Good News and a Sober Reminder

 

Just got back from my monthly rheumatology appointment this afternoon. I have monthly blood work done (7-8 vials!) and then meet with the doctor to go over the recent lab results. The numbers indicate how the disease is doing - whether it's progressing or stabilizing, etc. and it tells her if I need to adjust any medication. Everything looked really good, the ANCA test is the most important - and it's negative, and all the other numbers measuring liver, kidney, red and white blood count are all doing fine.

I do, however, have a sinus infection. Normally, that wouldn't be such a bad thing, but with Wegners, the sinuses are one of the systems it attacks. The doctor put me on an antibiotic and we will wait for the 10 days to see how it responds. She said if it goes away with this first treatment, it's probably just a sinus infection. If it doesn't go away, it might be a flare up of the Wegners, and we might need to up my meds.

I had to have a chest xray to see if there's any problems with my lungs (another system that Wegners affects).Last summer I dealt with sinusitis and nodules on my lungs, so we're hoping this isn't a repeat of last year! The doctor is confident that if we watch for early symptoms (difficulty breathing, coughing up blood or nodules on my lungs) that they can start treatment before it gets out of control.

The visit with the doctor was quite sobering... reminding us that I have an incurable disease that is very unpredictable. She said it can be like riding a roller coaster - that I could be doing fine and in a matter of a day or two, it could flare up.

So, without becoming fearful of the future, today has been very sobering... I've been reflecting on how fleeting, fragile and precious life is and reminding myself to not become complacent because there are no guarantees for any of us. Sickness and the possibility of death are always just around the corner - but only sometimes are we aware of it. Am trying to savor all the wonderful, beautifully normal moments that make up a life.

 

 

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