obsidian ribbons

this is difficult

Sun, 21 Apr 2013 11:46:45 +0800

my inflammatory markers are high. so MTX has been increased to15mg, and sulfasalazine 500mg BD has been restarted. i have been started on lithium by my psychiatric team, and so ALL NSAIDs except sulindac are contraindicated. no more Celebrex for me, nor diclofenac and meloxicam. worst still, tramadol is a big no-no.

i don’t know what to make of this. i hope my liver and kidneys don’t throw a tantrum again. if not i’m back to zero again.

flares and more flares. *aargh*

hips

Sun, 07 Apr 2013 14:48:38 +0800

i hate it when both my hips flare.

the likelihood of one to flare is small. i don’t get how both get to flare together. *sigh*

so much stiffness when it happens.

from help to hurt

Wed, 20 Mar 2013 23:11:05 +0800

taking Celebrex (celecoxib) twice a day was a wild idea. i have only ever taken it once a day, 200mg in the morning. but me being really desperate, i looked up drug literature, and found out that it can actually be taken twice a day, 400mg in total. i was hoping that taking it twice a day would help with my flares round the clock, rather than to have to start flaring late evening, sleep with the flares then wait for the morning dose to kick in.

it worked. it wasn’t totally ideal. but it helped.

but now i am in the process of spiting myself (basically just hating on myself), and have stopped all the Celebrex. i guess it is also in anticipation of a knee ultrasound next week. i really HATE going for diagnostic procedures flare-free, which happens to me ALL the time, even with rheumy appointments.

flaring like mad, and starting to regret.

left knee ultrasound next tuesday. i’m depending on it with my life, because this knee has been arthritic at least since i was 3 years old. if it yields nothing, then good game for me.

my apologies

Sat, 09 Mar 2013 09:02:00 +0800

i’ve neglected this blog for far too long. i think blogging regularly here is in order again. it’s the only way i can keep track of my RA. i need to put dates down though. if not i’ll be confuzzled by all the entries here.

updates:

my DMARDs (SSZ+MTX) were stopped a few months back due to transaminitis (again i know). my MTX just (only a week ago) got restarted. i have a tongue ulcer already.

how i’ve coped with the flares? i don’t think i was coping. i let the pain and swelling sit in my joints and hurt. i take an NSAID and a strong painkiller, but to no avail. i’m rather resigned.

i will blog here more frequently. it will mostly be about my RA flares, disease activity, the things that help and the things that don’t, and anything else.

xoxo

oh my knee

Fri, 13 Jul 2012 23:01:49 +0800

my left knee has been flaring every single day. laterally at my meniscus. posteriorly at my popliteal bursa. anteriorly at the entheses in my patella and/or tibia.

an ultrasound of my knee is in order. but i don’t even know when i can get it done.

my light grey knee support/brace has been very helpful though.

aargh.

am-tee-ex

Fri, 06 Jul 2012 20:26:06 +0800

gonna restart on MTX tomorrow. my mouth ulcers have yet to resolve, and i know MTX will exacerbate matters in my mouth. but heck. i’m desperate. i just need to remember to take folate on Sunday.

How old are you? How long have you had RA?

Wed, 04 Jul 2012 23:20:10 +0800

I am now 22. I was only officially diagnosed with RA when i was 17, but i already had symptoms for as long as i’ve lived (i.e. since i was a toddler). My rheumy did tell me that i had JRA when i was younger. So technically, 22 years?

giving in

Mon, 02 Jul 2012 20:14:07 +0800

i saw my rheumy today, and as luck would always have it, i was having a really good flare-free day. but since seeing her earlier today, the flares are coming back. what’s new?

i can only sigh in resignation.

i was almost begging my rheumy to give me something more. and so i managed to bargain for methotrexate. i’m almost jumping for joy on the inside.

i hope the addition of MTX will quell the disease activity more.

please.

i bought my first walking stick, having procrastinated buying one for a really long time. i didn’t want to give in to my ‘weakness’, and i didn’t want to admit that it would benefit me. but the facts are there.

i need to use it if i’m going to be trying to be as physically active and bullish as i can. it’s the least i could do for myself.

this is change. and i need some getting use to.

08062012

Fri, 08 Jun 2012 20:50:08 +0800

HAPPY BIRTHDAY RHEUMY ♥ !!!

i haven't posted in awhile

Fri, 08 Jun 2012 20:44:11 +0800

but of course it doesn’t mean that i’ve been doing well.

i’ve since been de-escalated to a single DMARD. hydroxychloroquine. it was like a ‘might-as-well’ thing with my rheumy, to let my liver rest, since i was doing ‘well’ without them after having the transaminitis.

i’ve not been doing ‘well’, honestly. HCQ is like a sugar pill to me. it doesn’t do anything for my disease process and progression. i’ve even fallen back on my compliance to it.

i’ve been getting frequent flares in my wrists, MCP joints, knees, shoulders, and of course the niggly pains here, there and everywhere- CMCs, PIPs, hips, ankles, MTPs, bursitis in all possible areas, sacroiliac joints, back etc.

i refuse to take Celebrex. or prednisolone.

i just won’t.

i need to go back to my triple-DMARD therapy. now to convince my rheumy the next time i see her.

sighsies.

good days

Sat, 14 Apr 2012 21:17:30 +0800

i had to have my bloodwork done on a good day, and that means having a normal CRP. my liver enzymes are good. haemoglobin has normalised. high RDW and a still deranged iron panel. i think i might still be iron-deficient even though the anemia is gone.

i’m having flares now.

why can’t these flares happen when i see my rheumy? i always have good days when i see my rheumy, and therefore she never gets to examine my flaring joints.

desperate for a steroid shot in my knee.

good things don't last

Fri, 30 Mar 2012 20:43:52 +0800

my joints are flaring again.

i’m starting to doubt that a real remission is possible.

in all my years with RA, which is really my whole life, i’ve never had one. and just when this near-remission came against all odds (having discontinued ALL RA meds), it went away as quickly.

i think the flares are going to come full on soon, seeing that big stressors are coming my way.

i surrender.

i can feel

Thu, 22 Mar 2012 22:18:33 +0800

this short-lived remission going kaput.

love my rheumy

Wed, 21 Mar 2012 13:57:47 +0800

more and more each time i see her. she’s amazing.

no SSZ and MTX for now, while my liver rests.

remission???

Sun, 18 Mar 2012 22:45:52 +0800

this must be how a remission feels. but with its rareity, i don’t think it’ll last.

funny how this is happening while MTX and SSZ has been stopped temporarily.

it feels pretty good though, not being bogged down by RA’s pain and stiffness.

i hate it

Wed, 08 Feb 2012 22:27:08 +0800

when my hips flare.

that acute awareness of the movement between the ball and socket joint is something i’ll never get used to.

bought

Tue, 07 Feb 2012 20:15:44 +0800

a thumb stabiliser for my carpometacarpal(CMC) joint flares.

i always hear that CMC joint involvement aren’t too common in RA. but what the hell. my RA is out of whack that it finds anything and everything it can attack.

the weird popliteal bursitis, achilles tendonitis, the tarsometatarsal joint involvement, the sacroilitis, the various diffierent kinds of flares in my shoulders which involves soft tissue, the enthesitis.

and everything else that is demanded of RA’s polyarthritis.

i bring a stash of meds everywhere i go.

Tue, 07 Feb 2012 03:13:12 +0800

i bring a stash of meds everywhere i go.

madness

Sat, 21 Jan 2012 20:58:32 +0800

i’ve not been updating this tumblr, and i wonder if i should keep maintaining it. there’s only so much that can be said and lamented about rheumatoid arthritis. and after awhile, it gets pretty stale.

no?

i’d like to say that i’ve been doing fantastic. but the truth is the converse. i wish, and i have never stopped wishing, for a remission. but everytime it seems so close, it fizzles into nothing, and i’m back where i started. again.

everytime it gets better, it gets worse. and everytime i seem to have a better grasp and acceptance of RA, i lose it all.

all over again, girl.

and i’m going mad.

proximal interphalangeal joints

Tue, 20 Dec 2011 14:02:39 +0800

should i be worried that my PIPs are starting to get involved?

unlike typical early involvement of the small joints of the hands, mine seem to be the last.

lucky? i don’t know.