I had my follow up rheumatology appointment last week and I’m happy to say that he is actually willing to do something for me. Not all my bloods came back, apparently they had some trouble with some of them, so I had more taken. But he said despite everything looking OK, my ANA is now extremely high and he doesn’t like to leave it like that. More than likely it will become clear later what they are dealing with, but until then he is starting me on hydroxychloroquine. It’s a lupus/rheumatoid arthritis med, but he said since it’s fairly benign, it’s safe enough to do a trial and see if it helps some of the symptoms.
He can’t promise anything, but he doesn’t think he would do any harm. I’m kind of excited to actually try something that may help. I’m happy that he is listening and willing to accept the fact that something is wrong. So YAY! However, he wants me to stop breastfeeding before we start, I’ve been cutting down a feed or two for Benedict, but i contacted a breastfeeding drugs person and they said that research shows no ill effect from taking hydroxy for the baby, so I could continue it. Plus my rheumy says he would even let me stay on it during pregnancy, should I get pregnant, he just doesn’t like to start these things in the middle of pregnancy, or while breastfeeding. So I’m half and half about whether I rush into weaning, or just keep as is now (3 times a day) and slowly wean him while taking hydroxy.
Either way, I’m very relieved after all this to have a plan. It’s been 7 years. This is the first step in any positive direction I have taken. Whether it works or not, I don’t know.
It’s weird, a couple of days before the appointment we were in the shopping centre, when two women approached us and said they had a list of people that God had told them they needed to pray for. On the list was “turquoise beads” and my mother was wearing a turquoise beaded necklace. My mother told them I needed prayer for my illness. Tae into account that I’m not exactly religious, so it was a bit weird. They proceeded to pray over me, while staring into my eyes and I felt embarrassed. I couldn’t help but wonder what they wanted, did they want money? Did they want to “recruit” us? But they didn’t seem to want anything, they simply prayed, wished me well and left. What did they get out of it? Even though I am not a practising Catholic, I was happy for any help I could get. And then I saw the rheumy and he had completely changed his tune, from “oh you’re fine, lots of people have a positive ANA” to “we need to do something about this and watch you closely,” I was in shock to say the least. He is, however, leaving in 8 weeks, so he wants me on the hydroxy before then.
Aside from that, Benedict is fine. 17 months old and still super spirited. We are currently on holiday. Our first in a while, so I’m trying to relax. Except for the fact that I left behind my entire rucksack with all my meds, my eye drops (for my very dry painful eyes) my steroid nasal spray etc…but worse of all…Giddy bear was in that rucksack. I take him with me if I ever go overnight, and I’m so sad I left him behind. What if something happens to him? It makes me obsess thinking about it. So I try not to.
Relaxing. I’m relaxing. Who knows, maybe I’ll have a new lease of life with hydroxy. Could happen!