part seven

you can read the first six parts here.

i know it's been a long time since i wrote about my mom.  i don't know why.  after i posted part six, my cousin (the one whose mother was mentioned in that post) left a lengthy comment about what i wrote.  of course, she only knew her mother's side of the story.  and i only know my mother's side of the story.  i've seen the emails, i spoke to my mother about it.  i can only write my truth.  and i responded to her comment on my blog with that basic sentiment - i can only write my truth.  after a day, i decided to delete both her comment and my reply to it because this is my damn blog.  this is my place to say what i want - to speak my truth - and i'll be damned if i let someone else tell me what i can and cannot say here.  

i'm sorry that what i wrote upset her.  through everything between her mother and me/my brother, my cousin was supportive and caring toward me.  we didn't discuss much about our mothers, but we still had a relationship.  after that blog post, we no longer do.  and that was why i waited so long to post that part.  i knew that she would read it - i knew that there was a huge possibility that the aunt in question might read it - and i knew that i would have to deal with fallout.  so along with losing my mother, i lost an aunt and cousin during this process.  all part of life, i suppose.  but that doesn't make it any awesomer - it just makes it 'life'.  

i woke up black friday at my in-law's house, sleeping on a fancy air mattress and entangled with awesome husband.  we had another long day at the hospital because mom was to be moved from icu to the palliative care unit.  this was in the regular hospital and had a much different ebb and flow than the icu.  i had already proven myself to the nurses in icu, and they were already used to me sitting by mom's bedside all day long.  now i had new nurses to deal with.

and it did not go well.

mom was very sleepy at this point.  she would wake up if we prodded enough, but she spent most of her time resting with her eyes closed.  i asked her if she wanted water or broth or anything from time to time; the answer was generally no.  awesome husband and i were at the hospital early, wanting to be there a soon as she was moved.  we went up to the palliative care unit, where she was in a double room - i don't recall if the other bed was occupied.  i was faced with a new set of nurses that i had no existing relationship with and i was not happy from the get go.  for those not familiar with palliative care, it's about just treating symptoms and keeping someone comfortable.  palliative treatment does not cure anything.  my brother, husband, and i had decided the day before not to feed my mother any longer.  we knew it was a matter of days, and we were waiting to hear from the hospice.  we offered her water, which she sometimes sipped at.

icu nurses are different.  i don't know how to explain it.  my mom was in icu for a few days; my father's been in icu a few times as well as the 'regular' part of the hospital.  icu nurses move faster and seem to smile more.  everyone knows how shit's serious in the icu; these nurses seem to exude a ridiculous level of confidence and compassion while not taking any bullshit.  i don't have nurses in the family, i don't really know what the difference is between nurses.  but i've always felt a much different vibe from nurses in the icu than anywhere else.  when i've had a parent in the icu, as long as i stayed out of the nurse's way and made myself useful, visiting hours didn't matter.

i've had nurses in the regular hospital units try to shuffle me off at the end of visiting hours.  i've usually not listened to them.  i'll apologize to nurses now for ignoring them.  i stay out of their way and make myself useful by getting broth or water, or helping my mom with her bedpan (i think that's what endeared me to the icu nurses, tbh).

so.  we get to this palliative level.  at first there was a male nurse that seemed okay.  he told me when my mom had been moved, that she hadn't really woken up or responded when breakfast came.  WELL.  then this other nurse came up at me, and this chick rubbed me wrong from the get go.  i felt like she was rough with my mom and i didn't like it.  mom was moving her mouth and i thought she might be thirsty, so i was kind of bugging her to see if she wanted some water.  this nurse walks around me and sits next to the bed, opens this applesauce, puts it on a spoon, and PUTS THE FUCKING SPOON IN MY MOTHER'S MOUTH, telling me something along the lines of 'this is how you have to feed her, you have to put it in her mouth for her and then she'll know to eat it'.

this was probably the single most upsetting and angering thing that has ever happened to me in a hospital.

we weren't force feeding my mother.  we weren't trying to get her to eat.  we were trying to keep her comfortable.  she was practically comatose.  and this bitch was force feeding my mother.  for one of the very, very few times in my life, i was speechless.  i didn't know what to do.  i think i may have started crying.

friday night, all of my mother's family came.  her brother and his wife, her sister and her husband, and at least three of my cousins (i think all four may have shown, but i can't remember for sure...).  this was the first time we were all together since i told them she was dying, that there was nothing we could do.  this was the first visit during mom's 'end of life' phase.  i remember one of my cousins really helping me feel better: she's a social worker and works with end of life cancer patients.  i always wondered how she did that; it must be so sad, everyone dying.  but talking with her, i realized it wasn't all sad - it was an opportunity to support a family and help them be strong.

black friday night.  everything was happening so fast, and each day passed so slow.  i don't think mom had opened her eyes in two days at this point.  but it was the last night we spent at the hospital.

just keep swimming.

last friday i went to this new psychologist.  i like him enough so far.  he can't give me medications, which is annoying because then i have to find another doctor for medication management if that's what i want.  maybe just talking it out with someone will help alleviate some of the issues, then my current medication will be enough again.

after two weeks of working more than i have in the past six months, this week is slow.  it's been nice to have more me time again, just begging out an doing nothing.  i think i do a little too much 'nothing', but whatever.  i'm sitting on my couch, watching the news, typing, and i'm in pain.  so what if i nap and space out a couple of hours a day?

i'm planning our anniversary trip to disney world.  this october will be our tenth wedding anniversary and we're going to disney.  i'm excited - i think we're going to stay at the contemporary if it's not an arm AND a leg.  my parents stayed there on their honeymoon (we stayed at the animal kingdom lodge with a savanna view room.  it was awesome.) and it's on the monorail line right next to magic kingdom.  we've already started looking at different places we want to eat.  you can start booking dining reservation 180 days before your check in - which is this april, so i have a couple of months to decide exactly what we want to do and where.  i also have nine months to start saving money to spend because we're going to need it.  luckily, i can buy disney and universal tickets through AAA at a bit of a discount.  i can buy them ahead of time so i don't have to worry about that when we get there.  i'm really really really excited about it.

even though i'll probably need a wheelchair or electric scooter.  even if my pain levels are lower or gone, the fatigue will be devastating.  if we want to get anything done, i'll need a chair.  and i always hate that.  when you're fat in a chair at disney, people give you looks that clearly say 'look at that fat, lazy bitch who doesn't want to walk the parks'.  it's annoying.  and it makes me sad.  i've used a chair before because i injured my foot in a car accident a few years ago and i have degenerative arthritis.  doing more than one day in the parks was not possible on that foot; when people came to visit, i'd get a chair so we didn't have to baby my foot.  and i hated getting those looks.  but i used to be able to go to universal for a day or disney for a day and not have a chair.

now, we spend an hour at the mall and my ankles feel like they might explode.  not to mention all the teensy joints in my feet, my hips, and my back.  an hour in the mall is really bad.  how am i supposed to spend seven days traveling, going to disney, going to universal without a chair?

i don't know.  it's just one other thing to think about/worry about/whatever.

i'm just trying to stay focused and calm and keep l-i-v-i-n.

honesty is such a lonely word.

i had written this as part of a journal i'm keeping mostly related to my rheumatoid disease diagnosis.  no one on that website knows me in real life, unlike people who read this blog.  it's an easy way for me to write without worrying about what people i care for might think.  and it's turned into a good way to hide.   this entry is day ninety four since my diagnosis.  it seems like so much longer in so many ways; i don't remember what it's like to wake up without pain.  i don't remember what it's like to be able to go to the mall without having trouble walking around.  i don't remember what it's like to just sit still, reading or watching a movie, and not be in pain - even though i'm not moving.

i went to a psychologist for the first time in almost a decade yesterday.  i'm recognizing things in my life and thoughts that i do not like.  i have often glossed over some of my disordered eating, but over the past week i have spent more time thinking about food than i have spent thinking about anything else.  i think back to the days i was counting calories - how obsessive i would become.  save these breakfast calories so i can drink tonight.  save these lunch calories so i can go out to dinner later.  save calories every day this week so i can binge drink this weekend.  i don't drink any more, but neither do i count calories.  it becomes an obsession for me, counting calories in and out.  trying to determine exactly how many calories i've burned today - so i can have a bit more food and stay within my calorie goal.  

my behaviors vacillate back and forth, sometimes similar to an anorexic's behavior, sometimes similar to a bulimic.  i saw an episode of 'my strange addiction' where the girl took so many laxatives - common for some anorexic people.  i started wondering if that would work for me.  i scared myself.  i think i have a problem.

as billy joel wrote, 'honesty is such a lonely word'.  if i'm only honest with myself, how can i get help?

delicious pretzel time recipe!

we had a visit from hercules here on long island.  i still want to know who the hell decided we had to name winter storms? 

it snowed thursday night into friday morning.  awesome husband's job wanted him to come in, but for like five hours.  and it would have taken him two to get there and back.  and he already made his money for the week.  so he stayed home.

he was home A LOT this week.  he was off last weekend.  he worked monday.  he was off tuesday because he made the most hours for the company last week so he won a contest for a paid day off.  he was off wednesday for new year's day.  he worked thursday.  he didn't go in yesterday because of the storm.  and he's off today and tomorrow.  

huh.

which mean i have to entertain him.  well, not so much 'entertain' him, but he hates sitting around watching television and doing nothing (i.e.: what i do all the time when i'm not working or interning).    we ended up playing some video games together and baking.  it was a good day to bake.  what did we make?

AWWW HELL YEAH!

yup.  awesome husband @_antgas and i made pretzel bites.  they were fucking delicious.  we ate all of them.  ALL OF THEM.  i then ate a small salad for dinner because pretzels are not calorie-free, regardless of what i'd like to think.  even if they're not freshly made soft pretzels, i really love pretzels.  they are definitely my go-to snack.

my traditional american family holiday (christmas) gift from my dad made this all possible.  revdadbob came through with a 6 quart kitchen aid stand mixer.  i've been wanting to bake more but my hands hurt too much.  even mixing chocolate chips in cookie mix is very hard for me.  now?  not so much.

thanks, dad!

so we broke that shit out and got to baking.  

delicious fucking pretzel bites*

*you can rename this recipe if necessary.

ingredients:

• 1 1/8 cups of water, heated to appropriate temperature
• 1 1/2 teaspoons active dry yeast
• 3 cups all purpose flour
• 3 tablespoons brown sugar
• 2 quarts water to boil
• 1/4 cup baking soda
• some butter and coarse salt 

be sure to check your yeast for the best temperature to bloom.  baking with yeast can seem daunting but it's not that hard if you follow the directions.  i followed some instructions i found online stating the water should be between 70º and 80º, but my yeast wasn't blooming.  i read the packet and it had a different temperature.  so my yeast took a long time to bloom, and it didn't get as frothy as i would have liked.  the taste was still good.  so, you know.  your mileage may vary.

1.  get your water and get it to the right temperature.  if you're using a metal bowl like me, prewarm it by running hot water in it so the bowl isn't so cold.  if it's cold, it lowers the temperature of the water.  yeast are super particular about crap like that.  i used filtered tap water and a digital food thermometer to get to 78º (which was too freaking cool but whatever.  don't make the same mistakes i do).  

2.  add in the brown sugar.  yeast likes to eat sugar.  this should help the proofing and it also makes the pretzels yummy yummy yummy.

me adding active dry yeast to my warm water

3.  after adding in your active dry yeast, mix it up until you can't really see the yeast granules any longer.  don't use a high speed - just mix.  i think i used like 1 or 2.  i didn't want to hurt the yeast.  i also covered it with a dish cloth and left it for a bit.  your yeast should start to bloom in about 5 minutes.  i like to watch it bloom because i'm a damn nerd.

take this time to marvel at the idea of yeast.  you purchased this little packet or jar in the dairy section and it was just a packet or jar.  you've added it to sugar and warm water and it's coming ALIVE.  yeast is ALIVE.  it is in there EATING THE SUGAR and being awesome.  life.  LIFE, MAN.

4.  i forgot to take some photos.  but after your yeast is all bloomy, dump in the 3 cups of flour.  i used whole wheat organic all purpose flour by king arthur.  they aren't paying me or anything, but i wouldn't mind being paid in flour or other awesome products :D  i have used it for pretzels, dredging, cookies - and we love it.

5.  if you are using a stand mixer, you do not want to mix it faster/higher than 2 with the dough hook.  four minutes should be perfect.  if you're doing this shit by hand, knead for about 8 minutes.

6.  oil a bowl and put the dough ball in it, turning to coat.  cover with a towel and put it somewhere to rise.  i put it in my cold oven - THE OVEN WAS OFF DON'T TURN IT ON.  you can put it anywhere cool and dry and dark.  leave it alone for an hour.

7.  after an hour, separate the dough ball into eight equal pieces.  roll each piece out to about a 20" rope.  you can then either twist it into a pretzel shape or cut it up like i did.

my dough rope may not have been 20 inches.  tough shit.

8.  while you are doing this, do something else i didn't take photos of - boil your water.  you want to boil the 2 quarts of water and stir in 1/4 cup of baking soda.  make sure it's mixed in, and try to use about 2 quarts of water.  too much more and the baking soda won't be able to do it's job.  too little water and you may taste the baking soda.  i don't know what job the baking soda does, i'm sorry.  but let it do it's job.

9.  once you have your pretzels/pretzel bites/pretzel rolls set and your water is boiling, you want to boil each pretzel thing for about 10-15 seconds.  use a slotted spoon to remove them and put them on a plate with paper towels to drain.

10.  grease your cookie sheets.  i used butter; you can use something else but i decided i wanted to make sure we had a nice buttery tasting soft pretzel bite.  

11.  put all your naked, boiled pretzel things on your cookie sheets; sprinkle your coarse salt on top at this time.

12.  put your cookie sheets full of naked pretzel things into a 425º oven.  my bites took about 10-11 minutes; i would recommend watching closely after 8 minutes.  ALSO do not put your sheets on the bottom rack - i have read reviews that this can overcook the bottoms of your pretzels.

salted pretzel bites and a couple of small pretzel rolls in the oven.  yum.

13.  like i said, keep an eye on them after about 8 minutes.  most of mine were a light to medium golden on top, and when i touched them they were soft with a defined 'crust', kind of like a bagel maybe?  it's hard to describe.  poke them.  feel them.  love them.

14.  melt a bit of butter (i melted maybe a tablespoon for all of these pretzel bites).  as soon as your pretzels are out of the oven, brush that melted butter over the tops.  

15.  eat the absolute crap out of those pretzels.

this is a plate full of pretzel bites.  they were delicious.

yum.  YUM.

i did not do anything other than salt and butter.  but i was thinking that you could try so many other things.  like skip the salt, brush with butter after baking, and dust with cinnamon sugar; use garlic salt before baking; make small rolls and stuff them with something.  you could even add stuff to the dough i bet - like chopped jalapenos, and then dip in cheese?  maybe?  i read something like that online.

and i think that's the best part about this recipe - it's a great base to try other things.  wrap the dough around hot dogs or veggie dogs.  make sandwich or burger sized rolls.  do whatever your crazy, pretzel loving heart desires.

and tell me if you liked them.  or share your pretzel ideas.  remember, i'm on pinterest, i'm on tumblr, and you can find me on twitter - @stephgas.  my goal is to have people i don't know share my recipes on pinterest, so please feel free to pin and link back to my blog.