David and I value loyalty, and whether or not it’s misguided, we feel some loyalty to the pediatric rheumatologist who diagnosed and has been treating Cee. But he’s basically said that there isn’t anything else that he can offer. When I messaged his nurse to say we were looking at our options as far as choosing a doctor to monitor Cee’s case moving forward, she wished us luck. I was hoping for a call from the rheumatologist begging us not to go. Telling us we misunderstood his words and that he’s in this for the long haul. Asking what he can do to make things right. All we had was a sentence message from the nurse, wishing us luck. Did we just get ghosted by a doctor?!?!
Four years of following Cee, watching her pain, and there’s not even a phone call at the possibility of not seeing us again. It’s like he never cared at all. Then again, seems like luck plays a bigger role in Cee’s treatment than actual scientific knowledge. Maybe wishing us luck was the most helpful thing that nurse could do.
The trouble is, no one else seems to have much to offer either.
The doctor we saw in Cincinnati is willing to take Cee on and monitor her case, but we can’t just pick up and go to Cincinnati several times a year. Plus, as a physician who is also involved in teaching and research– he is brilliant but difficult to contact. Not exactly ideal for a long-distance relationship.
The local Arthritis Foundation has secured a traveling pediatric rheumatologist to visit the city near us once a month. We set up an appointment with him at his soonest opening– in November. With visits only once per month, the spots fill up quickly. Cee’s history is complicated, and we know nothing about this new guy. The program could be cancelled at any point; do we attach ourselves to this person just because he’s close? Do we cross our fingers, hoping that he’s seen an actual kid with SJIA before?
-Cee has been moody lately. She mentioned that her hip hurts sometimes. We thought maybe the orthopedic doctor’s prediction was coming true– that the disappearance of the cartilage and fusion of Cee’s hips would ultimately lead to less pain. For the pain to be surfacing again is disappointing to say the least.
-We should get blood work done soon, but the lab can’t find the orders. More phone calls, followups, and babysitting.
-We need to get Cee’s monthly infusions re-approved or re-certified or re-something-ed by the insurance. It happens annually, so it’s not our first rodeo. We let Mayo know that we need a letter explaining why the medication is necessary. And now we follow up every few days, babysitting them, making sure the request doesn’t fall through the cracks. Like things have before. Cee’s next infusion is supposed to be July 10th. Will the paperwork be in by then? Will the insurance have enough time to review and approve it? Or will we be faced with a decision to treat without approval ($10,000 total with hospital charges), or delay the infusion (which could result in a flare)? We’ll roll the dice and hope luck is on our side.
-Our insurance requires a certain mail-order pharmacy for one of Cee’s specialty prescriptions. The last time I called, they informed me that due to contractual issues, they could no longer ship to our state. Funnynotfunny.
This is life with SJIA.
It would be easier if we had a cracker jack medical team behind us. Cee’s pediatrician (and especially the pediatrician’s nurse) have been ah-mazing at helping us however we need it. But they lack the expertise in SJIA. Cincinnati has expertise, but is 13 hours away. Mayo is…Mayo.
David and I are discerning what our next move should be. Do we patch things up with Mayo? Try a long-distance relationship with Cincinnati? Swipe right on the new guy? Since increased moodiness is often a precursor to a flare up, we need to get things settled soon. Our biologic clock is ticking. (I think I just made a dating-arthritis joke. Go me.)
We’re in Fiddler on the Roof, hoping to find the perfect combination of all the right traits in our match. High standards and impossible hopes. If the SJIA Yente would just tell us who to choose, that would make things so much easier. But we’d probably end up with Doctor Lazar Wolf.
Scratch that. All the free mutton in the world doesn’t make that a good match.
Maybe what we need is some sort of medical version of The Dating Game.
“Doctor Number One, what song best describes the way you practice medicine?”
“Doctor Number Two, describe your ideal physician-patient relationship.”
“Doctor Number Three, if we were on a beach for a moonlight dinner, what biologic would you order?”
Oooh, Number Three is a Tocilizumab guy. (Tocilizumab is the biologic Cee is on. I know. I’m trying too hard with the arthritis jokes. Last one, I promise.)
“Doctor Number One, what would you do if this was your child?”
We ask that question a lot, actually. I’m sure the doctors hate it, because it tangles all the logic and science up with emotion.
It’s a tough question to answer.
You get appendicitis? They take out your appendix.
Break a leg? They put it in a cast.
Contract bronchitis? There’s medication for that.
But SJIA? ¯\_(*~*)_/¯
It would be great to get all the pediatric rheumatologists in one room, so we could play The Doctor Dating Game and choose the best one. Too bad they are scattered across the country and, you know, living actual lives that prevent participation in unpaid game shows.
It might sound silly, but when your medical records span multiple facilities, it requires a lot of effort to switch providers. It’s so much work to see someone new. To followup and followup and followup to make sure everything actually got where it was going. Ugh. That’s not even the biggest piece. In talking about a disease with life-threatening complications, we don’t want to be stuck with anyone just out of convenience. To make sure the new person really understands the situation and timeline and history– it’s exhausting.
Dear SJIA Yente, can you please just fix us up with the doctor equivalent of Motel? Thanks. It’s not. that. I’m sentimental, it’s just that I’m terrified.
(If you haven’t seen Fiddler on the Roof, we cannot be friends. Or we can, but I’ll pop some popcorn and you can come watch it with me sometime. Just so you know.)