Self Advocacy :: You are your own superhero

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It seems that somewhere along the way I picked up the idea that doctors are omniscient (all-knowing) and omnipotent (all-powerful.) If you had asked me 25 years ago whether I believed that or not, I would’ve said, “Of course not!” But if I could hit a rewind button and let you watch my 30-year quest to find help for my chronic pain, you would probably come away, saying, “Yep. She totally believed that.”

 

When I was a kid we went to Dr. Richardson’s office on West 15th street. Dr. Richardson was our general practitioner, but she also delivered my little brother when he was born and attended to me when at 12 years old I slammed my thumb in a heavy car door, nearly severing the tip of it. I’m dating myself here, but in the 1970’s some doctors still felt like a part of the family. They were there for life, death and everything in between. You only went to a specialist if you were really sick in some way. Like Marcus Welby, M. D. (look it up, whippersnappers) Dr. Richardson always seemed to have the answers for us, and when she didn’t, she devoted herself to finding them on our behalf. We had confidence that she could fix us, or if she couldn’t, she would find someone who could. Somehow we just knew that we wouldn’t fall off her radar. My mother called her by her first name, “June.”

 

There are still doctors who will attend to most of your non-life threatening medical needs, but for the most part, those days are gone. If you have a condition that’s beyond what your family doctor treats, they’ll refer you to a specialist. And I’m grateful for that. But what if you feel like the specialist doesn’t have his head in your game, or maybe she’s just abrasive and condescending? What happens when you feel that their diagnoses and treatment plans aren’t really getting you anywhere? Well, if you have a latent belief that doctors are omniscient and omnipotent, then you shrug your shoulders and believe them when they say things like: it’s in your head. You’ll never get better. Just learn to live with it. There’s nothing more that can be done. Or, you admit that all doctors don’t know everything, and you go find another one.

 

Of course we all need doctors, because that’s how the system works. But we do not have to accept every single thing they say as gospel truth. It’s kind of embarrassing to admit, but I spent years placing blind trust in doctors because I desperately wanted them to take care of me and make it all better. I wanted a June Richardson. And even though certain doctors gave me ample reason to believe that they were the Anti-June, I followed them like a puppy anyway. I wanted them to save me from this horrendous pain that was ruining my life.

 

Magical thinking, much?

 

I am NOT saying that no doctor is worth listening to. There are good doctors and there are terrible doctors. Even some of the good ones won’t know how to treat your illness, and some of the terrible ones have good hearts.

 

Over the last five years I cared for both of my parents as they got sick and died. Those experiences taught me a lot of things, but this is one of the biggest lessons I learned:

 

You have to be your own superhero.

 

If you surrender yourself to the natural flow of the system, blindly trusting whichever doctor you get bounced to next, there’s a very good chance you’ll never get what you truly need. And worse case scenario, you could get a lot worse. You know the T. V. show House, where Hugh Laurie plays a drug-addicted doctor who always solves the most bizarre and misdiagnosed patients? Yeah. Nobody’s going to do that for you. It’s fiction. You must at least try to do it for yourself. And here’s how you start:

 

Trust your gut.

 

Don’t discount what you think and feel just because a doctor is telling you otherwise. Weigh it. Research it. Discuss it with others. If you’re a spiritual person, pray about it. And if you feel uneasy about doing something, don’t do it. Keep seeking. You are your own medical director, patient advocate and clinical researcher. Yes, I know this is hard and time consuming and particularly difficult for those who are in strict HMO’s or don’t even have insurance at all. It’s hard for the single parents or the ones who are disabled (or nearly so.) It’s hard for us all. But we cannot afford to place our health completely in the hands of whatever doctor we’re in front of. Put yourself at the very top of the “yay or nay” list. Your vote not only counts, it counts the most.

 

Of course I’ll probably get accused of saying that we have the ability to diagnose and treat ourselves. And that’s not what I’m saying at all. I don’t advocate patchwork, Internet self diagnosis. You can’t go it completely alone. But you can keep seeking until you find practitioners that will listen to you, work with you, and offer you solutions that seem sane and reasonable to you.

 

In my 30-year odyssey of trying to find answers for my chronic pain, I think I can say that I have rarely, if ever, been 100% sure of anything. Certainty is a myth. In fact, I would say that I have become wary of absolute, categorical certainty, at least when it comes to the diagnosis and treatment of SIJD. It’s just not that simple. The only things I can do are listen to the information that seems reasonable to me, and then make the best intellectual and intuitional decision I can make in any given situation.

 

When I started looking for answers again last year I had to put blinders on and choose not to listen to everyone’s opinions. For once, I decided to listen to my own voice more than the voices of others. In the past I was really swayed by people who categorically told me that I was wrong, and that they had my answer. (Another thing I learned: If you let yourself be governed by fear, you will be more susceptible to the strong opinions of others.)

 

I eventually went to a local orthopedist who recommended a minimally invasive SI joint fusion. I liked him and I suspected he was right, but something told me not to book the surgery, that I needed to keep investigating. I would rather have just done it to get it over with, but I listened to that inkling and kept researching. When I found a doctor in Chicago that I thought could possibly offer additional diagnostic tools, I made an appointment and booked a flight. I questioned that decision every day before I actually went. I wondered if I was taking myself on a wild goose chase, if it was really necessary, if I had accurately assessed this doctor’s abilities, if I was wasting a ton of time and money. But on good days when I’d check in with myself, I still felt that spidey-sense that I should go. That trip ended up giving me the information that I needed to move forward with surgery. Even though I really liked that doctor, I still wasn’t feeling that iFuse was the surgery for me, though I didn’t completely rule it out. I just went to the next possibility on my list to see how that played out. (No, I’m not saying iFuse is bad or not a good option for anyone. I was listening to what my heart was telling me.)

 

When I made an appointment to see a doctor in Montana I wondered all the same things—wild goose chase, doctor’s abilities, wasting time and money, yada, yada. But again, I trusted that gut instinct that led me to make the appointment, and told all the chatter in my head to shut the hell up. I met with him. I trusted him. I felt comfortable with his fusion method (or as comfortable as anyone can be when they’re facing surgery.) I scheduled the surgery because all the hard work I had done to research it, all I had availed myself to in order to diagnose it, and the resounding failure of the many, many non-surgical options I had already tried had led me there.

 

And then I questioned the surgery decision until the moment they put me under. It wasn’t a strong warning in my gut that I was doing the wrong thing. It was a mild nagging, what-if-I’m-wrong feeling. (It takes time to be able to tell the difference between the two.) I decided to bet on myself rather than the opinions of others, and resolved myself to live with the outcome — whatever it may be.

 

Today I am four weeks post-op. Did I make the right decision? Yes. Am I 100% sure of that? No. But I am pretty sure. I still have a very long way to go in recovery. I am not on a horse, riding into the sunset. But here’s to progress: today I drove to the salon, got my hair cut, went shopping at Ross, Marshall’s and Ulta, drove home, and was tired, but not in horrendous pain. I made dinner. Before surgery all of that would’ve put my pain level anywhere between a 7-9. Today it was a 3, maybe a 4. Will it be that way tomorrow, or next week, or next year? I don’t know, but I hope so. It’s not a passive hope; it’s an active hope. Surgery isn’t the end. It’s another beginning. My body has a new normal to find, and that’s my new mission.

 

Speaking of which, the self-advocacy continues. Last week I decided to try and find a physical therapist I was comfortable with, rather than just taking a referral and hoping for the best. After reading about various PT offices for about an hour I found five physical therapy places relatively nearby that I felt positive about. There was one in particular that I liked for reasons that I won’t go in to now. Rather than picking one out of a hat, I drafted an email and sent it to all five (I’ve pasted it at the end of this post if you’re interested in reading it.)

 

Out of five emails, I got only two responses. One was super clinical and iffy about treating me, and the other was from the place I was most drawn to. It was a lovely reply. She offered to put me in touch with a therapist who later called me, and I immediately connected with her. So humble! Twenty years of experience. She said several things that led me to think, Yes! She gets it! This is someone I could work with and learn from. She’s had two other SI fusion patients, though I’m not sure they were minimally invasive. Near the end of our conversation, she said, “Rest assured there will be no judgment from me. I am excited that this has helped you and am ready for you and I to explore your recovery together.”

 

Is she the right one for me? I don’t know for sure. But I’ve proactively sought out someone I feel has the training, approach, and bedside manner that I am comfortable with. And if she’s not? I’ll keep looking. And wherever you are in your journey, you can too.

 

 

Trust yourself.

Keep researching and seeking.

Don’t be passive.

Don’t settle.

Don’t give up.

You are your own superhero.

 

 

(Here’s the generic letter I sent to the physical therapists.)

Hello. I’m not quite there yet, but in the next four weeks or so I will be looking to start some manual physical therapy. I had a minimally invasive sacroiliac joint fusion on January 28, and opted to go out of state to have it done (the exact procedure I preferred was not available anywhere in Texas.) It ended up being a really good decision for me, and I am doing great. I know these fusions are rare, though several doctors in Austin are doing a different type than the one I had. It may be a tall order, but I would like to find a manual therapist who has worked with SI joint fusions, and understands the unique challenges to that particular rehabilitation process. Do any of your therapists perhaps have this experience?

 

Quite often, when I tell clinicians that I’ve had an SI joint fusion it elicits something of a shock or pity response, as though I’ve been led down the wrong path. Nothing could be further from the truth. I have found PT to be very SI joint dysfunction-friendly (it was a physical therapist that first diagnosed me 30 years ago) but in my experience it hasn’t been very SI fusion friendly. This may be an unfair assumption on my part—I’m just basing that on my own limited experience.

 

I guess all I’m saying is that I don’t want to come in to a therapy environment where the therapist approaches my rehab without any flexibility in their thinking about this surgery. If I can’t find one who’s ever worked with an SI fusion patient, I prefer someone who’s curious about it and open to what we might learn together in the process.

 

If any of your therapists is so inclined, I’d love to talk.

 

Thank you.

 

 

 

Photo by JD Hancock, Licensed under Flickr Creative Commons. No changes made.