Saturday, October 12, 2013


Lung function was 66% of predicted FEV1% (the amount of air you blow out in 1 second) and volume 100%. (FVC). The FEV is normally the more important nr and dropped 2% which according to the Dr is no change. Weight up 2kg (worked vey hard on that one! Still want to gain another 2kg to get to 57kg). And Dr says I "look good"... for what it's worth. Disappointed that after 10 treatments and being pricked by MANY needles and 5 femoral lines and a blood clot and painful injections in stomach for clot (and now not allowed to play squash for a year or however long I'm going to be on blood thinners) and having used up all my sick leave and a few days annual leave I feel like I have nothing to show for it.

Obviously that means I'm being "negative" apparently and I should be happy with stability. So yes I am feeling a bit negative and tired right now, (especially after the blood clot) but sure I'll start feeling better when I gym a bit again and gain some more weight and trying to keep myself busy so I don't think too much. I'm a stubborn person and worked hard to see improvement and won't stop doing that. So discouraged doesn't mean I'm giving up by any means. I'm a fighter and that's why I'm still here today. But I also need to be able to be upset and irritated even though I'm trying to be more thankful. Next photopheresis is 23 and 24 Oct (got a week extension of next treatment due to clot) and then the Drs will have to apply to Discovery for another 8 treatments. Hopefully that's not going to be another big issue again. So hopefully this discouraged phase will pass soon and I can be more positive again.

Dr also hinting that I need a holiday, so going to try and organise to go visit my sister and Antoinette in PE for an extended long weekend for a nice girls weekend of chilling and the beach and going to my "happy place" Storms River Mouth for a day. Just need to re-charge desperately and not taking any leave over Christmas.

This weekend is a good one, went out for supper last night with Chris, went to baby shower this morning, having supper with our friends and their twin babies tonight... tomorrow brunch out and lunch with the parentals and then church.

Goal for the week is to do some slow gymming, need to go for bloods again on Thursday to test Warferin levels (anti-coagulant I am now on) and to try and be more positive.


Anonymous said...

It's ok to be "negative" sometimes. It's ok to feel frustration and to take some time to feel grief or sadness over the difficult parts of life. Living, being human, is both at times miraculously beautiful and at times painful and hard. It's ok to be in touch with and honest about all of the realities of your journey. Thank you for openly sharing all of it with us, the joy and love in your life and the pain. I wish you all the luck in recharging and hope your body soon allows you to return to life with fewer frustrating moments. Nice to be given doctor's orders to take a vacation :-) xoxo

Sherry Boyle said...

Alice, my heart goes out to you right now. Know you were hoping for better results. Stay strong and allow yourself some time. Don't deny your feelings. They are legitimate and real. Do you know of the Canadian author Ann Voskamp? I recommend her book One Thousand Gifts, as well as her website. Search for her online. I think you'll be glad you did. Her book could be helpful to you right now.
Lifting you up to our Lord,

Alice said...

Thanks Sherry will look for it on my Kindle!