Dr. Strange and the Hamster Wheel

Over the past 21 months I have seen a lot of medical professionals: chiropractors, physiotherapists, massage therapist, my family doctor, medical students, an anesthesiologist, a neurosurgeon, a naturopathic doctor, and pain specialist doctors. Some of my experiences have been good, while others have been not so good, and although I am indeed frustrated with our medical system, I am also still thankful for it. Our health care system isn’t perfect, but I haven’t had to go into debt trying to fix what is wrong with my back. However, at a visit with my family doctor earlier this week, a spotlight was shone on my experiences that exposed glaring differences in care. Actually, I am certain I already knew this, but for some reason the truth just resonated more this week.

I have known my doctor for a long time, even before I was his patient. He knows my entire family, my parents. It isn’t uncommon for him to ask me how everyone is doing. So there is a level of familiarity here that extends beyond the typical doctor/patient relationship. I rarely get sick and, prior to this injury, I was never in frequent need of a doctor. Of course, with this injury I have been a regular visitor to my doctor’s office. And yet, every time my doctor walks into the exam room, he seems to have forgotten my injury or any of the details of treatment or medications that are most definitely written in my patient file that he is holding in his hands. Doctors see a lot of patients. I get that and certainly don’t expect an immediate and perfect recall of my previous visits. But wouldn’t it at least be prudent to take a quick glance at my file before walking in the door? It’s not like I’m coming in once a year; it’s more like once every 2 weeks to monthly.

When I switched chiropractors (same clinic, different practitioner) earlier this year, I walked into that first appointment never having met him and yet he knew a great deal about me. In fact, he had read through my entire “5 years worth” file the night before! I’m sure it was incredibly boring, but that showed me how invested he was in providing me with the best care.

My doctor’s first question to my this week was, “Why are you here today?” <insert facepalm here> The same reason I’m here every time, Pinky…to heal this disc and stop being in pain! Then he asked what I have tried in my quest to heal, more specifically, “How about traction?” <insert big sigh here> Yes, traction made the pain worse. My doctor mentions traction all the time. Every. Single. Time.

This is when the spotlight was turned on. My doctor is stuck on a train going nowhere on a track that has no branch lines. He is a general practitioner, obviously not a spine specialist. He sees my injury and has only a default setting for how to treat it. His default setting is time and traction with various medications thrown in to help. This is likely not his fault. He seems to enjoy focusing his skills on mental health, drug addiction, and obstetrics. My issue may not be outside of his scope as a GP, but he is not likely to be up on all the latest, greatest research on such an issue. Hence the constant traction question.

The difference between my doctor and my chiropractors (past and present) is glaring. While my doctor just repeats his mantra of time and traction, my chiropractors take the time to explore every variable and use every tool in their arsenal. When they run out of tools, they look for more. My chiropractors remind me of Marvel’s Dr. Strange using the Time Stone to look at every possible scenario and outcome, while my doctor is a horse on a merry-go-round performing the exact same movements over and over again. Of course, my chiropractors are not Dr. Strange. They don’t even have a Time Stone, but they are constantly learning and seeking more knowledge and skills in their pursuit to help their patients. I don’t know what requirements doctors have for continuing education, although I am sure they have some. It is unfortunate though that my first point of contact for medical care can be uninformed or out of date in many areas, which then impacts the quality of care I receive, while my access to more specialized physicians is restricted and limited. (For the record, my primary physiotherapist never used traction, which makes me think that traction probably isn’t the only way to fix a back!)

The medical system seems to be content to carry on like a hamster in a wheel. As my appointment wrapped up, my doctor said, “Come back in a month.” <insert angry face here> Sure thing! So you can get paid for my visit while doing absolutely nothing for me but wasting my time. I can envision my next appointment already. It will be extremely brief, because my doctor never seems to spend more than five minutes with me. He will ask why I am there. He will ask about traction again. Now that the neurosurgeon has again said no to surgery, my doctor will tell me that I didn’t want it anyway. Come back again soon!

There isn’t much left for me to try as far treatments. There’s also really not much that chiropractic care can do now to fix my problem, but my chiropractor is still actively involved in helping me reclaim my life and health. And yet, my chiropractor isn’t out to get rich off of my pain by telling me to come in frequently (unlike old school chiropractors who do say you need to come in 2x a week for X number of weeks in order to get results.) As a patient, I feel genuinely cared for by my chiropractors, my physiotherapist, and massage therapist. I cannot say the same about most of the medical doctors I have seen since the injury.

When my injury was still fresh and new, my doctor said it would take time to heal and so I was hopeful and patient. As I’m edging towards 22 months since the injury, both my hope and patience are wearing thin. Tissue paper thin. I am well past the year time frame given to me by my doctor. Relief from the pain and symptoms feels forever out of my reach. I feel like the medical system has failed me, because my situation isn’t “bad enough”. I have no more hope in the medical system fixing me or helping me, although I have little choice but to continue in the hamster wheel. The only bit of hope I have left is in the paramedical practitioners. While the paramedicals can’t magically fix my disc and symptoms, at least they are invested in helping me, keeping me active and healthy, and getting me back to doing the things I enjoy doing.

Honestly, I have known all this for a long time and have probably touched on some of these points in previous posts and rants. This week has just been heavy and depressing, and I want to both implode and explode. Crawling into a cave for a very long hibernation sounds like a good idea. I can’t stay positive and upbeat all the time, and doing so has been a struggle for the past couple of weeks. Maybe that’s why I feel such clarity in assessing the difference between my doctor and my chiropractor this week. The clarity doesn’t change anything. It doesn’t make me less frustrated with the medical system. It doesn’t change the pain in my legs or the status of my disc. But I think what the clarity does do is to gently remind me that I just have to do me. The medical system says that I can’t lift weights. I’m going to lift weights, even if that may look differently. The medical system says no surgery but have some drugs. I’m going to say no to drugs, as much as possible, and live life as best I can. I will keep trying, keep rising up…a thousand times, if necessary. Rising up is my theme for this year, and I’m embracing it. Wouldn’t it be nice though if I didn’t have to keep getting knocked down first?!

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The Depths of Despair

Well that wasn’t the response I was looking for!

I saw the neurosurgeon again today. The last time I saw him was a little more than a year ago, but the outcome of today’s appointment was exactly the same.

“The MRI looks basically normal. I don’t think surgery would be of any benefit to you.”

And that’s when my heart sank into the abyss. How could he say that my MRI looks normal? To my untrained eye, I can see that the disc is worse than it was a month after the injury. I can agree that my disc doesn’t look as bad as a worst case scenario might appear; however, as someone who has been in constant pain for 21 months, I really don’t care whether someone feels my MRI doesn’t look too bad. Someone having a worse looking MRI doesn’t negate the pain I am in every second of every day. It doesn’t change the fact that my disc isn’t getting better.

I barely held myself together as I waited for the elevator, rode it down three floors, and walked to my car in the parking lot. Once in my car, the waterworks started and could not be contained. I bawled. I sat there crying for endless minutes before I was able to drive myself home.

In so many ways this appointment felt like my last hope. I have done all the right things. I have tried virtually everything non-surgical. Not a single thing has given me even temporary relief. Good people, smart people have been telling me for a long time that I should have surgery. Unfortunately, the ones who make that decision disagree, and I am left wondering what else I can possibly do. The constant but tolerable pain is becoming less tolerable by the day. Half of each night lately has been spent awake and in the living room, because my legs hurt too much to sleep. Surgery was never my first, go to option, but I’ve exhausted all of my options. Nothing has helped. Nothing has made a significant dent in the pain. Being told once again that surgery wasn’t going to happen was crushing. Demoralizing. Where do I go from here? I’ve tried everything else. I’ve tried more medications than I can shake a stick at. And the best the neurosurgeon can say is to keep going to the pain clinic. As if I haven’t exhausted the resources and options available to me through the pain clinic!

I have received some heart-warming and positive messages today, and I appreciate them all. But I still feel gutted and crushed and on the verge of tears.

With the epidural injection on Tuesday morning, most of this week has been a write-off for any physical activity, but I went for a little run this afternoon. I had to for no other reason than my sanity; it was therapy. There were many moments when tears threatened to choke me up as I ran, but you know what? It’s terribly difficult to cry when you are gasping for air! I have been working on increasing my running endurance over the past couple of weeks, and today’s run was 5 minutes of running followed by 5 minutes of walking times four. It wasn’t terrible. It wasn’t comfortable. The numbness in my left calf and foot increased. The nerve pains were ever-present and uncomfortable. The back was mildly achy. My lungs burned, and I was audibly whimpering during the latter stages of each run period…but I kept going.

Maybe I just don’t know how to quit, or maybe I am just too stubborn or stupid. Perhaps I am simply stronger than I give myself credit for sometimes; that was certainly a common theme in some of the messages I received today. I don’t feel strong. Right now I feel incredibly fragile and weak. I ate an entire chocolate bar, and it wasn’t even dark chocolate. But it had hazelnuts! I’m about to start on a third glass of wine, because I can. The normal diet and eating habits can resume in the morning. And I can finally get back to the gym in the morning. And if I am not able to sleep tonight, I plan on watching Star Wars, because I can and it is awesome.

I will probably also shed a few more tears.

The Phone Call

The epidural nerve block wasn’t too bad, although the worst of it is always the after. The actual injection is mildly uncomfortable, a sensation of pressure as the liquid contents spread throughout the space and the awkwardness that comes from being curled up in a seated fetal position during the entire process. I have definitely had more painful treatments (hello, neural therapy!); however, I spent the rest of today feeling like an elephant had sat itself down on my lower back. Sitting is almost intolerable. Reclining is easiest but getting back to a standing position has been painful and slow. By the time I got home from the hospital, I was thankful to have the day to rest. Except for the appointment I booked with my family doctor for early this afternoon! By the time I got home from the hospital, I was wondering why I ever thought it would be a good idea to have an appointment later in the same day as the epidural.

Did I simply forget how awful I’d feel after the epidural? Maybe a little, but it also just made sense between my schedule, my doctor’s availability, and the fact that I already had the day off work for the epidural. In hindsight, this was not ideal, but I don’t think I will ever feel positive about a trip to see my doctor.

The purpose of the appointment with my doctor today was to talk about the results from last month’s MRI, and yes, this was the soonest that I could get in to see him. I already knew what the MRI report had to say, but I needed my doctor to send off another referral for the neurosurgeon. Here in Canada, you need a referral to see a specialist and, since it has been more than a year since I last saw the neurosurgeon, I needed a new referral. Sometimes the system sucks, and this is one of those times. It too several months for my doctor to even listen to my request to see a neurosurgeon, and then I had to wait several months for an appointment once the referral was sent. My case wasn’t bad enough for surgery according to the surgeon last year, but I don’t think I have many non-surgical options left available to me.

I had not even been home for an hour following my doctor’s appointment when my phone rang. It was the neurosurgeon’s office, calling to offer me an appointment on Thursday, as in two days from now! Of course, I accepted it immediately and worried about finding coverage for my work shift after.

I am still somewhat stunned by how quickly the surgeon’s office responded to this referral. My doctor electronically sent the referral while I was still in his exam room, and I had an appointment less than an hour later. I am relieved and nervous and hopeful. Before the events of today, I would have said that I was not thrilled about starting the waiting game again. I waited so long for so many aspects of care and treatment over the previous 21 months that I wasn’t keen on starting over from the beginning. But it wasn’t until after today’s events that I fully realized just how heavily the potential for waiting had been pressing upon me. It’s been 21 months of pain, and I want some relief. I do not want to wait anymore.

Of course, I still need the neurosurgeon to say that he will do the surgery. There are no guarantees that surgery will resolve all my problems, but at this point I have tried everything else and the disc isn’t any better. So much is still up in the air, but at least I’m a lot closer to something than I was this morning.

Best Laid Plans Gone Awry

It is nearing 8:30 this Monday morning, and I am feeling antsy. Typically I would have been to the gym and back home already by this time on a Monday, but I’m at home waiting on my week’s program still. My coach usually updates it Sunday nights, so I don’t know why there’s a delay this week. But I can’t go to the gym without it. Well, I could…it’s just better not to leave me to my own devices.

As I am someone who thrives on routine, being organized, and planning ahead, this not knowing where my program is or when I will receive it is causing me some angst. There have been the odd program delays in the past, and I have always managed to make some changes to my schedule to fit everything in. This week is more challenging, which only adds to my stress. I just do not have very much wiggle room this week.

I will leave for work around 11:00, because I have an errand to run first and then need to sit down with my boss before I actually start my closing shift. By the time I finish work tonight, there simply won’t be enough time to get to the gym and complete my workout before the gym closes. Any other week, I would put off my gym day until tomorrow; however, I will be at the hospital no later than 8:30 tomorrow morning to check in for my epidural injection. The rest of the day will be a write-off for physical exertion. I will be back to work Wednesday morning, but my activity level should still remain between 25-50% of my normal level. Thursday is another work day and my activity level can increase to about 75% of my normal level. By Friday I should be good for 100%. Saturday will be a long, torturous day for me as we will be driving a total of 5 hours to pick our daughter up and bring her home from her summer volunteering gig. Sunday morning I will be at work, and then we start a new week.

If I didn’t train at all this week, it wouldn’t be the end of the world and part of me would be glad to take a break this week; it’s just not what I was expecting based upon a previous conversation with my chiropractor and coach about this particular week. I was expecting this week’s training to be lighter and only two days, like today and then Friday. Knowing that Tuesday through Thursday and Saturday are write-offs…well, that throws my organized self into a wee tizzy. Because I wouldn’t be surprised to come home from work tonight to find my updated program, and then I’ll stress out wondering how best to make it fit into the extremely narrow window that is the rest of my week. Argh!

Sometimes it really sucks to be dependent upon someone else, but it is a good reminder that one cannot control everything. Sometimes you just need to roll with the punches or play the hand you’ve been dealt. Hmmm…bet I could think of a dozen cliches to fit this situation! In seriousness though, my world will not collapse for not getting to the gym this morning. I will be no worse off if I can only train one day this week or even not at all. The only part of me that is truly suffering in this waiting and mental schedule arranging is the part of me that needs to be in control, and it is okay to not be in control of every detail all of the time.

No Rest for the Weary

The nerve pain was really bad yesterday, last night, which meant that sleep was rather elusive, even more than usual. Still, I used my alarm clock to wake up at 7:00. Waking up was hard and slow, but I was dressed and out the door for a run by 7:30.

My husband was a little surprised that I was going for a run after the pain-filled, sleepless night. Maybe he thinks I’m crazy, possibly even slightly stupid, but it is just one of those things that I had to do.

Today’s run was my third since last week’s return to running. As such, I am re-acclimating myself, or rather I am finding my lungs and legs again. This morning was the first time I actually felt like my lungs knew what was going on, at least until the final two minutes of running, but I am thrilled with how decent the run felt overall. Of course, my feet were consumed by red-hot burning flames and the low back was mildly achy throughout. It’s a bit of a trade-off, I suppose.

Even if I had wanted to linger in bed this morning (which, of course, I did!), the week ahead is both busy and uncertain. With my epidural scheduled for Tuesday morning, I anticipate at least a couple of days of taking it easy, which means I needed to be strategic with run and gym days. So yes, I am crazy and stubborn (and possibly stupid), but it is better to sacrifice today to allow more recovery time post-procedure.

Chinese Water Torture

I think about Chinese water torture a lot. I am not a cruel person, nor do I have an interest in torturing anyone physically or in any other manner. The reason that Chinese water torture takes up space in my mind is due to the similarity between that form of torture and the way I feel every second of every day. I frequently use “tolerable but uncomfortable” to describe the pain I am in, but lately I have begun to question that response.

My pain is invisible. Someone who knows me well or sees me often might be able to recognize how I am feeling based upon the way I move, but I basically look normal. There is no cast to protect a broken bone. No visible wound or scar to account for the pain. I am adept at wearing masks most days and can laugh and smile through the sharpest of pain. I am frequently asked how I am feeling. It is usually just easier to tread lightly through the truth, which is where the tolerable but uncomfortable response comes into play. I have chosen to stop taking medication, because the side effects were always more effective than the pain-relief. Besides, the pain is not nearly as bad as it was at the beginning. It is tolerable. It is also uncomfortable. It is constant. There is never any relief.

And this is where my mind flows to water torture…the slow and steady drip, drip, drip of water on a person’s forehead that is oh so simple but unrelenting to the point of driving one insane. This is a familiar feeling that I can relate to. My pain might not be stronger than 10/10 anymore, but it tends to hold fairly steady between 3 and 6/10. An improvement? For sure! But it is still pain that never takes a holiday. It is the steady drip of water on my forehead that threatens my sanity. It is cruel and barely tolerable.

In the middle of the night, when I should be sleeping, I lie in my bed, listening to the burning pain coursing through my legs and feet, and I feel the drops of water plunking off my forehead. When I am at work, on my feet for hours and the burning in my buttocks becomes red-hot, I feel the drops of water bouncing off my forehead. On those rare occasions when I am sitting in a chair and my feet go numb and extra tingly, I feel the water on my forehead. Reclining here in my living room, with legs and feet on fire, tingling and numb, it is difficult to tell the difference between the water drops on my forehead and my tears. This pain might be tolerable but, as I mentioned to my chiropractor and coach last week, it isn’t so tolerable anymore.

The Logophile

She had always wanted words, she loved them; grew on them. Words gave her clarity, brought reason, shape.

Michael Ondaatje, The English Patient

My name is Angela, and I love words. This isn’t a new revelation by any means, yet earlier this week I found myself somewhat surprised by the depth of the power that words have with me.

I love writing. I do not claim any talent or skill in the art of writing, but I love it just the same. The writing and giving of greeting cards is, for me, as life-giving as receiving a blood transfusion. I could spend hours choosing just the right card for the right person and situation, because words matter to me, even the generic words on a card. I blog and journal for my own pleasure and the gift of revisiting memories. Sometimes I even do some creative writing, although not as often as I might like or as I once did. But I still have a folder full of some high school English creative writing assignments and other teenage scribblings.

My favourite wine is a Pinot Gris, but when I need to select a bottle of wine I almost always choose based upon the label. A quirky label or name will always catch my eye and draw me in. This is why I chose the Nagging Doubt red wine for my recent post-competition enjoyment. Unfortunately the wine itself wasn’t nearly as appealing as the name, but I just could not resist the perfectness of the words.

Because I am a lover of words, they are in a constant state of motion inside my head. There is seldom a situation for which I do not have a song lyric or movie quote waiting to burst forth from my mouth, even if I choose to keep it locked inside my head.

I knew all this about me; it’s never been a secret. I guess what hit me this week was how much more words mean to me than just those examples I listed above. I am also moved by the words I hear in song lyrics or movies or read in books. The words I speak into myself, or the words that are spoken to me.

You know the saying, “sticks and stones may break my bones, but words will never hurt me?” Yeah, that’s a lie. Words have hurt me more than any stick or stone ever has.

My skin is thicker than it used to be, and I know who I am well enough to recognize lies and maliciousness more often than not. On the flip side of negative and hurtful words are the positive and encouraging words, and those aren’t always any easier to accept. And isn’t that ironic! My inner self might cower under someone’s hateful words, but that same inner self will also squirm uncomfortably under words of praise. I squirm and feel awkward receiving positive words, but I soak them in like precious rain on parched ground.

And that’s the thing about words…you cannot unsay what has been said or heard or read. For good or bad your words have power, and someone like me grabs onto those words with both hands tightly clasped. Your words can stab and slash, leaving me bloody and hurt. I will heal, but there will be scars. Or your words can encourage and lift up and begin a positive chain reaction of growth that spreads outward to others.