He's got my back.

Try as I may, try as I might, I can't hide my love for my spine orthopedist, Dr. Joseph O'Brien.  So, well... I just gave up trying....and this is why: 

I had my post-hospital follow-up with Dr. O'Brien today.  Just walking to my appointment, I could feel my anxiety levels rising.  This was going to be one of those appointments where I'd have to ask the hard questions and be ready for the even-harder answers.  For most of my injury I've been trying to stay in the moment, and not get too ahead of myself, but when I was incapacitated by pain at the bottom of my shower, I could only think (1) how the fuck am I going to get out of here and (2) is this what I have to look forward to the rest of my life? 

"How are you feeling? Any better?"  I'm moving pretty well as compared to how I was a few Sundays ago but still not great. But there's what my body feels, and then there's what's going on in my head and heart. 

I thanked him for intervening at the ER.  He understood why I was upset over how I was treated (by a know-it-all ER doc that wanted to shove pain killers at me).  That alone made me feel so much better -- that I wasn't being irrational for wanting the orthopedist resident on call to consult.  

Then he asked "So what's been going on?" That's when I was just overcome by the emotions of chronic injury and the tears started their slow drip.  I told him that I was trying to do well by avoiding the big ticket things (like giving up softball, and being cautiously fearful re boxing) but that what felled me was my everyday life...bathing myself.  This is not the life that I want to be living -- where I'm immobilized by fear as well as the actual pain. 

We looked at the MRIs that they took at the hospital as well as the x-ray they took today.  And well I have another few medical terms that I need to look up (for some background, read here:  "A Mile In Her Shoes"): 

1.  Magenta arrows:  known issue of bulging discs at L3-4, L4-5, L5-S1.  Diagnosed in 2007. 

2.  Cyan arrow:  known issue of annular tears, but annular tear at L4-5 showed changes from prior MRIs. 

3.  Yellow arrow:  new issue.  "modic change" (a pathological change in the vertebral body (see here and here for medical jargon)). 

4.  Also yellow arrow:  retrolisthesis per the radiology report ("a posterior displacement of one vertebral body with respect to the adjacent vertebrae to a degree less than a luxation (dislocation)").



Dr. O'Brien is sending me to a colleague to get a discogram to determine which disc is causing pain/numbness. It sounds like a super amount of fun where they inject a contrast dye into each disc and see what happens.  Thankfully this can be done while sedated -- cause I'm not the best with needles. 

I'm a bit overwhelmed by all of this because the path forward isn't clear. I'm really stressed by all that's going on in my life and just wish my body would get with the program.  That being said, I'm confident that Dr. O'Brien has my back. We're going to take this one step at a time and come up with a plan. 

In the meantime, I just want to thank everyone that has messaged me with words of support, or that send me things to lift my spirits.  Chronic pain and depression are common bedfellows because often people can't ever imagine a day when they're not in pain.  Imagine living that life. Imagine the cloud that hangs over any hopes for your future.  Yah.  This is why I watch the Monterrey Bay Aquarium's OtterCam -- they make me forget for a few seconds. 

My body, my rules.

You know the world has come full circle when your coworker sends you an email saying that you might be interested in a story/video and it ends up being a familiar face — the very lovely Meghan Tonjes — who I have been acquainted with for a while via Twitter.  Apparently she's been getting into some hot water with Tumblr and Instagram (though they have now backtracked) over showing progress photos of her weight loss, including a photo of her butt that she is very proud of.

I totally get where she's coming from.  I need only look at my blog analytics to know that the photos I post of my progress (or how proud I am) are seen as sexual, lascivious, or pornographic as others:

"fat females wearing swimming suits"

"hot fat girl"

"fat pinup girls"

"biggest fatty girl in tha world" 

"fetish fat girl"

"sexiest fat girl in the world"

  

For some reason, in this world, Fat Woman + Flesh = PORN 

or even worse:   Fat Woman + Flesh = Disgusting, unsightly, undignified, fodder for social commentary

**shakes my head**

To borrow a phrase from my coworker, Ms. Dianne:  "Don't get it twisted..." I take these photos for me.  I can look at those photos, at the person in them, and know every second lived in that body. No one else can claim that right or privilege.  Do you know how long it has taken to really own my body? To really and truly love it (even if I have moments of self-judgment and doubt)?  A LIFETIME.

I have lived my whole life (all *gasps* 32 years) in a world that has told me that because I have fat on my body, that there's no way I can be seen as beautiful, sexy, or worthy.  I'm "beautiful for a fat girl" or marginalized into a BBW-fetish category.  But "worthy" is the one that stings the most.  Being told that maybe the right guy will love me if I lose a few pounds.  Being the designated ugly, fat friend.  Being paid less just because I'm overweight. Having people assume that just because I'm overweight that I must hate myself.  Because I am fat I must hate myself for not being perfect. 

Everyone talks about being body positive.  Everyone talks about the self-love movement.  Everyone talks about Slut Shaming or Fat Shaming.  How about we just stop being assholes to ourselves and to each other?  I know it's hard wired in the human psyche to make comparisons and to want what other people have, but this constant wanting just leads to more suffering. The attitude of comparison separates us from each other. 

Let's stop saying "I want to be" or "If I were only" or "If I weren't so" and instead say "I am" and let that be enough.  Let's stop projecting our insecurities on other people and instead of assuming who someone is, let them tell and show us who they are.  That's body positive. That's self love. That's the revolution.

The Greats

My mom had back issues as well.  

As a kid, I remembered sitting in the waiting room of her chiropractor's office 2-3 times a week.  I remember the time we (finally) took her to get an MRI.  Three herniated discs in her neck and three herniated discs in her back, from what I remember (though, I think that back in the 90s, doctors didn't differentiate too much between bulging and herniated discs), and no recommendation for physical therapy or a long-term prognosis (but back then it was all fusion all the time). 

More than the clinical stuff, I remember mom being in PAIN.   I learned how to give back massages and make hot rum drinks because those would make mom feel better.  I learned not to nag mom on those days, but rather ask what I could do to help (cooking, cleaning, gardening).  

I could never fully appreciate mom's pain until I began to suffer the same pain.  

I never realized mom's grit until I had to summon forth the same resilience to get through the day each minute.

And I can now appreciate mom's grace when dealing with other people.

You see, that's the difference between sympathy (the feeling that you care about and are sorry about someone else's trouble, grief, misfortune, etc.: a sympathetic feeling) (how I felt for mom before I was injured) and empathy (the feeling that you understand and share another person's experiences and emotions: the ability to share someone else's feelings) (how I felt for mom after I was injured).

Compassion is really what gets you through chronic pain.  It's not necessarily that anyone wants to play a victim, it's just that (1) it's great when you don't have to explain your circumstances to every person in the effing world and (2) people stop saying stupid ass things to you.  I can understand if you don't understand what I'm going through because you can't sympathize or empathize, but the next step is not to project your need to feel useful onto me.  (Yes, I'm talking to you, random lady at the pharmacy who saw me the day I was discharged from the hospital and had the GALL to suggest that 16 years of back pain were caused by the flip flops that I was wearing at the current moment.) 

I titled this post "The Greats" because of the "beyond reproach" status some people are given when it comes to being injured.  Show me the person that would go up to Peyton Manning or Tiger Woods and suggest that maybe they just need a Tylenol, an ice pack, or different shoes.  Show me the doctor that would ask them if they injured themselves from "too much rough sex."  Show me the trainer that would call them weak because they couldn't do certain exercises without pain.  Cause these are things I've had to deal with.

All the same, I'm thankful for the visibility that Peyton and Tiger (we're all part of the Spine Surgery Club and therefore I get to call them by their first names) have given spine injuries. Tiger Woods wrote in his blog:   "My recovery from microdiscectomy surgery for a pinched nerve in my back is coming along, but it's a very slow process. I'm still sore. Not from the procedure itself but the incision. I just need to get back to my day-to-day activities, and that's it."  ...  "Some people heal up in three months, some people take four months, some people take longer. I just don't know."  ... "It's been amazing, just around here, how many people have had this procedure done and come up to me and said, 'Oh my God, it's changed my life. I haven't been able to do anything for so many years and all of a sudden I've been able to live life again.' I know exactly what they mean. I got to a point where I couldn't do anything. That part has been eye-opening."

"If we lose our hope, that's our real disaster.” ~ The Dalai Lama

The more I think about it, the more my recent hospital stay bothers me:  in the ER, all they wanted to do was give me pain medications and send me on my way.  But more on that later.

 

After triage, they sent me to the ER bays where my first point-of-contact was a nice nurse who took my vitals and got me the world's crappiest ice pack (but points to her for asking if there was anything she could do to alleviate the pain).  After that, it was a physician's assistant who told me that she wanted to do a steroid injection as well as some Percocet.  I told her that at my most recent appointment with my doctor, he said he didn't want me on steroids (such as the epidurals that I've had in the past for both my neck and my lower back) and that I would like an ortho consult.  She gives me Percocet (even after I told her that Percocet/Vicodin don't help me) and then brings in the ER attending doctor who sasses me for questioning the care(?) that I'm getting.  He's the doctor, and I must defer to his all-knowing wisdom.  Nothing makes me angrier than this arrogance.  So, I sassed him right back and asked him when he did his ortho residency.  I think that shamed him enough into flipping through the file that I brought with my most recent MRIs and radiology reports.  

The ER attending told me that taking an MRI or x-ray for a known condition (my back issues) wouldn't change their assessment or their care.  So long as my legs weren't numb (a spectrum from nerve compression to paralysis), their plan wasn't going to change -- they wanted to give me pain medications and send me home.  I could have herniated three discs and had disc bits floating around in my epidural space pressing against my spinal cord and they wouldn't have cared.  It didn't matter to them that I've had a history of managing the injury and the pain and that for me to even come into a hospital meant something had escalated.

He leaves and I take that time to call the orthopedic resident on-call (yay internets on phones!).  He comes down within 20 minutes (Dr. Dan is very cute! (but don't tell him that!)) and the first thing the resident tells me is that he texted his boss:  my doctor.  My doctor wants me to get an MRI and to admit me to address the pain.  Finally, someone was listening to me.  I apologize to the nurse and the PA for being such a persistent pain in the ass.

I get my MRI and then was taken to the orthopedic floor of the hospital.  The ortho nurse listened to me when I told her that I was a needphobe, and she gave me an anti-anxiety med along with the Dilaudid.  Sadly, the Dilaudid and I didn't get along, I vomited, and we learned no Dilaudid without an anti-nausea medicine.  And I think I also got more Percocet.  There were a few miscommunications along the way: no one told me that they were planning to keep me overnight until it was 8pm; a nurse told me that I could order dinner up until 9pm but food service stopped at 6:30 (yay! narcotics on an empty stomach!); notes not making it into my life and/or people saying they were going to set up appointments for me and that never happened.  I think I went through 20 of those crappy ice packs.  Maybe more.

Even though I had been given a morphine derivative, I was still awake for most of the night.  Sometime around 6 the next morning, Dr. Dan stops by before he's set to spend the day in the operating room with Dr. O'Brien -- the radiology report is back!  I didn't herniate the disc, but (based on my reading of my radiology reports) my discs and/or vertebrae have shifted.  Dr. Dan tells me that I'm not a surgical candidate at this time (the plan is for another disc replacement, not a multi-level fusion).  I don't want to be sliced and diced, but this is still hard news to take.  He's saying that it's all about pain management until I am a candidate (whenever that is).  Joy.

So the discharge nurse and I have a chat about pain management.  What works for me?  Well.... ice.  If you know me, you know I love my ice pack (which makes having a broken fridge that more awesome).  I try to lay off the pain meds (they do nothing for me in the prescribed doses and I don't want to increase the dosage and become a zombie), however I've found NSAIDs and muscle relaxers to help. Trying to find a comfortable way to sleep is one of the hardest parts of my back pain and NSAIDs/muscle relaxers make that possible.  Sleep is where most of the healing/repair takes place.

So what do I get sent home with?  

-- 2 prescriptions to help counteract the effects of narcotics on my gastrointestinal tract

-- 7 Meloxicam (NSAID) pills (1/day)

-- 10 Flexeril (muscle relaxer) (2/day)

-- 40 Percocet (narcotic pain pill) (1 every 6 hours)

"The good physician treats the disease; the great physician treats the patient who has the disease."

William Osler

It saddens me that "pain management" is this catch phrase that translates into numbing someone to the pain they're feeling instead of helping them alleviate it (as well as translating into a very lucrative medical field).  A patch job versus repair.  I wish there was a way to condense the last 16 years into a way of showing doctors that I'm fighting for myself with all I've got, but that for right now I need their help and compassion.  So much of managing chronic pain is just finding treatment from a doctor who doesn't assume that you're weak.  So much of managing chronic pain is reminding the patient that they are being heard and the doctor is on the patient's side. 

(And the thing that I'm afraid to say, because I don't know how it'll be received:)  So much of managing chronic pain is reinforcing the narrative of hope -- that one day the patient will have less or no pain.  Ask anyone who has had chronic pain before, and that very statement can send them to a very dark place.  Chronic pain without hope can send people into alcoholism, addiction to pain killers, and even to suicide. 

I'm not there.  I've not lost hope -- but as I get older and feel less like I own my on body or my own future, I wonder about these things.  How much hope should I have about falling in love when I'm worried about just regular falling?  How much hope should I have about being a mom when I'm not allowed to carry anything over 5 lbs?  How much hope should I have about anything when it takes all my focus and determination to just put on underwear?  I'm not trying to be hyperbolic or melodramatic.  The people who have had chronic illnesses/diseases or who have a disability that affects them every day of their life know where I'm coming from. 

Life's not always rose colored glasses.

Sometimes the asshole doctor in the ER gets his wishes and you get sent home feeling as bad as you did when you came in.

Pop goes the...

I should have known this would happen: I  was in the shower this morning shaving because I wanted to wear a dress to the Elbow concert at the 9:30 club tonight. (Last time I injured myself? Getting ready for Alton Brown).

I am bent over to shave my right calf and  I feel a pop and I am in excruciating pain. More pain than  I have felt in quite a while.
I sank down onto my knees and tried to summon up the grit to stand, rinse my hair, put a towel on, and get dressed. That took a half hour of using every curse word that I have.

I knew immediately:  I needed to go to the hospital.  I am stubborn. I should have called a friend (see Emily...I admit that I was wrong) instead of going in a cab.  I get to GW and go through triage and am brought back quickly.

But I wasn't impressed with the ER protocol. Give me drugs (that i already have at home) and send me on my way. T he attending ER doc was all like "trust me, this is what I do" to which I replied "So where did you do your ortho residency?"

I email my surgeon. I call his on-call Ortho resident. On-call just happens to work with my surgeon. I was admitted soon after. We did a contrast dye MRI to see what is going on. They gave me better meds (which explains the typos and why it has taken a few hours to write this [but I have now gone back and fixed some of the typos]) and have been coming by to check on me. The nurses here on 4north understand pain and that with some ortho injuries, time is of the essence. 

Sadly, I missed Elbow. But my neighbor John checked in on Jack Cat and brought me Ted and Gatorade. I gave him the tickets and he had an amazing time. So not all was lost.

My Nihal even swung over to check-in on me right before visiting hours ended.

I will update once I get the radiology re report tomorrow. (Hopefully my surgeon will see me before I get discharged.)

So what do I need from you, my friends? Understanding more than anything.  I want you to see me fighting for myself. I don't want you to think that I am giving in to my injuries.

Even if this turns out that I didn't herniate a disc, I made the right decision to come.  Pain is an important signal to the brain that something isn't as it should be.

[UPDATE:  resident came in the morning and he said it wasn't a herniation. Occupational therapist said it was a mild herniation at L3-L4. I wish they would just give me a copy of the radiology report. But i will be discharged sometime today.]