Uncategorized

Quick medical fly by

This is from a draft from yesterday.. I have actually had to sleep from 7pm last night to 2pm today. So yes. Something very wrong going on because I am like this once or twice a week not to mention the usual very long sleep in. Way too tired to do anything. I’m not even doing costume research. Just moping that my books are still in transit from the library.

I might ask if I can get family to pick up some b complex pills so I can take a whole bundle. Actually also book in for a B12 injection tomorrow. So the following is from yesterday, I think it makes sense. I was tired. Still am.

I have started to slooowly decrease my pain medication. Happily no more Naprosyn (1000mg a day, that’s a fair deal of extra sodium….) and I have managed to go down 1mg of steroids. Woot!
down to 12.5mg Norpress which is also great.
I am having to be careful and stick with antihistamines because my face keeps spontaneously rashifying. And it really does look like acne from even a short distance. It’s not. It’s dry and itchy and obviously a rash up close and personal but most people don’t get that close!
Along with that is a really really really heavy dose of fatigue and poor wound healing. These all mean the infusion is doing something! Definitely enough to take me from being in bed as often as I was but it’s still not fully tackling the activity.
My elbows and knees are two I need to be very careful of. I can feel both elbows are swelling right now and I nearly borked my left knee (the HMS I keep forgetting I still have mean my knees can hyper extend and they also now tend to slip sideways, so I need to brace with muscles while walking.)
On the whole though worth the test because the side effects are not quite as bad as with Humira or Enbrel. And happily I have not had to start MTX. Though I may if my rash turns into a more serious allergy. But hooray for being allowed the meds at all.
Right that fatigue has really sprung and I am slouching and my eyes keep shutting so big nap.

I think it need not be said that the permanent joint space loss is permanent in my wrists. Sadly even with less activity that secondary damage is still going to get worse. It’ll be slower now but still ongoing erosion. I’m like a sand dune. You can put up fences but the wind and sea will still take a toll.
It’s not futile to do because it does help slow down the effects. So I do still also do stretches in my hands and fingers to slow down and also reverse some tendon shortening. Btw that has an effect all the way up to my elbows so it’s all passive stretching (it hurts in the bone to about a hand width above the joint and the muscles feel all tight about 2/3 up to the elbow where the muscles start to bulk. Worth doing, just not a cure. It’s a hard concept to live by of course.
It’s like I also try to maintain a nutrient rich diet even if it has no direct impact on the course of the disease it is a nice buffer from additional issues. It’s one thing to know limits another to give up on what is just difficult.