Wish I could be a bit more positive but am not feeling so good today. Dwelling on my stage 4-ness (hence my decision to finally do treatment), knowing that 6 is cirrhosis. That I have 'at best a 50% chance of cure' (letter from my consultant, thanks). That I'm only 37. That I have had this disease for 20 years. After 10 I had 'mild inflammation', and after 20 'stage 4 liver damage'. How come? Doesn't seem to make sense. Talk about rapid progression. The only thing I can think is that having relapsed on interferon, 10 years ago, perhaps the virus came back in 'superattack mode'. I've spent the last 10 years abstaining from alcohol, eating well, exercising, using complementary therapies (milk thistle, homoeopathy, reflexology, osteopathy, massage) etc, thinking it would help keep me well. And I have lots of other 'positive indicators' going for me - being female, young(ish), short and slim. And I have felt pretty OK, just a bit tired sometimes (but doesn't everyone?). And during this time I've managed to gain my degree and doctorate, and have been able to work full time in a demanding job. My ALT's are the only thing that have ever been elevated and even these have always been pretty normal (never above 60). So I don't understand how my liver can be in such a bad way. My partner, bless him, keeps trying to tell me the results must be wrong, that there must be a mistake. I wish.
So today is hard, not because I feel unwell but because I feel low. And it will pass, and I will feel OK again. Thanks for listening
Lu
posted by lu @ 2:00 PM
3 Comments:
you sound sad. Someone sent me a letter recently and in it they wrote "We are learning from you. My life is going well and I tell myself that it is something I am doing right. It isn't, it something I must be very thankful for." That helped me. Like you, I kept trying to figure out what I was doing wrong. She helped remind me life doesn't work that way.
I hope you start feeling better.
My husband's nails are a bilirubin meter - white and flat = high; turning pink and growing out = improved liver function. We also do the "hand flapping" test. Hold your arms straight out, fingers up and palms flat, if the palms "flap", it is time to take 2 Tbsp. Enulose syrup and cut back on red meat! (I don't know what a scientist would think of all this!)
Have a good day.
Kerry Grace
ps. he's also on Procrit, it's going well.
Hi Lu,
Charming letter from the consultant - have to love the choice of wording. Believe I've mentioned how I think a little more empathy and a little less professional paranoia would go a long way in certain health care scenarios.
Am so incredibly impressed with everything you've acomplished while having this virus. You are an extremely strong, motivated person. Plus, you are proactively dealing with the disease by following positive lifestyle choices, and by going through the treatment - the only one currently available to us for hcv. You are inspiring!
Sue
Thank you so much Kerry Grace and Sue for your very kind and thoughtful comments. It really means a lot to me that you took the time to do that.
Kerry Grace I tried the hand flapping test but don't think I quite got it...!
Sue - yes, sometimes we just need our medics to be a bit more positive with us! It would certainly help me be less frightened of seeing my consultant for the 'bad news' she always seems to have up her sleeve...I once asked if she could please tell me something good...
Hope things are well with you both, and thanks again
Lu
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