When you’ve had RA and its close friends for many years, you get to a point where you know as much as, if not more than, your doctors. And where in the beginning they were the primary decision makers in your treatment plan, over the years it becomes a partnership. A more balanced equation. As you learn more, and have experienced more, you have a much stronger say in your treatment. What you do and don’t want.
Mostly RA and other forms of inflammatory arthritis have the effect of taking your choices away. Big choices, like your choice of career, or your choice of partner (not everyone stands by their chronically ill mate) and the small choices, like what you can eat today when you’re jaw is flaring and seized shut.
But it also lays a whole bunch of other difficult choices on the table. Treatment choices. Hard choices. Life altering choices. Choices that require very careful risk/benefit analysis.
I’m at the point where my doctors pretty much leave the decisions up to me. They don’t even have many ideas any more. Usually I discover and research treatment options then ask for my doctors’ opinions on them.
In eight years of disease, it’s been a steady downhill slide. Over the last two years, that slide has accelerated. Nothing prevents my full body mega flares. I am in pain every single day, in multiple joints. And most days, that pain is severe.
It’s not a great life, to tell the truth.
But it’s the life that I’ve been given, and I intend to live it to the full. To the very best of my ability. I am grateful that I HAVE a life. I have had life threatening complications in the past, and each day is precious.
The choices I am making these days are almost my entirely focused on pain relief. Quality of life. My disease is out of control, and only prednisone tames it. Even then it takes a hefty dose of prednisone, and it comes along with a whole bunch of nasty side effects.
So should I take this medication? And accept all the problems that it brings along with it?
I’m already suffering the consequences of years of moderate dose prednisone. My blood sugar is high. My cholesterol is high. My blood pressure is high. These factors all increase my risk of heart disease substantially, and are a result of the medication, not the disease. There is no doubt that prednisone is shortening my life.
But without the prednisone, I would be bed ridden and have no life at all.
So it’s quality vs quantity.
And I have chosen prednisone. Mostly because I have kids. These next few years with my children (they are now 12 and 13) are the most precious years to me. Once they are living independently, my priorities will change.
Then there is surgery. A few weeks ago I had to choose whether to have surgery on my shoulder or not. It has been an incredible success. I didn’t realize how much my shoulder was hurting me until it stopped. There is still some post-op pain, but only when I move my arm in certain positions. I’m confident over the weeks this will fade to nothing.
My rheumatologist was against the surgery. She wanted us to keep focusing on the medications, get the inflammation under control. While my MRI showed a labral tear, bones spurs and cartilage damage, my rheumatologist was sure that my pain was being caused by the inflammation, not the damage.
It was a very hard decision to make. I trust my rheumatologist. It was very hard to go against her recommendation. I do not want to get her off side – I need her.
But one very strong factor tipped my decision in favor of having the surgery. Once my surgeon got inside my shoulder, she would be able to see what was really causing the pain. Because I have so little swelling, and my bloodwork is clean, sometimes doctors still think I don’t have inflammatory arthritis.
But the surgery proved beyond a doubt that I have active RA. My surgeon saw the damage and inflamed synovium. With her own eyes, so to speak. There is no better proof. She also fixed the tear, filed away the bone spur (the size of her little finger she said) and removed the synovium and the bursa.
And the constant aching, grinding pain is gone. What an incredible relief! I wish I’d had the surgery years ago. It’s a temporary fix, and a double edged sword. What’s happening in my shoulder is happening in all my joints. It’s not a good thought. So there will be more surgery. My hips are probably next. That’s a choice I can put off for now.
So moving on to this week’s choice.
Whether to have a nerve ablation (neurotomy) or not. My pain management doctor believes most of my lower back pain is very low down – SI joint through to L1. The specialist spine radiologist I see tells me my facet joints are inflamed right up to L5.
So I want to have all of those nerves destroyed. My pain doc refuses to do it. He will only do through to L1. So do I go ahead with a partial procedure, that will be painful, expensive and may only do half the job? Or trust the pain management doc, who frankly should know his stuff?
If my pain management doc is right, I should get almost complete relief from my lower back pain for six months to two years. Two years!!! That alone is seductive.
But I believe a great deal of pain is coming from the higher vertebrae. I can feel it. He just doesn’t believe me. He says its referred pain. How does he know? He just does. You know how some doctors are. They just know more than you and that’s that.
If I go ahead now and get the lower joints done, I might have to go through the procedure twice. Twice the expense. Twice the recovery time. The other option is to return to my pain management doc and have him perform more diagnostic nerve blocks on the higher facet joints. But each nerve block costs $80. And there will be a six week delay between each. So that will delay the neurotomy by around 4 months. Which will put me into next year and make the procedure more expensive, as I’ve already paid my insurance excess (co-pay) this year. And it’s four more months of being in bad pain.
Decisions, decisions, decisions. So much to think about. And these are not small decisions. These are not easy decisions. And they wear me down. It feels never ending, a full time job in itself. I see why people refer to themselves as professional patients. And there are never any easy answers. Never any guarantees that a procedure, or a medication, or a surgery will actually work. And there’s always the risk that it will actually make things worse. So many factors to take into consideration. And I am tired.
And as soon as one decision is made, the next issue appears on the horizon. I guess it keeps life interesting. But in truth, I’d like to be bored for a while.