Thursday, November 28, 2013

happy thanksgiving

today is thanksgiving and i do have a bucketful of crap to be thankful for.

  • i have an amazing, supportive, understanding, loving husband 
  • i have three amazing and ridiculous cats
  • i have a wonderful brother and sister-from-another-mister
  • i have supportive and caring family members
  • i (usually) have enough money to pay my rent and bills
  • i am able to eat three (or more) meals a day
  • i am able to afford the medical care that i need for depression, anxiety, and rheumatoid arthritis

of course, right now my leg still hurts from the cellulitis (i'm able to walk on it, though), two of my three cats are fighting while looking at the birds outside, my awesome husband is in the bathroom trimming his ridiculous beard, and i have way more grey hair than i should.  my roots are pretty bad, but with the medical crap going on this past week or two, i haven't had time or energy to have sister-from-another-mister touch me up.  these are minor things.  

will my family care that my roots are bad and i have visible grey?  nope, they'll be happy that i am able to come to thanksgiving this year.  last year i had my gallbladder removed laparoscopically two days before thanksgiving, so i was laid up all weekend.  two years ago, i don't know what was going on but i think it was a pretty lame thanksgiving because three years ago, thanksgiving was horrible.

three years ago on thanksgiving, awesome husband flew up to new york early in the morning to visit mom in the hospital.  that morning, i mentioned to a nurse in the icu that i lived in florida and wanted to fly home to check on things - i was asking when mom might be moved from icu or allowed to leave?  

that nurse quietly told me she wouldn't plan on returning to florida.  she said she'd wait.  and then she called for our doctor.

the doctor took my brother and i aside and explained about the cancer that mom had.  we knew it was lung cancer, we knew it was stage four.  we knew it was in her lung, brain, spleen, liver.... everyfuckingwhere.  we knew it was about treating for comfort, not curing.  we thought we had a few weeks, we thought we'd have christmas.  

the doctor took my brother and i aside and explained that the cancer my mom had was super aggressive.  small cell or oat cell, if i remember correctly.  i could dig out the paperwork, and i will one day, but not today.  the doctor told us that radiation or anything for comfort wouldn't get her out of bed.  this doctor spoke to us gently and kindly, but very matter-of-factly.  

i don't remember his name.

but three years ago on thanksgiving, after leaving the hospital, we went to my mother's brother's house, the house my mom grew up in, and gathered her brother, sister, and their families into a back room.  we shared the news the doctor had shared with us: there was nothing we could do but keep her comfortable.  we were working on getting her into a hospice.  i apologized for dropping in and delivering bad news, but i couldn't stay.  my aunt's extended family was there - i couldn't deal with sitting there and having everyone know my mom was dying in a hospital a few miles away.

we went to my dad's brother's home.  it was just me, awesome husband, my brother, sister from another mister, my dad, my uncle and aunt, my aunt's mom, and i think my cousin was there for a while.  these people all grew up with my mom; even though my parents divorced years before, these people all loved her.  i stayed there and drank way too much with the people who cared about me.  we commiserated, we cried a little, we laughed a lot.

i don't remember the next thanksgiving; i'd assume it was about the same.  thanksgiving will never be the same to me.  the holiday season will never be the same for me.  i still put on the holiday music today, i still try to keep some of our old traditions alive.  but this year, i feel ready to start new ones.

i'm thankful for one more thing today: i'm thankful that i had thirty amazing years with my mother. 

happy thanksgiving.

mom and i on our first cruise - november, 2008

Tuesday, November 26, 2013


it sounds a lot more glamorous... well, not really.  it sounds kind of gross.

but it's what i have apparently.

so remember the last time we spoke? i mentioned my new tattoo.  i'm now twelve days post-tattoo. the swelling has gone down dramatically - it's really not too swollen most of the time.  if i haven't elevated it for a bit, or do too much walking (like on saturday), the swelling is really concentrated around my ankle and a  bit around the tattoo itself.


ugh.  yesterday.

i kept my foot up just about all day and then went to an appointment at school.  putting my foot down was still painful - still a bit of that searing, burning pain as the blood drained back into my calf and foot.  but then the pain like actually behind the tattoo was still there.  over the past week, it was hard to get started walking, but once i started it was pretty painless.

not yesterday.

so when i got home i had a complete nervy b and lost my rag.  i was crying and having bad thoughts and considering a drive to the hospital.  it's not like i'm going to kill myself over a painful tattoo.  but if you're crazy like me and know depression lies, sometimes the lies come out of nowhere and ruin everything.

luckily i have an awesome husband and he helped me stay calm(ish).  i woke up early this morning to go to work and omfg my leg.  my ankle was ridiculous.  my calf, the area behind the tattoo, was killing me.  like really painful, even if i didn't have weight on it.  i thought it would work itself out, so i got ready for work and hobbled to the car.

i made it about 30 minutes down the highway and realized something was not right.  pressing on the accelerator was hurting my ankle.  my calf still hurt.  the pain was pretty bad.  like, bad enough that i was fighting tears.  i decided i had to turn around and do something.  i didn't want to go to the emergency room alone, so i thought i'd try a local urgent care center that just opened.

it wasn't open yet.  it opened at 8am.  it was 7:01.  so i drove home.  and spent probably the longest 50 minutes of my life waiting.

i did not elevate my leg because i didn't want it to feel better and then have to put it down and OMFG SEARING PAIN.  but leaving it down hurt.  that didn't happen yesterday - once it was down and the blood returned to the area, it didn't really hurt at all.  so i was very uncomfortable.  i hobbled back to the car and drove to the urgent care and filled out their paperwork and saw the nurse.  she said, oh, looks like cellulitis.  i was like, what's that?  super nasty swelling?  she was like, basically.  the doctor will be right in.

the doctor came in - he was very nice.  i told him that the actual healing of the tattoo seemed normalish for me - a bit slower than usual.  but the redness and scabbing seemed pretty normal compared to what happened last time.  he poked a bit at the area and started manipulating my ankle.  he said what i was saying almost sounded like a sprain - there shouldn't be that kind of pain, especially this long after the tattoo and considering how much the swelling has already gone down.  he felt the swelling and listened to what i said and considered my RA and the meds i'm on.  he decided it sounds like cellulitis.

so according to webMD and my sister-from-another-mister's mom (who works for her dad who is an amazeballs surgeon), cellulitis is a skin and sub-cutaneous tissue infection.  from the bit of dr. googling i've done since coming home, it seems that my RA medications lowered my immune system more than i expected.  i've never got an infection following a tattoo (it's not very common if you take care of your new tattoo) so what follows is all conjecture.

the swelling was more than normal, but it was a big tattoo and caused a lot of trauma.  i followed my normal after care routine but i think my suppressed immune system meant the tattoo wasn't healing as fast as it usually would, leaving more opportunity for bacteria to infiltrate.  once that happened, my suppressed immune system was not only unable to keep healing my tattoo well, but it couldn't fight off the bacteria as expected.

now i have an infection.  i think it is definitely sub-cutaneous now that i've read some symptoms and what not.  the pain i'm having in the area like behind my tattoo and towards the ankle sounds like it's more than just a skin infection.  and the absolute fuckton of antibiotics the doctor put me on makes me feel like it's way more than just a skin infection.  apparently, cellulitis can become bad enough that one needs to be hospitalized for intravenous antibiotics.

so, does this count as my first RA-related secondary illness?

the urgent care doc said that if it gets any worse OR does not get any better over the next couple of days, i should go to to emergency room.  so if it doesn't get better, i'll be spending black friday in the emergency room.

happy thanksgiving.

Friday, November 22, 2013

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.

Monday, November 18, 2013

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 :)

Thursday, November 7, 2013

what is happening to me?

it's like i'm turning into a monster.  or something.

i'm so depressed most of the time.  i'm not sure i remember the last time i laughed.  all i do is stare at the television, stare at the computer.  think about how much my ankles hurt.  my wrists.  my fingers.  my hips.  my shoulders.  i goof off on pinterest.  i don't really want to cook.  go food shopping.  anything.

i did homework today.  i went to work with my dad on tuesday.  i went to the doctor tuesday night and let him give me a damn flu shot because my immune system is suppressed.  i went to a meeting with my advisor about school.

i guess that's some good-ish news.  i currently have 91 credits (meaning i am a senior. yay.).  after i pass my three classes this semester, i'll have 100 credits and be 28 away from graduation.  next semester i am hoping to do my practicum (300 hours of interning worth 10 credits) and taking one class.  meaning this summer, i'll be a mere 15 credits away from graduation.  that's 5 classes.  and she told me about these DSST tests - like challenge tests.  they cost $130 each and can be worth 3 credits each.  she's recommending i see if there are three or four i think i'd like to take and seeing if the registrar will allow it.

then i'll only need one or two classes.  boom.

i think she recommended it after we talked about my RA for a few minutes.  she said i can ask for extra time to complete my current classes - up to 40 days.  i told her that won't be necessary.  i'm barely working now - i can power through this semester.  then next semester will be homework-and-studying light, and then i might cap myself at two classes a semester.  i'll have to check with financial aid to figure out what the best way to do that is.  but that can wait until summer registration.

i keep thinking i shouldn't even bother.  i mean, i'm already over $40k in debt for school.  i basically have my practicum left before i finish my CASAC (for alcohol and substance abuse counseling) and then just the handful of classes to finish my bachelor's degree, so i might as well finish that up.  i guess.  but then going on for my masters?  what's the point?  who knows how much longer i'll be able to work.  and then how will i pay back the loans?  i don't mean like in a year i'll be unable to work.  but what if i'm disabled by the time i'm 50? 45?  i don't know.  everyone tells me i should go for it.  just finish school and go for my masters and do what i've planned on, what i wanted to do.

but why bother?

and then there's the fact that i feel like no one cares.  and i know people do.  i guess they do.  and this is so stupid to write and i sound like such a baby but i want someone to be sad.  i want someone to be sad with me and mourn the life that i'm losing.  i want someone to realize how much it sucks that my life trajectory has to change so much.  i want someone to commiserate with me, to cry with me, to be horrified with me.  i have one girlfriend who gets it - she was sad with me, she wanted to talk about it, she asked me questions.


so apparently i'm just back to crazy.

Friday, November 1, 2013

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?)