A Medical Diary: Coping with Lupus and Ehlers-Danlos Syndrome

Note to file Phone call 18:41 from Dr Steel’s registrar re proposed spinal surgery late January.  Dr Steel is back next week Asked me if I still wanted to go ahead  - was I any better? Were pain meds worth going with instead of surgery?  I said no changes - would need a lot of narcotics to cope with the pain long term. Dr proposed to get me in Wednesday or Thursday this week for “work-up” with various specialists.  Tests:cardiac, lung, vascular, etc. to make sure I’m okay for surgery, suggested for next week sometime. The St Vincent’s Private Hospital administration people will contact me tomorrow to arrange admission for Wednesday most likely.  

Wrote to GP this morning asking for 20mg more oxycontin on the basis that I wanted to replace the fentanyl patch that would not work.  I have been living form one 3 hour point to the next waiting for next endone dose.  Currently 40mg oxycontin and 15mg endone 3 hourly.  Previous to that 40mg oxycontin 50mcg fentanyl and 10mg endone 4 hourly, but the fentanyl didn’t work.  I converted the fentanyl amount o oxycontin and asked GP for enough to bring me equal to the amount he was giving  me previously. It worked, so I am from now taking 60 mg oxycontin and 15mg endone 3 hourly.  

Patrick came to see me.  I was not expecting him as it is New Year’s Day and I had not written a note.  He asked about the hospital visit, the pain meds and how I was going generally.  He looked at my legs/feet and commented on the swelling.  I asked him to chart an order for diazepam as the earlier one, written in November, had been lost asn I could not access the tablets sitting in the treatment room.    I noted my prednisone was sitting at 21 mg..