I added some photos of the area I live in on the Oregon Coast. It's a pretty awesome place, makes me happy to get out and see the beauty of this world!
I had to self medicate
and put myself back on Prednisone a few weeks ago. I had an appointment for my prescription epi
pen Symponi to be delivered and the drug company called me and said my GI Dr
Chen did not approve the refill! Well…
that was a shock. He said he wouldn’t
prescribe it until he saw me in his office in Las Vegas. Hello, I’m living in Oregon for the
Summer. So. It’s been interesting When I was completely off of the steroid,
just the Symponi alone didn’t keep my symptoms under control. I was back to having urgency, accidents, up at
night multiple times and feeling really tired and weak. I had lots of gassy, bloody mucus and felt
like the disease was taking over my life again. So, prednisone is my relief
right now, but I don’t like being on it at all.
I have an appointment Sept 8 to see Dr. Chen in Las Vegas. We’ll see what kind of path he puts me on
then. So far the only RX that has helped
a lot is prednisone, but it’s not a long term fix.
It’s hard to NOT let
this chronic condition take over my thoughts and life all the time. I always have to be aware of what my body
needs. I don’t have much time to find a
bathroom when I need one, but being on Prednisone does help with control. This Ulcerative Colitis makes me feel tired
and old. I don’t know if I’ll be able to
have an active life again. I’m tired all
the time, bloated, hungry and so fatigued with any activity. So I’m 55 years old and feeling that
old. It’s been two years dealing with
symptoms and trying to figure out this disease.
It feels like forever and that I may not be able to be active again. I sure hope not. I can’t get a good night’s sleep, I’m gaining
weight, I feel sluggish. The hope is to
find a RX that works that isn’t a steroid that will keep symptoms away and inflammation
down.
My colonoscopy I had in
June showed great improvement so that made me hopeful. The doctors said they’d stop considering
surgery for me, thank goodness. Who
wants to lose part of their bowels and deal with all of that?!
So I work in our trailer
business cleaning trailers, supplying trailers, going to the laundromat, and
some accounting work. Some days we are
very busy and I have no time to rest or stop.
Some days I lay down when I can just to catch my breath and rest. Our business is doing VERY WELL! We rent camp trailers along the Oregon Coast
in Summer and at the Dumont Sand Dunes in the Winter… live in Reedsport in
Summer and live in Pahrump in Winter.
We just set up our Toy
Hauler Vortex trailer for us to ‘live’ in on the business property! I’m pretty happy about it. We now have a full kitchen, full bathroom
with shower, running water and a cook top and oven! We lived in the ‘shop’ room with a bed, a
fridge, a microwave, a hot plate and that’s it.
Our bathroom in there was only a toilet and a sink, no shower. I would wash dishes and shower in any trailer
I could find on the lot when available.
NOW we have our own trailer to live in.. we aren’t renting it
anymore. It will stay in Oregon. Pretty excited and it feels so
different. Makes me happy to have the
amenities most people take for granted.
It’s the little things that are the big things we should be thankful for
ALL THE TIME! Running water, a shower, a
sink, an oven. All blessings. 
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