Getting Active

Today I rode a bike. I haven't pedaled myself on a bike since I was 12.

I didn't realize how sedimentary I had become. I've missed out on so
much like bike riding, walking, playing games, just living!

I sat back and relized what all I accomplished today and it literally
makes me giddy!!!

Today I went to walmart with both kids. Shopped for some odd and end
things...went to the post office...realized we lost justins shoe had
to return to walmart and retrieve it...then I walked a mile with my
sister in law and mother in law...went to a birthday party for
toddlers bymyself with both kids...came back to my mother in laws and
built an entire village un the sand with my niece and
daughter.....then played an hour and a half if bad mitton with the
family....then rode an actual bike two miles...and topped the night
off with a four wheeler run.

Today is a huge achievement for me. Since this parkinson medication I
don't have this horrible dull ached in my extremeties and I've found a
muscle relaxed that is actually working fir me anim sleeping...its
amazing what sleep can do for your motivation.

What really got me was when I arrived home thus evening...I didn't
collapse into a balling squalling heap of exhaustion and despair. I
felt ok. I obviously was pretty tender jointed and my legs are very
soar tonight but the point is I lived today! I wasn't on the sidelines
today I was playing...and that just made my whole year.

View From the Top

Lupus is an Up Hill Battle....

As a Lupus Fighter You never Know What to Expect...

Somdays Its all we Can Do to See the Middle ......

Before we start sliding to the bottom again....

We Keep our sights at the top of the Hill ...
Even if we Don't know what is Beyond the Top......

A few of us Fighters are lucky to reach the top....

I Hear the View is pretty amazing.....


But Still....The presence of Lupus is always there.....Even after you reach the top




Lupus Lingers like a Dark Cloud....waiting....

to make you scurry back down to the bottom.....

Hope Guids us like a beacon

It keeps us going...Keeps us Fighting....It keeps the
Hope Alive....
That One day....

We will live on top of the Hill with not a cloud in sight.......

Exhastion

I've been so exhausted lately I can't even keep a straight thought.
Im up now due to RA pain from lousy weather.

Here lately I've been going to bed as soon as I put the kids down...my
head barely hits the pillow before im out cold. Once im asleep poor
jeremy can't even wake me up. The kids wake me up before seven
everday. And the past week we haven't had a single nap.

Naps are vital to a lupus fighter. If I get behind on naps its like I
physically and mentally can't function. I get spacey. Forget the
simplest things. For example u got the kids milk yesterday I tried to
put the sippy cup lid on the milk jug and got bad because it wasn't
fitting....and then I felt like a moron. Sometimes even carrying on a
conversation can be hard.

Not to mention getting behind on sleep...seems to ease me into a
flare. Im hoping this weekend ill get caught up before its to late.

Its funny the sleep patterns us lupies have. One week we may be up
until 4 am the next week we can barely make 7pm.

Well its 530am now....im hoping some of this joint pain will ease so I
can at least get a couple of hours of sleep before my kiddos are wide
awake... o_O. to bad caffine causes flare ups grrness.

Addiction....

---------- Forwarded message ----------
From: Alisa Green
Date: Saturday, June 11, 2011
Subject: Addiction....
To: "celtic_anubis7.alisa@blogger.com"

Well my week has officially ended with my new medications.

Things I've noticed

I have a very addictive personality.  I tend to become addicted to
things very easily and with this personality trait I tend to be more
aggressive more passionate and can easily be triggered with anger.

My doctor warned me about sudden and onset anger while taking the
dopamine medication.  I've noticed the smallest thing can set me off.
Very quickley and the rage spews through every tendon in my body
almost making me shake.  luckily I don't turn green and smash things
though I would like too.

So to keep me calm she has increased my prozac.  As of yesterday which
as we know takes a while to process through our bodies.

I've noticed the feeling of anger even in my dreams.  My grandfather
who actually has parkinsons who was taking the same medication I am.
We talked about his side affects and he said anger nightmares and
shaking made him quit.

Im torn because I don't like having all these angry feelings inside
but the medication is really working.  Two months ago I could barely
walk a block without cringing in pain. Now im walkun a mile and a half
like it ain't no thing.

Im really hoping my prozac will kick in and help if not I don't think
ill be able to take the medication.

This weekend my joints are still stiff but there isn't the pain of the
throbbing pressure...

I guess I nay have to disconnect my fb for a while and meditate more
in my walks.  Perhaps that will calm things and ill be able to cope
with this medication.

Always Starting Over

I believe this is something else that is incredibly hard about dealing
with lupus. Each month after a flare I have to literally start my
progress over again.

My symptoms of lupus start to flare a week before my monthly period.
Lupus puts ne in bed the day I start. Once I've started my flare
ends. But the recovery time does not. It usually takes me a week
after a flare to recover sometimes nearly two weeks.

If I had been walking 2 miles a day before a flare then when a flare
hits I can barely walk until the flare ends. Once it ends and I have
to recover which means lots of rest. Once i feel good again I have to
start all over again walking...taking it easy so I don't lapse into
another self induced flare.

Its very frustrating and can get discouraging. That is why im looking
for a treatment that will work for me. Finding the right combination
of medications is another bad part about having a disease no one knows
much about. When I find the right combinations of medications I will
have more and more good days. I wont have to restart my life every
month. And maybe one day I wont ever have to start over ever again
unless it was on MY terms.

Oh Snap!

My doctor put me on two new meds at my last visit.

Xanaflex to help me stay asleep.
Pramipexole to help with the never ending pain in my legs. Its a
medication that is actually used in parkinsons patients.

I've been taking the pramipexole for almost a week.... and Ohhh
Snnnap! Am I ever haing some lucid dreams! They are pretty intense.
It is listed as a side affect. Luckily im just dreaming of stress and
not something scary or I don't think I could tolorate the medication.
I have noticed the medicine makes me pretty shakey...which is ironic.

Im going to take it a few more weeks to see if I notice anything good from it.

When I lay down I have to constantly flex the muscles in my legs in
order to find any relief from the throbbing pain. Most people who
have an autoimmune disease have what's called restless leg syndrome.
Symptoms of Rls occur when your body is relaxing. Its
excruciating...pain. another reason for my RLS is due to the fact I
have un explained anemia. My iron is lower then 30%..such triggers
RSL.

I did notice last night after I walked 1.5 miles I didnt have pain the
moment I laid down. I was able to lay still for about 15 mind until
the pain hit and the restless tossing and flexing. Maybe it's
working. Only time will tell. I got this.