I love my new neurologist! Prior to my appointment last week, I had heard conflicting reviews from my network of friends living with dystonia. “Why did you want to meet with me?” he asked after we introduced ourselves, not as an accusation but more as a point of interest. “I am open to trying anything! If you can offer some new ways for me to decrease my pain, then I want you on my team.”
Now, you’d think after five years of living with a neurological movement disorder that I’d have plenty of experience with neurologists. Unfortunately, that hasn’t been the case. In the beginning, I had one neurologist at the University of Minnesota who confirmed my diagnosis of Cervical Dystonia, and that same person signed my forms to assure my employer I should remain on Long-Term Disability. Since he didn’t ask me questions, teach me anything about my disorder, or offer me suggestions on how to treat it, I automatically assumed a neurologist wouldn’t be a valuable addition to my care team. Over the past few months though, the more I thought about it, the less that made sense. If I have a NEUROLOGICAL disorder, shouldn’t I be seeing a NEUROLOGIST?
So in April, I saw my physical rehabilitation doctor for my first round of Xeomin (the pure form of Botox) injections. As the song, “It’s Now or Never” played in my head, I asked him if it would be helpful for me to see a neurologist. “Of course! Maybe he can give you some pain management strategies I haven’t thought of.” So simple, yet how could it take this long to discover a neurologist should be an active member of my support system?
I don’t like to play the blame game. However, when you are in the midst of living with a chronic illness, it’s very difficult to know what questions to ask. I am a great advocate for myself, but let’s be honest. Often times, we don’t know what we don’t know. Even when I did ask questions, often times I wasn’t given the answers until years later.
When I was first diagnosed in 2010, I asked everyone on my care team if they knew of any dystonia support groups. None of them did. As I reflect on this, it surprises me because my new network of people who live with dystonia assure me I am under the supervision of the rock stars in this field of medicine.
And then last year when I inquired again, two of the same people referred me to the Minnesota Dystonia Support Group. What is so frustrating is that their replies were followed by “They’ve been in existence for years.” Well, if that’s the case, why wasn’t I given that information when I first made the inquiry? During those first few months of experiencing chronic pain and involuntary body movements, I could have really used some moral support from people who understood what I was going through. After one meeting with my new neurologist, I finally feel like I have it.
“For the past few weeks, I’ve been reading your story, over and over again. What I do know are the words used by your doctors to describe your experiences. What I don’t know is how you would describe them yourself. I want to know your story, told in your own words.”
Every time I responded to a question, he clapped his hands together and pointed at me like I’d won the million dollar prize. There was no wrong answer, and he was clearly interested. Before this appointment, I frequently wondered, “Is it just me? Am I really experiencing this, or is it all in my head?” But the more we talked, the more I was assured that each new problem was directly related to my dystonia. That was a huge relief!
Then he asked me a question that has lingered with me, “Do you feel like you’ve had a chance to catch your breath yet?”
My initial response was very literal. “To be honest, I’ve learned a lot about breathing and have taken many meditation courses to focus on my breath,” I smiled. “But I’m sure you’re using the term metaphorically too.”
“Yes and no. While there is some metaphor involved, I really want you to think about it literally. You were diagnosed five years ago. You’ve been experiencing huge changes every day. Have you caught your breath yet?” I couldn’t answer.
It takes me back to that dreaded day each school year when we had to run a mile around the track. I have never been a runner, and just thinking about the task created butterflies in my stomach. It was excruciating, exhausting, and embarrassing. I was always the one who had to slow down and walk more than half of the mile. Always the one panting because I was so out of breath. Always the one the rest of the class had to wait for as they stood around and watched. I can still feel how parched my throat was when I finally staggered to the teacher holding the stop watch. I can still see myself bent over at the waist as if I was going to throw up. I can still remember how badly I needed to collapse on the ground, but I had been forced to humiliate myself already in front of my classmates. I didn’t need to add any more fuel to the fire of gossip.
There are so many parallels that can be drawn to this, and perhaps I’ll tackle them another time. All I know is that if he asked me that question again today, my answer would be “No, I haven’t caught my breath.”
I always feel like I’m in problem-solving mode when it comes to my health, both emotionally and physically. My description above regarding the search for a support group is a good example. Then there are constant phone calls to my physicians, the referral department at Fairview, their billing office, my health insurance company, and any treatment location residing outside of the Fairview system. This alone consumes hours of my time for just one appointment. To be honest, I shouldn’t HAVE to do this. That’s what all these people are getting paid to do, but I’ve found they let me fall through the cracks if I don’t. Guess who ends up paying the price when they screw up? In more ways than one…
Even the anxiety and wonder caused by this very appointment took my breath away, especially all the forms that needed to be filled out before I arrived. The paper work is endless for being on Long-Term Disability, applying for Social Security Disability (SSD), and seeing an array of physicians. Just last week I was sent more forms to fill out for my SSD hearing and the week before, I received another set of documents from my employer’s long-term disability company. Of course, the due dates are hard and fast. If I don’t get the completed forms in on time, my entire life is at risk because I have no other way to provide for myself and my furry family. It’s no wonder I haven’t caught my breath yet.
Just when I think I might be able to have a break in all the daily chaos compounded by my disorder, something else happens to take my breath away. About a month ago, I began waking up in the middle of the night with pain searing from my ear through my head. I never would’ve connected this ongoing issue to my dystonia until I brought it up to my new doctor.
“Do you sleep on your back?” he asked.
“No, I sleep on my side. I thought I was sleeping on my ear wrong,” I commented as his eyes lit up.
“There’s a reason for that!” he exclaimed.
Because this had become a common experience for me at night, I was constantly worried about placing my head on the pillow “correctly”. My pain, in addition to my anxiety, both kept me awake most of the night. He assured me this was neurological, and we were going to work together to figure these things out. But it was going to take some time.
Then he had me sit up straight with my eyes closed and count backwards from 60. During that time, he identified all of the places on my face, neck, shoulders and back that trembled. Just by looking at me! As he listed them off for the medical student to record, my mom and I looked at each other, surprised by everything he had seen and remembered.
By this time, I already felt like I was in safe hands. But then he said those magic words. “I have dystonia too.” Finally! Someone was treating me who actually understood my symptoms. Slowly but surely, I’m confident he will teach me the whats and whys behind my disorder.
“That’s my job. Not only to have your best interests at heart like an attorney does for a client, but I also need to be a good teacher for you,” he told me as he shook my hand and then my mom’s. After two and a half hours (yes, you read that correctly), we thanked him and made another appointment to see him in September.
I am now full of questions and feel like I have someone who has a vested interest in my health on my team. I’m not just a number. This is where I should have been five years ago. But you know what they say…”Better late than never.”
MY HOPES: For me, I hope my new doctor and I will make a good team so we can find some alternative therapies that will ease my pain. For you, if you are someone with a chronic or terminal condition, I hope you will learn from my experiences. It’s easy to get caught up in all the life changes, grief, pain and everything else that arises when you are diagnosed with a chronic condition. I learned to keep asking the questions I wanted the answers to. Now I know to be relentless with my questioning.
What about the things we don’t know we don’t know? Perhaps, we can just ask our care provider who specializes in our diagnosis, “What other kinds of questions should I be asking?” And “Who are the other specialists who should be on my team?” If you’re lucky enough to find a support group, bring these questions up with them too. Whenever I find out the answer to something, I am quick to share it. I figure if I didn’t know the answer, there are bound to be other people out there who still don’t know.
Start spreading the news, and share what you know, no matter who you are. Establishing connections with others and learning from one another is truly what life is all about.