Yesterday, I finally looked up information on Wegener’s Granulomatosis [WG]. Even though my diagnosis came through in October, I was so anxious and ill that I just couldn’t do my own reading. I relied on Weasel to look it up and arm herself and pass the best information on to me.

So yesterday for the first time, I saw lists of symptoms, treatments and statistics… it wasn’t new information per se, more that it made what I knew more real. Things like only 8.5 people per 1 million actually get WG – rare. That is it like cancer in that our end goal is remission – there is no cure. There’s a 40% chance I will relapse and I can see myself getting very scared every time I get a cold.

Being haunted by an illness is nothing new to me though. I had depression when I was a teenager, so every time I felt a bit blue I was scared it was back again. It came back in 2004 and again in 2007. I also have experience with a disease that lurks invisibly: polycyclic ovarian syndrome [PCOS].

I’m very fortunate in that my local hospital is a teaching hospital and held in very high regard so I really am getting the best possible care. People come from all over the UK to come to my hospital that’s 10 minutes down the road. I’m also very lucky in that my kidneys have thus far been unaffected.

I’m coping with all of this better because I finally feel that my anxiety is under control. The antidepressants are doing what they’re supposed to. My current plan is to keep on with the beta-blockers until I see my GP on the 28th. Then I’ll discuss with him the possibility of reducing or stopping them. It used to be that I could feel the beta-blocker wearing off. My pulse would start going all hard and fast and I’d feel all stressed etc. I’d try deep breathing or stretches and nothing would help. Now though, I don’t feel the drug wearing off and if my pulse does speed up I can take a few deep breathes and it calms down. Bliss.

When the background morphine pills were upped to 45mg twice a day I was supposed to be able to reduce the amount of liquid I had to have. This hasn’t been the case – I was still having 10ml every three hours. So on yesterday I had Weasel call the doctor and I’m now on 60mg twice a day. I’ve felt so much better today, I’ve managed to go almost 3.5 hours between one dose and another. I’m going to see about doing 3:15 overnight tonight and see how I feel tomorrow.

Friday is my next dose of cyclophosphamide – my new treatment replacing the methotrexate. The whole process will take 4-5 hours. They start with a blood test then we have to wait for the results before they can proceed. Then there are anti-nausea drugs and this drug… it means a lot of sitting around. Thankfully Weasel is able to go with me. We’ll take books, MP3 players, the DS and hopefully the time will fly by. I’m trying not to be nervous about it.