The day started early. We had a better night’s sleep last night so one would think we could bound out of bed with gusto this morning to get to the hematologist on time. But the day is very overcast and drizzly. Katy and I have a theory that as the night falls and the temperature drops the linens on our beds begin to freeze. By the time we crawl in at the end of the day we shiver and shake. But by morning the linens thaw and the temperature under the covers is just right. On a drizzly day like today we wanted to pull the covers over our head and stay there. But we soldiered on. We arrived for the appointment five minutes late then waited an hour for the doctor. We took our morning devotions with us and made good use of the time.
The hematologist has suggested we cut Katy’s steroids and that the pain along her spine and nerves may be coming from a condition induced by the high dose of steroids. Katy has had Shingles before all the HPS symptoms showed up last July. So we weren’t thinking she could have them again. However her hematologist looked her over today and said that the nerve ending pain and numbness in her hands and feet are symptoms of active Shingles. When she suggested that, Katy said, “Yes, this pain is like the pain of Shingles!” That would also explain why the pain medication is not working well. Nerve pain is not controlled by doses of narcotics. So today we started cutting her steroids again and will taper them as long as Katy’s GI tract can tolerate it. I told the doctor that at this point we are frustrated that the steroids need to be high to keep her disease under control, but the medication is causing so much trouble. All of us agreed on that but when we discussed other courses of treatment, such as Remicade or Imuran, she did not think favorably on the idea. Since Katy was hoping for a new course of treatment she left discouraged. Therefore we stopped at Sonic for a comforting hamburger and a banana smoothie which Katy reports is settling nicely. So here we are back home relying on the mercies of God to see her through the pain.Comments: