Every two weeks I have an appointment for an enzyme infusion which means I am hooked up to an IV for about 2 hours every second Friday. In the interest in spreading the word about orphan diseases and funding for them outside the normal provincial medical plans, I am providing some links:
www.fabry.org
http://www.rarediseases.org/
Fabry Disease is one of the many orphan diseases that needs some air-time. Our story of a quick diagnosis is as rare as the disease itself. Help spread the word in the hopes of early diagnosis for those yet unaware that they have it or other orphan diseases. More info is available on both of these websites. But back to today...
Today is infusion day for me. I have to be there at 12:45. This morning, I decided to do something kind to myself...something special...
There is a new bistro in our neighbourhood called Cherries Breakfast Bistro. I decided to pop down there this morning and check it out. Wow! I looked at the menu and saw that they do an all day breakfast and chose the Florentine Eggs Benny. Yummo!
It was every bit as good as it looks. I shared some bites with my DH. I would have bought him one too but he was supposed to be gone by the time I got home. He's off to the mainland to play with his band at 2 gigs. What does this mean? SEWING time for me...guilt free!
So now, that breakfast is taken care of, I'm off to the sewing machine to get in some play time before my infusion. Then, because of the Benadryl they give me, it will be a nap this afternoon and then probably some more sewing this evening.
Oh yes, and I will either take my kindle or some hand sewing to the infusion to help pass the time in the chair. I'm reading this
and it's a great read. I also have some hand applique that I could take if I could get a kit together in short order. But then again, I would really love to spend this morning sewing on step 3 rather than gathering a project together.
So, off I go now to do some sewing. I'll post some pictures later tonight after some progress and that wonderful afternoon nap.
Until then,
Mavis
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