so true.....

I awakened this morning to find this gift in my front garden circle
then opened my Word for the Day and found this waiting.....

www.gratefulness.org

WORD FOR THE DAY
Friday, Aug. 29
Don't be content with looking at a rose as beautiful flower. Look at her with Love, so that she enters into your heart and awakens other forces in your heart and soul.

NIGHTLIGHT

ever since my breast cancer surgery, i have been on lots of different medications - some for the whole time, some intermittently, some for a period of time, some forever...
not sure which ones, but one or more has been causing quite disturbing dreams which wake me up almost nightly
i have never been one to remember dreams , yet these scary ones seem to hang on for a few hours or even days.....
last nite i had a particularly scary one where i was trapped in my bed between 2 men who were threatening me harm and i couldn't reach the phone to dial 911.... i struggled for a while and when i did reach the phone - it wouldn't dial.... i was terrified and the fear woke me up....
i had left my shade up because of the heat and as i awakened i saw this most incredible NIGHTLIGHT provided by the full moon -
SO awesome i had to get up and find my camera.....
stark naked i ventured into the backyard and of course not able to capture the full moon - i caught this glorious vision of light in the night sky....
it was exciting and beautiful and lulled me back to a peaceful sleep......
i wish for everyone in your darkness such a display of light.....
and hope that i will have many more escapes from ugly dreams like this incredible sight.....

catching up

i am back at the keyboard tired, grouchy and overwhelmed at many levels after a 10 day trip to MA to visit my family.....
it was a great time being with them and i miss them a lot....however the humidity and heat wave did me in .... the medication i'm on causes horrific hot flashes through out the day and they were multiplied back east....
i truly need a vacation to recover - i spent far too much time driving..... didn't take the time to just hang out at the beach or anywhere for that matter.....
visiting family members, high school and college friends took up most of the time.....
i had a few trials of being lost and my phone out of service but managed to find my way "back home"
i almost succumbed to the notion of a GPS based on the lost experiences..... they do have a place , i guess......
flying did cause more swelling of the lymphedema but mostly it maintained itself - thankfully.....
i do now have some ugly blisters as the fluids are quite backed up.... the hope is to keep them as blisters - not break them which can lead to ugly infections.....
the plane trip back to s.j. was its own nightmare which i will write about next time.... my fatigue level is still pretty high right now and all i want to do is sleep......
traveling while doing lots of drugs and not being strong and able as i once was is quite an undertaking....
but i am here, safe and blessed to have a home to come back to......
more soon.....

www.gratefulness.org
WORD FOR THE DAY
Saturday, Jul. 12

There are moments when I feel like giving up or giving in, but I soon rally again and do my duty as I see it: to keep the spark of life inside me ablaze.

Etty Hillesum

An Interrupted Life

ROUGH DAYS

i sit here - 2 fans going and still dripping hair and clothes....
i have been away from the computer for a few days as the heat is so unbearable that it actually hurts to just sit here and try to type...
the sleeve garment is out of the question for these past few eays. as it gets soaking wet very quickly
i'm sure the swelling is worse
the physical therapsit says it isn't but it feels that way in the heat....
the drugs i take to prevent cancer recurrence cause awful hot flashes
the prednizone for PMR (remember that ??!) causes hot flashes and the weather only adds to them...
much of everything else is the same except for an increase in pain medication to try and keep the pain at bay....it still is there but the edge is a little less....
a new dog hwleing next door after having a very quiet neighbor for 20 years has my nerves even more on edge than ususal......
on top of that the refrigerator and freezer quit in the midst of the heat yesterday - repairs to the defrost mechanism fixed it but cleaning out spoiled food and now today faced with lots of sticky towels, sticky shelves and a really sticky floor is adding to my frustration level....
the doctor is playing with a day on - a day off with the prednisone and i can feel my body going nuts with the change....
so to put it all together
whine, whine, whine......
all is can say is i have a right to whining....
i want my life back....and today it isn't in sight....

The Summer Day
by Mary Oliver

Who made the world?
Who made the swan, and the black bear?
Who made the grasshopper?
This grasshopper, I mean—
the one who has flung herself out of the grass,
the one who is eating sugar out of my hand,
who is moving her jaws back and forth instead of up and down—
who is gazing around with her enormous and complicated eyes.
Now she lifts her pale forearms and thoroughly washes her face.
Now she snaps her wings open, and floats away.
I don't know exactly what a prayer is.
I do know how to pay attention, how to fall down
into the grass, how to kneel down in the grass,
how to be idle and blessed, how to stroll through the fields,
which is what I have been doing all day.
Tell me, what else should I have done?
Doesn't everything die at last, and too soon?
Tell me, what is it you plan to do
with your one wild and precious life?

a scary pain

my "new' sleeve which is tighter and has a compression pad on the palm of my hand has a strong piece of thread - carpet type - on the seam between my thumb and forefinger....
it has been rubbing, chafing and hurting on that space....
i did not know there was a nerve right there and fri and sat i had horrendous pain shooting up my arm and it scared me....
i finally remembered my friend who also wears a garment - different than mine - but she had to get it adjusted as the nerve pain was caused by the area between thumb and finger was too tight....
i took off the new garment - put the old one back on and told my physical therapist about it yesterday.....
she took the new one to fix the seam so it won't cut or hurt...
i'm already worried as there is the beginning of a blister there and there is supposed to be no cuts, scratches, etc on this hand or arm......
I keep reading more lymphedema pages to learn more and more but they are pretty depressing with all the warnings and "rules" i did find a really good site for lots of answers about the condition.....
mostly everywhere says the occurence is low percentage and i had to fall in that low % range, that it is an ugly diagnosis... and there are lots of do's and dont's
if you want to know more here is a really informative place to go....and here is another really good site
i try my best to stay positive but the heat and this garment does me in physically and emotionally and people asking all the time about the garment brings up the discussion and reality of breast cancer......even tho i am cancer-free - it is very difficult to talk about....

Quote for today

Milk-toast-ness is a sin. Neutrality in the heat of injustice is a sin. Passionlessness is a sin, a misuse of our love-energy.

Matthew Fox in Sins of the Spirit, Blessings of the Flesh

Happy Summer Solstice!

This picture is from one of my favorite websites
called HERONDANCE...................
they send out a beautiful free newsletter with art, poetry and reflections on our relationship with nature.
........they have prints, cards and books which make beautiful gifts. I know you will enjoy a visit to their site......
I sure would like a cooler solstice to celebrate as the thick, heavy compression sleeve is a nightmare to be wearing.... it is soaking wet with sweat inside and out.....i've had to take it off a few times today to let it dry out.....
and of course the heat doesn't help the swelling.....

Summer is the time when one sheds one’s tensions with one’s clothes,
and the right kind of day is jeweled balm for the battered spirit.
A few of those days and you can become drunk with the belief that all’s right with the world.
~Ada Louise Huxtable

meltdown

wed and today i had meltdowns at the physical therapy session.....
wed. -my therapist decided i ought to be wearing a stockinette sleeve underneath the huge garment to help absorb perspiration so my skin won't "breakdown" which is one of the dangers of lymphedema - just what i need is another layer in this heat....
today - the sleeve maker came by with a new design - tighter and higher up to my shoulder to provide more compression....i really had to struggle to get it on and was cursing and crying at him and the garment.... he means well but tries to cheer me up and keeps saying"come on, let's see that lovely smile....." even being a pacifist - i want to smash him with the garment
the heat makes all of this even more unbearable....
i am real crabby today.........good thing there is no one here to crab at.....
heaven hlep the comcast technician due here momentarily to see what is wrong.......
i am just about sure my TV has died ..... it's very old and its time is probably up.....
i'm in no mood to hear that the tv is gone.....

Heartsick again

June 30, 1981 NOW sponsors ERA Countdown Rallies in over 180 cities to draw attention to the ERA deadline of June 30, 1982, and to dramatize the wide support for the ERA.
Tim, Chris and I were in Boston and attended a rally there.........(I still have the t-shirt which now wouldn't even fit my right ankle....!!!!! )
then.................a year later........it was defeated.....as it has been over and over.....
I remember well that day when i heard the news and i cried.... my heart was sick.....
that same horrible feeling has been clinging these last few days as the news of Hillary's campaign suspension becomes real........

“ Section 1. Equality of rights under the law shall not be denied or abridged by the United States or by any State on account of sex.
Section 2. The Congress shall have the power to enforce, by appropriate legislation, the provisions of this article.
Section 3. This amendment shall take effect two years after the date of ratification."

heart and body ache

My body continues to be in pain all of the time - nights are the worst....
add to that the pain in my heart for Hillary and for the dream shattered of seeing someome who looked like me in the oval office....
I am very sad today as she said goodbye to her campaign and only wish the following can ease my pain.....
"Although we weren't able to shatter this highest, hardest glass ceiling this time, thanks to you, it's got about 18 million cracks in it, and the light is shining through like never before," she said.
I believe that this picture shows some sadness that she of course cannot afford to show now or ever.....
today is a day for tears........

Family Volleyball

Liam is getting real good at writing and likes to practice with notes....so sunday while the "grownups" were eating he composed this invitation for us....

(if you can't read the yellow it says volleyball game)

ben and ronan were wrapped up in a dvd of the backyardigans so note the invitation involves "one kid"...
turns out the volleyball game became much more interesting than tv to the little ones so after a few minutes of just the "1 kid" it turned into a full blown family adventure.....
i even played a few minutes with 1 arm and hit a few really good shots....

More on Lymphedema

today during treatment with my physical therapist who does MLD* on my arm and breast, she worked a little on my upper arm which is somewhat fibrotic and is really painful.... sometimes the pain is my upper arm is excrutiating and she told me today that fibrotic pain on a scale of 1 to 10 is a 12 !!! so at least i know i'm not crazy !!!!!
one more day...............the mountain to climb is still here.....

*( Manual Lymphatic Drainage - a unique, therapeutic method of stimulating the movement of fluids in the tissues. The gentle, rhythmic, pumping, massage movements follow the direction of lymph flow and produce rapid results. It assists the cutaneous lymphatics in picking up and removing not just fluids, but all the waste products, protein particles and debris from our system. It also is successful in breaking fibrosis and fibrotic areas of a lymphodemous limb.)

DANCE

one of my favorite tv shows - SO YOU THINK YOU CAN DANCE began again this past thursday nite...it's only audition time, but i love it anyway
in the weeks to come you will see so many kinds of dance and be in awe of what the human body can do. hope you will watch it..... FOX (not FOX NEWS) network thursday nites...
my favorite judge is mia michaels - an extraordinary choreographer and she's not size 2 !!!!!!!
.... i found these words she used in a magazine article and i thought them worth sharing.......

Why do we dance? Why does our body want to move and pulse with every rise and fall of the music that invades our ears? Are we a product of a the thousand and one classes and a lifetime of training, or is dance a purely instinctual and primal experience that happens internally only when we allow it? I would only hope that both reasons intertwined with respect and nurturing are the answer. Or is it a gift that's given by a much higher power than ourselves? That would be beautiful.

Allowing movement to come through us in the form of pure energy and onto a highly trained yet raw instrument is what defines the ultimate dancer. One that knows how to pull from technique and also when to leave technique alone and head straight to the heart of the matter. One that knows how to pull from the rawness and humanness that would drip from their own personal journey through this world and allows the real movement to come from the inside out.That is beautiful.
It is so easy to hide behind steps It's much deeper than that. Our goal should not just be to perfect what a choreographer gives us but also to allow our own unique voice as a dancer artist to come through and marry to the energy of the choreographer. That is beautiful.

Then again, let's think about some of the most simple and beautiful images of dance. A young child is jumping freely to music, laughing and giggling with such purity and with no fear of judgment. An older couple, fragile yet safe in each others arms, slowly try to keep up with their favorite song from a time earlier in their lives as they reminisce through all the years with each step. That is beautiful.

If everyone danced from their heart and purity of spirit, using free movement as a daily practice and meditation, there would be no more wars. I believe every breathing thing has been given the gift of dance and movement. So let go, take that deep breath and dance! That is beautiful!

Mia Michaels

WORD FOR THE DAY

Not knowing when the dawn will come, I open every door.

Emily Dickinson


www.gratefulness.org

Saturday, May. 24

one more challenge

so here's the newest !@#$%^&* garment that i'm supposed to wear every day over my breast and under a camisole so that the breast fluid will subside.... just like the sleeve, it's very heavy and hot as is wearing the camisole which doesn't give my midriff any air.....
the pain from my broken shoulder has flared up probably because the physical therapy treatment switched over to lymphedema treatment... of course it's the same arm as the lymphedema so it's a real trauma for me to be so swollen and in a lot of pain.....
some days it's pretty overwhelming.....sunday ben was here to play in the water and Liam came to stay overnite as he had no school monday - so i got my fix of joy being with little boys and putting the pain aside for a while....

TMI

this may be too much information for some of you but writing about it helps me to process what has become a nightmarish aftermath of the breast cancer....
yes, the cancer is gone - yes i'm alive and for this i am grateful....
that however does not diminish the current discomfort....
the lymphedema has gotten worse and is causing such discomfort, now more pain and the need for finding ways to adjust to not being able to wear certain clothes....
it has spread pretty badly to my breast and underarm and so i am unable to wear any of my bras which affects the clothes i can wear....
i saw my breast surgeon today who checked for any infection- there is none - she just says it is so full of fluid that it looks infected - besides the swelling it is very hot and red and ugly...i'm not worried about the ugly
as i'm the only one who sees it - :-( and i will spare you all a picture :-)
but the swelling and pain is something else
they are talking about some new fangled garment for the breast that will provide compression and move the fluid and i need to start a newer MLD (manual lymphatic drainage) therapy with the physical therapist 3x weekly and then every day at home myself.....
the hot weather and the horrible sleeve i'm supposed to have on 23 hours a day are not compatible.. as it gets soaking wet from perspiration and that can cause bacteria to grow inside of it !!!!
this is a very discouraging path..... pain and fluid and now more pain and fluid..... on top of the pain cause by the medication that is necessary for 5 years....
i try hard to forget about it but only having the use of 1 arm is a pretty strong reminder
and this 101 degree weather is not helping at all.....!

HAPPY BIRTHDAY TO ME !!!!!

I am so gratefull to be alive and celebrating with family and friends....
my life is filled with blessings (not including the arm sleeve !!!!!)
and i plan on many more years to celebrate......
i've picked 105 as a good number ....!!!!!!
THANK YOU for all your special wishes and good thoughts!

!@#$%^&*()_++_)(*&^%$#@! SLEEVE

my custom made sleeve has arrived and with it a new set of challenges and untold stress. it's uncomfortable, hot , clumsy, heavy, in the way and something i may have to contend with forever....
hopefully if i wear it the prescribed 23 0f 24 hours daily for a while the swelling may get under control and then the lightweight spandex type sleeve and glove will suffice during the day and this monstrosity will only be necessary at night.....
if i don't wear this, the lymphedema could get much worse and some people even lose the use of the affected limb.... i can't afford that !!!!! so am trying my damndest to get used to this.....
"they" say "why me" isn't a good question to ask but at the moment it's the one i'm asking .....
the use of this arm is quite limited with the sleeve on..... i do take it off to eat - otherwise i would have food all over it..... it is washable but don't want to wear it out before its time......
i don't have the bill yet but am hoping my secondary insurance will pick up part of the $450 !!!!!!! since medicare doesn't think this a cancer treatment !! and won't pay for any of it.....