2013 can't end soon enough

I can't remember a worse year in my life...

the year started with my dad's death
followed by my cousin's death -- then four more (distant) family member deaths

my husband's car was hit three times (none his fault) no one injured...

on Labor Day, I fell down my front steps, shattered my wrist and required surgery

this past weekend, just as I finished physical therapy for my wrist, I fell again
this time my back steps
this time I broke my ankle and worse dislocated my ankle, requiring surgery again!!!

Arghhh!

Next year just has to be better!

Another Funeral!

This is the worst year ever for losing people in my life!
Today it was the funeral for the mother in law of one of my cousins
(If you haven't figured it out, I have lots of cousins -- and I like them all!)
She was 99 years old - and she had a good life
In any other year I would celebrate her life
But this year -- well, I'm just so sad!!!

My father, my cousin, Tom's uncle, my childhood friend's mom, this relative ......

Its just too much and I'm not dealing with it well.

My wrist is healing well and we have had great weather

but really, I just want 2013 to be over.....

hopefully, 2014 will be better!

Same Old Same Old

Life goes on
Tom is doing well over all
but he has his highs and lows -- literally
yesterday was a bad day
we went to a party and his sugar shot to over 400 then he went below 70
up and down twice more in the day

it is so difficult for him

he doesn't discuss it with me
doesn't want me to ask
but I know
and I ask

he responds
almost embarrassed

I feel badly for him
but at the same time angry

this is nothing to be embarrassed about
and he is allowed to accept help

I think maybe that's the worst part -- that he still thinks getting help is a weakness

frustrating for me!

A Broken Wrist!

Mine
a couple of hours after I wrote my last post, I walked out of my house, fell and broke my wrist
Tom wasn't home but fortunately some neighbors were walking by and came to help
I was in terrible pain, but the ambulance ride was quick
and the people at the hospital knew was to do
I fell around 9 and was home before 1 -- good in ER time i think...

Anyway, I needed surgery to implant a metal plate and pins
surgery is always miserable
but my family took control -- thank goodness!
My sisters found the best doc -- during labor day week in which the Jewish holidays fell -- a feat where we live!
I feel well cared-for

but surgery takes you down -- not just the arm which was hurt
but pain meds mess up your mind

on Tuesday i ended up back in the ER
THE MOST PAINFUL HEADACHE I HAVE EVER experienced in my life
I don't think i am a wimp
but i was crying in pain

docs did lots of test
couldn't figure it out so diagnosed migraine

ok, finally, to Tom
Poor Tom
I'm out of commission --
can't dress myself, can't prepare food, can't drive
so many things i can't do
i am in pain, tired and cranky
my family is helping but can only do so much

he chooses work
maybe because he needs to,
maybe because he wants to

today he broke
was working on dinner
taking a very long time before i caught it
he tested and was 53
drank juice and ate food
better...

ah, the life of living with a diabetic
the good and the not so good

wishing every one a good night's sleep
(that's what I want)

Tom's Wife

Autumn -- UGH

this is not news
I do not enjoy the season of Fall
one of the reasons I moved back to the DC area
is because the summer lasts a bit longer

but you just can't trick the calendar
September 1 shows up and the schedule gets crazy
people get crazy!

my schedule for the next two months is packed
while I like being busy
this is too much in too little time

After months of no conferences - I have 4 in 8 weeks
that means a lot of travel

if it were spread out that would be ok
but its go here, go there, with no time in between to breathe!

its also a time of family -- too much
I love my family
but too much too often
well I start to feel overwhelmed

and then again I have days like today
bored
so much to do
but bored out of my mind

at this point in my life you would think I could figure out how to accept just being
but I have never been able to do that

is there a trick to it?

how do I just be in the moment?
i wish I could figure that out....

Poor Tom (and me!)

This year just won't deal us a good hand

first the deaths...
my dad, my dog, my cousin, Tom's uncle, I'm waiting for the next one -- there are several relatives that may go soon -- but please not this year!!!

then the car accidents -- Tom's has had 3!!!
he was responsible for one -- but the other two he was hit from behind
all three of them required major work on his car

you know I have had challenges with his driving in the past
but in the two accidents where he was hit, he was driving safely
He has really been working on it

Maybe things really do happen in threes, and Tom's accidents are done
I hope so

Tom's Wife

Email Trouble

I am having big trouble with my blogger account due to a change in email

Tom and I are still here plugging along

We have good days and challenging days

Lately the CGM is beeping that he is low at least once a day
AND he is still arguing with me that he eats enough carbs
NOT!

but I'm tired of arguing about it

I can't save him if he doesn't want to be saved...

Email Hell

For so many reasons I have had to change my email accounts...
It has been a mess
I finally have been able to see my own blogger account
but am having trouble following others' blogs

I have figured out a way to do it -- but it is not easy anymore
eventually I will figure it out...
but right now it has been very frustrating...

I'll get it
just give me time...

thank you

Thank you my dw friends... you support is gratefully appreciated

two weeks a the beach, why am I not happy?

Home from 2 weeks at the beach
I enjoyed it
really i did
it wasn't exactly what I had hoped for
too many people around (my sister invited lots of people)
but really it was so nice to be away
and I LOVE the beach

Tom arrived for the last three days
including our 27th anniversary
and, ON OUR ANNIVERSARY
we had an argument about money
he is worried about having enough to live on in our retirement
which is still 10 years away
and he is unhappy spending money on vacations now

what if we don't live another 10 year?
geez
and now I'm worried about my career/job/business choices
I'm already insecure in some of tem
he just added to it

now that I'm home I am feeling the burden of all there is to do
and do it all without spending any money because I just took the first 2-week vacation of my adult-hood

I feel like I should be happy but I'm not
is there something wrong with me?
maybe this week will be better....

Lilly, DW, Washington Post, Tom

Where should I start?
today was really crappy!
two more funerals to attend this week - relatives of relatives -- but still!

Lilly responded to my last post - Thanks Lilly -- you are a gem

DW - you are a hero -- doing amazing things with your life despite amazing odds

There was a very interesting article in today's Washington Post by someone describing living with his daughter's t-1 diabetes and the health insurance changes.  It was a well-written article something I recommend reading.

now to the Tom update.  he is having challenges managing his glucose -- high, low, high -- but the point is that he IS working at it and on balance is doing ok.  BUT, on Thursday in the midst of the horrible storms we had, Tom was hit by another car on his way home from work -- no one was hurt and it was clearly the other guy's fault.  The damage is going to be more than $3,000 and the kid who hit him wants to pay for it rather than go through insurance.  sounds fine on the surface.  but we don't know what it will cost and I am just not comfortable with loose arrangements on stuff like this.  I want the car fixed, I want to report it to the other guy's insurance company and get this done with.  I don't feel comfortable with all of the unknowns around doing it differently.  Ok, so you tell me to just let Tom handle it.  But he won't -- he works during regular business hours and I'm going to be away at the beach for two weeks.  we either tell the insurance company now or forget it.  Here is the kicker -- when we were talking about it tonight - Tom said to me: well, I need to balance your desires with those of the kid.  REALLY!!  The kid gets the same consideration as me??!!!!

and, he doesn't get it.  what's wrong?  what's the problem?  I'm so angry!!!

Family: Terrific and Awful!!

So, I love my family
but they do drive me crazy!
Tom is really my anchor -- when he is doing well with his meds
last night -- not so much
low and yelling -- it wasn't a nice evening

My sister -- plans for going to the beach?
i thought that was done and planned
today she is hesitating!
i am so frustrated
just make plans!!!!!

Another sister!
she is just out to lunch!
she asks my advice and then ignores me
and acts incredibly dumb
she isn't dumb but acts that way

And now I'm worrid about what to do for Father's Day
Should I be with my mom"
she says she doesn't care
but is that true????

I just don't know.....
feeling very stressed tonight.....

in idle

so here it is June and someone asked me "how's it going?"
That's a difficult question to answer

I'm doing "OK"
I have lost my fire, my drive
I find myself in getting along mode

my business is getting by
I'm doing what I need to do -- nothing special
I'm having a very challenging time making decisions

the past week has been spent trying to make plans for a two-week vacation t the beach with my sister
she has always had trouble making decisions
but this time I've been right there with her
so many choices, nothing exactly right
its been exhausting

I think we found something
hopefully we can finalize it this week

how are my friends in DW land?

Memorial Day Weekend 2013

I haven't posted in awhile because life has been busy
Between traveling for work = a lot
and supporting my cousin whose wife has been dying of a brain tumor
tonight she died
She was diagnosed the same day as my dad's funeral
it has been very difficult
and just trying to be "in" my life each day
some days are easier than others

This weekend my family will be gathering for another funeral
I hope to get some rest before everyone arrives
other than that it is going to be another tough weekend

Found new comments

I realize that blogging is not my forte
but I am feeling quite dumb right now
tonight I read a pop up on my blog site that I had ignored previously

it told me to check the comment spam folder in case there were valid comments there
well, I didn't realize this even existed
and, how did something get there?

well, there were several comments -- from 2011 and 2012
they were valid -- I am so sorry to those of you whose comments were stuck there
I always try to respond and publish comments from other wives
support is so important to us

so I now hit publish -- but they are buried somewhere in my blogs

to anyone who reads this
please feel encouraged to stay strong and true to yourself
At the end of the day, you are all you have
Others can help -- in many ways
but only you can decide to stand up and move forward

All the best

Crisis for TX DW

Here is what she wrote

Well it finally happened...DW had a low, lost control of car, wrecked two others, totaled his...thank God no one else was hurt...DW has a fractured stirium and is in pain...can't do much...needs help dressing, heating pads, meds, and have to drive him to & from work
7 am /4 pm...I'm just about to throw in the towel...need any help/suggestions from my DW sisters..& of course it made the front page of our small town paper...he will definitely loose his license and we just bought land to build our small dream home...I pray to God for patience and peace...TX DW

Oh Gd!  TX -- I so know that feeling!
It is so scary!
you feel so helpless!
and so frustrating!
you saw this coming -- why didn't he?

So glad others weren't hurt
so sad he is

The only suggestion I have is to breathe deep
I often forget to do that
just stop, take a deep breath with eyes closed
and then exhale
repeat

my heart is with you
time will make things better
won't fix it
but better

Beeps

Tom has a lot of machines
two cell phones, a continuous glucose monitor (CGM), and a pump
at any one point in time there is a lot of beeping going on
its difficult to know what they mean

the good news is that his CGM has a variety of sounds that mean different things
he knows what they mean
when I ask, he will answer precisely what is going on at that moment
but when I ask for a bigger explanation he tells me its his job, not mine to know all of this

on one hand, that's fine
but one particular type of beeping is very loud and persistent
I have finally understood that this is the sound indicating low blood sugar
but he won't let me help

"I just ate ..."
whatever it is for the moment
soda, m&m's, a piece of bread.....

on one hand I am frustrated that I can't be of more help
on the other if he won't let me in, after all these years, there just is only so much I can do.....

sigh,,, the life of a wife of a diabetic

Tom is OK

I'm sure you are all waiting with baited breath hear the next step in the saga of my life :)
Well, today is better
Friday, Tom had to take the day off due to the Federal government sequester
so, we went to the beach -- for one night
its a really nice drive, the day was lovely, we talked and stopped for lunch
it was a great break
we had a very nice dinner Friday night
we walked around
we talked
what can I say
it was so nice
and it was all about me

well...
almost
he had a few minutes of lows, and his GCM beeped quite a few times
but we handled it just fine
and he was there for me

very nice....

MORE bad news

I don't know how I am supposed to deal with life right now
yesterday my dog died
Friday night she was literally screaming in pain
it was awful

my heart just hurts

I am trying to just breathe
at moments its hard to do that.....

Baad Evening!

Poor Tom -- feeling like he has no control of his sugar!
Poor me -- feeling like she has no control over anything!

Late afternoon -- we agree to go to the grocery store and then my mom's for dinner
At the grocery store, I notice he is very grumpy -- not so like him

we get in the car to drive away, and it hits me
"Tom, what does your monitor say?"
"...... 70 and going down -- maybe you should drive"
we are in an intersection. 
I ask him to switch places and he says ok
but he doesn't know what to do
I put the car in park and get out
encourage him to switch places
fortunately the car behind is patient

I hand him candy and drive away
he is quiet

we stop at a liquor store to get beer and wine for dinner
and for him to get a real candy bar

clearly his sugar hasn't reached normal
we leave one store and are on our way to another
he asks for the car keys
and I won't give them to him
he says I am cruel

he is right
he wasn't going to get in the car and drive away
but I was scared

he got his candy bar and I drove us to my mom's
I apologized and he forgave -- even understood
but there was an edge to the rest of the evening

my sister was at my mom's and made dinner
 yummy shrimp quesadillas

the minute we were in the car driving away
Tom was complaining about the food
it had way too many carbs

What????
Well, the corn in the quesadilla, the quacamole, and the rice
huh?
there was hardly any corn in the dish
where is the carb in the quac -- other than in regular salad
and why did you eat the rice?

there was an argument for everything
when he checked his sugar was "over 300"
and he didn't know how to get it down without dropping too low

by the way, he dropped to below 50 last night and we had trouble getting him up

I'm exhausted and feel so frustrated

does he have an eating disorder?
or is he super vigilant about his diabetes?
what's the difference?????

I'm struggling with this tonight.

Really Struggling

Why does life feel so difficult right now?
I can't pinpoint anything
Yes, I know, my dad passed away
but its not like I'm dwelling on that
but now I have a cold
and I'm exhausted all the time
everything just seems so hard
I don't want to get out of bed in the morning

Tom is trying
he is taking care of himself
but me -- I'm not there......

Reading a Book

I am now reading a very interesting book
its about a guy whose mom has been diagnosed with cancer
the diagnosis is grim
but he deals with her treatments and with her dying
I wonder how I would have felt reading this while I was going through it with my dad
but now, I'm finding it very poignant
if anyone is interested, I am only a quarter way through
but recommend it and wonder how others will react to it

its called:   The End of your Life Book Club
and its by:  Will Schwalbe

Once in a Lifetime!

As you know, I have been struggling
the loss of my dad has hit me so hard
and yet I go on -- one day at a time

And, you know that I have 4 sisters
sometimes loving -- sometimes needing lots of space

So here is the story
my sister that I'm closest with
called me and said -- we have to go to Florida
we need sun and warm
get away from cold and clouds

Fort Lauderdale?
my favorite city?
ok, I'm there

then she talked to sister #2
they wanted to go to Orlando - Disneyworld
think it will be fun and less expensive
AND, have a niece there

ok, lets go

turns out sister #3 is there visiting her daughter
so off we go

4 of the 5 sisters aged 56 (me) to 62 (one with the daughter in Orlando)
all together
we spent an entire day together going through Disney parks

we have never spent a day having fun together like that
it was amazing

honestly I can't say it was "fun"
I'm not such a Disney person
lots of walking and waiting
but I'm so appreciative of the "moment"
sorry the last sister couldn't be there
found the entire thing poignant

I got home exhausted
happy to see Tom
happy to be home
think I'll sleep through the weekend

Struggling to Write

I have thought many times recently of writing.
but don't know where to start.

Life has been very interesting
I miss my dad SO MUCH!
My mom is a rock and someone I admire more than ever
work is going better than expected
Tom -- well we had a little scare with a bad test - but it resolved itself and he is fine
a cousin was just diagnosed with a brain tumor and the prognosis is quite grim

I feel like I'm on a roller coaster
good stuff, bad stuff
maybe its related to weather
freezing cold with sleet
then bright sunny skies almost 60 degrees!

I'm too old for these swings
or something
its scary

I noted something in Lilly's blog about how other people judge
I remember so clearly thinking to myself (many years ago)...
How can I leave him because he is ill?
what would people think?
what would I think?
such a horrible judgement...
leave someone due to illness?
we as a society just don't comprehend
with all of the talk about mental illness and guns in the media
we still just don't understand so much
there are many medical issues that impact behavior
what is the cause and effect?
just because our medical industry can't pinpoint the stuff, does that mean it doesn't exist
or that it is something other than real?

See?  I start thinking too much
and now I'm exhausted
really
I just want to sleep
lots of sleep
I'm overwhelmed with too much to think about

maybe its my mental illness?

A Broken Heart

My heart is broken.
As if it were not bad enough that my dad passed away a week ago
the tragedies don't seem to stop

my uncle visiting for the funeral was rushed to the hospital for internal bleeding over the weekend
my cousin was taken into emergency surgery the same day as the funeral for a mass on her brain -- no conclusions yet, but the prognosis is not good
Tom's sister may be in a severe medical condition -- undiagnosed at this time -- out of work for a month so far and probably at least another month to go -- we get information from his mom so its vague

What else is going to happen?
How many challenges can we face at once?

This is heartache I have never experienced

Thank goodness Tom is doing ok
I just couldn't bear it if he were to have a medical issue right now

Each moment, I feel a clench in the belly and say to myself
breathe --  in another minute, the panic will go away

I look at my mom, the amazing person that she is
she says, all you can do is go on....
one step at a time, one day at a time
I need to learn from her
but what other choice do we have?

breathe
make dinner
write in my journal
read a book
work
sleep
(in no particular order)
repeat

sigh..............

Death

He died on Saturday night, the funeral was Monday morning, we are "sitting Shiva" now
I would like to write about it
but not yet
thank you for your notes
they are meaningful to me
I will share, because death, like diabetes, is a process
and living through the death of a loved one
particularly surrounding my a large loving family
is wonderful and burdonsome all at once.

Hospice

This is awful!
And, truly there is no one to blame -- although my family is trying
let me try to sum it up

since Tuesday, dad has been suffering -- his body is slowly dying
and it is not an easy process
its awful to watch -- he is pain 45 out of every 60 seconds
and it is spasms

my mom - didn't like the hospice staff from the beginning
she is not a shy person
but is of an age where authority still is authority
so she would not request a different nurse/team
but then when she didn't like  the medicine dosages prescribed, she didn't administer them as prescribed
at first she was open to have him go to the Hospice facility, but now that a bed is available, she changed her mind and said no
She really dislikes the primary nurse in charge of dad's care and doesn't trust her
everything else from there is tainted
each day the medication routine has been changed
but mom doesn't comply and then doesn't understand why it doesn't work
she said today that she thinks he is over-medicated

sister #1 is angry but feels as if we should comply with the rules, take copious notes and complain after everything is over.  "we don't want to make the nurses angry because that may negatively impact dad's care"

sister #2 is very angry and thinks the medication dosages are wrong and interacting badly -- but she just complains to us -- never directly with anyone at Hospice (which is ok -- just observing)

sister #3 is also very angry but she believes that Hospice needs to be doing a better job overall.  She has spoken to supervisors and managers at the Hospice and raised the level of concern regarding dad's care.  we think that is what led to the bed becoming available at the facility.  that would be ok -- but mom is now saying no to that.

she asked why they can't give that level of care at home.  the nurse tonight said that the medicine delivery mechanisms they have at the facility are different and they can manage the meds more continuously and steady that way.

does this make any sense?
I'm not sure...

frankly, I'm not angry just exhausted

I don't really blame the hospice people
they give you advice, you don't follow it
then how can you blame them when the results are not what they predict?
at one point I tried to say this
but I was shouted down

I know, I'm perfect  -- Not!
its just that my family is so loud in its process
this is not new
we play our roles -- and I'm learning that the death of a parent makes these roles more pronounced

tonight I see things better than I did during the day
it helps to write it out

Now, maybe, some sleep????

Losing my dad....

I’m so sad.

Don’t know if I’ll get a call that he’s gone or if I’ll be there

Really, he is already gone – he is not my dad anymore

Just a body in pain

But it really hurts

I’m not so good at talking about it

And my family is – well my family

I am just sitting here thinking about what life is going to be with him really gone

And, I know… I know…..

But still I’m crying….