scariest thing I think I’ve ever gone through. I don’t know what’s happening, and when in the throes I have some of the ugliest, most frightening thoughts I’ve ever experienced. It often feels like it would be easier to give it all up than go through another moment of torment. I’m not trying to be dramatic or ask for help at this moment, just honest as fuck with you.

I made an appointment, I finally have my insurance. I have an appointment on the 23rd of this month and I’m nervous as hell and very excited all at the same time. Excited might not be the right word. Maybe anxious, to get started. I have to keep reminding myself that this first step probably won’t tell me anything at all, but it will hopefully get things rolling. A referral for an X-ray would be most excellent. Renewing my prescriptions through my insurance would be incredible, paying out of pocket is not an option.