what a difference four and a half years makes.

today is day four of my four day weekend.

four day weekend, you ask?

yes. i had the typical saturday/sunday weekend, monday for memorial day, and awesome husband @_antgas and i took off today for a very good reason.

i graduate today!

that's right, the strange journey that started back in august of 2010 with a mini nervous breakdown and a fateful trip to a psychiatrist is ending. i originally started my undergrad to get an associates just so i could put it on my resume. now i'm graduating with a bachelors in community health and human services.... and planning to go onto graduate school.

a lot of ridiculous, awesome, and horrifying things have happened since i decided to return to school. my mother was suddenly taken ill and died peacefully.

we rescued another hysterical kitten (who has turned into a maniac). we moved back to new york. i became a body piercer for a while. i decided to continue my education and realized a lot about life in the process.

taylor crossed the rainbow bridge. i fought with my gallbladder and lost and later willingly barbecued my uterus. we moved even further out in the 'burbs.

i was diagnosed with rheumatoid arthritis and failed every medication i tried. i landed an internship. piglet was diagnosed with kidney failure and then had to have her canines removed. i also was hired as a paid counselor at my internship. and soon thereafter, i sat for my CASAC exam and was hired on as a full time counselor. i stopped taking any medications for RA and am surviving as best i can.

my little brother got married. and then we got a puppy and i started a new medication for my mental health issues.

and today, i graduate. and i've been accepted to three graduate programs and have pretty much decided on one. i will be going for my MSW and hope to complete in about three, three and a half years. it's been a ridiculous journey; sometimes it feels like yesterday and sometimes i can't remember what it was like before i was a counselor.

thankfully, my therapist is working today since the office was closed yesterday. i am a jumbled mass of conflicting emotions and ideas. but i am really excited to be graduating and opening a new chapter in my life. well, at the end of august when grad school starts.

yeah.... no.

that holistic vet that we went to?  rip off.

that $300 nutrition consultation?  the special, customized diet designed specifically for piglet?

it was ONE RECIPE that was made with a premix called balanceIT.  literally.  it was lamb, sweet potato, fish oil, and balanceIT powder.

$300.

ONE RECIPE.

PREMADE MIX.

it was like i paid $300 for a fucking advertisement.

so we didn't do that.  we made a different raw recipe.  i bought all my own supplements - fish oil, taurine, vitamins, all that crap.  i ground up raw chicken thighs, chicken livers, and small chicken hearts.  which was slightly devastating to me.

and the cats like it.  it's nutritionally balanced, it isn't made with a premix, and it didn't cost $300.

i took piglet for her 4th acupuncture appointment today.  it's $62 a session instead of $172.  and it's less than 10 minutes away with traffic, not 40 minutes away.  i'm hoping to get piglet's blood drawn by another vet within the next week or so to see where we're at.  i've decided that i'm basically going to suck it up and just go to a local vet that's not an idiot and refuse to discuss nutrition.

now, the smell of the raw food is making me sick.  literally.  and i'm very nervous about raw chicken and my stupid immune system.  awesome husband @_antgas and i are considering cooking the food next time.  at least it will still be home cooked and i will have control over what's in it.

in other non-cat news, next week is my last week of interning.  i'll be a full fledged alcohol and substance abuse counselor come june 2nd.  i'm super excited.  i've been decorating my office and buying twelve step books and all types of awesome shit.  very exciting.

i've been very tired recently, not sure if it's my RA or if i'm just beating myself up too much.  or working too hard.  or something.  ugh.

at least my cats are healthy.

update on awesome husband & piglet...

awesome husband @_antgas is no longer sick.  he's all better.  and back to work.  thank goodness.

but now he's got some pinched nerve or something or other.  he wakes up every night in pain now, around his neck and shoulders.  ugh.

now, me on the other hand.  i spent five days fighting with aetna insurance again trying to get my damn humira.  i got it.  damn it.  damn it.

and then my rheumy is leaving.  moving to texas.  so i have to find a new rheumy.  and start over with that relationship.  damn it.  DAMN IT.

i took my humira on saturday.  then sunday, monday, and tuesday nights i had so much trouble sleeping!  i don't remember this happening the first two times i took humira.  but i've been having really shattered sleep, like i keep waking up.  i go to bed at 9pm and sleep until 7am (i stayed up until 10pm last night, barely).  and then i have really vivid, really ridiculous dreams.  mostly drug dreams and sex dreams.  and the most annoying part is that i wake up and think about how stupid crazy the dream is, then roll over to go back to sleep... AND THE DREAM CONTINUES.

ridiculous.

piglet did well at her holistic vet appointment.  he handed me a $1200 estimate, including over $600 for X-rays... fucking X-rays.  i paid $300 for a nutritional consult - i filled out some paperwork about what i've fed piglet, what kind of things i want to do (feed raw, home cooked, etc) - and that paperwork goes to a veterinary nutritionist who reviews piglet's most recent vet records and designs a specialized diet for her.  i'm excited about it and hopeful that i can modify some of it to feed samantha and jake that food too.  holistic vet also wants us to give piglet chinese herbs to support renal function and acupuncture.

we believe in acupuncture.  but this holistic vet wanted to charge $95 for acupuncture AND the $77 office visit fee... and it's 35 minutes away and piglet hates the car.  so i did some calling and found a very local veterinary emergency clinic that has an acupuncturist on site that charges around $50 - the only thing i have to do is pay $150 for a one-time consult.  i'll live with that.  piglet will have acupuncture once a week for at least a few months.

and then holistic vet will take blood again and we'll see what piglet's kidneys are doing.  but she seems to be feeling well - piglet eats and drinks and runs and plays and stomps on me with her pretty pointy feet.

love it.

insert witty blog title here

i want to write, but i'm not coming up with anything good to title this random blog of crap.  so tough titties.  apparently i'm not going to be witty today.

piglet seems to be doing better.  she's active, and eating, and stepping on me with her pointy feet, and following me around relentlessly until i tell her to stay put and leave me alone.  so, back to normal.  i'm going pet food shopping today to switch up their food again.  i love love love the grain-free ingredient list of what i'm currently feeding, but the calorie count is really low.  i think i can find something close to as good with minimal grains and more calories.  and she's ready to go back on kibble starting today - which is excellent.  because we've been feeding her nighttime snack wet food on our bedroom floor.  and i don't know if it's a cat-eating-on-carpet thing or a new piglet-has-no-canines thing but she's a messy wet food eater now.  very messy.  i'm hoping to put all three cats on wet food breakfast and midday feeding, then kibbles for nighttime snack before bed.

i'm sad that i haven't been cross stitching recently but i've been doing other things.  i've picked up a few books about recovery and psychology and shit, so i've been reading.  one is about healing your inner child.  it's already very powerful and i think it will be useful, not just for me but in my counseling.  i also got a cute little book of daily affirmation things for recovery.  i'll use that in groups i think.  and i finished my positivity jar the other day!

positivity jar for work.  full of POSITIVITY!

i first collected five pages of positive affirmations.  some are for recovery, some are for self-worth and self-love, all are positive and applicable to anyone.  then i formatted them to be roughly the same size, like a largish return address label.  then i cut pretty scrapbook paper to 8.5x12" and reset the margins, then printed the affirmations one page at a time.  i used that cutting pad and a rotary cutter to cut each affirmation, folded each in half, and tossed them in the jar.  i used one of the scrapbook papers to cover the top part of the mason jar so it's pretty.  i'm considering seeing if any of my crafty friends have a cricut and could be commissioned into making a nice vinyl cling to put on the jar.  i plan on keeping this on my desk and when someone is having a particularly shitty day, they can get some positivity.  another idea is to bring it into group and pass it around, having everyone choose one and discuss it.  

i also bought another mason jar that i'm going to paint black on the inside (maybe with some glitter, who knows?) for negative thoughts.  i found a notepad with neon colored pages about 3"x5" that i'm going to have people write negative crap on, fold it up, and put it in that jar.  when i was in high school, we had a woman who ran the bookstore that we called 'mom'.  she was amazing and empathetic and loving and caring.  she truly cared about each of us, everyone in that school.  some of us gravitated toward her and spent a lot of time with her.  one day mom emptied out the bottom drawer of her desk and started having us write stupid shit that we needed to let go on her cube pad of neon paper.  we'd even draw little pictures sometimes.  then we'd fold it up and dump it in that drawer.  once it was in that drawer, that was it - we had to leave it there and let it go.  we went through that drawer when we were graduating high school, and it was ridiculous the types of shit we were going to hold on to.  i'm hoping to recreate that with this jar.  in recovery, we talk about recognizing what we can and cannot control, and letting go of what we can't control.  this is a tangible exercise in that.  i think.  

awesome husband @_antgas and i went to a local organic farm last weekend to meet baby animals.  i was kind of bummed that there were only a few baby animals - chicks and a lamb - but there were also alpaca.  which were neat.  but distracted.

@_antgas and the alpaca.  who was watching other things.

i pet a lamb! it was completely unconcerned with us and had a one track mind for nibbling.

then we stopped at another farm famous for it's pies.  @_antgas got a peach pie and we got some cookies.  i don't like peach pie, but he enjoyed it.  (not all of it, we shared with his parents and grandma.)

and then a couple of weeks ago i broke down and cooked meat.  i mentioned 'pot roast' once to awesome husband @_antgas and he couldn't get it out of his mind apparently.  i bought a huge pot roast, enough for dinner and lunch for him for the entire week.  i made it and it was fucking delicious and i felt horrible touching and cooking meat.  but it was worth it.  i'm still sticking to my roughly 90% vegetarian lifestyle (i don't like labels and i like freedom to eat whatever the fuck i want) but i haven't had my mom's pot roast in a very, very long time.  the gravy wasn't as thick as i'd have liked, but it's been years since i've tried to make gravy so i was pretty pleased with it all around.

um, yum.

and then i picked up a bookcase from craigslist.  it was $15 and it's not real wood but it was $15.  i'm going to prime it and paint it and use it in my office.  i'm thinking of trying to take the back off and wrap it in fabric or line it with scrapbook paper.  or i might paint the insides one color and the outside another.  or something else i find on pinterest that ruins life for me.

so, life has been good.  i'm going to be a paid counselor as of monday.  the cats are doing well.  i'm feeing okay emotionally.  still in a lot of pain rheumatoid disease wise.  the humira doesn't seem to be helping at all.  yet.  it's only been about 3 weeks, so we'll see.  hopefully it starts to work.  and hopefully it works well and i won't have a lot of pain and i'll be comfortable again.

what a week.

it's just been up and down.

piglet had her surgery tuesday morning and is home recuperating.  her four canine teeth looked like 'swiss cheese' according to the vet dentist, so all four were removed.  two of her premolars have been resorbed.  the vet dentist says piglet does have feline odontoclastic resorptive lesions, and it may end up affecting other teeth in the future.  we're waiting for biopsy results from the gum tissue; should have them by monday.

i've had a rough week feelings and pain-level wise.  i'm more swollen than i've ever been, and i'm in as much pain as i've ever been.  the methotrexate (chemo) does not seem to be helping yet, but it's only been two weeks since i've restarted the medication.  and i took my first shot of humira a week and a half ago, with no results as of yet.

it would be nice to not always feel like shit.  i remember when i got my gallbladder out, i was shocked to realize how much it was affecting my digestion and tummy and stuff.  i'm kind of hoping the same thing happens - i wake up one day and my rheumatoid disease is being successfully treated and i'm no longer in this much fucking pain all the time.

we'll see.

have a good weekend :)

at least it's friday.... ?

it's been an interesting week.

i'm still off my rheumatoid disease meds - no methotrexate (chemo), no enbrel.  of course, it was time to switch from enbrel to humira anyway.  this last week the pain and fatigue have REALLY caught up with me.  very upsetting.

last friday night was the billy joel concert - so much fun!  awesome husband @_antgas and i had a great time.  billy played some old songs that don't get played that much.  taking a cue from @_antgas, i used my iPhone to note the set list so i'll always remember what i've heard live.  this was my ninth time seeing him though (i think.  it sounds about right) sooooooo there's a lot missing from what i've seen played live.

i took a few photos too.  our seats were right behind the stage in the 300 section, which is this weird bridge thing.  we were in the front row and it was great - no one in front of me.  i was able to sit the entire show and still see, and the sound was still great.

our view of the stage before the concert

yay! billy!

billy's piano spins.

on the train to the city, there were two couples pregaming the billy joel concert on the train (yes, this is long island).  we were going through the valley stream station and one of the girls goes, 'this is where i used to live, valley stream.... suffolk is so white trash'.  if you're from long island, you'll see why this was HYSTERICAL coming from a woman pregaming billy joel on the train drinking miller lite out of a can.... hysterical.

we missed the train on the way home.  damn it.  we caught the first train from penn station into babylon, where we had to transfer, but we missed the transfer by a couple of minutes.  stupid.  so we had an hour to kill at 12:30 in the morning, which meant listening to what i suspect was a homeless woman cough like she was dying while smoking cigarettes and watching drunk people (some of whom were wearing really high heels) run up and down the escalators, since of course they weren't working.

when we got on the train home, a group of kids (probably mid-twenties.  that's how you know you're old, when you refer to 20-somethings as 'kids') stumbled up with the conductor right on their heels yelling at them about delaying the train.  apparently one of the kids leaned out the door to light and smoke a cigarette while we were stopped at a station.... um, really?  once the conductor walked away, the guys were SUCH DOUCHECANOES.  so bad.

i slept late on saturday and we took it pretty easy all weekend.  but i was still tired on monday - fell back asleep and took a nap in the afternoon.  same on wednesday - tuesday and thursday i interned and did alright.  but today i turned off my alarm and fell back asleep - for two hours!  i had to rush to get ready to go to my therapist appointment.  which was emotional enough itself, of course.

piglet's maintaing.  sort of.  it's been about 6 weeks since we noticed piglet's tooth injury.  we knew it would probably have to come out; the vet said it would probably die so i was watching for that.  in early march, her tooth started to look a little worse, so i called the vet to have it extracted.  that's when they found out her kidneys were failing - pre-surgery blood work.  i've been going back and forth and trying to talk through what's happening and what our options are.  that was three weeks ago today, and on wednesday i realized her tooth was looking really bad - it's like it's completely covered by the gums (it's a canine tooth).  shit.  so i called the vet and told them and was like, i can't wait any longer.  we need more bloodwork to see if she's improved at all with her modified diet.  that tooth needs to come out, and we can't do that unless her kidneys improve.  she's been on antibiotics this entire time and her tooth has only gotten worse.  but the vet thought maybe her numbers were so bad because she had a kidney infection - if that was the case, her numbers should have improved... right?  ugh.

oh, and i never did get my tattoo touch up.  i still felt too poorly on my appointment day to go in and get it done.  i'm planning on starting my chemo again tonight or tomorrow and the humira is being delivered tomorrow.  i have to decide when i'm starting that.  hopefully soon because everything hurts.

after the vet tomorrow, we have a pretty relaxing weekend lined up.  hanging out with friends tomorrow night and just cleaning and laundry the rest of the time.  i hope that my meds will start doing their shit soon enough and then i'll feel GREAT!  right? ;)

me and piglet <3 i="">

i just don't know.

this is a journal entry from the rheumatoid arthritis support website i visit daily. i really feel like i can be free there because no one knows me.  i still worry about sharing some things on my blog because people i actually know in person read it.  

just took my 8th injection of enbrel last night. that's two months in. i'm going to be on it for another 5 weeks minimum. so that will be 13 weeks, three months. and most literature/nurses/doctors say it will kick in within three months.

i'm sure some of you know i'm still not experiencing any relief. any at all. i'm taking supplements including omegas hoping to alleviate some swelling. i'm taking my folic acid. i take a multivitamin. biotin. probiotic. eat veggies and a little fruit. eat limited meat. eat very few moderately to heavily processed things (compared to others, at least. i still eat a veggie burger a week). no bleached flour in the house. organic, vegan, minimally processed sugar. limited cow dairy (mainly cheese). i have no food allergies or sensitivities that have been discovered, expect potentially aspartame. i haven't tested it again yet because i shouldn't be ingesting that anyway. i supplement my diet with fruit and veg juices to ensure i'm getting nutrients.

i don't crave anything. maybe once or twice a month i crave meat, usually a well done burger or a good steak. nothing seems to upset my stomach, but i don't really want to put anything in it but bland stuff - pasta, pretzels, corn tortillas. i eat veggies with a little dip or hummus. apples. i haven't had any real cravings except for meat since i started methotrexate. i never know what to make for dinner because i just don't 'want' anything. awesome husband @_antgas asks me about going out for dinner and i just don't know or care.

i've had trouble with my pain levels. when you take that rapid thingy at the doc's office - the 1-10 scale. i never know how to answer it and i found something excellent on tumblr the other day...

0 - Pain Free

1 - Very minor annoyance - occasional minor twinges. No medication needed.

2 - Minor Annoyance - occasional strong twinges. No medication needed.

3 - Annoying enough to be distracting. Mild painkillers take care of it. (Aspirin, Ibuprofen.)

4 - Can be ignored if you are really involved in your work, but still distracting. Mild painkillers remove pain for 3-4 hours.

5 - Can’t be ignored for more than 30 minutes. Mild painkillers ameliorate pain for 3-4 hours.

6 - Can’t be ignored for any length of time, but you can still go to work and participate in social activities. Stronger painkillers (Codeine, narcotics) reduce pain for 3-4 hours.

7 - Makes it difficult to concentrate, interferes with sleep. You can still function with effort. Stronger painkillers are only partially effective.

8 - Physical activity severely limited. You can read and converse with effort. Nausea and dizziness set in as factors of pain.

9 - Unable to speak. Crying out or moaning uncontrollably - near delirium.

10 - Unconscious. Pain makes you pass out.

it reminded me that i'm justified in 6-8. i thought i didn't get dizzy or nauseous from the pain, but now i'm not so sure. i do get dizzy sometimes on bad days.  i don't take painkillers.  i don't even take advil right now because i don't know what my liver is up to.  i have pain in the general area of my liver and will have my most recent test results tomorrow or saturday.  my pain does not make it hard to concentrate, but i think that's because i am focused and good at compartmentalizing pain.  my pain does interfere with my sleep.  and as for 8, my physical activity is very limited.  i can read and converse without effort but occasionally sharp pain causes me to stop.  i have a small stockpile of medications that i shouldn't have but i kept - klonopin (won't help with the pain but will knock me the f**k out), oxycodone, cyclobenzaprine.  i never throw out medications because i'm afraid no one will give them to me again.  as a recovering addict, none of these medications are easy to come by unless your doctor trusts you a LOT.  mine does - for now.  i'm terrified that will stop though and i'll be seen as med seeking.  

my hands and feel have these odd feelings.  kind of cold or hot; full, pressurized feeling.  it's not like swelling that i'm used to.  i'm wondering if it's more severe swelling than i've experienced.  my left wrist particularly has been bad.  it is hard for me to roll over in bed.  it is hard for me to support myself on my hands or knees.  it is hard to get up and down off the couch, the bed, the toilet.  my left shoulder is very painful and i feel like it's radiating into my back, which confuses me - is the shoulder pain due to rheumatoid disease or is it a muscle issue?  

i am very tired.  all of the time.  the constant headaches don't help.  sometimes i feel a touch of vertigo, i think.  kind of like when you're really drunk and your head feels a little light and swimmy?  i don't know what that's about, but it's my new normal now.

i do not like my new normal.  so many people tell me it gets better, i'll find a good medication.  i don't believe them.  i spent most of my life wanting to die, wanting to kill myself, struggling with depression and anxiety and ptsd and suicidal obsessions and so many things.  just so much.  i spent twelve years on and off medications until i found something that helped with my symptoms.  i didn't want to die.  i sometimes want to now.  it would be easier.  i know in my head and heart that it isn't true, i know that i won't kill myself.  i know i won't.  but it doesn't mean the idea isn't appealing.  that's part of my disease.  i do not know how people do this without medication or without relief.  i do not know how people go through medication after medication until they find something that works.  i do not know what i'm supposed to do to have a quality of life that is more than sitting on the couch watching cartoons and drinking diluted green tea.  dragging myself out of bed to intern for a job i'm going to love.  experiencing pain while driving, while food shopping, while typing, while sitting still doing nothing.  i just don't know.

cookies and pizza. yum.

today is probably one of my worst rheumatoid disease days yet.

i am calling it rd, rheumatoid disease, now.  i think that using the word arthritis gives people the wrong idea.  it's not 'just arthritis'.  

i participated in a twitter chat last weekend (#rheum).  it was kind of nice to see other people have the same questions, concerns, and feelings that i do.  it's always nice to have your feelings validated.

but today i woke up with so much hand pain.  my hips hurt, my head hurts, my ankles and feet hurt.  but OHMYFUCKINGGODS my hands.  my fingers, my wrists, my knuckles.  all of it.  

in happy news, yesterday a tiny person and her mother knocked on my apartment door looking to sell girl scout cookies.  YES PLEASE.  but $4 a box?  when i was a brownie selling cookies for the first time, they were $1.50 a box.  guess i'm older than i thought i was.  two boxes each of thin mints (for awesome husband @_antgas), samosa, and savannah smiles.  i love lemon flavored things.

it snowed a bunch yesterday.  the roads weren't too bad today, and it got warm enough that some of the snow melted.  but yesterday it snowed on top of snow left over from last week's snow storm.  oh, and it's going to snow again overnight tonight.  so when i wake up tomorrow morning, there will be snow from three snow storms piled up all over the place.  amazing.  and it's barely february.  we have months of this shit left.  my birthday is mid-march, and i was born during a blizzard.  i've had to cancel or change birthday plans numerous times because of snow.  fuck.

i wish i had something more useful to say.  i went to my internship today, i remembered to eat, i voided my bladder numerous times.  i'm feeling sleepy and achy and lazy now, and i'm planning on ordering pizza for dinner and crying.

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?

burning my candle at both ends

but i usually have yankee candles in jars, so they don't have two ends.

i've run myself ragged this holiday season.  monday - interned, shopped, went wedding dress shopping.  left the house at 8:30, got home at 9:30.  tuesday - finished up a bit of shopping, cleaned the apartment, left at 5:30 to go to the family xmas eve.  home by 11.  xmas morning - up at 8am, had family over for breakfast, went to my in-laws, went to my aunt's, home by 10:30.  yesterday - interned, did a bit of shoe shopping, went to my in-laws for leftovers (a christmas tradition), home by 8.

i had planned for today, friday, to be a day of rest.  i didn't set an alarm and planned on sleeping until i woke up naturally, then taking it easy around the house (it's almost noon and i'm still in my pjs with no bra on).

what i DID NOT plan on was hellish indigestion that woke me up three times during the night, requiring a total of 10 tums and it barely helped.  around 4am, i finally got out of bed and dragged an extra thick pillow out of the closet and spent the next three hours sleeping sitting up.  then i snuggled back down and slept for another hour or so.

so my long, luxurious night of sleep turned into tossing and turning, interrupted sleep, lots of tums and yucky indigestion.  horrible, horrible.  so angry.

which is why i'm still in my pjs watching television and relaxing.  and planning on doing so for most of the day.  with intermittent napping.

i started on enbrel last week.  i inject myself with this biologic medication once a week; my second injection was on christmas morning.  i haven't noticed any improvement yet, but i haven't noticed any side effect either.

my internship is going well.  i've started sitting in on assessments and groups, and helping write up group notes and things like that.  i'm still in the hiring process for the other per diem counselor job, the one i get paid for.  hopefully by the second week of the new year i'll be ready to go there.  and making a few extra bucks on the side.  it's nearly impossible to be a single income household on long island and do things like eat.

forget about the fact that my medical care, even with insurance, is starting to take a toll on our finances.  i started getting my methotrexate and folic acid prescriptions filled by my insurance company's mail order pharmacy, which cuts that cost in half easily.  i got three weeks of enbrel samples to start with, and will be filling that prescription through my insurance co's mail order speciality pharmacy.  no idea how much that will cost.  already nervous about that.

but life moves on.  as marvin says in hitchhiker's guide to the galaxy, 'life.  loathe it or ignore it, you can't like it'.  i mean, i like it.  but whether or not you like life, or appreciate life, or hate life, it goes on.  and you can be either a human BEING or a human DOING.  so, you know.  get on that.

sorry, i've been napping.

i wish i could tell you the past two weeks have been a whirlwind of not slowness.

but, you know i'd be lying.

last week i started my internship!  exciting.  i have my own office (which i may have to share with another part timer, but still).  it's a CORNER office with a big desk and chair and whatnot.  it's pretty bad ass.  it's a private catholic organization (and i didn't even burst into flames) and the part i'm working with is the chemical dependency unit.  the location only handles outpatient substance abuse issues - some are from dwi/dui, some are mandated by probation, some just need help.  i sat in on my first assessment on tuesday and it was a 24 year old kid who had an opioid problem.  his mom told him either he had to leave or get help - he chose to get help.

i'll be interning for 12 hours a week.  the new new york state rules for mental health stuff that went through june 30th of this summer mean that my 300 hours of intern experience must be spread out over SIX DAMN MONTHS.  stupid crap.  so that's about 12 hours a week.  we were hoping to bang out my 300 hours in a couple of months but the state stopped that.

but it leaves me time to work a job that will actually pay me.  i had been working with my dad a day or two a week out in queens (a two hour commute each way) which i love doing but i do not love the commute.  especially since my ra diagnosis and starting the medication i'm on.  the fatigue is horrible and more than once i've been afraid i might fall asleep at the wheel.  in the middle of the day.  damn it.  last week i interviewed for a per diem counselor job with another non profit here on long island where i'd work in houses for mentally ill adults who are working towards independence.  i was offered the job and now will be starting the long-ish road of getting hired.  the new york state office of mental health has really tightened their standards for hiring, which is good, but annoying when you're trying to get hired.

school is driving me slightly nuts.  it's not that i don't have enough time to get my schoolwork done, it's that i'd rather spend that time napping.  i do not know how to quantify the amount of time i want to sleep.  it's more than 10 or 11 hours a day.  if i don't have to move, i don't want to.  i get tired enough and just lying on the couch staring at a cat is restful enough for me.  it's disgusting how much i don't want to do things.  i mean, i do - i cleaned the apartment (with some help from awesome husband).  we went holiday shopping.  i cooked.  i keep wanting to be more productive and get things done, but my body is like NO WE ARE TAKING A DAMNED NAP AND YOU ARE DOING NOTHING.

we decorated for the holidays over the last two weekends.  we're not christian so we don't 'celebrate' christmas as, you know.  the birth of jesus.  which it isn't.  jesus wasn't born in winter.

ANYWAY.  we bought a little 4" tree and put our fave ornaments on it.  we put some lights on the porch and got a 3.5" inflatable santa yoda.  it's nice.  i like to call christmas 'traditional american familial holiday' because that's how we celebrate it.  i like seeing family and giving people gifts and enjoying time with people i love.  i've done a lot of my holiday shopping online.  i REFUSE to give any of my holiday money to any shops that are open on thanksgiving.  (i do not include grocery and pharmacy stores in this because they have always been open on t-day.)  it's mostly about the other types of stores - macy's, kohl's, target, kmart, sears are all on my no-no list.  i was bummed that macy's was open on thanksgiving - i did a huge portion of my holiday shopping there last year because they were closed on turkey day.  not this year.

we decided to give 'the kids' cash.  the kids are my 17 year old twin sisters and our nieces and nephews (age range is like 10-24).  i saved a bit of money each week from like october to cover them.  and then i've been trying to buy something every week to cover the stockings and whatever.  i'm always in charge of stockings since my mom died.  chocolate marshmallow santas, bits of candy, tiny gifts - i get all types of shit to put in the stockings.

the biggest issue i'm having is finding a damn playstation 4.  i told awesome husband he could have one and made him trade in all his xbox crap (he has two games to hold him over) so we could put it towards a new ps4.  and now i can't find one.  fuck fuck fuck.  and remember, i can't buy it certain places - i'm planning on buying it from gamestop because they didn't open until 12am on black friday.  yes, it's practically opening on thanksgiving, but it's technically black friday.  they do midnight releases all the time, i'll give them that one.  they haven't had them in stock for weeks.  the other day awesome husband called one store and they were like, order it online - they're shipping by december 16.  i got on the website and - nope.  so today i'll be calling a fuckton of gamestop locations to figure out what's up.

and i'll be cooking.  napping.  watching american dad.  gathering info needed for my new per diem offer.  you know, just steph gas being steph gas.

a continuing whirlwind of slowness and crap

i know, it's a stupid title.  i can't always be witty and awesome.

well, i can.  and i am.  but i'm just not really putting in the effort right now.

my leg is *still* swollen, but i've been able to like, you know.  walk around.  a bit.  it still hurts.  i'm shocked that a damn tattoo can cause this kind of problem for this length of time.  i've put myself on prednisone to see if it helps (it really hasn't) so i'm going to taper off that again.  it hasn't really helped my RA either.  hmm.

now tuesday i had an appointment with my rheumy.  she said my hands and fingers were A LOT more swollen than last time.  oh, okay.  i guess because i see them every day, i don't notice it.  she said that means the RA is progressing.  i told her the pain and everything was still there.  so she decided to up my methotrexate (the chemo medication) and prep me to add a biologic next month.  you see the commercials for biologics on television: enbrel, humira, etc.  that's freaking me out a little.  but we'll figure it out.

then my paid job turned to an unpaid internship.  the organization that hired me is willing to let me do my internship there but internships are not paid.  it's good that i'll still be working there and getting my hours in and whatever, but i kind of wanted a job.  i do have an interview for a per diem counseling job, so that might help.

i really wish i had funny or insightful things to say.  i don't.  i've been pretty lame for a couple of weeks.  i've been really headachy and still fatigued and tired and now this past week my leg has been, ugh.  just horrible.  so i don't want to do anything.

awesome husband @_antgas and i have the entire weekend off together with minimal plans - dinner with his parents one night.  that's it.  i'm really looking forward to that.  just a bunch of down time.  hopefully my leg stops hurting and we can snuggle or something.

the slowest whirlwind ever

my whirlwind week/week and a half has been slow.  i've spent a large part of it sitting on my ass on the couch, some time at my desk, a few hours in the car, and two days at work with dad.  but a lot has happened.

well, not a lot.  it just feels like a lot.

so, at our last meeting, i had received my flu shot and met with my advisor.  i had no adverse reactions to the flu shot - just like a little knot under the skin that was a bit sore for a couple of days.

and then i reached out to the woman at school who sets up the internships.  and apparently in june new york state changed EVERYTHING in the mental health systems.  so now i can't take all three 'classes' for my practicum in one semester.  it's 300 hours and now we have to take them spread out over six months.  so two classes in spring and one in summer.  IF i can get into an internship.  because apparently it's hard to get into one.  fuck.  FUUUUUCK.

now the big problem here is the job that i accepted wants me to have my training certification ASAP so i can do billable work (like actually counseling people).  i can't get that certification until AFTER my practicum is complete.  so even if i can start right away in january, i won't be cert'd until june.  now i don't know what is going to happen.  but if you remember, i had turned down a full time reception job at another substance abuse center for this part time counseling job.

i'm trying not to stress about it, but part of my feels like dropping out of school and just getting another desk job.  it's like, why bother?  it's so expensive and it's such a hassle and, to be honest, i'll probably make more at a good desk job than as a counselor.  compared to my last desk job (data entry, customer service, reception) the counseling job is like a $5 an hour pay CUT.

yeah.  so i'm going to be making less money when i have to pay back all of my student loans.  excellent.

now on friday i had a tattoo appointment with one of my artists who moved to north carolina.  he does guest spots up in new york a few times a year, so i got in on that.  i had a small fairy that i wanted covered up because i want my right calf to be all traditional style tattoo work.  he got to work with a handful of sharpie markers and drew something up.  right on my leg.

this is just sharpies.  he drew it freehand.  and you can kind of see the black fairy with blue and purple wings that we covered up.

 now, i was 'in the chair' for three hours (i wasn't actually sitting.  i was lying down on my stomach with my leg out.).  it took a little short of an hour to do the outline and then about two hours for color.  he kept talking about putting a color splash behind it, but about 2:40 into the session i was hitting my wall.  this is what i ended up with...

follow my artists' awesome work on instagram @jonronzka

 i'm very, very happy with how it came out.  i still want to put a lighthouse somewhere on that leg, and i'm considering a compass and/or an anchor and/or a ship's wheel too.  but considering what happened the next day, i'm not too sure now.

some swelling is normal.  but omfg i am swelling A LOT.  it is so fucking painful to put my foot down after it's been up; all the blood rushing down is like a searing pain.  and then walking on it is horrible.  it's all the swelling.  here's what my feet look like today....

pretty easy to see which leg was tattooed.  i like how my right foot has absolutely no definition.  but i have a sweet ass cankle going on.  so, there's that.

generally, you don't ice tattoos.  some people think it's bad for the healing, some think it's bad for the ink.  it's just not usually done.  and seriously, on a tattoo this size with this much swelling, i don't think it would help.  i kind of feel like i want to prick holes in my foot and ankle.  it actually feels like it's full of crap and it's pressurized.  i still have redness around the tattoo itself - totally normal for me.  my last calf tattoo had redness for almost two weeks.  i have sensitive skin.

my inner calf tattoo took about 1:45 and i didn't have this much swelling.  none of the smaller tattoos i have on my calves swelled much at all.  so i think the moral of this story is 'don't have more than about an hour and a half of work done below the waist at a time'.  it's just too much trauma and irritation to my skin.

i was very interested to see how the healing process went since i'm on methotrexate (chemo).  my tattoo artist on long island did some touch up work almost three weeks ago and the healing seemed to go pretty normal for me.  maybe a teensy bit slower than normal, but my normal is so fucked up anyway.  i think it healed well.  which is nice because that was her test spot - hopefully now she can finish up my forearm.  we just have some touchups to do, a small starfish, and then background.  i'm very excited for it, but it will probably wait until after the holidays.  maybe.  we'll see.

i'm starting to get a bit nervous for the holidays.  we've saved up money each week to give to the 'kids'.  we have my twin sisters, two nieces, and two nephews who we still give gifts to.  they're getting cash.  so now i have to focus on buying something each week for one of the remaining people: my brother, my soon to be sister in law, my dad, the in laws.... oh, and maybe a little something for awesome husband @_antgas :)

adjusting to a new 'normal'

i don't know that it will ever happen.

i've had a rough week.  i took my third dose of methotrexate last sunday.  i didn't experience much nausea at all this week - which is nice - but pain.... oh my.  i have numerous joints involved today:

• toes
• ankles
• hips
• shoulders
• wrists
• all knuckles

and some kind of pain on my right side.  like my rib cage.  i'm not sure if that is RA related or medication related or whatever.

it's a special kind of pain.  not that i've experienced every kind of pain there is.  but i smashed the bones in one of my toes, ripped a tendon off the top of one foot, had my gallbladder try to kill me, herniated a total of 5 different disks in my back and neck...  and some of those hurt a lot.  the smashed toe after a car accident was pretty bad, but it also included three herniated disks, whiplash, bruised my entire foot and ankle, my face was attacked by an airbag, and i developed PTSD.  so there was a lot going on there.

this pain, the joint pain from RA, it's different.  like, if i lie down on a comfy bed, properly supported and with a pillow under my head - everything hurts.  just sitting hurts.  standing hurts,  the act of typing doesn't seem to make anything hurt more.  i can clean the house and although the act of cleaning may cause some pain in joints (i.e.: hips while vacuuming), i don't feel any worse after doing it.  

the other 'fun' thing is the sudden OW that occurs.  my ankles weren't bothering me that much yesterday.  i stopped at a couple of stores, spent maybe a total of 25 minutes on my feet or walking. i get to the grocery store, do some food shopping, and BAM.  halfway through my shopping trip, my left ankle was like HOLY FUCKING GOD STOP WALKING OR I WILL EXPLODE.  

so i came home, unpacked shit, and took a nap.  which is about the story of my life.  i do something, something hurts me, i find a way to take a nap.

i'm supposed to clean the house today and go to school tomorrow.  i don't know if either of those things is going to occur.

apparently, this is 'normal'.  this will be my new normal.  i will be achy.  i will be tired.  i will get pain out of nowhere.  and i'm 33 years old.

and i'm fucking angry.  why is this happening to me?  why do i have to put up with this?  it is not fair.

i sound like a kid.  'it's not fair!' 'i don't wanna!'

i believe in karma.  and i know i wasn't always a good person.  but i don't necessarily believe that being a bitch gains one RA.  my maternal uncle and cousin (who is younger than me) have RA.  so much of it is genetic.  one of the most annoying things (to me at least) is how healthy awesome husband @_antgas and i had been living.  we eat meat maybe twice a week (unless it's bbq time - yummy) and once is usually fish (sushi).  we cut out SO MANY processed foods.  i still like morningstar veggie burgers because they taste good and are an easy dinner option.  but i didn't buy the damn cheeze its after reading the ingredients.  we started juicing and incorporating more fresh fruit and veg into our diets.  aside from white sugar (which i'm almost out of and am planning on replacing with a better option) we barely have any white food in the house - we very rarely buy anything with white flour (read: bleached and enriched, a process that steals all the nutritional value from the grain and then chemically adds the nutrients back).  we work very hard to ensure we don't eat anything with high fructose corn syrup or hydrogenated oils (both are heavily processed ingredients).  fucking hell, i STOPPED DRINKING DIET COKE.  

giving up diet coke was the ONE thing i always said i'd never do.  i stopped smoking.  i stopped doing drugs.  i stopped cutting/self injuring.  i stopped drinking alcohol.  

and then i gave up diet coke.  i have drank a couple of cans of diet dr. pepper in the past couple of months because it's what dad had at the office.  but i used to drink like 2 liters of diet coke a day.

i try not to buy things with fake sugar because it's processed.  but that's very hard - so i try.  and then i'm eating extra calories because replacing fake calorie free sugars with real sugars means more calories.  it's a game of balancing - would i rather have more natural calories, or fewer chemical-laden calories?  i choose more natural calories.  and i haven't gained any weight - but i have not lost a pound.  so everyone who says 'drinking diet soda makes you fat' can kiss my fat, no-diet-soda-drinking ass.

i had already adjusted to that 'new normal'.  working on eating healthier, more whole foods.  and now this.

what the fuck am i supposed to do with this?  

i guess the positive is that my pristiq is still working.  as upset and negative as i get, i'm not as crazy as i used to be.  some of the obsessive thoughts have come back - something i haven't told anyone yet.  i have thought about killing myself, but that's part of obsessive thoughts - not something i would act on.  which is the most annoying part about my obsessive thoughts.  it's stuff i know i wouldn't act on with my rational mind.  i know it.  but my crazy, irrational mind gives me these great reasons to kill myself, or hurt myself, or whatever.  the pristiq has really, really, really helped that.  that used to be my 'normal': listening to part of my brain try to convince me to kill myself.  and i would just try to ignore it or block it out with recreational drug use.  a bit over a year ago the obsessive thoughts started again and we increased my pristiq.  i don't think i want to do that again because i'm pretty sure that the reason the obsessive thoughts are back is the stress with my recent diagnosis.  so i'm waiting it out and trying to stay positive. 

it's not easy.

but i'm working on it.

today's issue: cleaning the house.  i'll attack that posi posi posi and maybe treat myself after with something yummy.  maybe like zucchini chips.... hmm, maybe i'll make them and share the recipe!

in the meantime, check out my instagram @stephgas to see photos of the cats in their halloween garb.  follow me on pinterest @stephgas.  and follow me on tumblr (guess what my handle is there?)

positivity?

it's so hard to remain positive sometimes.

you may remember in one of my recent blog entries i talked a little about being diagnosed with rheumatoid arthritis - RA.  i was happy and sad about being diagnosed.  happy because now we know what's wrong with me and can try to treat it to alleviate the symptoms.  sad because i don't want to be on an immune suppressor forever.  or even not forever.

now that my rheumy knows how advanced my RA is thanks to the ultrasound, she wanted to start me on medication.  we discussed it on friday over the phone.  i'm going to take methotrexate and a folic acid supplement.  she also warned me to use two forms of contraception because you do NOT want to get pregnant on methotrexate (i let her know that isn't a problem any longer).  dr. rheumy called in the prescriptions and i figured i'd pick them up on saturday.  just didn't feel like it on friday.

of course, i started googling things.  and i probably shouldn't have.  but i found out that methotrexate is a chemotherapy drug.  it's used to treat people with cancer.  it's a cancer drug.  do you get it?  because i didn't at first.  i kept checking other websites, thinking that one must be wrong.

it's.  a.  chemo.  drug.

i started checking some RA message boards to find out people's experiences with methotrexate.  people on a lower/similar does than i'm going to take have lost their hair.

i kept searching for info.  i found an excellent website called RA warrior.  with an info page that says the day you're diagnosed with RA, your mortality risk doubles.  it also says that studies show people with RA have a 10-15 year SHORTER lifespan.

so, i was starting to get a little depressed.  i mean, more than normal.

i knew that RA was a serious disease, but i thought it was just, like, a disease.  like you take pills and you exercise and everything will be fine.  i didn't think that it was this far reaching.

i should have.  it's an AUTOIMMUNE DISEASE.  yes, RA specifically seems to attack the joints.  but it's your own immune system attacking your body.  other body parts can be involved; it is a whole-body disease.

i'm terrified of taking my first dose.  i was thinking about putting it off indefinitely.  i thought about going and getting rip roaring drunk tonight and then taking the pills another day (i haven't drank in almost 9 months).  i thought about saying 'fuck it' and just dealing with it.

until awesome husband @_antgas said something along the lines of 'and be in a wheelchair by the time you're 40'.

oh, well then.  good point, i suppose.

so after the walking dead premier tonight (if i make it through it because i've been quite sleepy) i'll be taking my first dose of methotrexate.  i'm trying to stay positive and trying to focus on the good, but it's been pretty hard.  most people say the first day or two (or four for some people) after taking the methotrexate are bad - it's hard to get out of bed, eat, bathe, anything.  here's hoping it's not too bad for me.  maybe the worrying will be worse than the actual side effects.