Tag Archives: chronic pain

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.

 

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Selfie 10

Today was good and bad. Got some things done, jumped through some bureaucratic hoops, was ignored by my Dr’s office from open to close. Called at 9:15am the first time, called again the afternoon and again 2 hours later. No help. Last person I spoke to was downright rude to me, despite the fact that I’m in pretty serious pain and out of meds with an appointment on Wednesday with a spinal specialist. You know, if I can make it there. So no big deal, I guess.

Ug.

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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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