It hits the fan - hard

Long term steroid therapy with prednisone is not working on my platelet production. Dr K decides to switch me to Dexamethasone, a stronger steroid, and up the dose to a higher level. The Dex is giving me some side effect problems. In the meantime, I see Dr Cal for a scheduled appt. He reviews my chart and labs and tells me that Dr K is treating me for the wrong condition (itp) and the low platelets are caused by the CMML. He gives me a 5 week taper to get me off the dex and tells me we'll evaluate everything when I'm steroid free. I'm happy, I go home and start the taper.
About a week or 2 into the taper, I'm getting pain in both hips. I see my rheumatologist at Kaiser, who gives me trigger point steroid injections in my hip and tells me that the steroids have masked my arthritis symptoms and it's possible that I may continue to have pains, some quite severe as the taper continues. I can still walk, drive, and do most things. As I continue the taper, the pain intensifies dramatically. I am in pain 24 hours a day most of it severe and debilitating, and I can no longer walk without a cane and only for very short distances. I call Dr K who prescribes a large amount of Percocet for the pain. I take up to 12 a day and it barely touches the pain. If this is the rest of my life, why bother living it. My days and nights are spent mostly on the couch in pain with my only moments of pleasure being brief periods of respite from the pain.
The taper continues and as it draws to a close, I notice the pain easing somewhat. I'm down to "only" 8 Percocet a day. Arlene rents me a wheelchair, which I can use to go to Rachael's graduation (see previous post) and which I also use around the house. I still cannot walk.
I see the rheumatologist again, who x-rays my hip (it's now only the right hip in pain), and gets me off the Percocet by prescribing a low dose morphine. I am now steroid free and relatively pain free. The x-rays are inconclusive, but I may need a hip replacement or other surgery so an MRI is ordered, which I'm getting later today. Results to follow.
There are no words to anywhere nearly adequetly describe the 6 weeks of hell I went thru, and it's still not over. Without Arlene, I don't know how I could have made it. She was ALWAYS there for me doing whatever she could to help me physically and emotionally, to comfort me when I needed it, and encourage me when I needed it. Bless you.