grief.

18 days ago my brother bob died.

it was 18 days from diagnosis to death.  it was 18 days of fear, pain and sadness.  there were brief moments of hope, and frequent moments of despair.

in the very beginning the doctor's were optimistic that they could shrink the amount of cancer in his body.  but it quickly became apparent after his first chemo treatment that something more was wrong.   he steadily went downhill and on sunday he was brought the the hospital.  they did a ct scan and had to tell him that the cancer had exploded inside his body and was everywhere.

just like when  my mother got the same diagnosis, my brother handled the news and the outcome with amazing grace and strength.  he was sad, he was emotional, but he accepted his fate.  he had faith, and he was calm.

i, on the other hand, have not handled anything well. on monday i was able to remain strong in front of him, spending the short amount of time i had sitting by his bedside while he slept, telling him i loved him.  he was lucid enough at that time to respond... our family grouped together, as small as it is.  bob's ex-wife was a rock, handling everything she could since she was only one mile away from him.  she stepped up and i will never forget, or be able to thank her enough.

his two daughters.  the oldest, 21, literally 3 days away from her due date with his first grandchild.  and the youngest, 12.  my angelina... autistic and having a hard time understanding what happened to her papa, and my other brother.

i'm having a hard time understanding that also.

i've written out the basic details.  i'm grieving so incredibly hard that i'm having trouble coping with my feelings.  there are other things going on in my life right now that are hard, and emotional and i'm not reacting the way i would normally react.  i recognize this as grief and i'm trying to give myself a huge break... but i'm failing miserably.

i'm apologizing to people left and right.  everyone has been incredibly understanding.  jeff has been a rock - with everything that's going on around us right now it's comforting to have him right there by my side, supporting me and loving me.

but there's a huge looming issue that has upset me to no end... and since i know my anger is somewhat misplaced these days, i'm hanging tight before exploding.

that issue is hunterdon medical center.  i know this same issue is countrywide.  but it just got real personal.

i am not faulting his nursing care.  i wasn't in his room long enough to know what that was like. i pray he was comfortable.

here's what i know.

1) he was brought into ER on sunday evening. told there was no hope.   i could see with my own two eyes how serious his condition was on monday.  no movement.  no ability to lift his head.  dozing on and off.  hospice had been called in.  i remember from my mother's death what end of life looked like, and this is what it looked like.  i knew he didn't have weeks.  i figured 2-3 days at the most.

2) by the time i was able to get to the hospital on monday, it was close to 10:00am.  and we were already made aware that different teams were going to be meeting with us during the day to discuss 'everything'.

3) i was able to see early on that none of the teams worked 'together'.  there was no communication between them.  nobody was able to give us a straight answer other than to push us off to the next 'team'.  and when the perky little dietitian wanted to discuss his meal choices even though he was clearly past 'eating' i almost lost it.  more on this later.

4) we were advised by someone, and i forget who now (there were so many) that we had to find a place for my brother to go immediately.  that he wasn't sick and needing hospital care, he was dying and needed hospice care.  but that hospice care was not going to happen in the hospital because medicare won't pay them his room and board.

who do we call? we asked... oh, there's a few places in the area that hospice works with you need to all go start calling places, we'll give you names you can google them.

i'm sorry, what?  you're really going to make us move him in the condition he's in?

yes.

after i burst out crying, they went on to advise us that medicare won't cover the room and board anywhere we bring him, we need to pay out of pocket, and it will be no less than $10,000 deposit to bring him in, oh, and then there's the transport charges on top of that.  but you can try to get medicaid and see if they'll accept him.  medicaid will pay for it.

5) i call the first number on the list and sure enough they have a bed for him and it's $350 per day and you'll need to pay 30 days up front.  not willing to discuss possible medicaid coverage if it's not already in effect.

6) then the palliative care team - with their leaflets and pamphlets and lists of numbers and organizations and sickly corporate smiles.

more numbers to call more people to ask what to do next....

now.

ask me where we all were for the last hours of my brother's life?

in meetings with these people because they had to guarantee medicare would cover their charges.

for a man who was at the immediate end of his life.   and i know that people can surprise you and last for weeks like this - trust me on this one.  i knew.

i spent more hours in meetings than i did at my brother's bedside.

and you know what?  that's a fucking sin.  that's a sin against humanity...

oh wait... there is no humanity there.  none.  it was all about the money from start to finish.

that hospital was going to make us move my brother to a gurney, leave the hospital and take him in an ambulance to a nursing home, get him situated there, and hope someone would take care of him.

a man that had hours to live.  they didn't care.  they don't consider end of life to be a reason to be in the hospital.

ok, well then have a fucking hospice in place IN that same hospital.  don't put the patient OR the family through what we went through... and i'm sure we're not the only ones.

and if that's not possible, have one team with clear concise answers with the steps we needed to take at what times.  not a mish mosh of people in suits with papers and pamphlets.  taking us away from what would be the last hours i would ever be able to hear my brother's voice, or look into his eyes.  

oh, and i forgot #7) when his 9 month pregnant 21 year old daughter in a fit of despair walks 5 miles to the hospital at 3:00am to sit by her father's side and had been told earlier in the day that she could visit 24/7, she was turned away at the door by the guard.  got so worked up she thought she went into labor and they had to rush her over to the ER to be checked out.  (when we told the funeral home director this his eyes bugged out and he was appalled)

i know this is occurring all over the country.  the way we are treated at end of life is damaged... and that's just inhumane.  i kept asking myself and others 'what if a person has no one?' end of life is ascary enough without worrying about your loved ones having to go through what we did.

the system is wrong.  so wrong... end of life should not be this hard.... it's hard enough.

dangly things...

i'm not even sure what happened but i found myself stringing a blingy dangly thing out of the 'meh' collection of beads on hand... and then hitting michaels for over $100 worth of beads...

hey they were 50% off.  totally justified.

you can find them for sale at scranberry coop - in the artisan room.

click here to read about scranberry coop

i'm also doing a handful of them as a donation to mel at wnti.org internet radio as a fundraising item.

every so often i need a short break from birdhoming, or i'm waiting for paint/glue to dry... and i sit on the couch (not warm enough yet for magic patio) and bead...

except nobody warned me about the cat being very, VERY interested in said beads.

thanks a whole lot.

brave.

brave is a big word in my life.  so when i was commissioned to do this home, i knew from personal knowledge that it needed to be infused with 'brave'...

and when i tell you this home flew together like magick... it practically made itself.  each object on here was placed with intention - and every object told ME it needed to be on there.   this doesn't happen with every object on every home, but when it flows through an entire home all at once, i know i've tapped into some amazing vibration... some beautiful frequency...

if you would like to have your own one of a kind infused with soul birdhome, click me

my commissioner had only two requests - the color and 'rustic'.

this is brave:

broach motel

self explanatory...

ouch. just.plain.ouch.

very few people are aware of the problem i have with my hands.  i have developed chronic, sometimes severe, hand pain.  i don't talk about it on social media, except brief references. i dislike complaining about aches and pains.   

it's hard to pin point when it got too much  to bear, but it sent me to the urgent care over the summer because they ached so badly i couldn't stop the tears.

the pain originates in the very base of the thumb, down near the wrist.

arthritis, i figured.  i have vivid memories of my mother complaining about her "arthritic thumbs".

ibuprofen would sometimes help, but i hate taking medication.  i tried all the herbal things, (except turmeric, which is next) copper gloves, copper bracelets, copper rings, braces, heat, ice, arnica topical, arnica homeopathic meds... next up - accupuncture.

i saw an infectious disease specialist in september to rule out a tick borne disease.  all that was negative, and the doctor said "i think it's tendonitis, i don't see any evidence of arthritis in your hands except your right forefinger" (which i knew, it's an ugly bent finger that i swear at almost daily).  he advised me to see an orthopedic to rule out other things...

so then life got hectic to say the least and my hands calmed down a bit, enough to make me lax.  until it got so painful again that i couldn't take it.  last tuesday i saw the orthopedist hand specialist.  he took xrays.

and even i could see the arthritis... osteoarthritis - the base of each thumb the worst.  he shook his head and said "it's bone on bone.  both hands.  it's riddled with bone spurs.  both hands."

medication.
no.
why not?
first of all i won't take a narcotic - they make me puke.  all of them.
and b - even ibuprofen or aleve is bad for me.  they play with my liver numbers, apparently i'm sensitive - all those lovely years of alcohol, i'm sure.

brace?
no. tried it.

copper?
nope.  tried it.

well - how about a particularly nasty surgery where i clean it all out and cut a piece of bone off and we take a tendon from your forearm and put it in your thumb so that it doesn't collapse and be shorter.

oh my.

well, i can inject each joint with cortisone.  you can have one shot every three months if needed, but this should help at least a little.
bring it on doc.

i've had a cortisone shot before.  in my shoulder many years ago after a chair-exiting incident.

and then hell arrived in the form of 2 needles, 2 bandaids and some alcohol wipes.

i won't go into gory detail, but if there's one joint you never want injected with cortisone, it's that one.  and lucky me, i got to have each one done!

i drove back to work in tears.  i allowed myself a little pity party.  i was so disappointed in my diagnosis because i had an expectation.  i expected him to say 'tendonitis'.  and words like 'massage' 'physical therapy' and 'will feel better'.

instead i got the opposite.  and that's where the pity party came in.  i allowed those tears for just a short moment and had a couple of brief moments later on when i told my coworkers and then jeff.  and then i dusted off my brave girl thongs and thought about handling life changers with grace instead of self pity.

self pity was only going to dig me deeper into a dark pit.  my mind was already trying to figure out how i was going to live with this level of pain on a daily basis.  plus it affects my art - my hands are my livelihood.

i remembered how my mother handled me telling her that her cancer wasn't responding and that time was short.  she put her head down for a moment.  i swear, less than 5 seconds.  and then raised her head, looked me in the eye with clear eyes of her own, and said "well then we'd better get this place packed up!"

i never saw her shed one tear after that.  if she had meltdowns, she did them on her own - not that we wanted her to do that - trust me.  but she refused to do that.  and i respected her for that - she just set out to enjoy as much of life as she could in the time remaining - whether it was a trip to the pizza parlor or asking me to paint smiley faces on her toenails so she could smile when she looked at them.

and i should feel sorry for myself? pfffttt.  people have it much worse than me.  i lead a mystical, magical, loved filled life.  unfortunately, pain is a part of it.

the good news is that so far, one week later after shots, my hand pain is reduced by about 75%, with cautionary twinges rather than constant aching.  for this relief alone i am grateful.

i actually started this blog post not to go into such detail about my issues, but to show you all the cool stuff i had to get to be able to do my assemblage art without killing myself with hand pain.  the chop saw, the scroll saw and the belt sander are all craft size - they're small and PERFECT.

hand tools do me the worst harm, so i had to reduce the amount of that...

my only worry, and probably the worry of most of the free world, is that i'm extraordinarily clumsy and accident prone and now i have power tools to help me along.

FREE.

did that get your attention?



free.  30 days free.  brave girls university.  put my name - sanditygar - no spaces in the coupon code area - and you'll receive 30 free days to roam around, take classes, see what it's all about.   click and have some fun... brave girls university - click here!!