So Kim has been fighting the shingles for just over two weeks now. Her rash looks much better and has mostly cleared up. However, the nerve pain and fatigue have continued throughout. She stated Sunday night, “I have concluded that shingles are extremely painful.” This understatement coming from someone who is already in constant pain.
She’s been off her Humira since she was diagnosed with shingles as Humira and shingles don’t play well with each other. We had hoped there would be enough Humira in her system to help with her RAD symptoms until the rash went away and she was able to get back on it — and to a certain extent that may be the case — but her pain in certain joints has increased and her swelling is significant so it looks like that hasn’t held true.
Today she had a scheduled visit with her rheumatologist which came at a great time since the shingles rash seems to be done and we were hoping that he would put her back on the Humira. Turns out that was not going to happen. He wants her to stay off the Humira for at least two more weeks. He also suggested/asked Kim about stopping the Humira altogether and simply staying on her other medications without any biologics. His concern is that Kim could get the shingles again. Yes. We know that. But we also firmly believe that she would be in a wheelchair right now if it wasn’t for the Humira. So no, she will be going back on the Humira as soon as she can. If she gets shingles again, then maybe we will look at switching to another biologic.
Kim also talked with him about the neck and back pain that she has. He said that while “rheumatoid arthritis can affect the spine, it’s rare” and he’s not concerned. Really?!?! So this journal stating that 83% of RAD patients have their cervical spine affected in the first two years must be wrong. Or, maybe a percentage higher than 83% is needed to make it less rare. Or maybe we could look at this article, or this one, or this one which states that the spine is affected in up to 86% of those who are diagnosed with RAD? The frustrating part of this is that the doctor is suppose to know this. We should not have to be the one educating him!
I wish that was all, but it’s not. In our shower we have a tiny stainless steel mesh strainer in the drain to catch hair. The sort of thing that gets all gross, but is functional. Monday morning Kim used her foot to re-position it and in doing so felt one of the little mesh wires poke her toe. Enough for her to notice that it was sharp, but she didn’t notice any blood or a puncture mark so she didn’t think anything of it. Later on in the day she noticed that her toe — the middle one that didn’t stay home or go to the market, but instead bought roast beef — was painful. I looked at if for her when we went to bed, but didn’t see a mark on it. During the night the toe began to hurt to the point where she woke up from the pain. Seriously, moving a wire mesh strainer should not do this. When I got home for lunch on Tuesday the first thing I did was look at her toe. It was red, swollen, and warm to the touch — all indications of infection.
Infection and RAD together are not to be treated lightly. And since at least three of the drugs that Kim takes further weaken her already compromised immune system, it seemed to us that this should be taken seriously. We expected at least antibiotics. Instead, he looked at her toe, stated that it seemed fine, and told her to “keep an eye on it”. Fortunately, her toe looks the same today that it did yesterday, but we are keeping a very close eye on the little piggy with the roast beef.
Honestly, I’m frustrated. I’m upset that her rheumatologist doesn’t seem to take her pain seriously. I’m bothered that I know things about RAD that he doesn’t. I’m irritated that he treats a slightly elevated liver lab test like it’s a stage four cancer diagnosis and poo-poos an obvious infection. But most of all — and I’m being completely transparent — I’m frustrated with myself.
You see I quote the verses and make my statements about how I believe that God is sovereignly in control of everything including Kim’s diseases, yet too often I find myself doubting and questioning what He is doing. The truth is . . . . . this is hard. As I tweeted to a Rheum-mate today, “watching someone with RAD is like watching someone die a death of 1000 cuts.” Yes, I know all of the possibilities of how this could play out, both the good and the bad. I realize that the road ahead will likely not get easier. But even though I know what may come, when something happens to upset my little apple cart of life, I react wrongly. Oh, I may say the right words and paint on the brave face, but inside is a war where I fight God for control. And every single time, I lose. I wondered today as I reflected on my sin why I couldn’t be reminded constantly of His faithfulness in the good times and the bad? Why can’t I live in perpetual surrender to Him? I texted a few friends and asked for prayer. And to one of them I asked why I couldn’t keep the song that is below on constant replay in my head? Maybe some day I will learn to trust His goodness and faithfulness even when it doesn’t look so pleasant.
If you then, who are evil, know how to give good gifts to your children, how much more will your Father who is in heaven give good things to those who ask him!
(Matthew 7:11 ESV)
The steadfast love of the LORD never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. (Lamentations 3:22-23 ESV)
Update: Thursday afternoon. Kim’s toe looks much better. It seems at this point like her body was able to fight off the infection.