After being ill for over 15 years I have finally figured out a thing or
two about housework and these illnesses and now I just have to convince
my husband;-)He is from the contry (which is good) but also means your
house should be sanitary and widely neat everyday even if you are on
your deathbed. Well, I did not grow up this way at all but a clean
house is still important to me (in its appropriate priority - after
family time....) but my body will not cooperate with this belief so I
had to and still work on making peace with my limitations.

I have learned to make things as easy on this body as possible with
tools and rest techniques. If I am folding laundry I to it in the
bedroom so I do not have to carry the folded stuff thru the house. I
also sit down and take my time folding it resting when pain or fatigue
demands. I use a stool to make dinner when I can as standing through an
entire meal prep is impossible. I use one of those tall rolling carts
to transport groceies, laundry and whatever elese I need around the
house or from car to home. It was the best 29.99 I have spent in years
truly. I use pillows to prop myself in car or at home, and I use my
cane when I need to due to pain and weakness in legs. My goal is to try
and do a load of laundry or dishes a day but I can tell you that often
does not happen at all. I wear gloves to protect my hands from cuts and
splits by Sjogrens. And the biggest one for me this year was accepting
that I need help and letting friends do so - those who are healthier
then I and those who are not but having a better day then me. When I
can I return the favor to them.

I pace myself daily as we all have to and try to be happy with what I
could and did get done and not what I could not.

Pace yourself, do not be a slave to your little voice that says your
home must be a showplace. Accept that a little more clutter is going to
be part of the deal daily and when you feel up to it you will do more
about it.

Recently the nephorologist discovered that I am loosing lots of
potassium and magnesium renally so I am now on potassium ( let me tell
you I just thought I knew fatigue prior to this year and low potassium
both mental and physical) and a dirertic that is potassium sparing. My
fatigue has improved greatly with the potassium horsepill script thank
God. While low on the potassium I too experienced lots of leg pains and
charlie horses. It used to be that I could get out of bed and stand on
affected leg and the cramp would go away but not this last round. I
will keep your tips and mind and appreciate the in put.

Update:

In fact, during my most recent attempt to make some improvement in my
health we did a double your steriods for 14 days experiment- 40 mg per
day. Let me tell you that the 14 days of double doses were torture and
I got all of 35 hours total sleep in all that time. My body refused to
rest but my pain was not much less unfortunately.

At 14 days of high steriods I was at the end of my rope towards the end
of the experiment as was my family. The point was to see if we could
reduce my inflammatory markers as they have been off the chart even
though I take 18 perscriptions a day.

My SED rate howevers in the high 50's (0-28 normal) and c reactive
protein always 2.34- 2.64 should be 0.00 to .08. Well, I am happy to
report that my makers did go down, sed rate within high normal 27 range
(first time in years) and c reactive protein 1.57 so marked improvement
there!

Rhumey and I are thrilled and will now try methotrexate to treat the
Lupus and UCTD, complex pain syndrom, Reynauds, Pericarditis, Sjogrens,
chronic migraines, IBS, and more side of things, not sure this drug
does anything for the fibro.

I ended up with some crazy pain flares 3 days in a row towards the end
of experiment which I will blame on losing 110 hours of sleep in 14
days. For 3 days in a row I woke up one morning, and tried to stand to
go to the bathroom and felt as if someone had broken (no shattered) my
bones in both legs. I just almost coudln't walk and oh my God tears
sprang to my eyes and flowed. I used every trick I could think of to
lower pain and after several hours of tears and moaning and bthru and
bengay finally my pain went from a true 10 to an 8ish. I was so
grateful. The next night same thing only both my hands, and the third
night it was my chest pain and tightening - most scary.

What is interesting too, during the experiment was that my fibro
symptoms were definitely teed off at the steriods in my body were
doubled - muscle aches and more increased which for me are more fibro
based. Fibro is known and confirmed to not cause inflamation in the
body and other a.i. diseases most certainly do. Fibro is also known to
cause low or high substance P in the spinal column fluid.

I got a great tip from rhumey the other day on Substance P and fibro
too. He says use capsacin (generic good) for arthritis rub and use it
2-3 x's each day - then he says after 3 weeks or so the stuff starts
leaking / or building up substance P into the body and helping with
pain. AMAZING! Going to go and get me some of this tomorrow. When I
used regular Bengay or even the Thergesic stuff recently it made my
pain worse for at last two hours because it felt like someone lit my
nerve endings on fire not good at level 10 pain.

Also, fibro and lupus naturally work against each other and respond so
differently to treatment. I can respond more on this for anyone
interested as told by immunologist I see. It is a wonder to me that my
rhumetologist can decide where to start in treatment at any given time.
Squeeky wheel symptom gets most attention.

I am one of their most difficult patients in that office (not difficult
to deal with :-) well sometimes maybe) but one of most disease complex
but I would happily relinquish that title to anyone any day- not that I
wish this on anyone. Because I am so difficult to treat they spend a
lot of time talking about my symptoms and treatments so at least that
is the silver linging and brillant minds thinking and at work to help
me and others. Maybe there is hope instead of steady progression of
disease that we might actually make me feel better even a tiny bit for
a short while and maybe more.

So, I saw rhumey after 14 days on 40 mg of pred and told him I have
never been more ready to taper in all my life. Previously, and
currently tapering even 2.5 mg of the pred was incredibly painful and
caused a major flare..... this time I was so crazy with no sleep and
exhaustion I did not care.

My truly and sincerely, wonderful rhumey said he thought I wouldn;t
have any trouble going from 40 back to 20 mg of pred because I had only
taken it for 2 weeks and that my body shoudl let me rest the very first
day of reduction.

Well, on the sleep part her was right on target, but the inflammation
was worse within hours of lowering daily dose, fever, mouth ulcers
worsened and pain was through the roof. Today is my 3rd day of reduced
but normal does again and I am patiently waiting for body to adjust.

For me I use the duragesic patch for pain (75 mc/hr) and 10/500 lortab
and flexeril for breakthrough - had to increase the bt meds some while
adjusting.

I still take Celebrex and from what I have read the risks are the same
as Vioxx but only in higher doses. I take the lowest and I can't
imagine being without it.

Also, prior to the voluntary recall of Vioxx did you all see the study
that says people on these cox 2 inhibitor drugs must be extremely
catious if switching from Vioxx or Celebrex to another nsaid anti-
inflammatory because doing so can cause a serious GI bleed? Not trying
to scare just provide info to those of us who can't always keep up with
the news or the rest of the world.

The new drug is hopeful methotrexate and it has been around forever he
says. The most common side effect is nausea on the day you take it and
you only have to take it once every week. He, specialist says folic
acid in high doses (water solluable so cannot really od on it) will
help immensly with nausea. I have to have labs done every 8 weeks on
the drug but I am at the rhumey's office that much anyway easily.

Will have to probably take magnesium and potassium for the rest of my
life too says nephrologist and remain under his care but if it makes me
feel better OK.

Some of you may remember too, that my husband and I were having great
difficulties in our marriage due to mostly health issues but also
beause we need help to communicate effectively. We have been in
counseling now for 4 weeks and things are improving greatly I a happy
to report. We are actually looking forward to seeing each other at the
end of each day instead of kinda complacent and wondering what battle
would insue tonight....

Thanks for reading my little book tonight, hopefully something I said
has helped someone. I wish you all light pain if not pain

free days and lots of love.

Nicole C. "The world is a dangerous place. Not because of the people
who are evil; but because of the people who don't do anything about
it." - Albert Einstein