Many people are wondering will I
ever go into remission. I honestly can’t
say what is going to happen. SLE affects
everyone so differently and it depends on the individuals bodies how they
respond to the medication as well as how severe their case is. Some live with
it till the disease takes them in death; and some people’s lupus goes into an
inactive stage within a few months of treatment. I have heard a lot of people
with lupus saying how you have to be patient and hold on. I’m trying to do my best and work on the patience
part! =)
I am
learning to be ok with whatever the outcome may be. My lupus could go into an inactive stage
anytime and could last weeks, months or years.
But to help keep it that way I have to adjust a lot of my ways of doing
things. Stress, sunlight, and simply overdoing could
send me into a flare at any time. I have
already seen this happen. I had started
feeling a little better and had a little more energy and the next thing I knew
I was down with a flare. It has been
almost two weeks since this flare started and hasn’t let up yet. Again only time will tell. Lupus is very hard because you never know
what it will do next.
My
doctor is quite surprised that my body didn’t respond at all to the last run of
high dose IV steroids. So already I see
my body rejecting treatment, which has been a little hard. They keep you on all these drugs to try and
make you get better but when they don’t work you wonder why they still have you
on them. They are talking about starting
me on a new drug to see if that helps any. I start Physical Therapy next week so I am
hoping I start seeing some relief from everything.
My goal
was to take a few classes this fall and finish up most of my generals, but with
this flare it has set me back in finishing my incompletes. So I have decided to
take the fall off and spend that time finishing my incompletes. Not being able to do much is becoming really
hard. I was always on the go and even
though I complained about having to do so much, I miss being so busy and being
able to just go and do things.
Another
huge thing I have to overcome is something people with lupus call the “brain
fog”. Lupus affects the brain causing
difficulties concentrating, talking, and even memory loss. I also
have a dysrhythmia in the left lobe of my brain which affects my right side, as
well as my speech. Some days are easier
to speak and think of things than other days. I can see the item in my mind but
can’t find the word or get it to come out.
When I get really tired I have to do a lot of pointing. I am not going to let this stop me in anyway
and I am going to fight the “brain fog” and still accomplish all the things I
plan to do. In some ways, I have to
learn how to re – learn. Learning new
ways to study and remember things for tests and such is my new challenge. I am willing to take this challenge full on
and see where it will lead me.
With
all that is going on I would love to help children with learning disabilities.
Share the things I have learned and am continuing to learn with children. I am
anxious to see what the Lord has in store for me and how he will have me use
all the things I am learning through this situation.
So as the days and weeks drift by, I am still learning to
adjust my life to what is going on and learn how to live my new life. If I have the opportunity to work I will have
to watch how much I do to avoid a flare. Every day is unknown, but I still have
so much to be thankful for! It could be a lot worse. Yes, it isn’t easy and I
have my hard days, but I just remind myself the Lord has a reason and plan. I also have a wonderful support system !!! =)
I am still working on a post that talks about lupus, hoping to have that up in a couple days.
Katie
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