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....
Thursday, November 20, 2008
Wednesday, November 12, 2008
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......
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......
Sunday, November 09, 2008
Friday, November 07, 2008
I WANT A DAY OFF
no one will much care about this post but felt like venting about it........
today the only stop was the pharmacy for more drugs for a bladder infection....
but each week when i look at my date book, i long for a day without a medical appt of some sort.....a day just for me to do whatever i want.....
here is how it has gone just this past 2 weeks and it's more or less always this way....
2 physical therapy appts for lymphedema drainage massage( this is a weekly regimen)
OBGYN annual physical, pap smear and an order for an ultrasound to be scheduled for followup on fibroids
rheumatologist appt for polymyalgia with order for a bone density to be scheduled
eye exam appt with opthamologist
community breast project counseling appt - weekly
trip to morgan hill for fitting for compression glove and sleeve
6 month check up -mammogram and ultrasound
appt with surgeon to discuss those results ( which were all OK!!)
appt with internist to check on heart murmur found by surgeon and OBGYN
2 trips to hospital lab for blood cultures
and so it goes.......
next week - pretty appt full also - ultrasounds for fibroid followup and one for annual checking for kidney stones AND scheduling a visit to cardiologist to check on the murmur...
most all of these appts mean managing drug dosage so i am a walking pharmacy and am also tired of that..........
THE GOOD NEWS
I have the very best of doctors who are careful, efficient and on top of everything as my body grows older and in need of more attention......
today the only stop was the pharmacy for more drugs for a bladder infection....
but each week when i look at my date book, i long for a day without a medical appt of some sort.....a day just for me to do whatever i want.....
here is how it has gone just this past 2 weeks and it's more or less always this way....
2 physical therapy appts for lymphedema drainage massage( this is a weekly regimen)
OBGYN annual physical, pap smear and an order for an ultrasound to be scheduled for followup on fibroids
rheumatologist appt for polymyalgia with order for a bone density to be scheduled
eye exam appt with opthamologist
community breast project counseling appt - weekly
trip to morgan hill for fitting for compression glove and sleeve
6 month check up -mammogram and ultrasound
appt with surgeon to discuss those results ( which were all OK!!)
appt with internist to check on heart murmur found by surgeon and OBGYN
2 trips to hospital lab for blood cultures
and so it goes.......
next week - pretty appt full also - ultrasounds for fibroid followup and one for annual checking for kidney stones AND scheduling a visit to cardiologist to check on the murmur...
most all of these appts mean managing drug dosage so i am a walking pharmacy and am also tired of that..........
THE GOOD NEWS
I have the very best of doctors who are careful, efficient and on top of everything as my body grows older and in need of more attention......
but i still want a day off!!!!!!!
Wednesday, November 05, 2008
HOORAY BARACK !
Three cousins - sweaty, popsicle-stained, and in various states of undress - watch history in the making -
picture compliments of chris and christa
Tuesday, November 04, 2008
BLESSED BE !
May we celebrate this miracle with hope and peace in our hearts.
May the spirits of the slaves who built the white house rejoice in this amazing grace....
Election day thoughts
From one of my favorite web sites - Abby of the Arts....
No matter who you are voting for today, there is much fear and anxiety in the air. I invite you on this election day to wage peace for a few hours. Instead of sitting anxiously awaiting the final results, let your breath transform the world around you.
This day matters tremendously for our sense of hope and unity as a collective body. I pray that whoever is elected, that those on the margins are seen and responded to, those who are suffering are cared for.
In the meantime, contribute your own act of compassion and peace. Meditate with the poem above, allowing its words to be knit into your bones. Go for a long walk spreading seeds of beauty on every corner. Hold a loved one and press your body close, listening for the heartbeat of love. Sing a song that makes you cry at its tenderness.
Remember that each of these acts matters, truly. Remember that you are the center of peace in the world, each and every one of you.
Wage peace with your breath.
Breathe in firemen and rubble,
breathe out whole buildings and flocks of red wing blackbirds.
Breathe in terrorists
and breathe out sleeping children and freshly mown fields.
Breathe in confusion and breathe out maple trees.
Breathe in the fallen and breathe out lifelong friendships intact.
Wage peace with your listening: hearing sirens, pray loud.
Remember your tools: flower seeds, clothes pins, clean rivers.
Make soup.
Play music, memorize the words for thank you in three languages.
Learn to knit, and make a hat.
Think of chaos as dancing raspberries,
imagine grief
as the outbreath of beauty or the gesture of fish.
Swim for the other side.
Wage peace.
Never has the world seemed so fresh and precious:
Have a cup of tea and rejoice.
Act as if armistice has already arrived.
Celebrate today.
-Judyth Hill
__________________Breathe in firemen and rubble,
breathe out whole buildings and flocks of red wing blackbirds.
Breathe in terrorists
and breathe out sleeping children and freshly mown fields.
Breathe in confusion and breathe out maple trees.
Breathe in the fallen and breathe out lifelong friendships intact.
Wage peace with your listening: hearing sirens, pray loud.
Remember your tools: flower seeds, clothes pins, clean rivers.
Make soup.
Play music, memorize the words for thank you in three languages.
Learn to knit, and make a hat.
Think of chaos as dancing raspberries,
imagine grief
as the outbreath of beauty or the gesture of fish.
Swim for the other side.
Wage peace.
Never has the world seemed so fresh and precious:
Have a cup of tea and rejoice.
Act as if armistice has already arrived.
Celebrate today.
-Judyth Hill
No matter who you are voting for today, there is much fear and anxiety in the air. I invite you on this election day to wage peace for a few hours. Instead of sitting anxiously awaiting the final results, let your breath transform the world around you.
This day matters tremendously for our sense of hope and unity as a collective body. I pray that whoever is elected, that those on the margins are seen and responded to, those who are suffering are cared for.
In the meantime, contribute your own act of compassion and peace. Meditate with the poem above, allowing its words to be knit into your bones. Go for a long walk spreading seeds of beauty on every corner. Hold a loved one and press your body close, listening for the heartbeat of love. Sing a song that makes you cry at its tenderness.
Remember that each of these acts matters, truly. Remember that you are the center of peace in the world, each and every one of you.
Monday, November 03, 2008
Sunday, November 02, 2008
HALLOWEEN
A long day in north country....
first to liam's school parade - where his class did the limbo as part of the festivities
then on to ronan's parade - no costumes allowed but fantastic masks the kids had made.
and then a ride a little south to meet up with ben as gustafer yellowgold -someone everyone needs to know!
the rain didn't stop us and we trick and treated up and down the hill.....
being with little people as they get intothe spirit of pretend and celebrate this ancient ritual brings me so much joy and fills my heart and soul....
the ride and the rain didn't matter at all
first to liam's school parade - where his class did the limbo as part of the festivities
then on to ronan's parade - no costumes allowed but fantastic masks the kids had made.
I got to sit in on circle time which i just loved.......it was a showing of each child's large painting and how and why they created it....
back to the house for getting dressed as the star wars duo
the rain didn't stop us and we trick and treated up and down the hill.....
being with little people as they get intothe spirit of pretend and celebrate this ancient ritual brings me so much joy and fills my heart and soul....
the ride and the rain didn't matter at all
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