October 19, 2014
one of the most important things in my life is to heal. to heal others and to heal myself. and what happened in the last 2 weeks was about healing:
in the debacle (at least in my mind it was one) about my treatment for my RA and fibromyalgia, i lost patience with myself and with everyone. honestly, i didn’t think i’d be triggered just like that. it wasn’t instantaneous though, the realisation. it was this slow sinking feeling through the rest of the day that i was feeling when i jerked. i had hit the bottom. it was that insidious that day as a trigger, surely more insidious when coping by the years. i couldn’t heal. or at least i couldn’t even bluff myself into feeling that i am healed (in other words, pain-free and symptomless).
i understand RA and perhaps fibromyalgia. oh don’t we all. how do we barricade ourselves from attacks from ourselves? perhaps at some point the medications will stop the invasion by our own immune system on us, but all the time? no! i guess my disappointment at its best is when i am NOT treated for RA at all by my rheumy, and my fibromyalgia has been left to my anaesthetist and psychiatrist to handle. i have nothing against my passive-aggressive (which explains my seronegativity) immune system, nor do i have anything to quell inflammation that causes me so much pain.
simply put once and again, i am afraid. i am frightened by the prospect that my state of wellbeing (only talking about physical) is in a precarious and unpredictable position that i cannot control.
i was triggered and frightened back in July regarding this issue yes. but this time’s was too much to handle. i was so broken. and lost.
so i desperately found ways to heal. physically heal. like a wound that has to heal. like a bruise that has to dissipate. and i did. in the wrong way.
to heal is to restore health to an otherwise diseased state.
i have to live with it and understand that i have RA and fibromyalgia, and that it will never go away. i have a dilated left ventricle that might heal. i have a funny stomach that won’t empty. and my depression and bulimia are something i might recover from.
but i guess for now, for whatever reason that might trigger me, be it doctors, flares (symptoms etc), i just have to KEEP CALM.
October 4, 2014
i got hurt. again.
perpetrator: me, and indirectly, words from my rheumy.
i didn’t mean for it to happen, honest to God. recovery is difficult. support is little. triggers aplenty. i can’t switch it off. i tried my best. i gave myself a long time-out of almost 12 hours.
but alas, my best is NOT ENOUGH.
now that it has happened, i feel calmer. it was that catharsis. i have no further intentions of doing any more things. only guilt engulfing me right now.
i’m sorry, not to anyone. only to myself and dear God. oh, and my boss. he absorbed the exorbitant costs of the repair.
there is never a time i don’t regret it. people ask me “but why Steph? why do you do it then?”. this is not something any person can fathom just like that.
to be in the psyche of person with a history of severe depression with severe self-harm tendencies, it demands a lot of understanding and empathy.
let’s just say i was drowning and it was my life buoy.
i’m ok, and i’m fine. never been better. if you’ve read this, please remember, words are like daggers. be careful with them.
October 1, 2014
1 day later, i’m upset.
- despite my sub-acromial steroid injections, rheumy did tell me that my shoulder pain might really just be trigger points- can you see how fibromyalgia is a convenient diagnosis here? i said nothing to argue; it’d be futile. she’s the rheumy, while i’m the patient. she thinks i’m doing very well globally in terms of RA. so i guess the only joints hurting must be to do with fibro then?
- while Dr C thinks a lot of my back pain and fibromyalgia pain is derived from my sacroiliac joints and recommends to inject them, rheumy doesn’t think so. she has never thought of it for me, because sacroilitis is very rare in RA. but can’t i be an exclusion? this has bothered me since 2009 till now and it has not yet been addressed until i saw Dr C.
- and why do i questioned so much when i say lithium prolongs the QT interval if taken with ALL NSAIDs except sulindac? it’s been checked to death by several pharmacists, so why be so insistent? if i could take Celebrex or Arcoxia, i’d gladly take them and not start to consider if i should go on steroids. i’m that desperate. Dr C didn’t believe me too until he checked it himself. so now rheumy will ask the pharmacists herself.
- i get peeved, even if it is with kind intentions, when it is said i am on a lot of pain medications. IT’S BECAUSE I’M IN A LOT OF FUCKING PAIN that nobody can help me with hello. stop commenting. i’d love very much not to take all these painkillers. but i’ll keel over in pain if i don’t.
- then one whole long list of bloods are being ordered for me when i’m not on any DMARDs. i’d fully understand if i’m on MTX and/or SSZ. but I AM NOT. so like i said in my last post, i’m not keen on doing them!!! whatever for! maybe my Vitamin D levels and ESR. but my ALT, AST, Albumin, Creatinine, full blood count, or even ferritin(when it’s so normal already!), no fucking way.
- we spent 40 minutes during our consult in total including the injections. but she forgot to prescribe the most important tramadol and muscle relaxant. she last prescribed them to me!!! all i could remember was pregabalin because it’s expensive in private practice, and even for this i had to run back to ask the nurse to get her to write a script for me. but it’s only this morning that i remembered i was running out of the most important tramadol and Myonal/Anarex.
i wrote an email to rheumy (i sometimes do that), telling her why i was so quiet yesterday, and explaining to her that i was not more depressed than usual. i was a little glad i wrote that email. but now i still feel like shit. maybe, you know, it’s not my rheumy.
the problem lies with RA and fibromyalgia. if these don’t exist in the first place, i think all would be well and dandy.
September 30, 2014
i saw my rheumy today ( if you need a refresher on what last transpired with her, here). what started like a probably good day, didn’t turn out so good after. i was in pain, i was nervous, i had so many things i wanted to accomplish inside the consultation room with her. i also remembered that i had an MRI to be done later that day and was afraid of having to lie flat on my back for 1.5 hours. i popped oxycodone and a metoclopramide while waiting to see her. despite all my angst and spitefulness to her since that post, i was in no mood to go into the consultation room to confront her, nor even put up a front and act like i’m all ok (the side she always sees).
or perhaps the oxycodone was also just making me a little wonky.
with her cheery “HARLO STEPHANIE! How are you?”, i looked down and whispered to her “hmm not too good?”. she tried getting some updates from me regarding treatment from Dr S, and then i told her about Dr C. we bounced back on forth about medications. She is adamant on Celebrex/Arcoxia. I said NO NO NO. Lithium and them will prolong my QT interval. Not fun. She’s not the only doctor who finds it hard to believe that sulindac is the only NSAID possible. She wants to check it out herself. She checks me out- my joints- and as usual i tell her “i’m all good today”, except that my nerve blocks are wearing off and i can feel my shoulders hurt again. I told her what she already knew- nerve blocks are not the way to go if there’s already inflammation- it’ll still be there and i could hurt my joints. she examined my shoulders closely and thinks it’s probably bursitis. and FINALLY in so many years, she offered to give me sub-acromial injections with triamcinolone bilaterally. i literally heaved with relief.
throughout our conversation, she kept asking me why i seem so down. she said that i’m “usually very BUBBLY” (her words, not mine), but i’m different today. i couldn’t give her an answer. i couldn’t even find the courage the tell her that i almost didn’t see her today because i would already have sacked her. but i told her that i was affected by her phone call and the whirlwind after that. she asked about my progress with recovery- i said i’m stretching appointments with Dr S to 3 weeks apart which is better now, but she said even 3 weeks is quite close together. -_-” she asked about my GI issues. i told her my emptying is still very slow, but at least i don’t vomit undigested food like a merlion anymore. isn’t it a duh. i take tramadol every damned day.
she tried guessing if all my painkillers are suppressing and affecting my affect. i said i didn’t think so. then she told me ONE saving grace- “you look like you’ve lost weight. have you not been eating? or have you been (purging)?” i didn’t know what to tell her. i was gleeful on the inside, but i contained myself and i said “erm i’ve not been eating much?” she reckoned it was from my pain. i think she really wanted to know why i was so down. but i gave her no clue. nope. nuh-uh.
she gave me ergocalciferol 50,000IU twice a week for 8 weeks to top up my outrageously low Vitamin D stores. other than that i was given NO medications at all from her. can you imagine my dismay? in the end i had to beg her for pregabalin because Dr S’ clinic sells it so expensive. and then i forgot about tramadol and Myonal(eperisone) or Anarex. aargh. she gave me a list of bloodwork to do, which i have no interest in doing.
and then later she gave me my sub-acromial injections. the nurses who didn’t know me (of course) wanted to baby me when rheumy was going to insert the needle into my shoulder. they wanted to hold me hands, and then rheumy told them “it’s ok, she’s ok with it”. they did it for both sides. i’m glad rheumy told them that, and i’m happy she knew me enough to know i have good threshold. i don’t like to be babied with procedures unless i indicate my fear.
so. amazing. she stretched my appointment even further later. 4 months. fantastique. i kept quiet. perhaps by that time i’d think i wouldn’t need a rheumatologist anymore.
defense mechanism was in play today, retrospectively.
why should i share so much of my life with someone when i know i do that to get approval and acceptance? i’ve been doing that for 7 years, and where has that taken me? nowhere. in fact, when i face rejection from her, it’s a double, or even a triple whammy. her acceptance is inherently so important to me that when she rejected the notion that i needed RA treatment (in terms of restarting DMARDs etc), and when she spoke of this “illusion” that i am clinically in remission when it is deeply rooted in me that i have never been in one, i felt so angry that i cried and wept. i thought she abandoned me. i thought her words were ‘vulgar’. i wanted to sack her. i felt like i was at the end of the line in my rheumatology treatment. that is how much i cling onto her emotionally and psychologically.
i wanted to tell her today in my cheerfulness that i was accepted into Keele University. i wanted to tell her i’m studying EULAR’s Rheumatology Course. i wanted to tell her the number of days i am in recovery, that i’m still keeping count.
but i didn’t. i kept my distance. what would be the difference if i told her of all these? nothing.
i guess i’m starting to detach from her. i didn’t do it on purpose. i really wanted to be happy in front of her, but… i couldn’t. not after what happened.
but you know, she is still kind and loving to me. she told me to weigh the costs out. that yes i have to spend on seeing doctors and paying for treatments and all. but i have to balance it out because after all i am still young. i still need some money for myself. and perhaps a little money to enjoy myself. she spoke like a mother (she’s one, just that her boys are not so big), and i nodded my head. i knew what she meant. but in my current state of physical and mental health, it just doesn’t allow me.
so what say you?
i look at my medication list again, and other than my sub-acromial injections, i’m not being treated for my RA.
YAAAAAAAAAAAY. i’m so fucking psyched i’m gonna jump off the building.
September 29, 2014
had another 4 trigger point injections again today over my thoracic spinous processes. and i’m living with oxycodone every night. damn it.
oh dear God.
seeing rheumy tomorrow. i’m taking leave from work to see her, and i’m giving her one last chance. after that i’m gonna go get a MRI of my spine.
my pockets are bleeding.
September 26, 2014
It’s not even 2 weeks since my nerve blocks and the effects are wearing off. That means I can start to feel my shoulders hurting again.
And that’s just… Dismal…
September 26, 2014
i hope i did not frighten anybody putting a photo of my scars.
i did not put it up to ‘show it off’ to say, you know, “look this is how hurt i am!”, or that “this is how much i can do!”. that would be extremely insulting and disrespectful to myself and the people around me who are suffering as well.
i put it up to open up my shell, slowly but surely. start it off online first, then perhaps one day in real life.
this is the UGLY reality of someone who’s been to hell and back. this is the unspoken truth that nobody sees or talks about.
i sometimes call them my battlescars. but have i really fought a war? i wonder. for now, i can only muster the courage to tell people that i was “very sick”. or if i find myself a little humorous that day, i’ll just say that i went to fight a war.
perhaps it will take years of healing within, despite my exterior has already healed. i’ve had superficial scars, laceration scars, burn scars, stitch scars, word scars, keloidal scars, and i have scars upon scars. they say scars themselves are weaker than skin. are they? and some scars from which wounds which were very bad that are numb now. they don’t feel touch anymore.
i don’t know.
i guess, like i said in one of my posts, when daggers come my way, love heals yes. but haemostasis takes time. the latter is done. the former has to begin.
love will heal, Steph.