Well, it’s been a few very different months for me, but I
think I can share about things now.
Within weeks of my last post (in July), my legs stopped
working. The PA I see at my Neuro’s office suggested IV steroids, which I had
declined in March. I went with them this time, thinking it was a responsible move
after falling 3 times in 8 days! I had been on steroids twice previously, but
those were oral, where you start with like five pills a day and taper down to
one pill over 5 days. This time it would be 1,000 mgs per day, for five days in
a row. Since I no longer drive, they arranged for a nurse to come in everyday
to give me the infusions.
Sure enough, I don’t play well with IV steroids, and after a
trip to the hospital (I had watched my heart beat all night,) where the heart specialists couldn't be bothered to consider that I had a reaction to steroids, a flunked stress test and a heart catheterization, I was
$500 poorer and STILL in a wheelchair. Oh – and IV steroids cause some wicked withdrawal symptoms.
On the plus side, I now know that my arteries are
pristine, they are configured in such a way that I will
always flunk stress tests. So there was a lot of anger, frustration, confusion
and just about every dark emotion one can have throughout August and September,
and even a little into October.
I permitted those feelings, something I have not always
known to do. But I’ve learned it’s good to name how you feel (the same way you name a demon that can bug you) and get
familiar enough to be able to process it and ultimately let it go, having gained
from the experience. Now I already knew I didn’t care for a loss of control,
but in general what I learned this time was A.) Feelings are not bad for you to
have; and B.) They don’t control you if you control them. Yes, both of these
were new to me at 53!
Eventually I was able to get back to being the Susan I want
to be – the one that can see the God things in the midst of all the horrible
realities, and appreciate the helps that are available to people like me. It’s
easier to accept using a wheelchair full-time when you realize that you don’t
fall anymore (easing your son's stress level) and that your body hurts less since you’re not forcing it to do
more than it can.
So here at the end of January, I’m lined up to get a power
wheelchair that is going to be perfect for my needs – there’s a clinic in town
that specializes in just that. I’ve had Physical and Occupational Therapists in
to suggest more assistive devices (that my wonderful brother bought for me,) and to my great relief, declare that I
don’t have to move out of my place right now. It was really beneficial to hear
their evaluations of my condition, since they have more experience in these
waters than I. They have suggested I look around and identify where I want to
go when I need Assisted Living, as that is almost certainly in my future.
Part of my confusion during the summer and fall of 2014 was
that I felt great. I could think, the legs didn’t hurt, they just didn’t work…it
was nothing like my situation in 2011. God had given me a book to write just
before all the medical stuff started, and I am working on it as I write this.
And, for the first time in many years, I was able to craft most of my
Christmas gifts, including making packs of greeting cards for people to use. Of
course making the cards took a lot longer than it would have when I was less affected
by the disease, but I had the mental energy to be creative and to think through
the step-by-step process for each card, and the hand control to complete the
tasks! The picture below shows some of them.
Lastly, I am performing stand-up for LaughFest again this
year! There’s an outside chance that I might even have my power chair in time
for my performance.
Seriously, who can
complain?
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