04 June 2015

His Arthritis is Back

One year after he went off the injections, Daen's Arthritis is back in both his ankles.

He had one good year.

Now we are back to square one, on weekly jabs of a disease-modifying drug called Methotrexate, and the boy, now older, is not as compliant as before. 

The pain is most evident at night, when the muscles cool down.

Also in the mornings, before they warm up. I have to carry him out of bed. He takes a long time to get ready.

He struggles with tiredness everyday - it comes with the condition. He needs more rest than other kids.

He barely makes it to daycare by 9am. I wonder how, in 2 years' time, he'll have to reach school at 7.15am. 

We ask him what's the pain level is - he says 3/10, sometimes 4/10. 

He says he can manage the 3/10 pain, but not the 4/10 pain. We give him a painkiller called Naproxen, together with Zantac to protect the stomach. He doesn't like the taste of both, but he takes them.

How am I coping? Not very well. 

The return of his arthritis has been quite a blow. Surprising, since the Rheumatologist had already primed us that it would re-surface in 6 months.

Vera can fall sick for weeks, get admitted to hospital, but yet I can deal with it. Because I know that when she falls sick, we can manage and she'll eventually get better. I know what is the likely progression of her Trisomy 18 condition in the coming years. I know that should she fall gravely ill someday, we will have to let her go.

With Daen, it is all a big question mark. Which new joints will the arthritis hit next? Will the MTX work? If they don't, we'll have to add new, more potent jabs. 

Above all, it is the sinking feeling that he'll have to live with this condition for life. Not for 10, 20 years, as in Vera's case, but FOR LIFE. And our boy is just at the beginning of his.

I see him run carefree in the field after school, and I think of the pain that will come when his joints cool down later in the night.

Am I frustrated? Not really. Despair isn't the right word either. It is more a deep, dull, constricting feeling in my heart daily. I find it hard to be happy. 

I guess it stems from helplessness, the feeling that I can do nothing to take the arthritis away. Except to feed him well, with non-inflammatory foods, and give him jabs and painkillers.

Two kids with medical problems. This mothering job can be so hard.