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.

my first week of being a paid counselor!

it was good.  i had four days as a paid counselor and one day as an intern.  i supervised about 8 urine tests (awesome, right?) and lead a few groups.  i did some more decorating in my office.  i have two posi vinyl clings on my walls and moved around my desk and rehabbed that $15 craigslist bookcase for my office.  it came out pretty good and i plan on doing a separate post about that.  with photos.  of course.

awesome husband @_antgas had to travel for work this past week, so it feels like i haven't seen him since last weekend.  he came home on thursday night, we worked on friday, and now today we're thinking of doing some shopping.  it's supposed to be a rainy, icky day for much of the day so we thought being in the mall would be okay.  and maybe we'll spend some time at home just relaxing.  ultimately i have to clean the apartment and do laundry, too, but i have tomorrow as well.

that farm we like to go to is having what they call chick-a-palooza this weekend.  lots of chickens and some vendors and bee keeping talks and stuff like that.  we went last year and are planning on going tomorrow for a couple of hours.

of course, nothing goes as smoothly as we want it to.  up the chain somewhere at work, someone is convinced that i can't do work that we bill medicaid for.  i work for a non-profit where the majority of clients are on medicaid.  like, probably 90% of clients are on medicaid.  so i don't know why someone gave the okay to hire me if i can't do anything billable.  i keep going on all the state websites to find proof from the state that i can do billable work and submitting it to people who should care and they keep not caring.  they're paying me to be an intern at this point.  it's pretty hysterical.

but my supervisor decided to give me two clients yesterday during case conference.  she said that if they still get bitchy about me doing billable work, she'll take them.  but what will probably really happen is that i'll be their 'counselor' and she'll pop in at the end of the sessions so we can bill.  it's just, ugh.  nothing can be easy.

i almost had a breakdown last tuesday because i called my therapist so that i could switch my appointment time from fridays at 10am, since i'll be working, and i was told he had no other availability.  it really threw me because it's hard to find a therapist that i don't hate.  and we've already started working together well; it's been a couple of months.  thankfully one of the other office assistants called me and asked for my availability, juggled some other clients around, and got me tuesdays at 3pm.  i was ridiculously happy.  like you have no idea.  and it's been two weeks since i've seen my therapist and i'm like ugh.  i can't wait until tuesday.

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.

cellulitis

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.

yesterday....

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.

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.

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.

rheumatoid arthritis

i have a fancy recipe blog all set and ready to post.  photos uploaded, things tagged, deliciousness ready to send your way.

i don't think i've harped on too much about my body aches and pains, but this post from last month should cover some of it.  the doctor initially said it wasn't RA because of the knuckle involvement.  when we got the results of the first round of bloodwork, my inflammation levels were higher than normal and i had a vitamin d deficiency, which *could* cause some joint pain.  she decided to put me on prednisone and ordered another blood test called vectra da which tests for specific protein markers for rheumatoid arthritis.

the prednisone helped, while it was over 5mg a day.  once i dropped it down as directed, everything came back in full force.  i didn't even realize how much it had been helping until then.  i went back today for an ultrasound 'event'.  they have an RA specialist from the midwest out teaching the rheumy doctors in the practice how to use ultrasound to help diagnose special cases.  my doctor called me because she thought i'd be a good candidate.  i know now that she thought i'd be a good candidate because she wasn't 100% sure where to go with me.  my vectra da score came back at 51 - which is high and shows a lot of disease activity.  my rheumatoid factor is negative, but that can happen early in the disease.  once she did the ultrasounds, she's 100% sure i do have RA and wants to speak with me tomorrow about starting on medication.

rheumatoid arthritis is an autoimmune disease.  basically, it seems that my immune system has identified  my synovium - the membrane that lines my joints and helps protect them - as something to destroy.  which means my own immune system is trying to kill my joints.  after time, the joints wear down and become deformed, which is stupid.  so now they're going to try to put me on a DMARD - something that suppresses my immune system.

so my own immune system won't attack my joints, but it will leave me susceptible to other things.  like, you know, the flu.  colds.  illnesses.  viruses.  etc.  damn it.

i'm a little pissed.  i'm sad and scared too, but mostly kind of angry at my own body for betraying me like this.  which is stupid.  but not that stupid.  because it's like HEY BODY WHAT IS THE BIG IDEA OF FUCKING ATTACKING ME??? AREN'T WE SUPPOSED TO WORK TOGETHER?

at least i know why i've been so achy and ouchy and tired and whatnot.  that counts for something, right?  at least now i know what we can try to do to make it better.  i guess that's all i can do.

bah.  i think i need a nap *yawn*....

i'm going to remake "all you wanna do is dance" and replace "dance" with "sleep"

obscure blog title, i know.  it's a great billy joel song, check it out:

one of my favorite billy joel albums.  who am i kidding, i love all billy joel albums.

however, my point is all i wanna do is sleep.

i haven't talked a lot about this pain i've had.  since march, my left wrist has been bothering me.  so have my hips, but not too badly.  i told my doctor and he said my hips could be caused by my weight and gave me some basic exercises to do for my wrist.  which i did, and they didn't seem to help.  i figured it was a touch of carpal tunnel.  i decided to wait and see after i quit my desk job.

so i quit my desk job in june and spent a couple of weeks babying my wrist.  it didn't get any better, but my knuckles really, really started bothering me.  then one day in july i woke up and my right wrist and knuckles hurt.  i called an orthopedist and went for my appointment.

i wrote all my info down and whatever they wanted and waited two damn hours to be seen.  the doctor palpitated my left wrist, wrote off my right wrist, and ordered xrays for my left wrist.  he said it looked fine.  he was ready to send me off when i asked about my knuckles... which he had completely forgotten about.  after ordering another round of xrays for my knuckles, he told me there was nothing wrong with them either.  he said that there was nothing wrong with my bones and told me to wear a wrist brace for a month and see if it got any better.

i wore it, i babied my left wrist.  i ended up putting another brace on my right wrist because it hurt so much.  after a month went by, everything hurt more.  i cancelled the followup with the orthopedist (saving my $50 copay) and called a rheumatologist.  they fit me in a week later - which was this past tuesday.

i loved the rheumatologist.  she asked so many questions about my medical history.  she asked so many questions about my pain and where it hurt and how much it hurt - like none of which the ortho asked about.  we even talked a bit about how broken the healthcare system was.  she then popped me up on the table and poked at numerous spots on my body: my neck and throat, upper chest, hips, back, knees, wrists.  i had tender spots that i hadn't even noticed.  but i was very upfront about what hurts and how much it hurts: wrists, knuckles, hips, upper back, lower back, and how fucking exhausted i am all the time.  she told me it definitely wasn't rheumatoid arthritis because the fingertip knuckle is never involved in RA (i was thinking it was RA until that point).  she mentioned something as simple as a vitamin or hormone deficiency could cause joint pain like this, or something like psoriatic arthritis.  no one in my family has been diagnosed with psoriasis though, so not sure how likely that is.

she ordered a bucket of blood tests (and they were able to draw blood in the office, which i love) and scheduled a followup in two weeks.  i've looked at some of the symptoms of psoriatic arthritis and fibromyalgia, and both look like possibilities.  i just can't wait to find out what's wrong with me so that we can treat it and i can stop wanting to sleep all the damn time.

today, my shoulders and upper back, wrists, hips, and knuckles still hurt.  but in addition, the rest of my back, thighs, and knees are really bad today.  i have no idea what is going on, but i really need it to stop.  i called out of work this afternoon because i just can't do it.  i can't get comfortable.  i ate a bunch of advil earlier today and am considering breaking out my stockpile of painkillers because omfg this hurts.

anyway, sorry for the pity party.  i just am at the end my rope today.  and i have to sit in school all day tomorrow so, there's that.