Hello all! =)
Well I have been busy
getting things transferred from Mayo to specialists here in Grand Forks. I have
also been “flaring on and off for the past two weeks. So its been an off and on couple of weeks.
We were able to find
a neurologist, nephrologist, and rheumatologist in Grand Forks so we will
hopefully no longer have to go back and forth to Mayo. YAY! The rheumatologist wasn’t
supposed to have any openings until February but they called and were able to
get me an appointment in December, another huge praise!
I started having some
blurry/fuzzy vision in my right eye on Tuesday, and with my one medication be
known to cause retinal toxicity we thought it would be best to check it out. Come
to find out it’s the steroids causing small cataracts behind the lenses in my
eyes. My eye doctor was quite surprised to see that. I am just thankful that
its not anything going on with my retinas. He also gave me some artificial
tears since my eyes are dry. I really didn’t think that my eyes were dry until
I put the drops in, such a big difference!!
We saw my doctor here in town today and he has started the
processes of lowering my dosage of prednisone. Since I have been on so much for
so long I have to take it real slow to avoid my body going into shock. He said when I see him in a month I should
either be completely off or down to at least 5mg! I am so EXCITED! =) He also
said that all the symptoms I am currently having are from the prednisone and
once the side effects are gone they will be able to have a clearer picture on the
lupus. The nephrologist will have to
make the move on the cell-cept and we see him next week. A little more waiting but I finally feel like
we are on the right track!
These past few weeks I have had many down days were I can’t
do much but lay around and sleep. I have also had the return of the low grade
temp. It’s so hard to really know what is going on since everything changes and
there are so many unknowns. My body is always just a mystery….. I am still
confused at this disease. It changes from day to day and something is always showing
up. One of my favorite sayings I have
found about lupus is “I have lupus but lupus doesn’t have me!” I just learn every day to deal with what is
thrown at me. I am on a lupus support
group, which has been a great resource for information and a place to ask
questions or relate to people that are going through the same things. One thing
many people say is that they wish they had cancer or some disease that actually
makes them look sick as many people don’t understand although we “look good” we
are in the inside screaming. I often
feel trapped inside of my own body and I can’t get out and that this dreadful
disease is running my life. But if I let that get to me it just makes me more
miserable. I have and am still learning
to live with my limitations and make the best of things. I might not be able to
do things the same way I used to but I still am able to do things.
I am still waiting to hear on when an apartment is
available, it has only been two weeks but I am already going nuts!
Well, that’s it for now…
Ill try and update sometime next week if all goes well.
