And here we are again, my most (food) tempting and
challenging time of the year.
This year’s been challenging all around, as far as keeping
an eye on what I eat. But the holidays are the worst, as you can imagine. I
wish I can say eating healthy is a way of life, after 33 years of knowing about
my disease. But I am an FH patient who happens to love bacon and ham and eggs
and French fries.
As you also know, no, I don’t eat all that every day, but
even once a week or a month makes me feel bad about myself. The latest
(September) numbers are below, and I was thrilled that my triglycerides are
once again normal – which always tells me as far as I can control this, I am
controlling this. The rest of the numbers don’t look too bad for an FH patient,
I think. And without having had a drastic procedure, like an apheresis
or anything like that, I think I am handling the numbers the best I can.
Plus, you know what the doctor said last time: the numbers
are not important anymore (till next time when they become important again!).
They said the presence of heart disease and atherosclerosis is what matters.
Not sure how they gauge the severity of that – but there you have it.
My quality of life has been pretty poor lately, although the
cholesterol numbers are OK (for me). I have either a gallbladder issue or some
food sensitivity that wreaks havoc in my body – my metabolism doesn’t seem to
be quite happy lately: from skin rashes, to skin peelings, to bloating, stomach
pain, fatigue, no energy, you name it, I’m going through it. Some people say it’s
the stress. I think it’s yeast, gluten, fat, all of these, some of these, or
something else … but I am not the happiest patient, for sure!
Plus, living in a
state where doctors print internet articles to have you read them at home,
rather than knowing what is wrong with you, based on your tests and symptoms,
doesn’t really move things in the right direction.
With all these symptoms and apprehensions, I am marching
right along into another holiday season, and later next month into my 40th
year of life. 33 years or so ago, no one believed this day would come. But here
I am. A third part luck, a third part modern medicine and another third part moderation
in everything that entered my mouth and in lifestyle, in general, got me here.
It’s more than I ever asked for. More than anyone planned for. And for that, I
am grateful!
I wonder if you could get access to a PCSK9 inhibitor through a "compassionate use" program.
ReplyDeleteHi, Marilyn,
DeleteActually, there is a study in my area and my cardiologist said he could get me in it. I am waiting on them to send me some information to read more about what it all involves. Have been super cautious about signing up for studies historically but I will assess the risks (that we know about so far) and see. Will definitely update, either or. Happy New Year and thank you!!