As good as it gets?
...that was the rheumatologist's verdict
today. There are no other medications for Sjogren's to try that I haven't
already. We're going to try to wean me down some more on the
prednisone....ideally, I'd go off it completely eventually, but a more realistic
goal is perhaps 5mg per day (I'm on 8mg right now). So one of my resolutions for
2004 will have to be learning to accept a certain amount of limitation. Right
now my fatigue level is just barely low enough so that I can still function at
work, but that's only if I do nothing else all day besides work, and sometimes I
require 10 hours of sleep before a shift. The joint pain is tolerable, unless
there's a huge barometric shift, over-exertion, or I get too cold. Luckily, I'm
able to manage the fibromyalgia somewhat when the Sjogren's symptoms are
diminished. But I will have to get serious about conserving my energy level if I
am to continue working full
time.
This is not to say I
have given up....it just means that for the time being, conventional medical
science can do no more for me in the way of treatment. I'll have to accept that
and shift my focus to things I can still change, like exercise, diet and
nutritional supplements. I go back to aquacise next week, and by the end of
2004, I hope to have added three days a week of walking to my routine, or maybe
Pilates. I'm working on fine-tuning my diet within the limits of celiac and
faulty digestion. And I'm looking at supplements like pharmaceutical-grade fish
oil...I want to read up on that first before I
decide.
So I do expect to feel
somewhat better a year from now, but I know now that a remission of symptoms is
probably unlikely for me. This saddens me somewhat, because I am one of those
people who always hopes for a return to the world of the fully
functional.
Must get some
sleep tonight...I have to get an allergy shot tomorrow before the office closes
for the week, make some important phone calls and take the dog to the vet, all
before work. I guess we just keep on keepin' on, don't
we?
Pain level:
7
Fatigue level:
9
Rave
of the Day: Speaking of fatigue, I particularly enjoy this funny from
Ducky....
Things
To Say If You Get Caught Sleeping At Your
Desk
15. "They told
me at the blood bank this might
happen."
14. "This is
just a 15 minute power-nap like they raved about in the last time management
course you sent me
to."
13. "Whew! Guess
I left the top off the liquid
paper."
12. "I wasn't
sleeping! I was meditating on the mission statement and envisioning a new
paradigm!"
11. "This is one
of the seven habits of highly effective
people!"
10. "I was
testing the keyboard for drool
resistance."
9. "Actually I'm
doing a "Stress Level Elimination Exercise Plan" (SLEEP) I learned it at the
last mandatory seminar you made me
attend."
8. "I was doing
a highly specific Yoga exercise to relieve work related
stress."
7. "Darn! Why
did you interrupt me? I had almost figured out a solution to our biggest
problem."
6. "The coffee
machine is
broken...."
5. "Someone
must've put decaf in the wrong
pot."
4. "Boy, that
cold medicine I took last night just won't wear
off!"
3. "Ah, the
unique and unpredictable circadian rhythms of the
workaholic!"
2. "I wasn't
sleeping, I was trying to pick up contact lens without
hands."
AND THE #1 BEST
THING TO SAY IF YOU GET CAUGHT SLEEPING AT YOUR
DESK:
"Amen."
Posted: Tue - December
30, 2003 at 02:39 AM