Muscle Weakness on Plaquenil

The muscle weakness I've been having since the beginning of May seems to be getting much worse. It's in my arms and legs. It has gotten to the point where my muscles are sore and tired from the most basic things like getting dressed and washing my hair.

I messaged my rheumatologist today saying that I want to stop the Plaquenil (400mg) so I can maybe see if that's the cause, or if it's something neurological instead. I have a month till my neurologist appointment. In my mind I'll stop the Plaquenil and quickly tell that it was the cause. But if I stop and it's still there when I see the neurologist, I can then talk about possible other causes. That's a scary thought.

I never thought of myself as a "scared" or "fearful" person till all of this. It's not death that scares me. Death has never scared me. It's the feeling of "how bad is it going to get?" Fear of the unknown. Every day, every week, every month seems to bring so many changes that I'm constantly playing catch up. If even I don't know what's going on, how can anyone else? How can my doctors help or my partner continue to give me endless support? I think that's where the heart of the fear is. Loneliness and isolation.

Some thoughts from my journal last week.

But before I get too gloomy, I have to share that with the help of my husband I was able to get out and do some gardening this weekend. HORRAY!

What got planted!

I was a little late this year, but I'm hoping these little seeds will do their magic and we'll have some delicious veg from the garden by late summer. I was so excited to get out and get it done. 

I'm hoping to hear back from my rheumatologist soon. For now it's more of the "hurry up and wait" that has become my "new normal."