There is so much I have planned to share here. A few weeks ago, we went to the Monterey Bay Aquarium and discovered some delicious vegetarian tacos. Over Memorial Day, my cousin stayed with us and we toured Alcatraz, walked through Chinatown and Little Italy, and wandered Golden Gate National Park. I read an amazing book I still want to talk about. And I have thoughts brewing on my favorite topic: How God is changing us through Brad’s illness.
But let’s forget chronological order and jump to this past Friday when Brad and I drove up and down the hilly streets of Noe Valley to the office of a doctor we were hoping could toss us a lifeline.
As we sat in his office and went over Brad’s medical history (including the 19-page spreadsheet of all his previous doctors and test results), I realized how much this story is like ruts in a dirt road. We cover familiar ground, we say the words we’ve said over and over again in the same way we’ve always said them: knee popped, swelling, methotrexate, changed diet, fever, Lyme, dental. We get in our rut of medical storytelling and stay there until we reach the end, eyes grasping at the doctor’s expression, hoping he’s still interested.
After our recitation of what’s come before, he did a quick exam, then sat back down and said, “You don’t have Lyme. You just don’t. You have Rheumatoid Arthritis.”
Either Brad or I said something about how Brad’s been tested for that before and came up negative (didn’t he see page six of the spreadsheet detailing those results?), but he said, “You have it, I can almost guarantee it.” He went on to explain the tests for RA markers can be negative, but Brad’s symptoms aren’t lying. They’re classic.
Truthfully, that wasn’t shocking to us. We’ve been quick to adopt the “Lyme” label because it’s the first one we had. It was the first time we could put a name to what was wrong. I remember announcing Brad’s Lyme diagnosis to our friends and family with huge smiles on our faces, almost like telling them we were going to have a baby. Knowing is a happy thing.
But in the last year or so, we’ve been less and less convinced. We tried several protocols and treatments that other people with Lyme said worked for them. No change. We went after other infections in Brad’s body with no change. So we were primed to think again about Rheumatoid Arthritis.
The bad news is that RA doesn’t really have a cure. As the doctor explained to us (and I hope I’m translating this right), the severe inflammation is the immune system trying to cure a problem that’s not there. It’s a reaction to something that doesn’t exist, so there’s no real root of a problem to uncover and fix. At the same time, the inflammation response is a good one–it’s your body’s way of fixing something. For RA patients, it’s just way too much of a good thing.
The good news is that the symptoms of inflammation (and hopefully all the other awfulness that goes along with it) are treatable. In fact, the doctor even uttered the words, “You could be asymptomatic the rest of your life.”
Can I get a HOLLA????
We walked out of his office with a plan, including stripping our diet of gluten and dairy (and adding a lot more organ meats and other foods I don’t consider foods. Hopefully Brad will post soon on the details), taking a low-dose medication that isn’t toxic to organs and has no known short- or long-term side effects, and taking a few other holistic remedies.
This seems doable and hopeful. So I owe you all thanks. Since I posted last, I’ve felt secure in your prayers for us. I firmly believe in the power of seeking and talking with God, and I firmly believe the prayers you all made for us are beginning to be answered. Even if this isn’t the final part of this journey, it’s a step, and you all rushed to our sides and took it with us.
And now, hopefully things will be a little less Serious and Important around here. I’ve been so in my head with the move and Brad’s illness that I forget to write about all the small, funny moments we enjoy. More of that to come.
But today, we rejoice.
As someone living (and living well) with arthritis (admittedly not RA but a similar form), I can assure you guys that there is definitely light at the end of the tunnel. I hope that Brad finds a diagnosis and treatment as liberating as I have.
I’d be interested to hear how the non-gluten/diary diet helps or otherwise; my rheumatologist is always fairly skeptical about such things but there is so much anecdotal data out there that I can’t seriously believe that he’s right about it. I’ve heard that some people have had some good results with tumeric supplements too if they’re not already on your list. Feel free to email me if I can help at all. Sending lots of positive energy to both of you.
This post is so clarifying, Joanna. Bless the Lord, oh my soul!