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Survey Part 5 |
Note:
Readers
should always consult their physicians before taking any action
(or inaction) which may affect their health or involve decision
making.
Yeah,
It Is Scary! Feels Like You’re All Alone
You don’t have to feel alone totally. I know how it is with
friends who don’t understand. In a way I also understand
them—those who have never had a serious illness fall into
at least two groups: Those who want to stay as far away from whatever
it is so they don’t have to deal with it, and those who
will sympathize all day long but you know it’s empty reassurance
because they really don’t know what you’re scared
of. Plus there is this stupid “we should all be strong,
we must not cry, we must buck up, we must pull ourselves up by
our own bootstraps” bulls--t. Believe me, I’ve
had my fill of this. I don’t even bother to tell my relatives
and most friends what I’m going through because I no longer
expect them to understand. And I can also understand that -- because
I was one of them for a long time.
Have you ever wondered if a nurse or even a doctor really knew
what you were going through? There’s a thing I think which
goes like this: Unless you’ve walked a mile in my moccasins,
you can’t possibly know how I am or how I feel. So few—thankfully
for them—medical people have been through what you and I
and others on here have. Empathy is nice. It is great that many
of the medical people, from being around those of us who have
these problems and are scared s--tless, are gentle with us, can
sit and cry with us, hug us, say reassuring words and mean them.
But they have not walked in your moccasins, [name]. Neither have
I for that matter. Just some slippers that are kind of like
them.
Someone—I forget now who—said “the only thing
we have to fear is fear itself.” Really neat of whoever
it was said that. But it doesn’t help. Nice platitudes don’t
really help. What might help is first a medical miracle—a
fix for the Budd Chiari, the rising numbers, make you well again,
so you don’t have to go to bed every night scared of the
night, wake up scared of the day. All of us with transplants live
with the fear of the toxic effects of immunosuppressive drugs
we take.”
“To
find a job that would cover me insurance-wise AND for people to
realize I still have ALPHA-1.” (2 years post)
“The truly challenging part came when I contacted a fungus
that, up until I had it, there hadn’t been any cases diagnosed,
much less cured. I had the fungus in my left lung and the nasty
mess infiltrated my ninth rib which had to be removed (I gave
it back to my husband, hahaha). It took chemo, ‘shake and
bake’ Amphotericin B, and sponanox to combat this monster.
Six months later the raging fungus was gone. The medication was
a bit intimidating at first but once the fog of ‘drugs’
wore off, I was able to get a workable routine going. I started
out with 49 pills daily and am happy to say that I am down to
12 daily. Prednisone is not in my pill box these days, thankfully.”
(5 years post)
“Another thing that was interesting was learning to breath
correctly again. I had been purse-lip breathing for so long and
the dreaded panic feeling of not being able to get another deep
breath. It was challenging to learn the proper way but once perfected,
I was on my way!”
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