Things seem to be looking up. My hair is growing back and my muscle pain is improving. It should be smooth sailing now!
Hold on... not so fast.
One thing that is not improving at all is the rash on my face. The rash over my joints seems to be improving but my face is not changing at all. I also have noticed something new. I have have very sore spots all over my abdomen, around the edge of my armpits, at the top of my breast and the back of each arm from the top to my elbow. These are not just sore spots but there are hard knots in every spot that is sore.
It started with just a few on my abdomen. When they became extremely sore, I saw a surgeon to have them removed and sent off to find out what they were. It turned out to be calcinosis with fat necrosis. Simply put, calcium deposits with dead fat tissue surrounding them.
I went back 4 times to have more removed from my abdomen. I'm still angry that the surgeon wouldn't remove more fat tissue while he was at it but what can you do? :)
The calcium on the backs of my arms became very large and painful and when I noticed a lump at the top of my breast and up near my armpit, I wanted to have them removed right away.
Since DM can be caused by an underlying cancer, there was always the concern that something we had been unable to detect initially may pop up. I wasn't taking any chances since my mom had breast cancer (she has been cancer free for over 20 years).
I have always had a high tolerance for pain medication and sedatives. In fact, I can recall numerous conversations I had in surgery with my surgeon and nurses when they told me 1) I should be asleep from all the drugs they gave me and 2) I will not remember anything that happened. Sedatives and pain meds don't scare me but general anesthesia terrifies me.
One of my biggest fears was realized when the surgeon said I would have to be put under to have the calcium deposits removed from my arms because they were large and he couldn't safely give me enough sedative for a surgery that would last this long.
Reluctantly, I agreed and we scheduled surgery.
The surgeon expected surgery to last about 45 minutes. He would remove the large calcium deposits in my arms and the calcium deposits by my armpits and breast. Surgery ended up being 2.5 hours.
Once the surgeon started he could see the calcium deposits were much larger than expected (approx 8" long and 1" in diameter). They were also attached to the muscle tissue so he could not remove them entirely without risking permanent damage to my already scarred muscle tissue. The rest of the calcium deposits were small and easily removed. Everything came back benign as expected.
Recovery was much more painful than I expected but it was worth it to have those huge deposits out.
Now it was time to head back to the dermatologist to see what, if anything, could be done about the red face that would not go away.