By Julie Nielsen
I learned about horns in May of this year. Not a brass horn, but a horn-horn. I was sitting on the pavement between two cars brushing gravel out of a scrape on my knee. And I was crying. Now, I’m not a crier. I have to be exceptionally sad or happy to do that ever since my brother died. I think I cried so hard for so long that something broke and now it’s painful. But this time was different. I was mad.
I have ankylosing spondylitis (AS). I had just left my rheumatologist’s office and after a glance of an evaluation, and with a smile, she said, “Everything looks perfect.” I didn’t know what to say, since I am very un-perfect these days. I could feel the sting behind my eyes as I checked out and made my way to the car. The other thing she had said was, “You don’t have to worry about your walking ability in the future.” I had mentioned that I was working hard to keep walking. I already can’t walk far, can’t stand long, walk with a walking stick, and trip a lot, so having someone pat me on the head and say everything was perfect was like a punch. Crying in anger just complicates walking for someone with bad feet, a cranky spine, and poor balance. And that’s how I ended up sitting on the pavement between two cars brushing gravel out of a scrape on my knee.
I have seen what anger does to people, both physically and mentally. I may be one of the most upbeat people you’ll ever meet (to a fault), and anger is not one of my many weaknesses. So, sitting there on the pavement, I decided I couldn’t go down that path. This is where the horns come in. I made the decision that every time I was with a doctor who was capable but clueless about me—every time I was misunderstood—I would simply get through the appointment, picture them with pink horns fixed on their foreheads, smile, and say, “thank you.” I would get what I needed and keep on rolling.
I live in metropolitan Washington, D.C., and have access to really good doctors. My rheumatologist of over 30 years retired. As I tried hard to “land” with a new one, one of my best doctors gave me some advice about some rheumatologists: “They are scientists. Stop looking for understanding. Get your medicine there.” Mine was great for so many years and in so many ways. As someone with a chronic health issue, I see in our medical system the increasing busy-ness, the lack of staffing, and the crush of requirements. Doctors are rushing and there is less time to care. And as many people reading this magazine know, we spondy people are frequently misunderstood. But there is one really hairy disconnect for people like you and me: Most doctors focus on today. We, however, must focus on tomorrow. That’s the big tomorrow—like five, 10, or 20 years from now.
The rheumatologist who had just said I was “perfect?” Pink horn. Perhaps one of the country’s best rheumatologists at a clinic far from home said in the past, Maybe just acknowledge it’s time to stay home and be okay not leaving the house as much. At my age? Working? Horn. A slightly cocky spine doctor who told me after a glance at my X-rays that I didn’t have AS (which was pretty appalling, since I’d had it since I was 21, was on biologics, had been in a study at NIH, had multiple confirmations, and may just be one of the most scanned people in the country)? His pink horn had polka dots. The doctor who said my spine looked pretty good as my chin started shifting up, my head started shifting forward, and the lower part of my spine wouldn’t stay on the foam roller with the top part? That horn was big!
Note: Doctors with horns are good people and good doctors. These horns I assign them are just an indication of whether or not someone makes the effort to understand me. My best doctors without horns are an orthopedist I’ll call Dr. Andy, who helps me evaluate the big joint picture, and my long-time internist, who I’ll call Dr. Bruce. Oh, and Dr. Daniel is especially important, for reasons I’ll explain below.
Project Management
You’re probably wondering what pink horns have to do with project management. We are each complicated and getting us to the finish line isn’t easy. I define the finish line as staying mobile, upright, and in as little pain as possible for as long as possible. This takes work: resource management, scheduling, tracking, and proactivity. And that is project management. In essence, you start with the goal and work backward. It’s hard to find doctors that can do this, which makes us the project managers of us.
Resource Management:
Find and stick with good doctors. That’s easier for me because of where I live, but it’s getting easier for everyone, thanks to virtual visits. There are other resources, too. Physical therapy. Gyms. Steroid injections. Other types of pain management. I used to think that Google was terrible for researching medical issues because there was too much information and we aren’t as equipped as doctors to decipher it. But after resolving several problems myself, I decided I was wrong. Perhaps we should just use it carefully. Research new and innovative pain management options that are coming down the line. Know the advantages and disadvantages of different medications. I know side effects of my biologic that doctors don’t know. I know more about AS than some of my doctors. I could tell my spine was in an “S” before the X-rays said it.
Scheduling:
The older we get, the more things there are to do. Develop the skill of scheduling who, when, and what we need to do. AS has spawned other issues for me, so I have multiple doctors who do different things. And they don’t talk to each other. We have to be the go-betweens and communicate well.
It can be as simple as staying on top of doctors’ appointments. Or it can be as complicated as managing a detailed schedule of timing for steroid injections and other procedures. I mismanaged that part and paid a heavy price. I said when I wrote my last article for Spondylitis Plus that I was getting steroid injections in my left sacroiliac joint, but that wasn’t exactly true. I was getting them in other joints here and there. Sometimes it was more here than there, and I lost track. A hip. A shoulder. An ankle. Back to my left SI and then my right. I also didn’t share that, for five years, I had been getting groggy—too groggy—during the day, especially after meals. I’d go to doctors, but no cause emerged. When I hit four naps a day and started forgetting words, a hornless doctor insisted I head to the Mayo Clinic in Minnesota. Within a day of arriving at the Mayo campus I had a diagnosis. I had damaged my adrenal glands with too many steroid injections, and the problem had been playing cat and mouse with medical professionals. My blood pressure had been dropping, turning me into a chronic napper. My steroid days were done and that worried me. But soon I found another solution, which I’ll get to below.
Consider using software tools like Microsoft Outlook, To Do, Project, or Excel for your project plan. Or use paper. But do something to manage yourself. Don’t assume doctors are on it or that managing you is someone else’s responsibility.
Tracking:
If you are like me, it’s easy to forget things. Now I have a workbook that is accessible by phone or computer that has a tab for medications, allergies, and conditions. In Microsoft To Do, I have an agenda for each of my doctors. I might think of something to ask or want to tell them about something I read; but I may not be seeing them for six months. So, into the agenda the item goes.
Tracking relates to scheduling. Who do we see? How often do we see them? What do we do, and how often do we do it? What do I need to tell doctors? What questions do I have?
I decided recently that I’m going to keep a diagram of a body and use arrows and notes to show the problem areas to each doctor. This will prevent someone from looking only at one part and thinking I’m in great shape. Biologics caused an unexpected problem. They worked so well that they made me look way better than I actually am. The damage stopped where it was, frozen in time. But I have pain from what happened before the freeze. I eat well, work at my posture, and go to the gym. I have a sunny disposition even when it’s stormy inside. We need to make sure doctors know the big picture even as they treat their one, specific area.
Proactivity… and the magic of RFA:
Our goal needs to be balanced between feeling good today and maintaining movement tomorrow. That is one part reactive (what a doctor sees today) and one part proactive (what we do for tomorrow). Both of these are important. My pain is at its worst on gym days, but I know there’s a trade-off. So I do it.
Having Covid in the winter of 2021 taught me a valuable lesson. Probably because of my multiple immune issues, I was really sick. And after four weeks of misery, two ER visits, monoclonal antibodies, and multiple antibiotics for an infection, it occurred to me that my spine felt pretty good. At first, I wondered if the antibodies might have magically contributed to a decrease in pain. But I got my answer when I made my way back to the gym. Things had shifted. My arms and legs wouldn’t go back as far, and my head wouldn’t turn as much. I was stiff and the next day I was miserable from stretching my body. Clearly it had enjoyed not moving and it adapted quickly. We must keep moving. It took at least a month to get back to where I had been.
Steroid injections are one example of proactivity. They handled immediate pain and kept me moving so that I could get out, do things, and in particular, exercise. When I was worried about the increase in pain after I had to stop them, a doctor without a horn said, “See Dr. Daniel. He’ll keep you moving.”
And he was right. Dr. Daniel is an anesthesiologist who shifted to pain management and is now doing all sorts of interesting things to keep people moving—today and tomorrow. I see him for RFA, or radiofrequency ablation, in seven joints along my spine and in one hip. My description? It’s amazing! RFA kills the nerves that cause pain and it lasts for six to 18 months before the nerve endings grow back. I seem to be on the six-month plan. The good news is that it’s medicine-free and not very invasive. The bad news is that the pain of the procedure can be intense. The good news is they can knock you out for 10 minutes so you feel no pain. I choose that. They say it takes two weeks for the nerves to die, but I see improvement in one week. His team does other things, too, that are short of invasive surgery. Maybe the most important thing is that when I go—more or less monthly—he sees me. I am not misunderstood.
Another example of proactivity is joint clean-ups. When joints like my hips, shoulders, and an ankle were affected, arthroscopic clean-ups had me moving in no time. The ankle was a challenge but the others were easy.
Summary
We have a job to do. We must do what we can to manage our physical trajectories, knowing the ending will not be perfect. Meanwhile, I have accepted the fact that there are pink-horned doctors, and that is okay. My new rheumatologist had a pink horn. So the next time, I went in ready. I took control of the conversation and said, “Last time I left feeling like you saw someone totally different than I am, so I need to do a better job explaining what’s going on. I’d like to start with my feet and move up.” And that’s what I did. I took the blame (“I need to do a better job…”) and laid out what I wanted. She got it immediately and the entire tone of the conversation was different. It was a much better appointment.
We need to be our own project managers. We need to be future-focused, analytical, informed, tenacious, and strategic. Most importantly, we need to realize that we are in charge. Some years back, as the study I was in ended, I asked the chief doctor what he had learned. He thought for a minute and said, “I was surprised by how slowly AS moves.” Okay then, my friends, we just need to move faster than it does.
Julie Nielsen is the President and Chief Human Capital Advisor of Oyster Organizational Development, based in the Washington, D.C., area.
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