Yesterday I went to see my neuro-immunologist. I was really thrilled to be able to show him what has happened to me since I started my new treatment. He, in turn, was enthusiastic about recommending IVIG or Rituximab to try to address the unknown antibodies that have been wreaking havoc in my autonomic nervous system for so long.
What a foreign place I find myself in, here in the land of the well. Yet, utterly changed from my years in the wilderness.
I hear small whispers in my ear. “Be careful”, “Don’t overdo it,” “Choose your activities carefully,” “Do everything while you can,” “It’s now or never”.
I am more hopeful than I have been before, because we have found strong indicators that my problems are auto-immune. But there are equal parts fear and doubt. I guess you can’t be sick for as long as I have without being afraid that it will all come crashing in again. You can’t take feeling better, for granted. And because I don’t fully understand the science, I worry that I might be duping myself about it all. Maybe, somehow, I’ve convinced myself I am getting better. And that willpower will only carry me so far? It is a ridiculous thought, but there nonetheless. I have thoroughly examined my sanity, I have canvassed my doctors and my nearest and dearest. Apparently, I am sane. I just need to find a way to rest in this current state of relative wellness.
And then; there are the others. As each new day arrives and I wake, swinging into an upright position and moving to the bathroom with ease, I remember. How waking used to feel like I was drowning. I remember that for so many of you, it still does. And the burden of your illness weighs heavy on my heart. How can it not? I know your suffering. I know that for you, it carries on. And I try to fill my day with every little thing, for you. For me. For the unfairness of it all.
I am in this place of plenty, but I have forgotten the language of ease.
I can’t make it through a grocery shop without gushing to the checkout attendant. “How are you?” she asks, because it is part of the script. “Oh, I am GREAT! So good, like, really really wonderful!” I grin. And she eyes me with suspicion.
I can’t help out at my kids’ school without giddily and sincerely responding to thanks. I yelp, “My pleasure!” because it really is. Maybe it raises some eyebrows. This happy girl I am. Maybe it causes discomfort. Maybe it seems over-the-top. But it is not.
This life, this ease of moving, this chance to do things and be part of things.
If only you could feel how I feel.
I asked my specialist yesterday if he thought it was reasonable to expect this good run to continue. “It’s early days” he said. And I thought, in my stubborn way, that early days are always followed by late days and all of those days together make up more days of good than I was having before. And I shushed the whispers in my ear and skipped out to the car. The hubster commented that the last time we were parked in this carpark he’d had to help me to the car and get me into the seat. I swung my legs into the footwell and grinned at him. We drove home, my hand on his leg.
My heart in my mouth.
Please, please let this continue. I promise I won’t waste it. Not one second.
Last year on the 24th October, I wrote a post for the Living with Bob blog. Michelle hosted guest posts on her site to mark awareness month for Dysautonomia. It was the first post I wrote about my frustrations with a doctor. I usually get along great with doctors, but occasionally their pre-conceptions get in the way. Sometimes it is their egos or their ignorance in the way. This afternoon I saw a very clever and very personable immunologist who specialises in neuro-immunology. I didn’t even know we had such a rare-feathered-fella in New Zealand. But we do!
He took such a long history from me that I had to ask if I could lie my head down on his desk! A few years ago I would have been too embarrassed to ask if I could do that. But I’m a bit more vocal these days. He was a very good doctor. And he even unlaced one of my converse high tops and pulled it off my foot when I needed to get up on the table to be examined(!) Far out. Didn’t know that was included in the service! One bloke on each foot, taking off my shoesies!
The news is that he wants to try me on a six month course of immune modulation therapy. He is just getting all the paperwork in order and discussing it with his colleague. He’ll get back to me. I had to double check with my hubster as we left that he really did say that. Yep, he really did. I was amazed too, at the beginning of the consult, when he asked me why I was there, I explained that I have a list of possible causes and I can’t rest until I know I have checked them all out. He thought that was “fair enough”. It amazes me that some doctors understand why we continue to search for answers and others don’t at all. Then he went through a paper with me from one of the world’s best Autonomic Neurologists. Steve Vernino. He knew who Dr Vernino was (that’s a first)!
I think when I wrote a few weeks ago: ‘catch me I’m falling’… I got sent a few doctors to do just that. I am so grateful. For me, but also for others with Dysautonomia in New Zealand. If this story has a positive ending, it will raise awareness amongst the medical community and make a difference for how patients are treated here.
This is my piece from last year:
In the past couple of years, my care has been transferred from my Cardiologist, to the General Medicine department of our local hospital. My General Physician is a specialist doctor who coordinates the other specialists who care for me and they all consult with him as the primary doctor who oversees my case. In addition to the General Physican, I have seen a Neurologist, a Neural-Opthalmologist, a Gastroenterologist, a Cardiologist and a Urologist. They all see me through their out-patient clinics unless I happen to be admitted for something. I really like this model.
Until recently, my Main Doc was a really lovely, really clever, experienced physician who was involved, interested and not afraid to admit that he needed to find out more. He wasn’t threatened by me, or my lists, my folders or my frequent email attachments. He wasn’t even threatened by my six foot frame and it’s wobbly instability. He understood that I wasn’t trying to be an annoying patient. I was just trying not to be a patient at all. He suspected that I have AAG. Autoimmune Autonomic Ganglionopathy. The idea is that the immune system has turned against the Autonomic Nervous System in error. It begins to pick off autonomic ganglia, preventing the usual messages from getting through, throwing out homeostasis. And this thinking meant that he was open to the idea of my problems being treatable. That concept, for me, for anyone facing a progressive illness, is the equivalent of being a kid in a candy store. Treat me! It’s the nirvana of chronic illness. The delectable hope! Shiny, sweet gorgeousness!
But oh! There I was in the candy store, staring up at the jars, salivating. And it occurred to me that I couldn’t just buy what could make my dreams come true. I didn’t have any currency. The benevolent gentleperson with all the buying power was about to leave the store. And he did. The hospital moved him into another department and transferred my care to a new General Physician. One who hadn’t gone through the lengthy discussions with me about the candy and the possibility that maybe, I’m worthy of having a bag of bulls-eyes (immune modulation therapy). My new Main Man prefers the sit-and-wait approach. Main-Squeeze and I at first, politely inferred; then, referred directly to the last doctor’s findings, suggested and finally pleaded for some more action, some attempt or nod towards trying. He just took off his glasses, said we need to face some realities. Sat back and said that he would like to simply ‘watch’ my progression. Candy shop shut.
The research in this area shows that if indeed I have AAG, the nerve damage that continues to occur over time is unlikely to be able to be reversed. So I don’t want to wait while he observes more progression. I want to arrest the progression. I need to, in point of fact. Because, like all of my fellow sufferers, I have a life that I need to get back to. A husband who wants a partner in every sense of the word. Children who need their Mum in ways and at times that I can’t always be there for them. And a host of other brilliant things that are out of my reach with things the way they are. Things that would have been, if I hadn’t got sick. I’ve got some potential to fulfill. And although the new Main Man doesn’t know it, I am worthy of the attempt. Aren’t we all? There aren’t very many of us. It’s not like there’s going to be a mob looting that candy shop. And we are very polite, on the whole. Except for inside our imaginations, where occasionally, we slap people who don’t want to try to help.
I don’t have the antibodies which prove AAG. In fact, 50% of AAG sufferers don’t. But there is still a good chance that I would respond to immune modulation therapy. So, I am standing in the candy store, alone. Looking up at that candy. Just wishing that this new doctor would come striding in and say “A bag of bulls-eyes for the little lady. Quick, now, don’t delay! She needs them!” And maybe, you know, it could happen; he could treat me.
P.S The doctor who is helping me, knows about me because I kept pushing to see someone. He’s the one who strode into that candy store on a wave of good connections. Somebody knew somebody who might be able to help. He rode in like a gunslinger from the wild west, a justice rider. And I can’t help but think, if I had left the store, or tired of asking for help, I would be back where I was, making no progress and suffering my slow decline. But I didn’t stop asking. I didn’t stop pestering.
Is there someone you need to ask about something? Don’t give up, don’t settle. Maybe you were supposed to read this today. It is exhausting keeping up the fight. But life is too beautiful not to try.