!@#$%^&*( ARM BANDAGE

fighting this monstrosity all day
crying and swearing
fingers barely out - goes up to shoulder

lymphedema lament

my hand, arm and breast remain quite swollen and will be for my lifetime....i try to forget about it and pretend it's not so but there it is every day.....one of the hardest parts is not being able to wear jewelry...i have a so many rings and bracelets that i love to wear but it's not allowed with the lymphedema.
i started 2x weeky physical therapy with a new practioner at good samaritan hospital ...my breast surgeon wanted me to change the person i've been working with because they have pumps at the hospital which the other place doesn't have.

after the pump for 30 minutes, i have to have the arm wrapped to maintain the "good" the pump did. ...so my arm is wrapped with foam and bandages and i am to leave the bandages on as long as possible. ..... the heat is atrocious as it doesn't breathe and yesterday it caused such hot flashes that soaked me from head to toe.....i had to take it off after about 2 hours...today i left it on for 4 hours but the hand part got so dirty and wet that i had to take it off.....this is what i had on....

it's very heavy and hot!!!! that foam does not breathe at all......(not sure why this is underlining)
enough lamenting for tonite - i guess i'll watch michael fox's special tonite on being an optimist...i need some optimism and he seems to have so much even with the terrible disease he struggles with......

6 month good news

yesterday was my ongoing 6 month check up for breast cancer and happily i am cancer free........!
the day is a really hard one as it's a lot of waiting for results from the mammogram,, ultrasound and bone scan...
thankfully the place i go has the dr right there so there is no going home and waiting for result....
the check up was 2 hours and my body is really sore today from all the pushing and pulling that has to be done for the tests.....
what they did find is cysts in the breast that had cancer......they are filled with fluid which is a result of the lymphedema.....
the lymphedema is in the upper quadrant where i had radiation and it is very debilitating and depressing.....my hand, arm and breast are very swollen and will be for my lifetime.....
i hate wearing these garments but i must.......and have the heavier bigger one for bedtime which i have posted before............... i also have an insert for one side of my bra which doesn't provide for the best of looks in a lot of my clothes.................but......I AM CANCER FREE !!!!

HOORAY for BEN !!!

Today is World Autism Awareness Day. Become aware......... I celebrate Ben and all those who are on the spectrum......

On December 18, 2007, the United Nations General Assembly adopted resolution 62/139, tabled by the State of Qatar, which declares April 2 as World Autism Awareness Day (WAAD) in perpetuity. Her Highness Sheikha Mozah Bint Nasser Al-Missned, Consort of His Highness Sheikh Hamad Bin Khalifa Al-Thani, the Emir of the State of Qatar, supported the campaign for a World Autism Awareness Day through the current 62nd UN General Assembly Session, garnering consensus support from all United Nations Member States.

This UN resolution is one of only three official disease-specific United Nations Days and will bring the world's attention to autism, a pervasive disorder that affects tens of millions. The World Autism Awareness Day resolution encourages all Member States to take measures to raise awareness about autism throughout society and to encourage early diagnosis and early intervention. It further expresses deep concern at the prevalence and high rate of autism in children in all regions of the world and the consequent developmental challenges.

World Autism Awareness Day shines a bright light on autism as a growing global health crisis. WAAD activities help to increase and develop world knowledge of the autism epidemic and impart information regarding the importance of early diagnosis and early intervention. Additionally, WAAD celebrates the unique talents and skills of persons with autism and is a day when individuals with autism are warmly welcomed and embraced in community events around the globe.

By bringing together autism organizations all around the world, we will give a voice to the millions of individuals worldwide who are undiagnosed, misunderstood and looking for help. Please join us in our effort to inspire compassion, inclusion and hope.
UN World Autism Awareness Day Resolution (.pdf format):
Arabic | Chinese | English | French | Russian | Spanish

Add it to the pile of things that suck !!!
A very long appointment with the eye retina specialist and dozens of pictures with very high tech computerized cameras has found the culprit.....pictures of the retina found a jelly like thing which was supposed to have floated away ...it is attached lightly to the retina - SO they have to go get it !!!!
it's an outpatient surgery but does require anaesthesia and someone digging around in my retina ...here come the fear mongers once again
this is not mandatory - the "thing" can just sit there, but it is in my direct line of vision and very bothersome so i need to get it out....
it's my choice as to when to schedule it so i need to find 5 days with nowhere to go as i won't be able to drive .....
i am so tired of the universe bringing these things that hold me captive...and the old adage that "there is a lesson in everything" just doesn't work for me.....
Meanwhile I'm to start supplements of fishoil, eye vitamins and blueberries which they just discovered improved night vision !! i do love blueberries but they sure are expensive....wish i could grow them, but i hear they are difficult to get going in this part of the country....

spring morning

may spring enchant the new life,
shy and hesitant within me,
and set the rhythm for my sluggish feet
in a dance of holy yearning.

Author unknown

the eyes have it............

for the last few months i have noticed a blurring of vision in one eye and difficulty reading.....since i onoly have my eyess examined 1x yearly and it had only been 5 months - i ignored it for a while.......now it is too aggravating to ignore, so........
another dr visit (I don't have enough) ! turned up somewhat of a mystery...my eyesight has gone from 20/20 to 20/ 80 in just a few months....dr not sure why - medications ??? macula isues , growth of a cataract....?
i do have a cataract which may need removal if that turns out to be the culprit
more tests coming to eliminate and/or explain changes.....
i am a little concerned as my dad had macular degeneration and it is hereditary, so hopefully it's a cataract or drug issue.
the difficulty focusing to read he believes is drug related as he says wearing the pain medication patch that i wear is like being on 2 martini's all the time....
actually it doesn't affect me that way and believe it or not my internist says that my high tolerance for drugs is genetically relate to the alchoholism gene which i carry.....
sooooooo - more tests, more waiting,

the empty house

every morning as i pull up my kitchen blinds i am greeted with the empty house across the street.....
once the site of constant activity with gardening, visits from grandchildren, the dog jumping wildly
to each new sound....
now it stands - empty and silent and a cause for great sadness each morning as i remember days, months and years of activity and love we all shared....
now my memory is one of standing at her bedside as Inger slipped away from all of us knowing our world will never be the same.
I miss you Inger......

vortex

every day i feel more and more like i am being swept into some kind of vortex where there is no escape....
doctor visits, phone calls, test results, conversations.....all to no avail so far.......
the latest is to cut back on the pain drugs and see what happens
-my internist thinks i need to just wait things out
-my rheumatologist says go ahead and have the procedure
-the surgeon's report to my internist recommends waiting it out....
one of the biggest issues is that there is so much damage and pain in ribs and surrounding vertebrae that the procedure will only begin to address the pain
also i am allergic to the antibiotic which they routinely insert in the glue
-surgery has its risks so why do it if i can "tough it out" for a month or more and see what happens.......
i am very confused about what to do..........so far i am in the throes of waiting which has its own psychological pain.
the drugs i am on are strong narcotics and drain my energy and cause me to want to sleep all the time
i am isolated, and depressed about the whole picture-sometimes days go by without the phone ringing or inbox having any messages but spam......
and the vortex has me dizzy and exhausted.............
to repeat
IT SUCKS !

hang in there

basically the message was -hang in there-healing takes time-pain doesn't seem bad enough to "disable" you or keep you immobile-so if you can tough it out surgery may not be the best bet-xray showed -nothing is worse-can't tell if the vertebrae is healing by an x ray but he pounded on the site and i didn't jump or scream
it's very sore
and there are many things i can't do with this side of my body but he says it will eventually heal......how long?he won't give any kind of timetable - it could be weeks - or months - hopefully not years ......
i have so much cell damage and trauma and bruising in my ribs due to prednisone use that produces lots of pain so it would be almost hard to notice the absence of this one area of pain if i have the surgery
sooooooooo it's wait and see again- he wants to check things out in another month
meanwhile i'm wearing a pain patch which makes me pretty exhausted all the time so my muppet sleighs are still on the fireplace and the bathroom has Christmas angels spread about.......
i am so tired of not doing anything and am feeling very isolated and discouraged that life amounts to restingk, resting and more resting.....and i'm not a tv person and have massive allergy problems in my eyes so can't read.....
basically -it sucks !!!

does it matter that I am...........

Publish Post

and the beat goes on

the pain beat that is........
not much change - vertebrae pain is a bit less
foot is really bad
pain management doctor visit uneventful- she wants me to stay on the fentanyl patch and cut back on oral percoset -
she thinks the surgery isn't really necessary if the pain isn't really bad...
will see surgeon again on friday to take another look

HAPPY VALENTINE'S DAY

valentine's day is a good reminder to me that i need to concentrate on self love - not something we were taught or that is encouraged.....
this poem which i've posted before as it's one of my favorites sums it up perfectly....

WILD GEESE

You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert, repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting-
over and over announcing your place
in the family of things.

Mary Oliver

May you find all the ways to love yourself today and always............

does anyone want some more pain?

i meet with the surgeon this fri a.m. to get some more questions answered and then can hopefully make a decision about the fractured vertebrae..... still am on a lot of pain meds but if i don' take them during the day , i can drive short distances to the dr etc........
here is some more news about what the aftermath of prednisone can be for some.......
on sat i awoke with horrific pain in my foot for which i had to wait till mon to see the dr
she did a lab panel thinking it was gout
lab did not diagnose gout...so on to xrays which found heel spurs and a flare up of polymyalgia (remember that ??? it hasn't gone anywhere...)and arthritis
the pain is just awful and i don't need this on top of the vertebrae and other pain......
ice,rest, more pain pills and trying to find relief in a shoe insert.....
i went looking today and found some shoes that have a lot of cushion and are recommended for my "condition" so i bought the on a 30 day money back guarantee
i haven't had a painfree day in months and months and it is taking its toll with fatigue and being really disheartened.......

more stress

my pain meds have me very sleepy and groggy so don't have much energy to write.....
the visit to the orthopedic surgeon yesterday presented basically 2 options....
1
just wait and the fracture will eventually heal on its own -no knowledge of when.....weeks, ?months?
2
a procedure call Kyphoplasty which you can google or read this article.....
the procedure seems simple and non invasive, except that i am terrified of general anesthesia so am real hesitant.
my plan is to ask the surgeon some more questions before making any decision....
the stress of wondering what to do is very debilitating to add to all the other stresses.
i am being weaned off prednisone and can feel the pain of the Polymyalgia quite a bit.....
send energy and strength - i need it......!!!!
blessings to all as i face another mountain to climb with not a lot of energy to do so.......

waiting.....
waiting.......
waiting.........

While we cry ourselves to sleep, gratitude waits patiently to console and reassure us; there is a landscape larger than the one we can see.
Sarah Ban Breathnach

THE WAITING GAME

pain remains the same-
drugs the same-
laxatives are beginning to work
now it's just WAIT for the orthopedic surgeon appt which isn't till wed.....
he will determine what the healing will involve
WAITING sucks and i want the treatments - if there are some-to begin
i want to drive
i want to dance
i want to put christmas away
i want to sort out the surrounding mess
but all i can do is take drugs and WAIT
and it's awful

bits,pieces,breaks

i spent 6 days in the hospital with what they are calling a thorassic compressed fracture of the t6 vertebrae...the purpose of the hospital was pain management which didn't work very well..pain level is still excruciating
no one knows HOW it happened
we do the the WHY.- prednisone is the dirty nasty culprit....and as some of you know i have been on that forPMR for 3.5years.....
bone scans, mri's, ctscans, xrays etc show "massive mess" with tissue tears, trauma disintergration of bone marrow,osteoporosis,etc ALL AS A RESULT OF 3 YEARS ON PREDNISONE(STEROIDS).
any slight move or wrong move could have caused the fracture
right now the name of the game is pain control
i am on a fentanyal patch 24/7 - lidoderm patxhes every other day and oral Percoset every 4hours so am quite loopy
no driving
no lifting
no dancing(the worst)
i am under the care of a pain management specialist, internist and orthopedic surgeon.
much of it is a waiting game
and once again askingfor help and support -(not my strong suit)

WHAT DO I NEED RIGHT NOW

rides to appts when they come up
intermittent food (not a lot)
mostly an email or phone call to stay in touch - these are lonely, long days and some days no one writes or calls....

i did manage to go out to lunch yesterday -a soft booth provided enough stability to eat.
i'm sleeping way t0o0 much-i think it's the drugs
i will try to keep this update (up to date)
it's pretty painful to type ......
thank you for getting this far in reading the ongoing saga
it's hard to keep it short an simple
i will be gad to answer any questions and would love to hear from you
i am missing all of you...............

ode to joy

these have made me smile over and over today and YES - CRY!!!!!!! with immeasurable joy...
i bought these tap shoes for ben's birthday and he immediately took to them and announced 'LADIES AND GENTLEMEN WATCH MY NEW TAP DANCE " and off he went tapping away........
i am so happy i thought of these for a present....

who needs this?

somehow i have developed bursitis in my already compromised (lymphedema and PMR) shoulder and arm which in turn has pulled, strained, sprained the trapezoid muscle in my upper back
the pain is unbearable- and i am at a standstill as far as doing anything......christmas is still up everywhere and there is no way i can put it away presently.
even this typing will cost me in the pain dept.....
the pain medication (Norco) wasn't doing a thing so friday the dr put me on oxiconton!! a real strong narcotic and i ended up calling him to say it wasn't working...he doubled the dose and i still haven't gotten any relief....i must have a strange body as others have told me if they were taking what i'm taking -they'd be flat out. i don't even feel it.......
i've been mostly in bed with ice packs which numb things for a while......
i was scheduled to go on a retreat for the weekend but had to cancel - lost my deposit but there is no way i could have driven to san rafael and then concentrated on the retreat work.....
the dr sent me for an MRI on thurs and i called chris to come with me as i knew i couldn't do it alone. thankfully it was at the end of his work day.
he held my hand for the whole hour.....thank you, thank you, thank you and i did get through it..........
not sure what the outcome will be -i see the dr on thurs -not sure there is anything they can do...
i'm very discouraged and unable to do anything........
who needs this?????? where is end of pain........?

twelfth night

time for it all to be a memory
i love all the beauty of the decorations-yet the 12th night is technically the time to let them go.....
it may take me twelve times 2 or 3 days to get it all put away but i will take it slow......
good bye to all the angels, muppets, ms santa, lights, fairies, dancers, birds on the tree and the greenery everywhere.......

SOUL STORY

how does one describe the soul of a 4 yr old?- one who some theoreticians say cannot relate
how do words tell the real story of a moment ?
how can i share an unbelievable experience i will never forget
I am struggling to find words and there are none at all to tell this story, but i need to share it with the world.......
Ben was here for a sleep over and after a wonderful day and evening and next day, he was getting ready to go home with daddy. "Daddy," he said, "every time i come to nana's her arm is hurting..." just as a matter of fact statement of the reality. Daddy validated that and explained that the hurting was left over from when nana was really sick, lost all her hair and now has this arm issue left over.
Bags were packed and time came for the"adios, te amo" ritual as he got ready to climb into his car seat....sometimes he needs a prompt to kiss and hug nana good bye.....this time unprompted, he came running to me to kiss and hug me and
THEN........ this amazing child reached down and took my lymphedema, swollen arm in his tiny hands and picked it up and kissed it....
then on to the car seat.
i was in complete shock and actually am still reeling from the depth of that simple action straight from the heart of a tiny soul....
i can still feel the kiss-am still in awe that he somehow knew that the limb needed some kind of
attention that came from love.
poets and writers can find words to describe this moment in time-i am left awestruck and tearful at the beauty of this experience and will treasure it for eternity and beyond........

HAPPY NEW YEAR

Positive Resolutions

Instead of making a resolution to change something about yourself, consider reflecting on what you already do well in your life and then commit to deepening that practice. Spend more time with what you love most.

I took these quotes from another blog with hopes that she won't mind my passing them on.....

________________
For last year's words
belong to last year's language
And next year's words
await another voice.
And to make an end
is to make a beginning.

-T.S. Eliot, from "Little Gidding"

_______________

January First (excerpt)

The year's doors open
like those of language
toward the unknown. . .
Tomorrow, we shall have to invent,
once more,
the reality of this world.

-Octavio Paz

The Winter of Listening by David Whyte

Carla who who feels like a friend and from whom i buy a lot of candles-(check out the beautiful WINTER one) has one of my very favorite blogs.-she posted this and i remembered how much i liked it...and all of David Whyte's poems

No one but me by the fire,
my hands burning
red in the palms while
the night wind carries
everything away outside.

All this petty worry
while the great cloak
of the sky grows dark
and intense
round every living thing.

What is precious
inside us does not
care to be known
by the mind
in ways that diminish
its presence.

What we strive for
in perfection
is not what turns us
into the lit angel
we desire,

what disturbs
and then nourishes
has everything
we need.

What we hate
in ourselves
is what we cannot know
in ourselves but
what is true to the pattern
does not need
to be explained.

Inside everyone
is a great shout of joy
waiting to be born.

Even with the summer
so far off
I feel it grown in me
now and ready
to arrive in the world.

All those years
listening to those
who had
nothing to say.

All those years
forgetting
how everything
has its own voice
to make
itself heard.

All those years
forgetting
how easily
you can belong
to everything
simply by listening.

And the slow
difficulty
of remembering
how everything
is born from
an opposite
and miraculous
otherness.
Silence and winter
has led me to that
otherness.

So let this winter
of listening
be enough
for the new life
I must call my own.

David Whyte

with humble gratitude

2 news stories on pbs greeted my morning on the way to an 8 a.m. dental appt-both of which filled me with gratitude and a humble awareness of the blessedness surrounding me.....
50,000 people in New Hampshire will not have power thru christmas......no lights, no way to cook christmas dinner, no heat........ and i have a fit when 1 string of about 1000 lights goes out on my tree..........
82 homeless people who died on the streets of s.f. were remembered in a memorial yesterday-and i feel overwhelmed at the clutter filling my space and home-all this space and all mine........
it is so easy for me to get carried away at this time of year -
i overdue everything from decorating and shopping and then feel guilty... i work hard every day on my addictive personality but it doesn't always work........i did put out only about 1/2 of my ms anna claus and angel collection and the muppet ornaments are not all on the tree......
a very difficult thing for me to do....
my prayer is for all those who lack the blessings that i try to be grateful for each moment
i wish i could be more comfortable with the simple life..........
those in N.H and on the streets everywhere have no choice but to know what that means

contrasts

a play day with ben was sure a study in contrasts........
autumn leaves-cool crisp weather-
leave piles-

bare bottoms

-and bundling up for a trip to christmas in the park.....
and in between
constructing the manger

...
.and sending the polar express on its way......

.
i'll be in bed early tonite !

on the road again

another trip 45 minutes south to the lymphedema clinic for a fitting for a compression piece for my swollen breast. it is the same black padded heavy material sewn in criss cross fashion to move the fluids that are trapped in my breast on the surgery side.
the way they keep explaining it to me is that the the whole quadrant of my body has been affected by radiation and the lymphatic fluids are just plain stuck and backed up forever.
the 2x weekly of MLD (manual lymphatic drainage) with the physical therapist and wearing these damn garments are what tries to keep things at bay and maintain the swelling.
in order to wear the breast piece, i had to get mastectomy bras which has a "pocket" (usually for a prosthesis) in which to insert this compression piece. you can imagine how classy and great thislooks under clothes..... so many things i can't wear without looking like some kind of monster.... i choose to skip the garment for special occasions out.....
some people have fanny packs - i have a booby pack !
the bras are expensive and then the fitting fee on top of that set me back once again.....not covered by any insurance even tho this is definitely treatment.......
so way over $100 later - i 'm on the road again -hopefully to keep my upper quadrant working.....
the road is hard and long and sadly there is no end to this journey.........

pain,pain,pain

today is an extremely bad pain day - arm legs, feet, back, neck.....
as always not sure if it's the polymyalgia or what......
i've been off the medication that supposedly causes such bad pain for a month now.....
tamoxifan is not supposed to be pain producing -so not sure the cause
all i know is i hurt all over and am moving very slowly and wanting it all to go away.....
the lymphedema arm is the worst - not sure if that is the cause or if i've done something to hurt the arm and shoulder....
it is true that the broken shoulder never healed completely....
am noticing some neuropathy(numbness) in my feet so have to extra careful applying the brakes....
this is a common side effect of radiation....

and.........

and add to that the frustration and hardship of the lymphedema garments and my OBGYN not being covered by insurance and the stress increases.
My OBGYN opted out of all insurance programs because of the nightmare of it all so her visits are out of pocket - $250 for an annual and then i have follow ups scheduled which won't be as much but still budget scrunch....
THEN......
the lymphedema sleeves and gloves are outrageously expensive...the night time big black one which you have all seen was $500 - the newer daytime glove $159 and sleeve $89...
add to that an oversleeve which i need to order for the nigh one....... the compression isn't enough as the swelling has gone done a few millimeters....this will keep happening so the cost is ongoing.....
plus these garments from daily wear need to be replaced ever so often !!!!!!!
then there's the breast issue - ( i know ! too much info ) i need to wear a compression piece over the breast so one had to be made and then mastectomy bras which have pockets purchased so that the piece can slide in to wear all day.....all previous bras are sitting forever ina drawer unuseable probably for life..... what to do with them ????? some are still in good condition and expensive...!!!!!
The nurse in morgan hill who fits me for all this- always submits the bills to medicare to nudge them but they are always returned.....
so it's just one more stress to deal with.....
thankfully i am cancer free..........but it still is upsetting when people think that it is all over.......
medication by the fistful and these expenses make life less than joyous some days......

and i forgot to mention the 2 dentist appts. for adjustments to bridge and some kind of really sore mouth - probably drug induced.......