Tag Archives: depression

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.

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Physical Therapy.

I had an appointment this past week with a spinal surgeon. When I first got to the hospital, I tried to locate the building with much difficulty. I was told “your appointment is at 450 Clarkson.” 450 Clarkson, they had neglected to mention, was entirely obscured and blocked by a construction shed. I called the office from the street. “Do you see the Emergency Room? 470 Clarkson? You have to go in that entrance and take the elevator to the basement.” OK. So I did that.

Pretty standard initial experience. Filled out my initial appointment paperwork, handed over my X Rays and referral. Definitely felt like I was in a submarine, though, which was weird. It’s an old building, there is no central air in the basement. The lights look like portholes in the ceiling. The walls have metal seams and riveting. The rooms don’t have computers or windows. It’s probably hell in the summer.

The first doctor who came into my exam room told me he worked with the Dr. I was scheduled with, and that he would personally be reporting to him everything he learned and then both doctors would come into the room. (It’s a teaching hospital.) The first doctor was nice, personable, listened to me. Looked me in the eye. Gave me a physical exam. Spent maybe 10 minutes or so with me before he left to consult with the second doc.

Let’s call them Doc and Professor Doc.

Doc comes back in and starts to tell me that there doesn’t appear to be anything surgical at this moment when he is abruptly interrupted by Professor Doc who comes in to the room with his hand extended and his eyes on the wall and introduces himself to me. He’s audibly chewing gum. His black hair is slicked back, his stomach protrudes and he towers over me at at least 6′ 5″.

Doc said, “That’s the back brace they gave her,” indicating toward the object that Professor Doctor had picked up out of the chair, flopping it over in his hand a couple of times, scrutinizing it. “Ok, fine,” Professor Doctor said, before replacing it.

Professor Doc talks like he’s running an auction. He asks me many of the same questions that Doc has already asked me, in rapid fire succession. Never once making real eye contact. Smacking bright green gum the entire time. He makes me bend over, stand on my toes, walk on my heels. He makes me kick against his arms, pull against the pressure of his hands, and forces my straightened leg as far as it will go. “Good, she’s strong,” he tells Doc. I feel like a horse going for sale. Doc keeps reluctant eye contact when he can and tries to interject intermittently but is never really allowed to finish a sentence with Professor Doc in the room. Professor Doc, while he talks, says the phrase, “I’m a surgeon,” no less than three times, as if this statement is complete and meaningful in a way I should automatically comprehend.

Professor Doc says, “I don’t see anything surgical.”

He says, “This is a good thing.”

He says, “It looks like you just have a little back pain,” kind of squinting his eyes, curling his lip, and shrugging his shoulders. I felt like I was boring him.

I couldn’t find any words. I felt completely helpless. Did he miss the part where I can’t dress myself when my back is out? Did he miss the part where I can’t walk, bathe, eat, cough, sneeze, shower or fuck without worrying that my back is going to catch fire and make me contemplate the end? How about the fact that it takes me almost exactly 4 times longer to walk anywhere than it did only 8 or 9 months ago? And always with discomfort? Did he miss the part where I’m depressed, lonely and broke because I can’t work and I almost never leave my house?

Did he miss the part where two other doctors gave me an entirely different impression from reading those same X Rays and reports? Those doctors were the ones who told me to come here, I didn’t decide that myself. Why was he treating me like I was wasting his time and it was my fault? Every doctor I’ve seen from the Emergency Room to Urgent Care to the private DO told me with no uncertainty that I was “weak.” How could Professor Doctor take 3 minutes and decide that I’m “strong”? What do these words mean to these damn doctors at all, anyway?

“It looks like you have a little back pain.” A LITTLE BACK PAIN? I wanted to scream. I didn’t want to cry, I wasn’t going to do that, and I didn’t.

“Physical therapy.”

Professor Doctor, literally and figuratively washing his hands, reminded me that is was a “good thing” that he saw “nothing” before he left the room talking to Doc while not looking at him. Doc looked at me and said he’d be back with those referrals. 6-8 weeks of physical therapy, 3 times a week. After that, follow up with sports specialist for pain management. I sat and put my shoes back on, my scarf, adjusted my hat and held in my tears, waiting for Doc to come back.

“I don’t feel like he heard me at all,” I said to Doc when he came back into the room. I was about to burst. “This pain has ruined my life, and he said it was ‘just a little back pain'”

Doc desperately and kindly tried to reassure me that Professor Doctor has a certain style but is excellent at what he does. I rolled me eyes at him, not rudely, but exhaustedly and frustratedly, more than once with a heavy sigh. I just couldn’t believe that Professor Doctor heard me. Doc’s eyebrows were raised as he talked and I could tell he felt guilty that I had this experience, but I could tell he wanted me to believe that this is all the correct course of action and not to spend too much time worrying about it.

It’s not that I want surgery, I just want to know what’s happening with my spine and joints. I wanted them to look deeper and make sure I can safely exercise. Didn’t they understand I hadn’t felt safe doing anything for months, now? How can they possibly know that without  so much as listening to me or granting me an MRI? This has been years of crippling pain and I was being told I wasn’t stretching properly? I just wanted to hear something and wasn’t told anything. I was given physical therapy, but I wasn’t told why or what that was supposed to do or how they knew that absolutely nothing else was wrong. This felt like the first medical treatment in an episode of House. You know, the one that almost always makes things exponentially worse for the patient? Yeah, it felt like that.

No one mentioned what I should do about being able to work, or even a diagnosis beyond “pain.” Two doctors found evidence of spinal arthritis and herniated disks. Two doctors were concerned about degenerative disk disease. It took Professor Doctor around 20 minutes to decide that I have the spinal equivalent to my period and that it would pass easily. A little back pain. Crestfallen, I stumbled into the waiting room to schedule my appointments.

They couldn’t even get me in until January for an evaluation with the physical therapist, and don’t schedule the sessions until after that happens, which probably means another 2-3 week delay in treatment. The woman at the desk also, somewhat foolishly, pre-booked my 6-8 week follow up with the pain management specialist, despite these delays in my physical therapy. I pointed this out to her, she told me not to worry about it. She gave me a supplemental list of PTs to reach out to if I wanted to see if anyone else could get me in sooner, but couldn’t tell me anything about Medicaid providers (why would they?), which of course are few and far between for things of this nature.

I have felt, for lack of a better word, paralyzed through this experience. I’m not sure if I should go back to my PCP and request someone else, or maybe try to get in again with the specialist and rip his face off. I don’t know if I should just believe these doctors and trust that it’s “just a little back pain” and try this physical therapy, give it a real shot, and hope, somehow, that bending, twisting and stretching is going to magically heal my spine and trick it into supporting me again. I mean, I can’t stand in one place for more than 5 minutes or I start to feel excruciating, debilitating, earth-shaking pain, but who cares. I couldn’t do the stretches the previous DO and MDs had prescribed me because they required so much standing and bending and every time resulted in more pain than they alleviated, even after weeks of attempting to stick to their prescribed schedule.

And what about just the reality of making these appointments work, in the real world? Money is tight, and MTA fares went up. $2.75, each way. 2 times a day, 3 times (or more with other appointments,) a week. 6 x $2.75 = $16.50 x 4 weeks = $66 a month. I don’t even have proper snow boots, at the moment, with which to get to these future appointments in this dangerous weather and I have to find 66 dollars a month to get to appointments about which I am not entirely confident. Considering canceling my dental insurance, despite my myriad issues in that department, to make up at least some of the difference.

Ok, hot tears are starting to burn in my eyes and there isn’t much more to say anyway, so I’m going to end this here, with a perfect Frida Kahlo quote that was brought to my attention by a really swell human being (in no way is my body as broken as Frida’s was through her life, I can’t even imagine her pain, but this thought and her determination is powerful) :

“I must fight with all of my strength so that the little positive things that my health allows me to do might be pointed toward helping the revolution. The only real reason for living.” Frida Kahlo.

 

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 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 

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.